Find an Attorney Archive - Special Needs Alliance

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This issue of the Voice® is written by SNA Public Policy Advisor Brian Lindberg, Vice President of Health and Aging Policy with Healthsperien LLC in Washington, DC.

We all know the real estate maxim, Location, Location, Location. But I am a public policy advisor, not a realtor, so my maxim is Relationships, Relationships, Relationships!

Advocacy is an ongoing process based on relationships between policymakers, advocates, issue experts, and concerned citizenry. As SNA members, our expertise in disability and aging law and our duty to our clients require us to be aware of challenges that affect our clientele and our profession. We need to ensure that systems and policies are responsive and effective for our clients, their families, and our communities. That is why the SNA has worked to develop a public policy strategy. Our strategy has enabled us to make positive contributions to special needs law and policies at the federal level. For example, the SNA advocated for and influenced provisions of the ABLE Act, the Special Needs Trust Fairness Act, SECURE and SECURE 2.0, to name recent accomplishments.

These accomplishments were made possible by the sustained action of SNA members, especially those who serve on the Public Policy Committee. However, you don’t have to be an SNA member to have a relationship with your elected officials. Below are a few guidelines to keep in mind as you start rolling your advocacy ball. In addition, SNA has several helpful resources on its website under the Public Policy tab.

You have the right as a citizen to speak to your elected representatives
You can meet with your representative or senator in the district (locally) or in Washington, DC, at their Capitol Hill office.
Remember, these are not high-pressure meetings, but simply a chance to introduce yourself, your work, and your perspective to the people representing you in Washington. A positive relationship with policymakers on the Hill can help the SNA advance its policy priorities and improve the lives of our clients.
Prepare a brief “elevator speech” in which you describe your area of expertise, who you or your clients are, and your perspective.
Offer one or two stories to bring your clients to life for the members of Congress and the staff in your meeting.
If you are discussing a specific piece of legislation, point out how the legislation addresses the problem you and your client are facing. Emphasize that a solution exists; a credible solution helps elicit support from the legislator for your issue.
Use the SNA talking points to help you explain the legislative proposal.
Be ready with the “ask”: We often ask members of Congress to co-sponsor the legislation we support.
Ask the person with whom you meet about their priorities and work in the disability and health areas.
Thank the person for their time and offer to be available as a resource in the future. Leave the SNA one-pager and your business card with the office.
Follow up promptly with an email with any information you offered to provide. Also, if the legislation in question develops, such as being referred to a committee or a hearing, let the legislative office know.

My Relationships, Relationships, Relationships maxim was amply confirmed for us at the SNA’s Hill Day this March in Washington, DC. The Hill Day coincided with the SNA’s annual Spring meeting. Many of our members participated in the Hill Day, which involved a webinar and in-person training, appointments set up beforehand, and a folder of materials for participants and “leave behind” materials for Hill offices. The folder included the following resources:

SNA Brochure
Supporting Individuals with Disabilities One-pager
DAC Fairness Act One-pager
DAC Fairness Act Talking Points
Hill Visit Outline
Capitol Hill Map

Here is a sample of comments from SNA Members who were Hill Day participants:

It was a very positive experience; I definitely recommend continuing. Staff seemed grateful for the info and to know that we were available as a resource on special needs.

Staffer looking for Republican interest in cosponsoring bill. Please contact her directly with GOP support.

I met with staff whose mom was a special ed teacher so she’s familiar with the disability community.

Staff were surprised and grateful to learn about specific programs that would be unavailable to persons with disabilities because of their CDB/DAC payments.

Member requested real person data and stories.

The staffer expressed concern about the financial burden on the state (Medicaid) as a result of the legislation. We explained that the legislation is likely revenue neutral.

That was such an enriching experience!

Following Hill Day, a member of Congress from Michigan expressed interest in taking the lead in introducing our Disabled Adult Child (DAC) Fairness Act in the House of Representatives. In addition, the Senate Finance Committee investigative counsel expressed interest in the bill. This is good news! We are thrilled with our progress due to Hill Day and hope to report on this soon.

This article is provided by SNA member Dori J. Dixon of Southpoint Estate Planning in Durham, North Carolina. Her firm specializes in special needs planning, elder law, guardianships, wills and trusts, Medicaid, and estate administration.

Earlier this year, I joined fellow members of the Special Needs Alliance in Washington, D.C. to meet with our Senators and Representatives to discuss the Childhood Disability Benefit Fairness Act. The Special Needs Alliance has crafted a legislative solution to a significant problem facing disabled adult children.

The Childhood Disability Benefit Fairness Act addresses the issue where disabled adult children are denied crucial Medicaid and related medical benefits because they never received SSI before becoming eligible for Social Security’s Childhood Disability Benefit (CDB) (formerly Disabled Adult Child or DAC benefit).

Benefits for Individuals with Disabilities

Supplemental Security Income (SSI) is a means-tested financial benefit for individuals who are unable to work due to disability. In 2025, individuals can receive up to $967 per month in SSI benefits to cover their food and shelter expenses. Individuals who qualify for SSI automatically receive Medicaid to help with their medical expenses. Most children with disabilities do not qualify for SSI when they are under the age of 18 due to their parents’ assets and income. However, once the disabled individual attains the age of 18, the parents’ income and assets are no longer counted and the individual can become eligible for SSI and Medicaid benefits.

Special Benefit for Individuals Disabled Before Age 22 - the Disabled Adult Child

In addition, the child may be eligible to collect the Child Disability Benefit, which is tied to their parents’ Social Security earnings. The Child Disability Benefit is an insured benefit under Title II of the Social Security Act and is one of three types of benefits collectively known as Social Security Disability Insurance (SSDI) benefits. An individual who becomes disabled prior to age 22 and continues to be disabled can receive the Child Disability Benefit when his or her parent retires, becomes disabled themselves, or upon a parent’s death. The child can receive up to 50% of the parent’s full retirement or disability benefits and up to 75% of the parent’s basic Social Security benefit upon the parent’s death. In addition, a disabled adult child can receive Medicare to help cover the cost of his or her medical care.

Once a disabled adult child begins receiving the Childhood Disability Benefit, they typically lose SSI benefits because the income from the Childhood Disability Benefit exceeds the SSI benefit. However, recognizing that disabled adult children will likely never be able to be self-supporting through no fault of their own, Section 1634 of the Social Security Act (42 USC 1383c(c)) provides that an individual who receives SSI before receiving Childhood Disability Benefits can have his or her Childhood Disability Benefit income disregarded for Medicaid qualification. This allows the disabled adult child to receive the higher CDB benefit, Medicare for their primary health insurance, and Medicaid to cover those services not covered by Medicare, such as supported living services that can make it possible for a disabled adult child to live more independently in the community.

But Wait…What’s the Problem?

This all sounds great, but unfortunately, members of the Special Needs Alliance have discovered that the current statutory requirement creates an unintended trap for individuals whose parents died young, are older and retired, or who did not apply for SSI before the adult child began receiving Childhood Disability Benefits.

Take this example of two disabled children from the same family:

Jill is 23 years old. She was born with Down syndrome and qualified for SSI benefits and Medicaid when she turned 18. Her mom passed away when Jill was 19 years old and Jill began receiving the Childhood Disability Benefit and Medicare. Jill no longer receives SSI because the Childhood Disability Benefit income is greater than the SSI benefit. However, she is able to disregard the CDB income for purposes of Medicaid eligibility and therefore she can keep her full Medicaid benefits without having to “spend down” her monthly income on medical expenses.
Jill has a sister, Jamie, who is 21 years old and also has Down syndrome. Jamie was 17 when Jamie and Jill’s mother passed away. Since she was not yet 18, she did not qualify for SSI because her parents’ income and assets prevented her from being eligible. Jamie has never received SSI, but, like her sister, Jill, she qualified for Childhood Disability Benefits. Unfortunately, unlike her sister, Jamie’s disability income is not disregarded and she must spend this income on her medical expenses before she can gain access to Medicaid benefits.

Jill and Jamie are similar in just about every way, but Jamie is able to keep less of her disability income just because her mom died before Jamie turned 18 and applied for SSI.

We don’t believe this was the intent of 42 USC §1383c(c), which aims to ensure that individuals with disabilities who lose SSI and Medicaid because they begin receiving CDB payments can continue to maintain their eligibility for Medicaid benefits. Unfortunately, the law as currently written creates an unintended trap for individuals with disabilities whose parents die young, are older and retire, become disabled themselves, or fail to apply to SSI in time. Depending on the state, these individuals, through no fault of their own, may not be able to afford or receive Medicaid benefits due to circumstances beyond their control.

That’s Not Fair…How do We Fix This?

The Special Needs Alliance is requesting an amendment to 42 USC 1383c to read:

Any individual entitled to child’s insurance benefits under section 402(d) of this shall be treated for purposes of subchapter XIX as receiving benefits under this subchapter so long as he or she would be eligible for benefits under this subchapter in the absence of such child’s insurance benefits.

This correction will allow all disabled adult children to have their Childhood Disability Benefit income disregarded for purposes of Medicaid eligibility regardless of whether they were receiving SSI prior to receiving CDB benefits, so long as they would have been eligible for SSI, but for the CDB income.

If this issue is important to you, I urge you to reach out to your Senators and Representatives to let them know about this issue and the proposed correction. For more information on the Special Needs Alliance’s advocacy around this issue and to download a one page advocacy tool that you can provide to your Senators and Representatives, click HERE.

About this Article: We hope you find this article informative, but it is not legal advice. You should consult your own attorney, who can review your specific situation and account for variations in state law and local practices. Laws and regulations are constantly changing, so the longer it has been since an article was written, the greater the likelihood that the article might be out of date. SNA members focus on this complex, evolving area of law. To locate a member in your state, visit Find an Attorney. Requirements for Reproducing this Article: The above article may be reprinted only if it appears unmodified, including both the author description above the title and the “About this Article” paragraph immediately following the article, accompanied by the following statement: “Reprinted with permission of the Special Needs Alliance – www.specialneedsalliance.org.” The article may not be reproduced online. Instead, references to it should link to it on the SNA website. Download PDF [post_title] => Childhood Disability Benefit Fairness Act [post_excerpt] => The Special Needs Alliance has crafted a legislative solution to a significant problem facing disabled adult children. [post_status] => publish [comment_status] => open [ping_status] => closed [post_password] => [post_name] => childhood-disability-benefit-fairness-act [to_ping] => [pinged] => [post_modified] => 2025-05-09 10:29:45 [post_modified_gmt] => 2025-05-09 14:29:45 [post_content_filtered] => [post_parent] => 0 [guid] => https://www.specialneedsalliance.org/?p=735404 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw ) [2] => WP_Post Object ( [ID] => 724032 [post_author] => 494 [post_date] => 2025-04-08 11:33:51 [post_date_gmt] => 2025-04-08 15:33:51 [post_content] => This article is provided by Andrea Metcalf, Director of Trust Services for Legacy Enhancement Trust in Monaca, Pennsylvania. Legacy Enhancement is a supporter of the Special Needs Alliance and a Sponsor for our member meetings. A critical decision for families establishing a Special Needs Trust (SNT) is the choice of trustee. While some may appoint a family member, many opt for a professional trustee due to the specific expertise required in managing these trusts. What is a Professional Special Needs Trust Trustee? A professional special needs trust trustee can be an individual or a corporate entity, such as a trust company or nonprofit organization, experienced in overseeing special needs trusts. The trustee’s primary role is to administer the trust and ensure funds are used to enhance the beneficiary’s quality of life without affecting their eligibility for essential needs-based benefits. Common duties include: Financial Management and Investment Oversight: A professional trustee ensures that the trust’s funds are managed wisely. They often collaborate with investment advisors to grow the trust’s assets responsibly, ensuring long-term sustainability. Legal and Regulatory Compliance: Special needs trusts must adhere to strict legal requirements. The professional trustee ensures compliance with federal and state laws, including filing necessary tax returns and maintaining the trust’s good standing. Disbursement of Funds: Trustees handle disbursements carefully, ensuring they do not jeopardize the beneficiary’s access to critical government assistance like SSI and Medicaid. SNT funds can cover expenses that improve the beneficiary’s quality of life, such as medical care not covered by Medicaid, adaptive medical equipment, home and vehicle modifications, and recreation. Record Keeping and Reporting: Trustees maintain detailed records of all trust transactions, providing necessary reporting to relevant parties, including family members or legal guardians, courts, and government agencies. Advocacy and Coordination of Care: Many professional trustees also act as advocates for the beneficiary. They may coordinate with social workers, care managers, and medical professionals to ensure the beneficiary receives the best possible care and support. Why Choose a Professional Trustee? Families often select professional trustees for their specialized knowledge in benefit programs, tax laws, and financial planning. Additionally, professional trustees alleviate the administrative burden on family members who may lack the necessary time or expertise. Importantly, professional trustees provide continuity, ensuring stability for the trust over time. Choosing the right trustee is one of the most important decisions a family can make to secure the future of their loved one. Before deciding, ask your attorney or settlement consultant for a list of reputable professional trustees. [post_title] => Understanding the Role of a Professional Special Needs Trust Trustee [post_excerpt] => A critical decision for families establishing a Special Needs Trust is the choice of trustee. Many opt for a professional trustee to manage these trusts. [post_status] => publish [comment_status] => open [ping_status] => closed [post_password] => [post_name] => understanding-the-role-of-a-professional-special-needs-trust-trustee [to_ping] => [pinged] => [post_modified] => 2025-04-08 11:49:48 [post_modified_gmt] => 2025-04-08 15:49:48 [post_content_filtered] => [post_parent] => 0 [guid] => https://www.specialneedsalliance.org/?p=724032 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw ) [3] => WP_Post Object ( [ID] => 721442 [post_author] => 494 [post_date] => 2025-04-02 13:42:08 [post_date_gmt] => 2025-04-02 17:42:08 [post_content] => This issue of The Voice® was written by SNA member W. Seth Todd of Yussman Special Needs Law & Wyatt Estate Planning in Louisville, KY. His firm serves all of Kentucky and specializes in special needs law and estate planning. It’s that time of year again. If you are the trustee of a special needs trust, you’re preparing to have the CPA file the necessary tax returns. As you do that, there are a few things that are useful for a trustee to understand. First, there are two primary types of special needs trusts: self-settled trusts and third-party trusts. Both provide financial benefit to a person with disabilities, but they differ in whose assets fund the trust and in how the funds are managed. The tax treatment of these trusts can also vary significantly, and understanding these distinctions is essential for anyone involved in managing a special needs trust. For example, if a Taxpayer Identification Number (TIN) is obtained, the trustee may need to file Form 1041, the U.S. Income Tax Return for Estates and Trusts, which is used by trustees and other fiduciaries to report income to the federal government. In states that have an income tax, an additional state income tax form may also be required. Second, it’s important to know whether the trust is a grantor trust or a non-grantor trust. Grantor Trust: If the person who funds the trust retains certain powers over the trust, such as the ability to change the trustee, revoke the trust, or modify its terms, it may be classified as a grantor trust. In this case, the individual who funds the trust is responsible for paying taxes on any income generated by the trust. Non-Grantor Trust: If the trust is irrevocable and the person who funds the trust does not retain significant control over the assets or trust administration, the trust itself will be taxed as a separate entity. The trust will file its own tax return, and any income generated by and retained in the trust will be taxed at the trust’s rate, which can be much higher than an individual’s tax rate. If the trust distributes income to the beneficiary, the beneficiary will be required to pay taxes on that income. Taxation of Self-Settled Trusts A self-settled special needs trust, also known as a first-party special needs trust, is a trust established with assets that belong to the individual with a disability. These are often assets received as an inheritance, a personal injury settlement, or another financial windfall. This type of trust must include a provision requiring that Medicaid be repaid on the death of the beneficiary or at the earlier termination of the trust. The IRS considers the person with a disability to be the owner of the trust’s assets, which means that the income generated by the trust is taxed at the beneficiary’s income tax rate. Therefore, the trust’s income, such as interest or dividends, may be reported on the individual’s personal tax return. The trust itself is considered a grantor trust, as it is funded with the beneficiary’s assets; however, the beneficiary likely does not retain some of the other powers typically associated with grantor trusts. Practice varies on whether a separate TIN must be obtained when a self-settled trust is established. If a TIN is not obtained and the Social Security number of the grantor/beneficiary is used, the beneficiary simply reports the income on their personal return, and an additional Form 1041 is not required. If a TIN is assigned to the trust, then the trustee will file an informational Form 1041 with a grantor trust information letter, which provides: (1) the beneficiary’s name, social security number, and address since the income is taxable to the beneficiary; (2) a detailed description of the taxable income; and (3) a detailed description of any deductions or credits that are applicable. Each of these items is then carried through and added to the personal income tax return of the beneficiary. Taxation of Third-Party Trusts A third-party special needs trust is one that is established by someone other than the beneficiary, typically a parent or grandparent. In addition, the trust is funded with assets belonging to a third party, such as gifts or a parent’s estate, and is designed to benefit the individual with special needs. Depending on when and how this trust is funded, it may be either a grantor trust or a non-grantor trust. If the trust is funded during a parent’s lifetime and the parent retains the grantor powers (e.g., the trust is revocable or the parent retains significant control), any income generated in the trust will be taxed to the parent at his or her individual income tax rate. If the trust is a non-grantor trust, a Form 1041 must be completed for the trust. If the trust qualifies as a Qualified Disability Trust (QDT) then it will have a $5,100 exemption (in 2025), meaning that up to $5,100 of income is not taxed at the trust rates. If it is not a QDT, then it will instead have a $100 exemption. To qualify as a QDT, the trust must meet these requirements:

The trust must be irrevocable.
The trust must be established for the sole benefit of a person with a disability.
The beneficiary must be under the age of 65 at the time the trust is established.
The beneficiary must have a disability as defined by the Social Security Administration that causes the beneficiary to be unable to engage in substantial gainful activity because of a physical or mental impairment that is expected to last 12 months or more or result in death.

Given the compressed income tax brackets that non-grantor trusts are subject to, the QDT designation provides some reprieve. The ordinary income tax brackets for non-grantor trusts in 2025 are:

$0 - $3,150: 10%
$3,150 - $11,450: 24%
$11,450 - $15,650: 35%
$15,650 and above: 37%

Non-grantor trusts are allowed to take deductions for things such as tax preparation, trustee fees, and the most helpful, income distributions. When a non-grantor trust distributes income to or for the benefit of a beneficiary, the trust may deduct that income on Form 1041, which results in a Schedule K-1 tax form to the beneficiary. The beneficiary will claim the income on his or her personal tax return since the funds were distributed out of the trust for the benefit of the beneficiary. Because the income tax brackets for individuals are much larger and an individual taxpayer can claim the standard deduction ($15,000 for a single filer in 2025), it is often advantageous to report the distributed income on the beneficiary’s income tax return where no tax may be due instead of on the trust tax return. In conclusion, special needs trusts are complex legal entities and managing them correctly requires careful planning. Trustees should consult with an attorney or tax advisor who specializes in preparing special needs trust tax returns to help ensure that taxes are managed efficiently and in accordance with IRS guidelines and state law.

About this Article: We hope you find this article informative, but it is not legal advice. You should consult your own attorney, who can review your specific situation and account for variations in state law and local practices. Laws and regulations are constantly changing, so the longer it has been since an article was written, the greater the likelihood that the article might be out of date. SNA members focus on this complex, evolving area of law. To locate a member in your state, visit Find an Attorney. Requirements for Reproducing this Article: The above article may be reprinted only if it appears unmodified, including both the author description above the title and the “About this Article” paragraph immediately following the article, accompanied by the following statement: “Reprinted with permission of the Special Needs Alliance – www.specialneedsalliance.org.” The article may not be reproduced online. Instead, references to it should link to it on the SNA website. Download PDF [post_title] => Taxation of Special Needs Trusts: An Overview [post_excerpt] => [post_status] => publish [comment_status] => open [ping_status] => closed [post_password] => [post_name] => taxation-of-special-needs-trusts-an-overview [to_ping] => [pinged] => [post_modified] => 2025-04-02 13:42:08 [post_modified_gmt] => 2025-04-02 17:42:08 [post_content_filtered] => [post_parent] => 0 [guid] => https://www.specialneedsalliance.org/?p=721442 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw ) [4] => WP_Post Object ( [ID] => 714825 [post_author] => 494 [post_date] => 2025-03-18 15:47:07 [post_date_gmt] => 2025-03-18 19:47:07 [post_content] => This issue of The Voice® was written by SNA member Victoria Sulerzyski of Bowie & Jenson, LLC in Towson, Maryland. Her firm serves all of Maryland and focuses on special needs planning, elder law, guardianship, and estate planning and administration. Special needs planners provide expert legal planning and advocacy to and on behalf of families with loved ones who have special needs. They have in-depth knowledge of government benefits, regulations, and laws, pending legislation, and the legal expertise to uniquely make a huge difference in families’ lives. The passion of special needs planners is the key to their work. For those of us who are also parents of a special needs child, that passion is as unique as the lives that are served, and we bring real-life experiences to the planning process and a deep understanding of the daily issues. Parents with special needs children go through an emotional process that continues throughout the child’s lifetime. This process starts with the diagnosis stage, which triggers a repetitive cycle that may look like this: Why Me? → Denial → Anger → Guilt→ Depression → Accepting → Grieving → Adapting to Daily Living → Finding Joy and Peace (the “emotional cycle”). Special needs planners recognize that it is quite common for parents to go through this cycle at different stages of their child’s life, depending on what is happening to the child and the family. A special needs planner who pinpoints which part of this cycle a client is in often helps shape a family's short-term and/or long-term planning. The role of an attorney for a family with a special needs child is to guide parents through the current and future needs of the child, often providing unique approaches and planning options based on the family’s goals and where they are in the emotional cycle. Special needs planners recognize this Emotional Cycle and understand that parents of a child with special needs feel that each day they are caretakers, chaos managers, therapists, nurses, paramedics, insurance professionals, durable medical equipment experts, community planners, advocates, special education experts, financial advisors, lawyers, adult services experts, and possess a keen skill to change lanes at the drop of a hat. Understanding the challenges parents of a child with special needs face and the best way to incorporate assistance from community partners, government agencies, and experts in the child’s special needs requires knowledge of all the roles parents are wearing. Parents will find that engaging a special needs planner will be comforting and that the complex intricacies of the special needs puzzle can result in a completed puzzle while also feeling relief that they are supported throughout the emotional cycle. Overall, special needs planners serve as a safe beacon in the storm. Parents are essential partners in planning for their children's current and future needs. Parents know best the “secret sauce” that unlocks their child’s potential and strengthens their self-esteem. Although dreams for their child may differ from what parents initially expected, a special needs planner can help meet their current dreams with appropriate planning and resources. After all, “alone we can do so little; together we can do so much” — Helen Keller.

About this Article: We hope you find this article informative, but it is not legal advice. You should consult your own attorney, who can review your specific situation and account for variations in state law and local practices. Laws and regulations are constantly changing, so the longer it has been since an article was written, the greater the likelihood that the article might be out of date. SNA members focus on this complex, evolving area of law. To locate a member in your state, visit Find an Attorney. Requirements for Reproducing this Article: The above article may be reprinted only if it appears unmodified, including both the author description above the title and the “About this Article” paragraph immediately following the article, accompanied by the following statement: “Reprinted with permission of the Special Needs Alliance – www.specialneedsalliance.org.” The article may not be reproduced online. Instead, references to it should link to it on the SNA website. Download PDF [post_title] => Special Needs Planners: A Safe Beacon in the Storm [post_excerpt] => [post_status] => publish [comment_status] => open [ping_status] => closed [post_password] => [post_name] => special-needs-planners-a-safe-beacon-in-the-storm [to_ping] => [pinged] => [post_modified] => 2025-03-18 16:32:41 [post_modified_gmt] => 2025-03-18 20:32:41 [post_content_filtered] => [post_parent] => 0 [guid] => https://www.specialneedsalliance.org/?p=714825 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw ) [5] => WP_Post Object ( [ID] => 711514 [post_author] => 494 [post_date] => 2025-03-10 16:50:55 [post_date_gmt] => 2025-03-10 20:50:55 [post_content] => This article is provided by SNA member Victoria Blair Struse of Fletcher Struse Fickbohm & Wagner PLC in Tucson, Arizona. The firm specializes in estate and trust planning and administration, guardianship and conservatorship. My brother is autistic and is in his 50s. He wasn't formally diagnosed until about ten years ago, for many reasons, but primarily because autism wasn't well understood years ago. His teachers would label him as "slow" and "awkward," suggesting that he just needed more discipline. He endured bullying for being different. Despite being exceptionally book smart — often earning the highest grades and eventually obtaining a master's degree — he struggled tremendously in work environments. In the workplace, my brother would become overwhelmed and confused, unable to independently follow tasks. He often got in trouble for having no filter. The pattern was heartbreakingly consistent: each time he found a new job; he would be fired within a few months for one reason or another. After so many terminations, finding new employment became impossible. Like many people with disabilities, he has never officially been determined “disabled” by the Social Security Administration. His school records are long gone, and medical records are scarce because he rarely went to the doctor. Today, he relies on Medicaid for his healthcare coverage. As states consider implementing work requirements for Medicaid recipients, his situation highlights why these potential changes matter for thousands of families. Understanding what's being proposed, who might be exempt, and what documentation could be required will be crucial — especially for people who, like my brother, don't have an official disability determination. Here's what families need to know about these potential requirements and their potential impact. Understanding Current Medicaid Work Requirements The landscape of Medicaid coverage is shifting. Previously, the Center for Medicaid and Medicare Services approved 13 state work requirement proposals, though most weren't implemented due to legal challenges and the COVID-19 pandemic. As states face potential funding adjustments, they are likely to reconsider these requirements as a way to manage their Medicaid programs. Work requirement proposals have included:

A minimum of 20 hours per week or 80 hours per month of work for beneficiaries aged 18-64
Varying exemption policies for certain groups, such as people with disabilities, caregivers, and parents of young children
Different standards for proving disability or exemption status

I've looked closely at these proposals because of my brother's situation. Many of them exempted people based on the Social Security Administration’s determination of disability. Others required proof of temporary or long-term disability benefits. Some of the proposals provided for an exemption if the person’s treating physician wrote a letter to state that the person was unable to work. Many of these requirements would leave my brother, and many others like him, vulnerable. The Reality of Medicaid Recipients It's important to understand that most Medicaid recipients are already productive members of their communities. A 2023 survey revealed that 71% of working-age adults on Medicaid are either working (full or part-time) or in school. Another 12% are caregivers for others. But these statistics don't capture people like my brother, who want to work but face invisible barriers. Critical Challenges for People with Disabilities Through my brother's experience, I've seen firsthand how the system can fail those who don't fit neatly into bureaucratic categories. Several significant issues exist:

Documentation Barriers: Many people lack the extensive documentation required for an official disability determination, especially if their condition wasn't well understood or documented in their youth.
Qualification Gaps: Some individuals don't qualify for SSA disability determination because they lack sufficient work quarters or don't meet financial criteria for Supplemental Security Income.
Medical Verification: While some states may accept physician letters verifying inability to work, many healthcare providers aren't typically equipped to evaluate patients for work capability.
Limited Alternatives: Without SSA disability determination, Medicare isn't available. While the Affordable Care Act plans exist, they often aren't feasible for people needing extensive medical care, given their high monthly premiums.

Why This Matters to All of Us This is a critical time for the Medicaid system, as potential funding changes could affect millions of people's access to necessary medical care. With states potentially facing difficult decisions about program management, the stakes are incredibly high for families like mine. I share my brother's story because I know there are many others facing similar challenges — people who don't fit neatly into the system's categories but desperately need healthcare coverage. If you're concerned about maintaining healthcare benefits for those in need, it’s wise to prepare in advance — and consider contacting your local congressional representatives to voice your concerns. Need help understanding how these changes might affect your family? Contact a Special Needs Alliance attorney in your area. Download PDF [post_title] => Understanding Medicaid Work Requirements: What Families Need to Know [post_excerpt] => The landscape of Medicaid coverage is shifting. Understand how potential Medicaid work requirements could affect healthcare access for people with disabilities. [post_status] => publish [comment_status] => open [ping_status] => closed [post_password] => [post_name] => understanding-medicaid-work-requirements-what-families-need-to-know [to_ping] => [pinged] => [post_modified] => 2025-03-11 14:20:56 [post_modified_gmt] => 2025-03-11 18:20:56 [post_content_filtered] => [post_parent] => 0 [guid] => https://www.specialneedsalliance.org/?p=711514 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw ) [6] => WP_Post Object ( [ID] => 702531 [post_author] => 494 [post_date] => 2025-02-17 13:42:14 [post_date_gmt] => 2025-02-17 18:42:14 [post_content] => This issue of The Voice® is written by Lisa Nachmias Davis, CELA, a partner in the New Haven, Connecticut firm of Davis O’Sullivan & Priest, LLC. If you’re reading this article and have a child or family member with special needs, you’ve probably already set up a third-party special needs trust (sometimes called a supplemental needs trust) and named it a beneficiary of your will or living trust. If not, you might first read some other Voice® articles, including Developing an Estate Plan for Parents of Children with Disabilities: A 15-Step Approach and Your Special Needs Trust (“SNT”) Defined. Your goal will typically be to leave assets that can benefit your family member with a disability without causing their loss of needs-based government benefits. Further, you will likely want to protect those assets at your family member’s death (or sometimes during their lifetime) from claims for Medicaid or other public benefits received. Finally, you do not want the trust's assets to be wiped out by taxes. The most important first steps are setting up the special needs trust (SNT) and preparing a will or trust that names the SNT as a beneficiary. But then you must decide which assets are to go into the SNT. What about your retirement plan or IRA? IRAs and retirement accounts may represent a significant portion of your total assets and appear to be a natural source of funding for your SNT. This article explains considerations when naming an SNT as the beneficiary of your IRAs and other retirement accounts. Coordinate the will, trust, and beneficiary designations The first thing to understand is that your will controls only assets in your name, not those with a beneficiary designation. For example, if you’ve named a beneficiary of your life insurance, the proceeds of your life insurance will pass to the beneficiary and won’t be controlled by the terms of your will. The same applies to joint tenancy accounts where the named joint tenant wholly owns the account after your death under a right of survivorship. The same is generally true of your IRAs and other retirement accounts if you name a specific beneficiary to receive the accounts upon your death. So, if your will leaves a share of your assets to an SNT intended for your child with special needs, but you have named your child with special needs as the beneficiary on your IRA beneficiary form (perhaps by naming all your children as equal beneficiaries), rather than specifying the child's trust, the IRA will pass directly to the child when you die, not to the SNT. Therefore, for optimal results, your beneficiary designations, will, and trusts must be coordinated. Problems naming trusts and estates as beneficiaries of retirement accounts When it comes to life insurance, you might choose to name your estate or revocable trust as the beneficiary, particularly if you have several children or other beneficiaries. That way, the proceeds can be divided into as many portions as the document specifies, with the share for your child with special needs passing to their SNT. However, unlike life insurance, IRAs and other retirement accounts are more complicated because they contain tax-deferred assets. Because IRAs and retirement accounts (other than Roth accounts) are made up of pre-tax dollars, the recipient of distributions from these accounts must pay income tax on every dollar received. If the account is large and distributed all at once or over a short period, each distribution will be large, and the tax bill will be correspondingly large. This is especially problematic due to the steep tax brackets paid by estates and trusts on income retained in the trust. For example, retained net income over $15,650 (for 2025) is taxed at the 37% bracket. Plus, any state income taxes may result in another 5-10% in tax. By contrast, the longer the payments can be stretched out, the smaller each year's payment, and the smaller the tax bill, not to mention leaving more in the account to grow tax deferred. Generally speaking, estates and ordinary revocable trusts won't be able to stretch payments out very far. While a trust or estate can reduce taxes by paying IRA distributions out to a beneficiary, who then pays tax at the beneficiary's much lower tax rate, this isn't likely the best approach for a beneficiary with special needs. Unfortunately, naming an estate or ordinary revocable trust as the beneficiary of an IRA can result in a quick required payout of the IRA and a high tax bill. Retirement account distribution rules: A Primer With a tax-deferred retirement account, the tax eventually comes due when the funds are withdrawn. There are two basic concepts used to determine how and when retirement accounts pay out: the required beginning date (RBD), which is the date when the owner has to take distributions and start paying taxes on them; and the required minimum distributions (RMDs), which are the required amounts that have to be taken each year. First, the RBD starts the distributions. Historically, the RBD for employer plans was when the person retired, or April 1^st after turning age 70½; and for IRAs, the RBD was April 1^st following the year the owner turned 70½. The RBD was changed to age 72 starting in 2020, and in 2023, it changed again to age 73, with an increase to age 75 for those born in 1960 or later. Second, the RMD is the amount to be distributed each year beginning with that RBD. To compute the annual amounts, the IRS in 2001 set up a “Uniform Lifetime Table” for account owners. (For boring historical reasons, this is based on the joint life expectancy of the owner and a hypothetical spouse ten years younger. Those who have even younger spouses have slightly more complex rules.) Required minimum distributions after the owner's death The distribution requirements change when the account owner or plan participant dies. Before 2020, it was possible to "stretch" the required minimum distributions over the beneficiary's life expectancy. However, in 2020, that all changed with the SECURE Act, along with additional changes in 2023 with SECURE 2.0. Until the IRS issued its final regulations in July 2024, there was some confusion about how the withdrawal rules applied, but most of those questions have been resolved. However, with all these changes, you may have heard different things from different people and seen different things online. With the SECURE Act, in general, for most (but not all) beneficiaries, the longest "stretch" payout allowed is now ten years (or for a minor, until age thirty-one). The exceptions do include beneficiaries who are disabled, which is why you are reading this article. Whether or not a trust can get the same treatment as a person with a disability depends on various factors. Here is how payout from a retirement account works. First, payout after death depends upon whether the death was before or after the RBD. Second, payout after death depends on whether there is a designated beneficiary. Third, payout after death now depends upon who that designated beneficiary is. Let's start where the owner dies before the RBD. The default rule in this situation is a five-year payout; nothing has to be paid out immediately, but all has to be paid out by Dec. 31 of the year, which is the fifth anniversary of death. This applies when there is no designated beneficiary, for example, if no beneficiary was named or the beneficiary was "my estate" or "my revocable trust." In contrast, if there is a designated beneficiary, the payout is ordinarily ten years. Even ten years isn't very long, but there are exceptions for an eligible designated beneficiary (EDB). We'll get to these later. If the owner dies on or after the RBD, distributions are based on whether there is a designated beneficiary and who that is. Where there is no designated beneficiary, the default rule is that the remainder of the owner’s life expectancy (computed using the Single Life table) will determine RMDs. This is sometimes called the "ghost" life expectancy since it's based on the dead person's age. Sometimes, that's not so bad -- someone age 75 has a life expectancy of 13.4 years, but it may still be shorter than an EDB’s life expectancy. However, if someone who dies on or after the RBD has a designated beneficiary, there are two rules. First, annual distributions are still required because the deceased owner was already taking distributions, and the law says that the distribution method after death has to be "at least as rapidly" as the existing distribution method. (Between 2020 and 2022, a lot of people thought they were not required, so there are special penalty waivers for people who didn't take them at that time.) These annual distributions won't be based on the dead person's "ghost" life expectancy but on the designated beneficiary's life expectancy based on the Single Life Table, which has shorter life expectancies than were used to compute the owner's distributions. Second, the maximum payout is ten years unless the designated beneficiary is an EDB. For an adult designated beneficiary who takes the required distribution for each of the first nine years, there will be a balloon payment in year ten—a big payout and big taxes, usually. However, there are different rules if the designated beneficiary is an EDB. Eligible designated beneficiaries These beneficiaries are known as EDBs:

Spouse (the rules for spouses are beyond the scope of this article);
Person not more than ten years younger than account owner/participant (think sibling or friend);
Minor child of the owner (instead of ten years, substitute "age thirty-one"); and
Person who is "disabled" or "chronically ill."

We are most interested in EDB #4 -- the disabled or chronically ill beneficiary. For that EDB, the distribution can be over the beneficiary’s life expectancy, although this is computed according to the Single Life Table, which differs from the Uniform Lifetime Table used for account owners. The term "disabled" has the same meaning that Social Security uses: unable to engage in substantial gainful activity (SGA) for at least twelve years or, if ending sooner, in death. For 2025, SGA is $1620, more if the person is blind. The term "chronically ill" means unable (for an indefinite, lengthy period) to perform unassisted two or more activities of daily living. This preferential treatment for beneficiaries who are disabled or chronically ill may extend to SNTs, provided the trusts meet certain criteria. See-through trusts Before we look at distributions to an SNT, here are some basics about distributions to certain trusts. To get even the ten-year payout available for the average designated beneficiary, a trust has to be a "see-through trust," where (1) all the first- and second-line beneficiaries can be identified and (2) (with one exception) all are individuals. This has to be the case by September 30th of the year after death, or if the trust doesn't qualify, the Trustee can try to fix it by the due date if the law allows. These see-through trust rules apply to most trusts considered “accumulation” trusts. With an accumulation trust, the trustee has the discretion either to pay out or to retain in trust any IRA distributions the trustee receives. Most SNTs are accumulation trusts. A different type of trust called a “conduit” trust requires that all distributions from retirement accounts be paid out immediately to the beneficiary. For a conduit trust, only the conduit payee, the beneficiary receiving those distributions, is counted, even if a charity is the remainder beneficiary for whatever is left of the IRA at the conduit payee’s death. The second-line beneficiaries don't count. But this is unusual; most people do not create trusts to just pass the IRA money right out to the beneficiary, certainly not for their child with a disability. Even the ten-year rule for a "see-through" trust is not great for a large IRA. For example, if the account owner has a $1 million IRA, that would mean that $100,000 per year would have to be paid to the trust and subject to income tax if retained rather than spent on the beneficiary in the year of receipt. Most people who set up lifetime trusts for their beneficiaries do not intend for the beneficiaries to receive the trust funds over ten years. In this scenario, if $20,000 were paid out each year for the beneficiary's needs and $80,000 retained, the trust would likely pay over $27,500 in federal income taxes. How to ensure that a special needs trust gets better treatment Thanks to advocacy from the Special Needs Alliance and other disability groups, much better rules apply when it comes to trusts for individuals who are disabled or chronically ill. You can read this linked Voice® article for a discussion of this issue and the related advocacy by the Special Needs Alliance. First, the SECURE Act allows beneficiaries who are disabled or chronically ill to "stretch" payments from inherited retirement accounts over their actuarial life expectancies (not the ten-year rule, the five-year rule, or the ghost life expectancy). Someone age thirty has a fifty-five-year life expectancy! Second, the SECURE Act allows a trust for the "sole benefit" of a person who is disabled or chronically ill to stretch the distribution in the same way over that person's life expectancy. But the devil is in the details, and there was initial concern about whether certain SNTs would qualify. One concern was whether naming a charity as remainder beneficiary would cause the trust to fail, because a charity was not an individual, so it seemed the trust would fail the "see-through trust" rules. Another concern was about the many trusts that have "poison pill" provisions allowing the trustee to distribute trust funds to another, non-disabled person if the state threatens the disabled person’s benefits on account of the trust's existence. A third concern was about how to prove that the beneficiary was, in fact, an EDB in the first place, that is, whether a Social Security determination of disability was required. SECURE 2.0 and regulations issued in 2024 resolved these concerns. But, as is often the case, there is good and bad news. The first good news is that with SECURE 2.0, enacted in December 2023, Congress clarified that when it comes to the "see-through" trust rules, a charity that is a first-line remainder beneficiary of a trust for the sole benefit of a disabled or chronically ill person will be treated as if it did qualify as a designated beneficiary. The trust won't flunk the "see-through trust" rules. The second good news is that the July 2024 regulations clarify (indirectly) that a doctor's certification of disability may suffice when claiming disability. That was already the case for a "chronically ill" person, but the example in the regulations uses the definition of disability, not a chronic illness, when it describes getting a doctor's certification. The bad news is that the July 2024 IRS regulations did confirm the fear that the "poison pill" provision will prevent the SNT’s ability to take distribution over the beneficiary’s lifetime, at least unless it can be fixed. If the trust can, under any circumstances, make distributions during the disabled or chronically ill person's lifetime for the benefit of anyone who is not disabled or chronically ill, it won't qualify for this SNT treatment but will be stuck with the regular rules applicable to other types of trusts. That means the ten-year rule at best, but a charitable remainder beneficiary will also disqualify it from it (unless the trust can get fixed by September 30th of the year after the owner's death). The "Tweens" remain left out Unfortunately, if your child does not qualify as disabled or chronically ill, for example, if you have a child on the autism spectrum who is so-called "high functioning" and able to work to some degree but not enough to be self-supporting, your child won't be an EDB, and the SNT exception won't work. Calling it a "special needs trust" won't do the trick. The trust will be stuck with the ten-year rule at best. For parents with children on the margin who may or may not qualify as disabled, the estate plan may require a lot of careful thought. You may even decide to convert your large IRA to a Roth IRA and pay the tax yourself rather than risk 37% or more in income tax on IRA distributions to your child's trust after your death. Clever tax lawyers may develop workarounds for this problem, but it won't be risk-free, easy, or simple. Some Examples Let’s review. Go back to your child’s SNT. Remember that a trust for the benefit of a person who is disabled or chronically ill and who is the only beneficiary during that beneficiary's lifetime should get the "stretch" payout over that beneficiary's actuarial life expectancy. Assume that you have named your child’s SNT as a beneficiary of your retirement account or IRA. When it was drafted, you wanted to name the National Alliance on Mental Illness (NAMI) as the remainder beneficiary but were told this would defeat the "stretch" payout. With the new rules, you can name a charity if you want, and you also don't have to worry if you gave your child the power to decide who gets the money after their death -- the regulations don't care. You may want to go back and re-do the trust the way you wanted to originally. But what if when you die, the trust is examined, and it contains that "poison pill" language, saying that if the trust causes ineligibility for benefits, it can be paid out to the child's brother? Is the trust doomed? Possibly. State laws may allow the trustee to modify the trust, and if this can be accomplished by September 30th of the year following death, it should solve the problem. The trustee will have to move fast because modification may require court approval. And what if you drew up an SNT some years ago as a beneficiary of your IRA because you believed your child would eventually qualify for government benefits, but in fact, your child has been able to earn $1800 per month at a low-wage job off and on? So, has there been no application for benefits from Social Security? The trust may no longer be a good option. You may consider naming your child as a beneficiary or encouraging the trustee to pay out RMDs directly to your child over the anticipated ten years. Finally, what if your documents satisfy the rules perfectly, but you realize your trustee does not understand taxes very well? Might the trustee, ignorant of these rules, cash out the IRA and get a check? You may want to provide detailed instructions to your trustee or select one who understands complex tax issues. Considerations in planning There are many fine points and individual issues that your attorney should consider when drafting your trust and helping with the beneficiary forms. In general, though, if you need to name your child’s SNT as a beneficiary of a retirement account, you should consider these issues carefully:

The likely amount that will be in the account at your death. In other words, how important is it for this particular account to stretch distributions over your child’s lifetime? Would the taxes be so high if paid over ten years? Is it small enough that you anticipate the trustee might decide to spend the money in five or ten years anyway? Of course, if you are young now, your account may be small, but it will likely grow over time, so you will have to monitor the situation.
Your child's disability. Do you know for sure that your child will qualify as disabled or chronically ill? Has any determination of disability been made? If your child is not certain to be determined to be disabled, you have to consider seriously the problem of income retained in the trust. Discuss with your attorney ways to manage that tax component of the retirement accounts. Some options may include converting the accounts to Roth IRAs, designating your child as the beneficiary, or providing further instructions to the trustee.
The trust document itself. If you've had a trust set up for your child years ago, re-examine it. Does it include the dreaded "poison pill" language or other language allowing distributions to those other than the child with a disability? If your child isn't disabled in the technical sense, did you name a charity as a beneficiary on the child's death?
The trustee and instructions you can provide. Even if the documents seem perfect, will your trustee or account manager get the right advice when you die and arrange the distributions correctly? While having a trustee who can pay attention to details and bureaucratic requirements like filing tax returns is essential, it is essential when an IRA will pay to the trust. The trustee must understand the legal and tax requirements or know how to engage well-qualified advisors who understand the goal.

There are also procedural requirements that must be met. For the IRS to look through a trust, it must be irrevocable as of the date of your death. In addition, the IRA custodian or retirement plan administrator must receive from the trustee either a copy of the trust document or a final list of all beneficiaries determined as of September 30 of the year following the year of death (certified by the trustee as correct and complete). Your trustee must ensure the I's are dotted and Ts crossed. Traps for the unwary There’s one more “gotcha” trap that you ought to know about. The stretch is only available to the beneficiary with a disability (or other EDBs under the SECURE Act) or a trust for such a beneficiary while the beneficiary who is disabled is alive. The stretch is unavailable to successor beneficiaries who receive the retirement account after the initial beneficiary’s death. At that point, the trust switches to the ten-year rule. There are also a couple of traps for the unwary widow or widower. Suppose that John’s IRA names his wife Helen as the primary beneficiary and their child’s special needs trust as a contingent beneficiary. John then dies. Under IRS rules, Helen could “roll over” John’s IRA funds into her own IRA and name her beneficiaries. This presents trap number one -- Helen must remember to name the trust, not the child. However, trap number two is if Helen dies without naming new beneficiaries. Because John's beneficiary was Helen, who survived him, even if she didn't roll over the account, it belonged to her. This means that if she dies, it goes to her estate. On her death, John’s contingent beneficiary—the special needs trust—won’t have the option to stretch the IRA over their child’s lifetime but will be stuck with Helen’s remaining life expectancy (which is likely to be a lot shorter than the child’s). In other words, the typical married couple, who leaves everything to each other and only on death to the trust, should ensure that the surviving spouse remembers to name the trust as the new primary beneficiary. If there are concerns about the survivor’s ability to carry out these steps, it’s wise to include in the survivor’s durable power of attorney document a power authorizing the agent to take these actions to roll over the account and designate the special needs trust as the new primary beneficiary. As is often the case, what seems like a simple process that anyone can do without legal advice is not at all simple. Indeed, the naïve belief that you can go online and fill out a form to designate your trust as beneficiary of your retirement accounts can easily result in an income tax or public benefits eligibility disaster. If your estate plan makes your trust a beneficiary of your retirement plans, you should seek advice from a competent special needs attorney.

Requirements for Reproducing this Article: The above article may be reprinted only if it appears unmodified, including both the author description above the title and the “About this Article” paragraph immediately following the article, accompanied by the following statement: “Reprinted with permission of the Special Needs Alliance – www.specialneedsalliance.org.” The article may not be reproduced online. Instead, references to it should link to it on the SNA website.

Download PDF [post_title] => Naming a Special Needs Trust as Beneficiary of Your IRA or Retirement Plan [post_excerpt] => [post_status] => publish [comment_status] => open [ping_status] => closed [post_password] => [post_name] => naming-a-special-needs-trust-as-beneficiary-of-your-ira-or-retirement-plan-3 [to_ping] => [pinged] => [post_modified] => 2025-04-22 15:38:03 [post_modified_gmt] => 2025-04-22 19:38:03 [post_content_filtered] => [post_parent] => 0 [guid] => https://www.specialneedsalliance.org/?p=702531 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw ) [7] => WP_Post Object ( [ID] => 699722 [post_author] => 494 [post_date] => 2025-02-11 11:11:14 [post_date_gmt] => 2025-02-11 16:11:14 [post_content] => New tools and technologies are revolutionizing daily life for adults with disabilities, offering innovative ways to communicate, work, and engage with their communities. From specialized apps that decode social cues to smart home systems that enhance independence, artificial intelligence (AI) helps break down traditional barriers and create new possibilities for meaningful participation in all aspects of life. Let's explore some of the most promising AI applications that are making a difference. Communication and Social Interaction AI-powered communication tools have become increasingly sophisticated, helping adults with speech or language challenges express themselves more effectively. Modern text-to-speech applications like Speechify can convert written words to audible speech, while advanced speech synthesis tools can provide natural-sounding voices for those who use augmentative communication devices. In addition, apps like Google Live Transcribe and Otter.ai can provide real-time transcription during conversations, helping users follow complex discussions more easily. Some specialized applications can analyze social cues and provide subtle prompts or feedback, helping users navigate social situations more confidently. The Sachs Center, for example, recently launched a free AI tool that helps adults on the autism spectrum understand common expressions and social cues by providing real-time interpretations of the idioms, metaphors, and indirect language that often create challenges in social interactions. The tool works across multiple devices and allows users to customize their experience based on their communication preferences. Workplace Support In professional settings, AI is making it possible for many adults with disabilities to perform jobs that may have been challenging or impossible before. Nuance’s speech recognition software, Dragon, has evolved to provide highly accurate voice control for computer operations, while smart keyboards with AI prediction can significantly reduce the physical effort required for typing. AI-powered organizational tools like Microsoft To Do with built-in AI features can help with task management and time organization, breaking down complex projects into manageable steps and providing helpful reminders. For adults with executive function challenges, project management tools can integrate AI to help prioritize tasks and manage deadlines more effectively. Daily Living Assistance Smart home technology, enhanced by AI, is helping many adults with disabilities live more independently. Smart home systems can manage everything from lighting and temperature to security and entertainment. These systems can learn individual patterns and preferences, automatically adjusting settings based on the time of day or user routines. For individuals with visual impairments, apps like Be My Eyes connect them with sighted volunteers or AI assistance to help with tasks like reading labels or identifying objects. Meanwhile, navigation apps use AI to provide detailed environmental information and walking directions, helping users navigate their communities more confidently. Personal Finance and Administration Managing personal finances and administrative tasks can be challenging for many adults with disabilities. AI-powered tools are making these tasks more manageable through:

Banking apps with voice control and simplified interfaces
Automated bill payment systems with smart reminders
AI-powered budget tracking tools like Mint or YNAB
Document reading apps that can convert complex paperwork into plain language
Smart calendar apps that can predict and schedule routine appointments

Health and Wellness AI applications are increasingly helping adults with disabilities manage their health more effectively. The Apple Watch, for example, can detect falls and automatically call for help if needed. Smart medication dispensers can track doses and send reminders, while apps like Ada can help users monitor symptoms and communicate more effectively with healthcare providers. Fitness apps with AI capabilities can adapt exercise routines for different ability levels, ensuring safe and effective physical activity. Some mental health apps use AI to track mood patterns and provide personalized coping strategies. Important Considerations When incorporating AI tools into daily life, it's essential to consider several practical factors. First, evaluate the learning curve associated with each tool. Some AI applications may require significant training or practice before they become truly useful, so it's often helpful to start with one tool at a time rather than trying to implement multiple new technologies simultaneously. Reliability and backup plans are crucial factors since many adults with disabilities may come to rely on these tools for important daily tasks. Consider having alternative methods available in case of technical issues. Additionally, understand what kind of ongoing support and maintenance each tool requires — whether it's regular updates, technical adjustments, or compatibility management with other assistive technologies. It's worth investigating whether insurance, vocational rehabilitation services, or other programs might help cover the cost of necessary tools and ongoing support. Finally, consider the long-term sustainability of any AI solution. Will the company providing the technology be around for the long term? Are there ongoing subscription costs? Working with a technology specialist can help evaluate these factors and ensure that new AI tools will function well within an existing technological setup. Looking Forward As AI technology continues to advance, we can expect to see even more innovative tools developed to support adults with disabilities. Companies are working on more sophisticated predictive technologies, improved voice recognition systems, and better integration between different types of assistive technology. For adults with special needs and their families, these technological advances offer new possibilities for independence, employment, and community participation. Working with appropriate professionals — including occupational therapists, vocational counselors, and technology specialists — can help identify and implement the right combination of tools to support individual goals and needs. To learn more about resources available for you or your loved one with special needs, connect with an SNA attorney near you. Disclaimer: While we strive to present accurate and current information, we do not endorse specific products or services. The tools mentioned in this article are examples only. Individuals should carefully research any technology solution and consult with appropriate professionals to determine what best meets their specific needs. Technology capabilities and pricing may change over time.

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[post_title] => AI Tools Opening New Doors for Adults With Special Needs [post_excerpt] => AI-powered tools are helping adults with disabilities achieve greater independence and success in employment, daily living, and community participation. [post_status] => publish [comment_status] => open [ping_status] => closed [post_password] => [post_name] => ai-tools-opening-new-doors-for-adults-with-special-needs [to_ping] => [pinged] => [post_modified] => 2025-02-11 14:51:53 [post_modified_gmt] => 2025-02-11 19:51:53 [post_content_filtered] => [post_parent] => 0 [guid] => https://www.specialneedsalliance.org/?p=699722 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw ) [8] => WP_Post Object ( [ID] => 692083 [post_author] => 494 [post_date] => 2025-01-27 10:20:51 [post_date_gmt] => 2025-01-27 15:20:51 [post_content] => This issue of The Voice® was written by SNA member Kristen M. Lewis of Harrison, LLP in Atlanta, Georgia. Her firm focuses on special needs, estate and trust administration, guardianship and conservatorship, and estate planning. A professional care manager may be the most valuable – yet least recognized – member of a family’s team of allied professionals. Until a family needs a care manager for the first time, they have no idea how wide-ranging the skills of a care manager can be to support a person with a disability. Because a special needs plan is not self-implementing, it can be very helpful to have a care manager as one of the first members of a family’s team of allied professionals consulted in designing and implementing their special needs plan. Care managers come to the team with differing backgrounds: some are social workers, some are medical physicians or physician’s assistants, and some have nursing credentials. (I have most frequently worked with nurse care managers.) Some families have used a geriatric care manager to facilitate long-term care planning for an elder needing a skilled nursing facility. Increasingly, Care Management firms are designating their staff as disability care managers (DCM) trained to work with individuals who are not considered seniors but whose disabling conditions necessitate similar planning (both current and future) as a part of comprehensive special needs planning. In-Home Assessments Are the First Step Inasmuch as a care manager cannot operate in a vacuum, a care management engagement typically begins with a comprehensive in-home assessment of the individual’s existing residential and care arrangements, with input from members of the individual’s support network and team of allied professionals. A care manager typically will request that the individual (or representative) execute a services agreement and remit a small initial retainer. Care management services are generally rendered at an hourly rate rather than as a flat fee. Services include those that address the individual’s myriad needs: health care, emotional, functional, legal, financial, residential, and support. Care managers are problem solvers, advocates, service coordinators, and counselors with a deep knowledge of the resources available in the individual’s community. They excel when retained early in the process but are equally effective in crisis situations. They can work with an individual’s local team of allied professionals and with long-distance family and team members. While care managers do not typically provide hands-on support services - such as those rendered by a direct support professional (DSP) - they coordinate direct service and support professionals in collaboration with the other members of the individual’s team. Identifying DSPs is a critical role of a care manager. In an economic environment where the need for DSPs far exceeds their availability, care managers are often part of a local network with insider knowledge of available DSPs. The care manager knows which DSPs are wrapping up an engagement due to the impending death or relocation of an individual and which families need the services of those DSPs. Such inside information enables the DSP to be re-engaged to assist another individual without missing a single day of employment. Care managers excel in identifying DSPs with specialty skills and often are tasked with assembling teams of DSPs with complementary skills to support individuals with complex medical needs. Such medically complex individuals often require several shifts of specially trained DSPs. Care managers are also ideally suited to identify live-in DSPs for short-term or long-term engagements. Regardless of the DSP skills needed, care managers often can train (or retrain) and monitor the DSPs and facilitate the hiring and termination of staff. They are integral to developing an initial care plan for an individual and modifying the plan as the needs and circumstances of the individual warrant. In the context of crisis intervention, a care manager expertly assists an individual (and family and team) to navigate care transitions: from an emergency department to in-patient hospitalization, to rehabilitation, to in-home care. Since many care managers have medical and nursing backgrounds, they are considered peers by the providers rendering care in each of these settings, while family members often struggle with “medical mumbo-jumbo” and “run-around” tactics from those same providers. Care managers can ensure that the care rendered in each setting is adequate, appropriate, and available to the individual when family members have not succeeded. For families who live a long distance from an individual being supported locally, care managers serve as around-the-clock liaisons to the individual and the rest of the team. Working Miracles Care managers have worked miracles for my clients! In two recent matters, a care manager was consulted in the context of a proposed emergency guardianship proceeding necessitated by the individual's erratic and threatening behaviors. The care manager's quick review of the individual’s prescription drug regimen yielded a critical clue to the underlying reason for these behaviors. Once the individual’s prescription drug formula was appropriately modified, the behaviors ceased, obviating the need for both emergency guardianship and permanent guardianship in each of these cases. Care managers are also available to facilitate regular and routine health management for individuals, including rendering periodic assessments or updates and check-ins as needed. Care managers are willing to accompany an individual to medical appointments, to serve as advocates during such visits, to help the individual understand the proposed care options, and to ensure smooth and accurate communication between and among the individual, providers, and the other members of the team of allied professionals. Medication review and management is a critical service offered by care managers, especially for complex medical conditions requiring the involvement of numerous specialists. Care managers are a treasure trove of wisdom regarding hospice and palliative care options for individuals with incurable or terminal conditions who are approaching the end of life. A care manager provides advocacy, coaching, guidance, and support for the individual, the family, and the team of allied professionals at all stages of the care management spectrum, from inception to recovery or death. If an individual’s wishes, as stated in an advance directive for health care (or similar instrument), are being thwarted by a provider, a care manager can intervene to ensure that the individual’s care is modified to comport with the directive. If there is no written directive, a care manager can counsel the default healthcare decision-makers regarding all available options. Increasingly, care managers serve as healthcare agents or legal guardians for individuals when they perceive that family members or friends are unwilling or unable to implement their stated healthcare wishes regarding both routine and end-of-life decisions. Providing Guidance Care managers are skilled in advising individuals and their families regarding placement in the various residential options appropriate for the individual’s support and care needs. They know “the good, the bad, and the ugly” about local assisted living communities, memory care facilities, skilled nursing facilities, group homes, and personal care homes. Thus, families need not conduct the hours of original due diligence on these residential options (which often become a roadblock to progress for many support teams.) Care managers are also effective negotiators with these facilities' intake staff and management. They can routinely facilitate an individual's transition into or from a retirement community or a skilled nursing facility. Towards this end, care managers frequently offer residential move management services. Move management services assist individuals and their families on a continuum that starts with developing a plan to orchestrate a move from one living arrangement to another, or with an appropriate age-in-place plan. Organizing, sorting, and disposing of furniture, furnishings, personal effects, and just plain junk (often decades in the making) cause planning paralysis for many families. Arranging for the profitable re-homing of such accumulated items via auction, estate sale, consignment, buy-out of joint owners, and donation (or some combination of all of these techniques) can break the roadblock, allowing for a much-needed transition from an individual’s current living arrangement to one that is safer and more appropriate for their required level of care. The care manager frequently may assist the individual and family with the process of interviewing, scheduling, and overseeing professional moving and relocation services; arranging for storage of items that will not become part of the individual’s new living arrangement; unpacking and setting up the individual’s new residence; and related services such as cleaning, trash removal, selecting a realtor and readying a home for sale or lease. Once an individual has relocated to the new living arrangement, a care manager can recommend appropriate in-home care and support services; develop, review, and oversee a home care plan; provide coaching for family caregivers regarding their roles under the plan; and serve as an ongoing source of encouragement and resources as they undertake their roles. The care manager is ideally suited to identify, arrange for, and monitor care staff and services. In-home staff management by a care manager often can diffuse and address volatile and emotional issues that the individual and family members cannot resolve on their own, avoiding the need to find and retrain new staff. In short, many of my clients go from asking, “What can a care manager do for me?” to “What can’t a care manager do for me!!” The care manager is one member of a family’s team of allied professionals that they didn’t know they needed, but once the care manager is retained, they cannot live without this essential team member.

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[post_title] => Care Managers and How They Support Individuals with Disabilities [post_excerpt] => [post_status] => publish [comment_status] => open [ping_status] => closed [post_password] => [post_name] => care-managers-and-how-they-support-individuals-with-disabilities [to_ping] => [pinged] => [post_modified] => 2025-01-29 11:42:08 [post_modified_gmt] => 2025-01-29 16:42:08 [post_content_filtered] => [post_parent] => 0 [guid] => https://www.specialneedsalliance.org/?p=692083 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw ) [9] => WP_Post Object ( [ID] => 689751 [post_author] => 494 [post_date] => 2025-01-22 14:00:02 [post_date_gmt] => 2025-01-22 19:00:02 [post_content] => Everyone is talking about the potential of artificial intelligence (AI), with many discussions centering around how it will change the way we work. One of the most promising applications, however, is how AI is transforming how students with disabilities learn, communicate, and engage with educational content in ways that were once thought impossible. As the Institute of Education Sciences notes, "AI has the potential to provide unprecedented support for students with disabilities by offering personalized learning experiences that adapt to individual needs and learning styles." But what exactly does AI look like in today's classroom? Imagine a student with dyslexia who previously struggled to keep up with reading assignments. With today’s technology, they can use sophisticated AI-powered software that not only reads text aloud but also learns their specific reading patterns and challenges, adjusting its support accordingly. Or consider a student with limited motor skills who can now complete writing assignments independently using eye-tracking technology and predictive text tools that anticipate their needs. These aren't futuristic scenarios — they're happening in classrooms right now. Let’s take a look at a few ways AI is improving the educational experience for students with disabilities.

Making Learning Personal Through Adaptive Technology

The true power of AI in special education lies in its ability to provide genuinely personalized learning experiences tailored to each student's unique needs. Traditional teaching methods often follow a standardized approach that may leave some students struggling to keep up — while others become disengaged because the pace is too slow. AI technology is changing this dynamic by creating truly adaptive learning environments. For example, students with dyscalculia struggle with mathematical concepts. In a traditional classroom, they might struggle through worksheets that don't address their specific challenges. However, an AI-powered math program can observe their work patterns and identify exactly where the learning process breaks down. If the student consistently struggles with fraction problems, for instance, the program might first ensure they fully understand the concept of whole numbers and division before introducing fractions. It might also present the information through different approaches — using visual representations, real-world examples, or interactive games — until it finds the method that resonates best with that particular student.

Breaking Down Communication Barriers Through Innovation

Communication challenges can be particularly frustrating for students with special needs, but AI is providing increasingly sophisticated solutions that go far beyond basic assistive technology. Modern AI-powered communication tools can adapt and learn from each student's unique patterns of expression, making communication more natural and effective. For students with speech difficulties, AI-powered speech-to-text technology has become remarkably sophisticated. Systems like Voiceitt can learn to understand speech patterns that might be difficult for others to comprehend, allowing students to participate better in classroom discussions and writing assignments. These programs continue to learn each student's speech patterns over time, becoming more accurate and responsive to their specific needs. Text-to-speech programs have also evolved significantly. Modern AI readers, like Microsoft’s Immersive Reader, can do much more than simply convert text to audio. They can adjust reading speed based on content complexity, highlight words as they're read to aid comprehension, and even modify voice tone and emphasis to maintain student engagement. Some advanced systems can identify potentially challenging vocabulary words before a student encounters them, providing definitions, examples, and context to support understanding.

Creating Dynamic and Engaging Learning Environments

The integration of AI has revolutionized how students interact with educational content through multisensory learning approaches. By combining visual, auditory, and interactive elements, AI-powered educational tools create rich learning experiences that adapt to each student's preferred way of engaging with material. Imagine a history lesson about ancient Egypt. Instead of relying solely on textbook readings, incorporating AI-powered learning might combine traditional text with:

Interactive 3D models of pyramids that students can explore virtually
Adaptive quizzes that adjust their difficulty based on student responses
Virtual reality experiences that bring historical events to life
Voice-controlled navigation for students with motor limitations
Real-time translation of hieroglyphics to aid understanding

AI tools, including educational games, can adjust their challenge level in real time, keeping students engaged without becoming overwhelmed. For example, a spelling game might notice that a student consistently struggles with certain letter combinations and provide more practice with those specific patterns, all while maintaining a fun, game-like environment.

Empowering Teachers with Real-Time Data and Insights

AI isn't just transforming the student experience — it's changing how teachers understand and support their students' learning journeys. Through sophisticated monitoring and analysis tools, AI gives teachers unprecedented insights into how each student learns, struggles, and progresses. Think of these AI systems as thousands of virtual eyes in the classroom, each watching for different signs of learning and engagement. The technology can track everything from how long a student spends on different types of problems to which teaching methods lead to the best results. For instance, if a student consistently performs better when mathematical concepts are presented visually rather than numerically, the system will flag this pattern for the teacher. What makes this particularly powerful is the ability to identify subtle patterns that might be difficult for even the most attentive teacher to spot. The AI might notice, for example, that a student tends to struggle more with reading comprehension in the afternoon, or that their math performance improves significantly when problems are presented in a game-like format. This kind of detailed insight allows teachers to make more informed decisions about when and how to present different types of content.

Important Considerations and Best Practices

While the potential of AI in special education is remarkable, implementing these technologies requires careful consideration and planning. Privacy and data security must be at the forefront of any AI implementation. Parents and educators need to understand exactly what information is being collected about their students and how it's being protected. This includes knowing:

What specific data points are being tracked
How long this information is stored
Who has access to the data
How the information is being used to inform instruction
What security measures are in place to protect student privacy

Cost and accessibility are equally important considerations. While some AI tools are relatively affordable, others require significant hardware, software, and training investments. Schools need to develop comprehensive plans for:

Initial technology acquisition
Ongoing maintenance and updates
Staff training and professional development
Technical support for both teachers and students
Ensuring equitable access to these technologies across all student populations

Looking to the Future

As AI technology continues to evolve, we can expect to see even more innovative applications in special education. Research is already underway on AI systems that can read and respond to facial expressions, providing better support for students with emotional or social challenges. Other developments include more sophisticated language processing tools and even AI-powered robotic assistants that can help students with physical tasks. However, it's crucial to remember that technology should enhance, not replace, human interaction. The most successful implementations of AI in special education maintain a careful balance between technological support and personal connection. Teachers, parents, and support staff remain essential to student success, with AI serving as a powerful tool in their educational toolkit. The impact of this technology extends far beyond academic achievement. When students have tools that help them overcome traditional barriers to learning, they gain independence and confidence. They can participate more fully in classroom activities, express their thoughts more easily, and demonstrate their knowledge in ways that work best for them. This technological support system is helping create more inclusive educational environments where every student has the opportunity to succeed. Educational tools like these open possibilities for students and give parents peace of mind. Wondering how else to support your child with special needs? Connect with an SNA attorney near you.

Planning for the future can feel daunting, but it doesn’t have to be. The key is to be proactive and set aside time as early as possible to consider how you want the future to look for yourself and a loved one with special needs. By taking the time carefully to plan now, you can ensure a smoother transition later.

Steps in the Planning Process

Proactively approaching the planning process can ease potential burdens down the line. That’s why it’s essential to start that planning as soon as possible. If you have a child or other family member with special needs, keep your own future health issues and care needs in mind and do not delay planning ahead for your own future as well as your child’s. In particular, delaying your child’s independence, especially in terms of their housing, is a disservice to your child. It’s natural to procrastinate and hope for our own longevity, but should the unexpected happen to you, early planning and support will lay the foundation for a secure and fulfilling future for your child. While parents often lose sleep at night thinking of their own demise, they rarely consider the consequences of their own future disability and how that might impact their ability to be a caregiver for their child. Transition planning involves various legal and financial considerations to ensure the well-being of individuals with disabilities. Arguably, the three most crucial topics to consider first are the following:

Establishing Means for Responsible Decision-Making: Guardianship and Power of Attorney

Guardianship is a legal process where an individual (the guardian), after a sometimes lengthy hearing, is appointed by the Court to make personal and/or financial decisions on behalf of someone with a disability (the ward) who is unable to comprehend these decisions on their own. A Power of Attorney (POA) is a legal document signed by a competent person (the maker) granting authority to another person (the agent) to make decisions on behalf of the maker. Choosing the most appropriate option as between a Court-appointed guardian and a chosen agent under a POA is a medical determination, and guardianship should be the path of last resort. In general, the legal age of majority is 18, so this topic should be addressed at least 6 months prior to your child's 18th birthday.

Engaging in Long-Term Financial Planning

Securing a solid financial plan is essential to contributing to quality long-term care. Planning for the long-term financial security of an individual with special needs involves considerations like life insurance, investments, budgeting for ongoing care costs, and considerations of realistic future housing costs. The best way to protect and secure these types of funding streams is by establishing trusts, such as a Special Needs Trust (SNT). Be sure you have a thorough understanding of the difference between 1st party and 3rd party SNTs. Also, be sure to consider the advantages and disadvantages of stand-alone and pooled SNTs. All of these trusts are created to protect the individual's eligibility for and retention of needs-based public benefits such as SSI, Medical Assistance, Food Stamps, etc., while also providing for supplemental needs and expenditures.

Solidifying the Continuation of Appropriately Supportive and Safe Housing

If you have a family member with special needs living with you, securing supportive and safe housing in the wake of an unexpected event is potentially a huge crisis that could have been averted by engaging in prior planning. Or, at the very least, with prior planning, it is a manageable problem as opposed to a major disaster. Housing discussions might involve modifications to your existing home or that of another supportive family member. Such discussions may involve finding alternate housing options that cater to individuals with special needs. Prior to a crisis, make time to investigate residential options such as group homes or assisted living facilities that cater to individuals with special needs. Include considerations for funding these options in your long-term financial plan. Investigate government programs that provide housing assistance for individuals with disabilities. Some programs offer financial support or subsidies to help cover housing costs. Be sure to consider the role of siblings or other family members in providing or supervising care and explore options for professional caregiving services if needed. Also, investigate local support groups or organizations that cater to individuals with special needs. As parents age into their 60s, 70s, and 80s, their devotion to caring for their child with special needs is sadly often not matched by their realistic ability to do so in a manner that is safe for both them and their now adult child. In some instances, the child himself has reached retirement age. Planning ahead is essential for extended families to ensure a transition that maintains the child's well-being, especially when parents can no longer provide care themselves. This is where a Certified Elder Law Attorney (CELA) or attorney whose practice concentrates in elder and special needs law can be beneficial. These attorneys understand how public and private funding works, what services are available, and how to secure the best possible care for your family member with special needs.

Embracing a Team Approach

Whenever possible, including the individual with special needs in the planning process is always in their best interest. Their desires, aspirations, and vision for their own future should be of utmost consideration and incorporated into the overall plan. Establishing open communication channels among all interested family members is essential. Special Needs Planning is a multifaceted journey that requires careful consideration of healthcare, housing, financial, and legal aspects. Embracing a team approach involving extended relatives, neighbors, and friends can provide the necessary support. By acting proactively, families can ensure a smooth transition for their loved ones with special needs, fostering independence and a fulfilling life. If you need help planning for the future for yourself or a loved one with special needs, please contact members of the Special Needs Alliance, who can help make the transition smoother.

What Are Your Goals?

For plaintiffs receiving personal injury recoveries, goals often include the following:

Benefit Themselves. Plaintiffs want to improve their quality of life.
Benefit Spouse. Plaintiffs want to improve the standard of living of their spouse, which sometimes requires either gifts to their spouse or the purchase of items for the spouse, which would also constitute gifts if made by the trust.
Benefit Others. Plaintiffs want to benefit other family members, including children. Transferring assets, including assets purchased for the benefit of others, to family members constitutes a gift, which would temporarily disqualify the plaintiff from many public benefits.
Legacy for Children. Most parents would like to preserve a legacy for their children. A Medicaid payback provision in a self-settled special needs trust makes this difficult.
Buy a Home. Nearly every plaintiff has three wishes: a home, a car, and a trip to Disney World. Buying a home is at the top of the list. But, if the home is purchased by the trust and occupied by other family members, in many states those other family members must pay a pro-rata share of the expenses of maintaining the home. And, if the trust makes a distribution to the plaintiff to purchase the home in their own name, in most states the home would be subject to a Medicaid lien or estate recovery.

These goals are difficult to achieve because of the disadvantages of a self-settled special needs trust set forth below.

Pros and Cons of Using a Self-Settled Special Needs Trust

Before making this decision, several factors should be considered.

Advantages of a Self-Settled Special Needs Trust

The money in the trust is not counted as an asset.
No transfer penalty is imposed for transferring assets.
Immediate eligibility or no interruption of benefits.
Expert investment management.
Expert trust administration.

Disadvantages of a Self-Settled Special Needs Trust

Payback to Medicaid on death.
Intense supervision by many state Medicaid agencies.
Possible conflict between trustee and beneficiary over appropriate distributions.
“Sole benefit of” restrictions.
Other family members cannot benefit.
The beneficiary must be under age 65.

What Potential Alternatives Would There Be to A Self-Settled Special Needs Trust?

Allocation. In appropriate situations, the personal injury attorney can arrange for the court to approve an allocation of funds to individuals other than the plaintiff. This is common in wrongful death cases.
Settlement Protection Trust. A settlement protection trust could be established. It is a support trust with a health, education, maintenance, and support (“HEMS”) standard. Distributions are much less restrictive than those permitted in a self-settled special needs trust. The disadvantage is that the plaintiff would lose their public benefits.
Settlement Protection Trust with Special Needs Provisions. This could be useful in the following situations:
- Child Under 18. If there is a child under 18 not yet eligible for SSI because of parental deeming, a settlement protection trust can be established and administered until the child is 18, when the trust could automatically trigger a transfer to the special needs subtrust.
- Belt and Suspenders. A settlement protection trust can be established with a provision that if it is later determined that the benefits are more necessary than anticipated, a transfer to the special needs subtrust could be triggered.
Long-Term Care Planning.
- Spend Down for Items Needed by Plaintiff and/or Spouse. When engaging in long-term care planning, if the plaintiff can give up benefits for a limited time, usually not to exceed five years (often less), he or she can usually eventually resume those benefits.
- Gifts to Spouse. If the plaintiff is married, the plaintiff’s spouse can purchase a Medicaid-compliant annuity. This does not incur a Medicaid transfer of asset penalty.
- Transfer to Family Members. For a significantly large recovery, assets could be transferred to other family members, resulting in a loss of Medicaid benefits for a period not to exceed 5 years.
- Transfer Assets – Pay Through Penalty. In many instances, assets can be transferred, and the plaintiff can pay through the resulting penalty period, which could be less than 5 years.
- Transfer Assets to a Child Under 21, Blind, or Disabled. This can be done without a transfer of asset penalty.
- Tax Considerations. In pursuing any of these strategies, tax considerations must be considered including carry over basis, step-up basis, retirement plan rules, the tax effect on the transfer of a deferred annuity, and state estate or inheritance taxes.

When Not to Use a Self-Settled Special Needs Trust

Large Settlements. If the personal injury recovery is large enough, consideration should be given to accepting the settlement, funding a settlement protection trust, giving up benefits, and purchasing private medical insurance.
Age 65 Or Older. If the individual is age 65 or older, a self-settled special needs trust is not possible (unless state law allows a self-settled pooled trust option). For example, in nursing home abuse or neglect cases, the instinct of the personal injury attorney is often to fund a self-settled special needs trust. However, after the settlement or recovery is achieved, the personal injury attorney realizes that the age requirement cannot be satisfied. By doing long-term care planning like described above, a significant portion of the recovery can usually be protected. Even if the individual is under age 65 but in a nursing home, additional long-term care planning may be beneficial because there may be very little that can be spent to enhance the quality of life of the nursing home resident with the use of a self-settled trust.
Benefit Of Other Individuals. If a personal injury recovery is achieved and deposited in a self-settled special needs trust, it is difficult for other family members or friends to benefit from the recovery. Often it is difficult to spend a lot of money enhancing the plaintiff’s quality of life. By engaging in long-term care planning, it may be possible for a spouse and other family members to benefit from long-term care planning strategies.

Disadvantage of Forgoing a Self-Settled Special Needs Trust

One disadvantage to pursuing a strategy that would cause the temporary loss of public benefits is that the individual would have to reapply for those benefits after the expiration of the period of ineligibility. The intersection of personal injury recovery, public benefits law, and trust law can be challenging to navigate, so legal advice about various options, including thinking outside of the box is crucial. Contact a Special Needs Alliance member attorney in your area to learn more about your particular situation.

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background_slider_pause_on_hover="no" background_slider_slideshow_speed="5000" background_slider_animation="fade" background_slider_direction="up" background_slider_animation_speed="800" background_slider_blend_mode="" render_logics="" sticky="off" sticky_devices="small-visibility,medium-visibility,large-visibility" sticky_offset="" absolute="off" absolute_props="" filter_type="regular" filter_hover_element="self" filter_hue="0" filter_saturation="100" filter_brightness="100" filter_contrast="100" filter_invert="0" filter_sepia="0" filter_opacity="100" filter_blur="0" filter_hue_hover="0" filter_saturation_hover="100" filter_brightness_hover="100" filter_contrast_hover="100" filter_invert_hover="0" filter_sepia_hover="0" filter_opacity_hover="100" filter_blur_hover="0" transform_type="regular" transform_hover_element="self" transform_scale_x="1" transform_scale_y="1" transform_translate_x="0" transform_translate_y="0" transform_rotate="0" transform_skew_x="0" transform_skew_y="0" transform_scale_x_hover="1" transform_scale_y_hover="1" transform_translate_x_hover="0" transform_translate_y_hover="0" transform_rotate_hover="0" transform_skew_x_hover="0" transform_skew_y_hover="0" transform_origin="" transition_duration="300" transition_easing="ease" transition_custom_easing="" motion_effects="" scroll_motion_devices="small-visibility,medium-visibility,large-visibility" animation_type="" animation_direction="left" animation_color="" animation_speed="0.3" animation_delay="0" animation_offset="" last="true" border_position="all" first="true"][fusion_text columns="" column_min_width="" column_spacing="" rule_style="" rule_size="" rule_color="" hue="" saturation="" lightness="" alpha="" user_select="" content_alignment_medium="" content_alignment_small="" content_alignment="" hide_on_mobile="small-visibility,medium-visibility,large-visibility" sticky_display="normal,sticky" class="" id="" margin_top="" margin_right="" margin_bottom="" margin_left="" fusion_font_family_text_font="" fusion_font_variant_text_font="" font_size="" line_height="" letter_spacing="" text_transform="" text_color="" animation_type="" animation_direction="left" animation_color="" animation_speed="0.3" animation_delay="0" animation_offset="" logics=""] This article is provided by SNA member Lauren I. Mechaly, who is Counsel at Rivkin Radler LLP, in Hackensack, New Jersey. She focuses on elder law, special needs planning, estate planning, and estate administration in New York and New Jersey, and assists seniors with long-term care planning and helps individuals with disabilities and their families secure government benefits and community support. For parents of children with special needs, growing older doesn’t just mean preparing for your retirement and worrying about creaky joints. Ensuring your adult child's future health, happiness, and financial well-being requires preparation, too. As a special needs attorney with nearly two decades of experience, I've guided countless families through the complex process of planning for the future care of loved ones with disabilities. I am often asked, what will happen to my adult child with special needs when I am no longer able to care for him or her? If you find yourself concerned about this, you're not alone. It's never too early or too late to start planning for yourself and your child. Here are some key considerations to help you feel more secure and at peace with your child’s future:

Establish Legal Authority

The first thing I discuss with clients is decision-making on behalf of the child. You’ll need to have answers to questions like:

Who will have the legal authority to make decisions for your child when you no longer can, and what documents need to be put in place to grant that authority?
If you're currently the guardian, who's next in line?
Do you have your own legal documents, like a Will, Power of Attorney and Healthcare Proxy, in place?

These aren't easy conversations, but they're vital. I recommend involving your child in the process, to the extent their capacity allows; after all, we're talking about decisions that will impact the rest of his or her life, and input from your child is important in ensuring his or her future needs. It's also important to note that the degree of legal intervention varies depending on your child's level of capacity. For higher-functioning individuals, we might look at establishing less restrictive options, such as a Power of Attorney and Healthcare Proxy or supported decision-making (which allows the child to make his or her own decisions, albeit with support). For those with limited capacity, pursuing a guardianship may be the only alternative.

Create a Home for the Future

Where will your child live when you are no longer able to provide care, decide to downsize, or require long-term care yourself? It’s smart to explore residential placement options like group homes and supportive living apartments now, before you are in crisis mode. If your child is more independent, look into modifications and support services that will allow him or her to remain in the family home, with assistance. The key is to start this transition process while you're still around to help. Remember, this planning process is as much about empowering your child as protecting them. To the extent possible, we want to foster independence and self-determination, even as we ensure their needs are met.

Protect Your Child's Financial Security

Understanding, navigating and making the most of benefits like Medicaid, SSI, and SSDI is crucial. While these benefits may already be in place, it's important to ensure they'll continue seamlessly. Go over your estate plan with your attorney to make sure any inheritance is structured properly, such as through a supplemental needs trust, to protect means-tested benefits. Keep in mind that the rules around these benefits can change. For example, SSI is currently updating its regulations regarding food expenses, which could impact how the financial support for your child is structured.

Build a Support Network

Who will handle day-to-day tasks like managing medical appointments, renewing benefits, or even buying new clothes? The legal guardian isn't the only person for these practical matters, and sometimes that person needs assistance with these tasks, which can be time consuming. I often recommend looking into care managers or advocacy organizations that can provide "boots on the ground" support. This is especially important if the person you're naming as guardian lives far away. You might need to create a team of support, with different people handling different aspects of your child's care.

5. Secure Your Future to Protect Theirs

Remember, to effectively plan for your child, you need to plan for yourself as well. This includes considering your own estate and long-term care planning. For example, if you need skilled nursing care, how will you pay for it without depleting the resources you've set aside for your child? It may be worthwhile to look at long-term care insurance or Medicaid planning strategies for yourself. It is just as important to be sure that your estate plan incorporates the right plan for your child so that you do not risk jeopardizing his or her means-tested benefits upon your death.

Leave a Roadmap: The Letter of Intent

One tool I always recommend is creating a "letter of intent." This isn't a legally binding document, but it is a comprehensive guide to your child's life. It includes everything from their daily routines and medical needs to their favorite foods and activities. This document can be invaluable in helping future caregivers understand and meet your child's needs. And, it makes sure that all important information, like Social Security Number and health insurance information, is in one place.

Keep Current

Special needs planning isn't a one-and-done process. I recommend revisiting your plan every 3-5 years, or sooner if there are significant life changes. Your child's needs may evolve, your family situation might change, or there could be updates to relevant laws and regulations. Stay in touch with your attorney!

It’s OK Not to Be OK

I always have tissues ready in my conference room, because these conversations can be emotional. Feeling overwhelmed is completely normal! After all, it's scary to think about not being there for your child. But that's exactly why we do this planning. My clients sigh with relief when their estate planning is done, because it provides peace of mind that their child will be cared for even when they’re not around.

Take the First Step

There is not one plan for everyone, and meeting with the right attorney (for you!) is an important first step. There's no one-size-fits-all solution in special needs planning — every family's situation is unique. But the most important thing is to start the conversation. Reach out to a special needs planner who can guide you through the process step-by-step. Remember, you're not in this alone. While the planning process may seem daunting, breaking it down into manageable steps makes it less overwhelming. Whether you're just getting started or reviewing an existing plan, there's always room to ensure your child's future is well-protected. [/fusion_text][fusion_separator style_type="default" hide_on_mobile="small-visibility,medium-visibility,large-visibility" sticky_display="normal,sticky" class="" id="" flex_grow="0" top_margin="" bottom_margin="1rem" width="" height="20" alignment="center" border_size="" weight="" amount="" sep_color="" hue="" saturation="" lightness="" alpha="" icon="" icon_size="" icon_color="" icon_circle="" icon_circle_color="" /][fusion_text columns="" column_min_width="" column_spacing="" rule_style="" rule_size="" rule_color="" hue="" saturation="" lightness="" alpha="" user_select="" content_alignment_medium="" content_alignment_small="" content_alignment="" hide_on_mobile="small-visibility,medium-visibility,large-visibility" sticky_display="normal,sticky" class="" id="" margin_top="" margin_right="" margin_bottom="" margin_left="" fusion_font_family_text_font="" fusion_font_variant_text_font="" font_size="" line_height="" letter_spacing="" text_transform="" text_color="" animation_type="" animation_direction="left" animation_color="" animation_speed="0.3" animation_delay="0" animation_offset="" logics=""] About this Article: We hope you find this article informative, but it is not legal advice. You should consult your own attorney, who can review your specific situation and account for variations in state law and local practices. Laws and regulations are constantly changing, so the longer it has been since an article was written, the greater the likelihood that the article might be out of date. SNA members focus on this complex, evolving area of law. To locate a member in your state, visit Find an Attorney. Requirements for Reproducing this Article: The above article may be reprinted only if it appears unmodified, including both the author description above the title and the “About this Article” paragraph immediately following the article, accompanied by the following statement: “Reprinted with permission of the Special Needs Alliance – www.specialneedsalliance.org.” The article may not be reproduced online. Instead, references to it should link to it on the SNA website. [/fusion_text][fusion_button link="https://www.specialneedsalliance.org/wp-content/uploads/2024/11/Preparing-for-Tomorrow-What-Parents-of-Adult-Children-with-Special-Needs-Need-to-Know.pdf" title="Download PDF version of Loud & Clear" target="_self" link_attributes="" alignment_medium="" alignment_small="" alignment="center" modal="" hide_on_mobile="small-visibility,medium-visibility,large-visibility" sticky_display="normal,sticky" class="" id="" color="default" button_gradient_top_color_hover="" hue="" saturation="" lightness="" alpha="" button_gradient_top_color="" button_gradient_bottom_color_hover="" button_gradient_bottom_color="" gradient_start_position="" gradient_end_position="" gradient_type="" radial_direction="" linear_angle="180" accent_hover_color="" accent_color="" type="" bevel_color="" bevel_color_hover="" border_top="" border_right="" border_bottom="" border_left="" border_radius_top_left="" border_radius_top_right="" border_radius_bottom_right="" border_radius_bottom_left="" border_hover_color="" border_color="" size="" padding_top="" padding_right="" padding_bottom="" padding_left="" fusion_font_family_button_font="" fusion_font_variant_button_font="" font_size="" line_height="" letter_spacing="" text_transform="" stretch="default" margin_top="1rem" margin_right="" margin_bottom="" margin_left="" icon="" icon_position="left" icon_divider="no" hover_transition="none" animation_type="" animation_direction="left" animation_color="" animation_speed="0.3" animation_delay="0" animation_offset=""]Download PDF[/fusion_button][/fusion_builder_column][/fusion_builder_row][/fusion_builder_container] [post_title] => Preparing for Tomorrow: What Parents of Adult Children with Special Needs Need to Know [post_excerpt] => For parents of children with special needs, growing older doesn’t just mean preparing for your retirement and worrying about creaky joints. Ensuring your adult child's future health, happiness, and financial well-being requires preparation, too. 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background_slider_slideshow_speed="5000" background_slider_animation="fade" background_slider_direction="up" background_slider_animation_speed="800" background_slider_blend_mode="" render_logics="" sticky="off" sticky_devices="small-visibility,medium-visibility,large-visibility" sticky_offset="" absolute="off" absolute_props="" filter_type="regular" filter_hover_element="self" filter_hue="0" filter_saturation="100" filter_brightness="100" filter_contrast="100" filter_invert="0" filter_sepia="0" filter_opacity="100" filter_blur="0" filter_hue_hover="0" filter_saturation_hover="100" filter_brightness_hover="100" filter_contrast_hover="100" filter_invert_hover="0" filter_sepia_hover="0" filter_opacity_hover="100" filter_blur_hover="0" transform_type="regular" transform_hover_element="self" transform_scale_x="1" transform_scale_y="1" transform_translate_x="0" transform_translate_y="0" transform_rotate="0" transform_skew_x="0" transform_skew_y="0" transform_scale_x_hover="1" transform_scale_y_hover="1" transform_translate_x_hover="0" transform_translate_y_hover="0" transform_rotate_hover="0" transform_skew_x_hover="0" transform_skew_y_hover="0" transform_origin="" transition_duration="300" transition_easing="ease" transition_custom_easing="" motion_effects="" scroll_motion_devices="small-visibility,medium-visibility,large-visibility" animation_type="" animation_direction="left" animation_color="" animation_speed="0.3" animation_delay="0" animation_offset="" last="true" border_position="all" first="true"][fusion_text columns="" column_min_width="" column_spacing="" rule_style="" rule_size="" rule_color="" hue="" saturation="" lightness="" alpha="" user_select="" content_alignment_medium="" content_alignment_small="" content_alignment="" hide_on_mobile="small-visibility,medium-visibility,large-visibility" sticky_display="normal,sticky" class="" id="" margin_top="" margin_right="" margin_bottom="" margin_left="" fusion_font_family_text_font="" 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Steckbeck with Dale, Huffman & Babcock in Bluffton, Indiana. Serving northeastern Indiana, her firm focuses on special needs planning, estate planning, long-term care planning and probate, estate, and trust administration. Administering a supplemental need trust (SNT) for a beneficiary receiving federally subsidized housing can be extremely challenging. The first challenge is the highly technical vocabulary used by these programs. Federally subsidized housing includes traditional multifamily public housing (sometimes referred to as “housing projects”), the Housing Choice Voucher Program (formerly and sometimes still referred to as “Section 8” housing), and multi-family housing, which is sometimes alternately known as “Project-Based Section 8.” Other, more specialized voucher programs, provide housing benefits for veterans and individuals with particular disabilities. These programs are frequently lumped together as “HUD” benefits because they are partly funded and administered by the U.S. Department of Housing and Urban Development. To add to the complexity, local authorities known as Public Housing Authorities (PHAs) are responsible for the day-to-day operation of federally subsidized housing in each of their respective geographical locations, and each such PHA has its own guidelines and rules. The trustee’s next challenge is determining the type of housing support the trust beneficiary is receiving to assure compliance with relevant rules. This can be difficult because the SNT beneficiary may not know which particular program is providing housing support, and PHAs sometimes provide inconsistent and conflicting information. Income limits apply to all HUD programs. The income limits are not universal but are based on the geographical area where the beneficiary lives. The best resource for calculating the income limit for a particular region is on the HUD website at www.huduser.gov/portal/datasets/il.html. The amount of rent a resident pays to live in subsidized housing varies based on the type of program involved but is generally based on an individual’s monthly household income from all sources. To protect the SNT beneficiary, the trustee must determine which SNT distributions are treated as household income to the HUD recipient for purposes of this rent calculation. Changes to HOTMA Regulations The federal Housing Opportunity Through Modernization Act (HOTMA) was passed by Congress in July 2016. However, final regulations were not published until February 14, 2023, and HUD issued supplemental guidance in September 2023. The HOTMA regulations became effective January 1, 2024. A September 24, 2024 Housing Notice (Housing Notice H-2024-9) extended the date for full compliance from the original date of January 1, 2025, to an extended date of July 1, 2025. The HOTMA regulations significantly change the treatment of SNT distributions. Before the HOTMA regulations, distributions from an SNT were not counted as household income for HUD purposes as long as the distributions were “temporary, nonrecurring, or sporadic.” In other words, as long as the trustee did not follow routine and predictable distribution patterns, SNT distributions were not counted as income to the resident. HOTMA regulations have made substantial changes to this distribution paradigm. The new regulations focus on the trust’s income, treating distributions of trust income to the beneficiary as household income to determine the appropriate rent subsidy. In contrast, distributions of trust principal are excluded from the calculation. The HOTMA regulations provide only one clearly established exception to this rule, excluding trust income used to pay health or medical expenses for a minor. Some commentators on the new HOTMA regulations believe that distributions of trust income for any beneficiary’s health or medical expenses, regardless of age, are not counted as income. Still following this more expansive interpretation is risky until further guidance is published. Defining Trust Income Following the HOTMA regulations, the fundamental question for SNT distributions becomes: how do you define trust income? Answering this question is crucial in determining whether an SNT distribution to a subsidized housing resident is treated as income that will affect the resident’s benefits or principal that will not. But while the question seems quite simple on its surface, it is anything but. Defining a trust’s “income” is a complex legal and accounting concept governed by various state laws, and by the terms of each specific trust. Federal tax law generally treats distributions of the trust’s net income (after allocation of trust expenses) as taxable income to the beneficiary. However, only the trust’s income from interest, dividends, and rent is generally treated as income distributable to the beneficiary. Recognized capital gain is generally not considered income distributable to the beneficiary. In addition, the vast majority of states in the US have adopted some version of the Uniform Principal and Income Act (UPIA). These laws provide default rules as to which trust receipts are treated as income and which are treated as principal, as well as the allocation of expenses between income and principal. Trust documents may overrule these default rules and grant the trustee discretion to allocate trust receipts differently than the default rules, subject to certain limits. To further muddy the waters, UPIA rules and trustee discretion are not always the same as the IRS rules determining how trust income is taxed. The regulations seem consistent with traditional trust tax accounting rules such that the trust income allocated to the trust beneficiary is capped at the lesser of the beneficiary's distribution or the trust's net income. For example, if the trust has $2,000 of income, but the beneficiary only receives a $1,000 distribution, the deemed income is only the $1,000 distributed. Conversely, if the trust only has $1,000 of income and beneficiary receives a distribution of $2,000, only the $1,000 of trust income is deemed to the beneficiary. However, be forewarned that the HOTMA regulations do not provide any guidance regarding the definition of trust income or the interaction of state UPIA laws and the federal HOTMA regulations. Pursuant to a 2019 HUD notice, distributions to or from an ABLE account are expressly excluded from a subsidized housing resident’s income. This might provide a workaround. For example, if an SNT had $500 in dividend or interest income in a given year, the trustee could first distribute $500 to the HUD participant’s ABLE account. Any other distributions would be deemed to be made entirely from principal. Alternatively, the trust could be written or amended to provide that all distributions, other than those to an ABLE account, were to be treated as principal distributions. This notice predates the HOTMA regulations, so it is unclear how it applies under the new regulations. Relief may also come in the form of “safe harbors.” Notice PIH 2023-27 allows PHAs to use income determinations from other means-tested federal public assistance programs to verify annual income. However, the decision whether or not to use the safe harbor principal will be made on a case-by-case basis by individual PHAs, which could present a challenge to trustees administering multiple SNTs in varying locations. In short, for SNT trustees whose beneficiaries receive federal housing subsidies, there are more questions than answers at the current time. It becomes more important than ever that an SNT trustee has detailed information about the beneficiary’s housing benefits, and a line of communication with the relevant PHA to determine how and when that PHA will implement the HOTMA regulations. 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[/fusion_text][fusion_button link="https://www.specialneedsalliance.org/wp-content/uploads/2024/11/Supplemental-Needs-Trust-Distribution-and-Special-Needs-Housing-Subsidies-1.pdf" title="PDF version of The Voice" target="_self" link_attributes="" alignment_medium="" alignment_small="" alignment="center" modal="" hide_on_mobile="small-visibility,medium-visibility,large-visibility" sticky_display="normal,sticky" class="" id="" color="default" button_gradient_top_color_hover="" hue="" saturation="" lightness="" alpha="" button_gradient_top_color="" button_gradient_bottom_color_hover="" button_gradient_bottom_color="" gradient_start_position="" gradient_end_position="" gradient_type="" radial_direction="" linear_angle="180" accent_hover_color="" accent_color="" type="" bevel_color="" bevel_color_hover="" border_top="" border_right="" border_bottom="" border_left="" border_radius_top_left="" border_radius_top_right="" border_radius_bottom_right="" border_radius_bottom_left="" border_hover_color="" border_color="" size="" padding_top="" padding_right="" padding_bottom="" padding_left="" fusion_font_family_button_font="" fusion_font_variant_button_font="" font_size="" line_height="" letter_spacing="" text_transform="" stretch="default" margin_top="1rem" margin_right="" margin_bottom="" margin_left="" icon="" icon_position="left" icon_divider="no" hover_transition="none" animation_type="" animation_direction="left" animation_color="" animation_speed="0.3" animation_delay="0" animation_offset=""]Download PDF[/fusion_button][/fusion_builder_column][/fusion_builder_row][/fusion_builder_container] [post_title] => Supplemental Needs Trust Distribution and Special Needs Housing Subsidies [post_excerpt] => [post_status] => publish [comment_status] => open [ping_status] => closed [post_password] => [post_name] => supplemental-needs-trust-distribution-and-special-needs-housing-subsidies [to_ping] => [pinged] => [post_modified] => 2024-11-25 11:17:41 [post_modified_gmt] => 2024-11-25 16:17:41 [post_content_filtered] => [post_parent] => 0 [guid] => https://www.specialneedsalliance.org/?p=664761 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw ) [15] => WP_Post Object ( [ID] => 654389 [post_author] => 494 [post_date] => 2024-10-21 12:22:25 [post_date_gmt] => 2024-10-21 16:22:25 [post_content] => TUCSON, AZ, [October 22, 2024] - The Special Needs Alliance (SNA), a premier network of attorneys dedicated to disability and public benefits law, has announced its new leadership team for the 2024-2025 term. As the landscape of disability rights and services continues to evolve, this group of leaders is poised to drive forward the SNA's commitment to excellence in advocacy and support for individuals with disabilities and their families nationwide.

New President Takes the Helm

Tara Anne Pleat, CELA, of Wilcenski & Pleat PLLC in Clifton Park, NY, has been elected as the new president of the SNA. Pleat brings a unique blend of professional expertise and personal experience to her role. Leading the SNA is an honor — and a responsibility Pleat takes to heart. She stated, "Several years ago, my son was diagnosed with Asperger's syndrome, an autism spectrum disorder, and my family's experiences have deepened my understanding of the challenges faced by clients. I recognize the limitations of Medicaid funding and the need to vigorously advocate for better services.” In addition to her leadership role at SNA, Pleat is deeply involved in education and advocacy efforts. She serves as an adjunct professor at Albany Law School, teaching estate and financial planning for individuals with special needs and the elderly. Beginning in 2025, Pleat will expand her educational reach by joining the University of Miami's Adjunct Faculty for its LLM in Estate Planning program. Her commitment extends beyond the classroom through her service on various boards and committees. She is a board member for AIM Services, Inc. and serves on the Planned Giving Committee for the Wildwood Foundation, which funds a school for children with disabilities and provides services for individuals with developmental and intellectual disabilities of all ages. Pleat's diverse involvement across academic and nonprofit sectors exemplifies the SNA's commitment to comprehensive advocacy and education in the field of disability law.

2024 – 2025 Leadership Team and Board of Directors

Joining Pleat in guiding the SNA are:

President-Elect: Robert F. Brogan, CELA, Brogan Law Group, P.C., Brick, NJ
Vice President: Bryn Poland, Esq., Mayo & Poland, PLLC, Baytown, TX
Secretary: Elizabeth Noble Friman, Esq., Fleming & Curti, PLC, Tucson, AZ
Treasurer: Christopher W. Smith, Esq., Chalgian & Tripp Law Offices PLLC, Southfield, MI
Past President: Amy C. O'Hara, CELA, Littman Krooks, LLP, Rye Brook, NY

Directors:

Leonard R. Anderson, Esq., Barlow Anderson, Anchorage, AK
Roxanne J. Chang, Esq., Roxanne J. Chang Advocate, Plymouth, MI
Emily A. Donaldson, CELA, Stevens & Brand, Topeka, KS
Emma R. Hemness, CELA, Hemness Faller Elder Law, Brandon, FL
Emily B. Kile, Esq., Mushkatel, Gobbato & Kile, PLLC, Scottsdale, AZ
Elena A. Lidrbauch, CELA, Hickman, Lowder, Lidrbauch & Welch Co., LPA, Sheffield Village, OH
Jacob H. Menashe, Esq., Hickman Menashe, P.S., Lynnwood, WA
Rebecca C. Morgan, JD, LLM, Stetson University College of Law, Gulfport, FL
Ethan J. Ordog, Esq., Begley Law Group, Moorestown, NJ
Larry H. Rocamora, Esq., McPherson & Rocamora, PLLC, Durham, NC
Benjamin A. Rubin, Esq. LLM, Rubin Law, A Professional Corporation, Buffalo Grove, IL
Matthew T. Smith, Esq., Elder Law Lawyers McClelland & Associates, PLLC, Lexington, KY

Fresh Perspectives and Continued Excellence

The SNA board comprises a diverse group of legal professionals, each bringing unique expertise and perspectives to the organization. This year, the SNA is pleased to welcome two new members to its board: Jacob H. Menashe and Matthew T. Smith. Their addition further enhances the board's breadth of experience and fresh insights.

The board's collective knowledge spans various aspects of disability and public benefits law, ensuring that the SNA remains at the forefront of advocacy and legal support in this crucial field. Their combined efforts will drive the SNA's mission forward, continuing to provide valuable resources and support to both member attorneys and the broader disability community.

About the Special Needs Alliance

The SNA comprises more than 150 attorneys across 45 states, each invited based on their demonstrated excellence in disability and public benefits law. Members average 18 years of experience in the field, with many holding the prestigious Certified Elder Law Attorney (CELA) designation.

For more information about the Special Needs Alliance and its services, visit www.specialneedsalliance.org.

Media Contact:

Jihane Davidow, Executive Director

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This issue of The Voice® was written by SNA member Kristen M. Lewis and her colleague Emma H. Barry, both of Harrison, LLP in Atlanta, Georgia. Their firm focuses on special needs, estate and trust administration, guardianship and conservatorship and estate planning.

People with disabilities were created as sexual beings, just like people without disabilities. Many caregivers and many family members (and the public at large) assume that a person’s disabilities preclude any interest in or about appropriate sexual expression, health, and relationships – when nothing could be further from the truth. It may be more challenging to discuss these matters with a person who has one or more disabilities, but that is no excuse for ignoring this basic human need or hoping it will never become relevant in the person’s life.

The failure to address these issues appropriately can lead to numerous adverse outcomes, including peer-to-peer sexual abuse, breaking societal “rules of sex,” or even criminal liability and a lifelong label as a sexual predator. People with disabilities deserve mutually fulfilling interpersonal relationships – with or without sexual expression – but many must be taught how to engage with others in this sensitive area.

Persons with Disabilities Need to be Taught “The Rules of Sex”

In her seminal publication “The Rules of Sex: Social and Legal Guidelines for Those Who Have Never Been Told,” Dr. Nora Baladerian highlights a commonsense conclusion: if no one discusses the “rules of sex,” a person will not know what sexual behavior is “okay” and “not okay.” An untaught person may unwittingly break a societal rule of sex and face long-lasting consequences for the legal or social conduct violation. For many persons with disabilities, asexual act in and of itself is generally not the problem; rather, not knowing where it should be done, when it should be done, and with whom it should be done is typically the root cause of breaking the rules of sex. Legal or social rules that a person with a disability unknowingly violates on the where-when-with-whom spectrum are stumbling blocks for many persons whose parents or guardians feel ill-equipped to impart this important knowledge.

Dr. Baladerian’s workbook answers in “plain English” some of the most frequently asked questions about sex, which can be comprehended by persons 18 years of age or older, with or without intellectual or developmental disabilities. The Rules of Sex workbook is mercifully easy to work through, even for those neuro-typical adults who never got “plain English” answers to these questions when they were children. Those questions include the following:

What is “having sex”?
Who can you have sex with?
What happens if you have sex?
Can I have sex in my bedroom?
When is it okay to touch someone?
When can you talk about sex?
What is “privacy”?
What are my “sexual rights”?
Where can I do sexual things?
What kind of sex is against the law?

Studies have shown that the failure to educate persons with disabilities about the societal “rules of sex” increases the likelihood that they will perpetrate sexual abuse on their peers or other persons. If parents or guardians cannot (or will not) impart this education, there are many licensed psychologists, certified sex therapists, and certified sex educators to whom this task may be delegated. Appropriate sex education is also essential for persons with disabilities to recognize and articulate their sexual preferences (and to determine what kinds of sexual expression are not for them). People with disabilities of all ages are thinking about sex and are having sex, whether or not their parents or guardians are comfortable with that reality.

Sexual Health of Persons with Disabilities

Medical professionals who work with persons who have disabilities have long recognized that such persons are sexual beings (just like everyone else). However, there are many impediments to the healthy sexual development of children and adolescents with disabilities, including:

Societal and psychosocial barriers.
The often unpredictable timing of puberty.
Inaccessible medical equipment, including examination tables, weight scales and imaging devices.
Lack of appropriate routine and preventative gynecological and urological care.
Lack of examination adaptations to accommodate the person’s physical or neuromuscular challenges.
Lack of information regarding abstinence, contraceptives, and the impact of contraceptive drugs on a person’s overall health.
Historically inappropriate imposition of sterilization as the default approach to preventing persons with disabilities from procreating.
Lack of “developmentally appropriate” sex education for persons with disabilities.
Complete avoidance of topics such as sexual orientation, gender identity, sexually transmitted diseases, contraception, and abstinence.
The failure of IEPs (Individualized Education Programs) to require developmentally appropriate sex education for students with disabilities.
The adverse impact of the cultural, religious, and personal experiences of parents or guardians on their willingness to facilitate the sexual education of their children with disabilities.

Regular and preventative medical examinations of a person’s reproductive body parts and systems contribute to their overall health. They may even lead to the discovery of past or ongoing sexual abuse. Finding medical providers of sexual health care for persons with disabilities can be a challenge. The American College of Obstetricians and Gynecologists recommends regular screenings of persons with disabilities for cervical cancer, breast cancer, prostate cancer, and sexually transmitted diseases. These tests are just as essential for persons with disabilities as for persons without disabilities, due to a similar incidence of these conditions in both populations. However, because many medical providers see people with disabilities as “asexual” patients, they neglect to ask about the person’s past or present sexual activity, or any history of sexual abuse, nor do they routinely recommend such regular screenings for diseases of their sexual body parts.

Medical providers often fail to consider that a patient’s atypical physical symptoms could indicate underlying problems with their sexual health (e.g., abdominal pain that could be a symptom of a sexually transmitted infection). At a minimum, medical providers and their staff should be prompted to ask if a patient with a disability: has special needs or circumstances that must be accommodated before and during a physical examination; needs a longer appointment to address their unique needs during an examination; needs an accessible exam room with adaptive equipment; or, requires assistance with safe transfer techniques to position the patient on an examination table or platform scale.

Advising the medical provider of the anticipated presence of one or more support personnel during a scheduled examination can be essential to the visit’s success.

Sexual Relationships of Persons with Disabilities

For many families, their child or loved one with a disability is first exposed to sexual relationships and encounters at a traditional college or university, or during an inclusive post-secondary educational program hosted at a campus environment. The National Council on Disability has issued reports about the scope of sexual assault on campuses as it pertains to students with disabilities, as well as the programs and policies maintained by educational institutions to minimize sexual assaults on campus and to address those that do occur. Federal efforts (including the Department of Justice and the White House Task Force to Protect Students from Sexual Assault) have repeatedly excluded disability status as a demographic in sample “campus climate surveys.”

A recent study by the Association of American Universities did include disability status as a relevant demographic, finding that one-in-three female undergraduates with a disability reported non-consensual sexual contact involving physical force or incapacitation (compared to one in five female undergraduates without a disability).

Although modest strides have been made on both the federal and state levels regarding the development and enforcement of sexual assault policies (including reporting, investigating, and redressing sexual assault on campus), many barriers remain for victims of on-campus sexual assault, often stemming from accessibility challenges and a lack of relevant accommodations. Many colleges fail to identify students with disabilities as a population at increased risk of sexual assault, nor do they recognize the consequent need for novel programs and policies to address their unique vulnerabilities. Before students with disabilities formally enroll in colleges or universities of interest to them, families should conduct rigorous research regarding the efforts of each institution to implement effective and robust sexual abuse prevention policies and to offer resources and accommodations that are appropriate for and accessible to individuals with disabilities.

Even if students with disabilities are well-advised about the relevant federal, state, and local laws regarding the prevention of on-campus sexual assault and the remedies and rights of the victims of sexual assault, personal counseling customized for each student may also be essential to minimize this risk. Such counseling often includes an assessment of whether a student with a disability has the capacity to consent to sexual activity under relevant state statutes and case law (which can vary widely). Professionals skilled in the fields of disability, psychology and forensic interviewing are trained to apply a standard by which a person’s capacity to consent to sexual activity can be accurately measured by direct appropriate questioning about sex.

Finally, it is essential to maintain an ongoing dialog with students while they are attending an on-campus program regarding their sexual safety (as awkward as that may be). Families need to remind themselves continually that all students – with and without disabilities – are exposed to and exploring sexual behavior.

Many of the inclusive post-secondary educational programs for students with disabilities offer specific courses on developing appropriate peer-to-peer friendships and intimate relationships as part of a “life skills” curriculum (from which many neuro-typical students also could derive great benefit). Thus, an increasing number of people with disabilities are entering into civil unions (most of which do not involve marriage) and establishing households together. Whether or not their extended families approve, these unions often involve consensual sexual relationships (and occasionally result in the birth of children). Even in the context of communities comprised exclusively of persons with disabilities, residents are having sex (notwithstanding a community’s formal “No Sex” policy).

Although staff counselors can make some progress with residents, supplemental input from supportive family members, parents, and guardians is frequently needed to help persons with disabilities protect themselves from unhealthy personal and intimate relationships in such settings. The first step towards this end is to acknowledge that: talking about sex is difficult and awkward; people with disabilities will have sex whether or not they are counseled about it; and families and clients need our guidance and support on their journey in assisting loved ones with disabilities to establish healthy sexual relationships.

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[/fusion_text][fusion_button link="https://www.specialneedsalliance.org/wp-content/uploads/2024/10/the_voice_oct_24.pdf" title="PDF version of The Voice" target="_blank" link_attributes="" alignment_medium="" alignment_small="" alignment="center" modal="" hide_on_mobile="small-visibility,medium-visibility,large-visibility" sticky_display="normal,sticky" class="" id="" color="default" button_gradient_top_color_hover="" hue="" saturation="" lightness="" alpha="" button_gradient_top_color="" button_gradient_bottom_color_hover="" button_gradient_bottom_color="" gradient_start_position="" gradient_end_position="" gradient_type="" radial_direction="" linear_angle="180" accent_hover_color="" accent_color="" type="" bevel_color="" bevel_color_hover="" border_top="" border_right="" border_bottom="" border_left="" border_radius_top_left="" border_radius_top_right="" border_radius_bottom_right="" border_radius_bottom_left="" border_hover_color="" border_color="" size="" padding_top="" 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[post_parent] => 0 [guid] => https://www.specialneedsalliance.org/?p=652519 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw ) [17] => WP_Post Object ( [ID] => 652085 [post_author] => 494 [post_date] => 2024-10-15 08:38:10 [post_date_gmt] => 2024-10-15 12:38:10 [post_content] => [fusion_builder_container type="flex" hundred_percent="no" hundred_percent_height="no" min_height_medium="" min_height_small="" min_height="" hundred_percent_height_scroll="no" align_content="stretch" flex_align_items="flex-start" flex_justify_content="flex-start" flex_wrap_medium="" flex_wrap_small="" flex_wrap="wrap" flex_column_spacing="" hundred_percent_height_center_content="yes" equal_height_columns="no" container_tag="div" menu_anchor="" hide_on_mobile="small-visibility,medium-visibility,large-visibility" status="published" publish_date="" class="" id="" spacing_medium="" margin_top_medium="" margin_bottom_medium="" spacing_small="" margin_top_small="" 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filter_invert="0" filter_sepia="0" filter_opacity="100" filter_blur="0" filter_hue_hover="0" filter_saturation_hover="100" filter_brightness_hover="100" filter_contrast_hover="100" filter_invert_hover="0" filter_sepia_hover="0" filter_opacity_hover="100" filter_blur_hover="0" transform_type="regular" transform_hover_element="self" transform_scale_x="1" transform_scale_y="1" transform_translate_x="0" transform_translate_y="0" transform_rotate="0" transform_skew_x="0" transform_skew_y="0" transform_scale_x_hover="1" transform_scale_y_hover="1" transform_translate_x_hover="0" transform_translate_y_hover="0" transform_rotate_hover="0" transform_skew_x_hover="0" transform_skew_y_hover="0" transform_origin="" transition_duration="300" transition_easing="ease" transition_custom_easing="" motion_effects="" scroll_motion_devices="small-visibility,medium-visibility,large-visibility" animation_type="" animation_direction="left" animation_color="" animation_speed="0.3" animation_delay="0" animation_offset="" last="true" border_position="all" first="true"][fusion_text columns="" column_min_width="" column_spacing="" rule_style="" rule_size="" rule_color="" hue="" saturation="" lightness="" alpha="" user_select="" content_alignment_medium="" content_alignment_small="" content_alignment="" hide_on_mobile="small-visibility,medium-visibility,large-visibility" sticky_display="normal,sticky" class="" id="" margin_top="" margin_right="" margin_bottom="" margin_left="" fusion_font_family_text_font="" fusion_font_variant_text_font="" font_size="" line_height="" letter_spacing="" text_transform="" text_color="" animation_type="" animation_direction="left" animation_color="" animation_speed="0.3" animation_delay="0" animation_offset="" logics=""]This article is provided by SNA member Elizabeth Gray, CELA or McCandlish & Lillard in Fairfax, VA. Elizabeth focuses her practice on elder law and special needs law; trust, estate and guardianship disputes; and, wills, trusts and estates. This is an overview of the fundamentals of public benefits law, particularly focusing on Social Security’s need-based benefits and entitlement programs. This information can be invaluable for families navigating the complexities of securing financial support for their loved ones with special needs.

What are Need-Based Benefits?

Need-Based Benefits: These encompass programs such as Supplemental Security Income (SSI), Medicaid, food stamps, utility payment assistance, housing subsidies/vouchers, in-home support services, and attendant care (Medicaid Waivers). Eligibility for these programs hinges on demonstrating need based on disability and limited income and resources. Supplemental Security Income (SSI): SSI, a federal income supplement program administered by the Social Security Administration, provides monthly cash payments to disabled individuals with minimal or no income to assist with basic needs like food* and shelter. Qualifying for SSI often entails automatic eligibility for Medicaid, with some states requiring separate applications for Medicaid. *New rules from Social Security eliminated “food” from ISM (In-Kind Support & Maintenance). ISM, if paid for by a parent, lowers the amount of the SSI payment on a monthly basis. With this new rule, however, it is only shelter that will be used in calculating ISM for the SSI recipient.

What Are Entitlement Programs?

Entitlement-Based Benefits: These include Social Security Retirement (SSR), Social Security Disability Income (SSDI), Childhood Disability Benefits (CDB), Medicare, and Special Education. Unlike need-based benefits, entitlement programs don't disqualify individuals based on unearned income or available resources. Childhood Disability Benefits (CDB): Childhood Disability Benefits (CDB) is a Social Security Administration program providing cash assistance based on a disabled child's parent's Social Security contributions. Qualifying for CDB does not affect the Social Security payments of the parent or their spouse. Importantly, individuals eligible for CDB can subsequently qualify for Medicare, a superior health insurance program compared to Medicaid.

The Difference

While SSI and SSD are both disability benefit programs administered by the Social Security Administration (SSA), they serve different purposes and have different eligibility criteria. SSD benefits are based on an individual's work history and contributions to the Social Security system, while SSI is a needs-based program designed to provide assistance to individuals with limited income and resources. Many individuals with special needs may not have substantial work histories or may not qualify for SSD benefits based on their own earnings, making SSI a vital source of financial support. While SSI provides modest monthly benefits, it acts as a vital gateway to various support services, including Medicaid. Similarly, CDB not only offers financial assistance but also opens doors to Medicare coverage. Together, these programs ensure the long-term financial security and well-being of individuals with special needs.

Reasons To Apply For SSI

While the monthly benefit provided by SSI may indeed be modest, there are several reasons why it is still highly beneficial for individuals with special needs, especially when considering their long-term financial security and well-being. Here are some key points:

Asset Limitations and Income Restrictions: SSI eligibility is contingent upon meeting strict asset and income limitations set by the SSA.
Protecting Eligibility for Other Programs: By applying for SSI, individuals with special needs can also safeguard their eligibility for other critical programs and services, such as Supplemental Nutrition Assistance Program (SNAP), housing assistance, Medicaid Waivers, and vocational rehabilitation services. These programs can offer further assistance and opportunities for individuals to enhance their quality of life and independence.
Gateway to Other Benefits: While SSI provides modest monthly benefits, it acts as a vital gateway to various support services, including Medicaid Waivers. Similarly, CDB not only offers financial assistance but also opens doors to Medicare coverage. Together, these programs ensure the long-term financial security and well-being of individuals with special needs.

What’s So Great About Medicare

Medicare offers comprehensive healthcare coverage, including hospital stays, doctor visits, and prescription medications. Upon receiving Medicare, individuals with special needs gain access to higher quality healthcare services and providers. And Medicaid complements Medicare by covering additional costs such as premiums, deductibles, and co-payments, thus reducing out-of-pocket expenses for the special needs individual.[/fusion_text][fusion_separator style_type="default" hide_on_mobile="small-visibility,medium-visibility,large-visibility" sticky_display="normal,sticky" class="" id="" flex_grow="0" top_margin="" bottom_margin="1rem" width="" height="20" alignment="center" border_size="" weight="" amount="" sep_color="" hue="" saturation="" lightness="" alpha="" icon="" icon_size="" icon_color="" icon_circle="" icon_circle_color="" /][fusion_text columns="" column_min_width="" column_spacing="" rule_style="" rule_size="" rule_color="" hue="" saturation="" lightness="" alpha="" user_select="" content_alignment_medium="" content_alignment_small="" content_alignment="" hide_on_mobile="small-visibility,medium-visibility,large-visibility" sticky_display="normal,sticky" class="" id="" margin_top="" margin_right="" margin_bottom="" margin_left="" fusion_font_family_text_font="" fusion_font_variant_text_font="" font_size="" line_height="" letter_spacing="" text_transform="" text_color="" animation_type="" animation_direction="left" animation_color="" animation_speed="0.3" animation_delay="0" animation_offset="" logics=""] About this Article: We hope you find this article informative, but it is not legal advice. You should consult your own attorney, who can review your specific situation and account for variations in state law and local practices. Laws and regulations are constantly changing, so the longer it has been since an article was written, the greater the likelihood that the article might be out of date. SNA members focus on this complex, evolving area of law. To locate a member in your state, visit Find an Attorney. Requirements for Reproducing this Article: The above article may be reprinted only if it appears unmodified, including both the author description above the title and the “About this Article” paragraph immediately following the article, accompanied by the following statement: “Reprinted with permission of the Special Needs Alliance – www.specialneedsalliance.org.” The article may not be reproduced online. Instead, references to it should link to it on the SNA website. [/fusion_text][fusion_button link="https://www.specialneedsalliance.org/wp-content/uploads/2024/11/Whats-So-Great-About-Supplement-Security-Income-Medicare-for-Adults-with-Special-Needs.pdf" title="" target="_self" link_attributes="" alignment_medium="" alignment_small="" alignment="center" modal="" hide_on_mobile="small-visibility,medium-visibility,large-visibility" sticky_display="normal,sticky" class="" id="" color="default" button_gradient_top_color_hover="" hue="" saturation="" lightness="" alpha="" button_gradient_top_color="" button_gradient_bottom_color_hover="" button_gradient_bottom_color="" gradient_start_position="" gradient_end_position="" gradient_type="" radial_direction="" linear_angle="180" accent_hover_color="" accent_color="" type="" bevel_color="" bevel_color_hover="" border_top="" border_right="" border_bottom="" border_left="" border_radius_top_left="" border_radius_top_right="" border_radius_bottom_right="" border_radius_bottom_left="" border_hover_color="" border_color="" size="" padding_top="" padding_right="" padding_bottom="" padding_left="" fusion_font_family_button_font="" fusion_font_variant_button_font="" font_size="" line_height="" letter_spacing="" text_transform="" stretch="default" margin_top="" margin_right="" margin_bottom="" margin_left="" icon="" icon_position="left" icon_divider="no" hover_transition="none" animation_type="" animation_direction="left" animation_color="" animation_speed="0.3" animation_delay="0" animation_offset=""]Download PDF[/fusion_button][/fusion_builder_column][/fusion_builder_row][/fusion_builder_container] [post_title] => What’s So Great About Supplement Security Income & Medicare for Adults with Special Needs [post_excerpt] => [post_status] => publish [comment_status] => open [ping_status] => closed [post_password] => [post_name] => whats-so-great-about-supplement-security-income-medicare-for-adults-with-special-needs [to_ping] => [pinged] => [post_modified] => 2024-11-14 08:33:16 [post_modified_gmt] => 2024-11-14 13:33:16 [post_content_filtered] => [post_parent] => 0 [guid] => https://www.specialneedsalliance.org/?p=652085 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw ) [18] => WP_Post Object ( [ID] => 641804 [post_author] => 1 [post_date] => 2024-09-17 10:32:50 [post_date_gmt] => 2024-09-17 14:32:50 [post_content] => [fusion_builder_container type="flex" hundred_percent="no" hundred_percent_height="no" hundred_percent_height_scroll="no" align_content="stretch" flex_align_items="flex-start" flex_justify_content="flex-start" flex_wrap="wrap" hundred_percent_height_center_content="yes" equal_height_columns="no" container_tag="div" hide_on_mobile="small-visibility,medium-visibility,large-visibility" status="published" border_style="solid" box_shadow="no" box_shadow_blur="0" box_shadow_spread="0" gradient_start_position="0" gradient_end_position="100" gradient_type="linear" radial_direction="center center" linear_angle="180" background_position="center center" background_repeat="no-repeat" fade="no" background_parallax="none" enable_mobile="no" parallax_speed="0.3" background_blend_mode="none" video_aspect_ratio="16:9" video_loop="yes" video_mute="yes" pattern_bg="none" pattern_bg_style="default" pattern_bg_opacity="100" pattern_bg_blend_mode="normal" mask_bg="none" mask_bg_style="default" mask_bg_opacity="100" mask_bg_transform="left" mask_bg_blend_mode="normal" absolute="off" absolute_devices="small,medium,large" sticky="off" sticky_devices="small-visibility,medium-visibility,large-visibility" sticky_transition_offset="0" scroll_offset="0" animation_direction="left" animation_speed="0.3" animation_delay="0" filter_hue="0" filter_saturation="100" filter_brightness="100" filter_contrast="100" filter_invert="0" filter_sepia="0" filter_opacity="100" filter_blur="0" filter_hue_hover="0" filter_saturation_hover="100" filter_brightness_hover="100" filter_contrast_hover="100" filter_invert_hover="0" filter_sepia_hover="0" filter_opacity_hover="100" filter_blur_hover="0"][fusion_builder_row][fusion_builder_column type="1_1" layout="1_1" align_self="auto" content_layout="column" align_content="flex-start" valign_content="flex-start" content_wrap="wrap" center_content="no" column_tag="div" target="_self" hide_on_mobile="small-visibility,medium-visibility,large-visibility" sticky_display="normal,sticky" order_medium="0" order_small="0" hover_type="none" border_style="solid" box_shadow="no" box_shadow_blur="0" box_shadow_spread="0" background_type="single" gradient_start_position="0" gradient_end_position="100" gradient_type="linear" radial_direction="center center" linear_angle="180" lazy_load="none" background_position="left top" background_repeat="no-repeat" background_blend_mode="none" sticky="off" sticky_devices="small-visibility,medium-visibility,large-visibility" absolute="off" filter_type="regular" filter_hover_element="self" filter_hue="0" filter_saturation="100" filter_brightness="100" filter_contrast="100" filter_invert="0" filter_sepia="0" filter_opacity="100" filter_blur="0" filter_hue_hover="0" filter_saturation_hover="100" filter_brightness_hover="100" filter_contrast_hover="100" filter_invert_hover="0" filter_sepia_hover="0" filter_opacity_hover="100" filter_blur_hover="0" transform_type="regular" transform_hover_element="self" transform_scale_x="1" transform_scale_y="1" transform_translate_x="0" transform_translate_y="0" transform_rotate="0" transform_skew_x="0" transform_skew_y="0" transform_scale_x_hover="1" transform_scale_y_hover="1" transform_translate_x_hover="0" transform_translate_y_hover="0" transform_rotate_hover="0" transform_skew_x_hover="0" transform_skew_y_hover="0" transition_duration="300" transition_easing="ease" scroll_motion_devices="small-visibility,medium-visibility,large-visibility" animation_direction="left" animation_speed="0.3" animation_delay="0" last="true" border_position="all" first="true" min_height="" link=""][fusion_text columns="" column_min_width="" column_spacing="" rule_style="" rule_size="" rule_color="" hue="" saturation="" lightness="" alpha="" user_select="" content_alignment_medium="" content_alignment_small="" content_alignment="" hide_on_mobile="small-visibility,medium-visibility,large-visibility" sticky_display="normal,sticky" class="" id="" margin_top="" margin_right="" margin_bottom="" margin_left="" fusion_font_family_text_font="" fusion_font_variant_text_font="" font_size="" line_height="" letter_spacing="" text_transform="" text_color="" animation_type="" animation_direction="left" animation_color="" animation_speed="0.3" animation_delay="0" animation_offset="" logics=""] The Setting Every Community Up for Retirement Enhancement (SECURE) Act, signed into law in December 2019, brought significant changes to retirement planning. For special needs attorneys, these changes have profound implications on how we structure and manage trusts for beneficiaries with disabilities.

Key Changes Introduced by the SECURE Act

Prior to the SECURE Act, beneficiaries of inherited IRAs could stretch distributions over their life expectancy. This strategy allowed for extended tax-deferred growth and potentially lower tax brackets for distributions. The SECURE Act eliminated this option for most non-spouse beneficiaries, including many special needs trusts. The Act introduced a new 10-year distribution rule for most non-spouse beneficiaries. Under this rule, the entire balance of an inherited IRA must be distributed by the end of the tenth calendar year following the year of the account owner's death. This compressed timeframe can lead to larger distributions and potentially higher tax burdens. Importantly, exceptions to the 10-year rule apply to eligible designated beneficiaries (EDBs). These EDBs include:

Surviving spouses
Disabled or chronically ill individuals
Individuals not more than 10 years younger than the deceased account owner
Minor children of the account owner (until they reach the age of majority).

These exceptions allow for distributions based on life expectancy, similar to the old rules. To be eligible for the life-expectancy-based distribution schedule under the disabled or chronically ill exception, an individual must satisfy one of the definitions set by the SECURE Act. The good news is that the SECURE Act adopted the Social Security definition of disability, and, as a result, an individual receiving Social Security Disability, Supplemental Security Income, or Childhood Disability Benefits will automatically satisfy the definition. An individual with a chronic illness must meet either of the following criteria: (1) the individual is unable to perform (without substantial assistance from another individual) at least two activities of daily living for an indefinite period due to a loss of functional capacity; or (2) the individual requires substantial supervision to protect them from threats to health and safety due to severe cognitive impairment. Such disability or chronic illness must be documented by October 31st of the year following the account owner’s death.

What Are the Benefits of Leaving an IRA to a Person with a Disability Post-SECURE Act?

While the SECURE Act has complicated retirement planning for many, it has preserved and potentially enhanced certain advantages for beneficiaries with disabilities. Unlike most beneficiaries subject to the 10-year rule, a disabled individual can still stretch distributions over their life expectancy. This allows for continued tax-deferred growth and potentially lower annual tax burden. The potential reduction in tax liability is two-fold: lower annual withdrawals are less likely to push the beneficiary into higher tax brackets, and beneficiaries with disabilities often have lower overall income, potentially placing them in lower tax brackets than non-disabled beneficiaries. Additionally, with a properly structured special needs trust for a disabled beneficiary, an IRA can be left to the trust, to protect the beneficiary’s eligibility for government benefits.

Impact on Special Needs Trusts

Initial interpretations of the SECURE Act raised significant concerns among special needs planners regarding the viability of accumulation trusts for EDBs. Many feared that only conduit trusts would qualify for the life expectancy payout method, potentially forcing distributions that could jeopardize means-tested benefits for beneficiaries with special needs. However, the regulations finalized in 2024 provided a welcome clarification. These rules allow the life expectancy payout for any EDB of an accumulation trust, not limiting this favorable treatment to conduit trusts alone. This interpretation represents significant relief for special needs planning, allowing for more flexible trust structures that can both protect government benefits and take advantage of extended distribution periods. The ability to use accumulation trusts in this manner provides trustees with greater discretion in managing distributions, potentially leading to more effective long-term financial management for beneficiaries with disabilities or chronic illnesses. Furthermore, subsequent related legislation, SECURE 2.0, addressed a significant concern arising from the original SECURE Act by providing clarity on the treatment of special needs trusts established for beneficiaries with disabilities, confirming that such trusts may designate a charitable organization as the remainder beneficiary without triggering the accelerated 10-year distribution rule. It's crucial to note that this provision does not apply universally to all charitable entities. Grantors must exercise caution to avoid naming a disqualified charity, such as a private foundation, as a remainder beneficiary. This development opens up new planning strategies for individuals who wish to provide a lifetime benefit for a loved one with special needs with a remainder to important charitable causes, particularly charities that may have provided support and assistance to the disabled individual during their lifetime.

Conclusion

The SECURE Act has undeniably altered the landscape of special needs planning, presenting challenges and opportunities for attorneys and their clients. The elimination of the "stretch" IRA and the introduction of the 10-year distribution rule have necessitated reevaluating traditional planning strategies. However, by understanding these changes and adapting our approaches, we continue to provide effective, comprehensive planning for individuals with special needs. As we navigate the new terrain of SECURE Act and regulations, it's crucial to remember that the fundamental goals of special needs planning remain unchanged: to provide financial security, maintain eligibility for government benefits, and enhance the quality of life for individuals with disabilities. The SECURE Act has not altered these objectives but changed the tools and strategies we use to achieve them. In this evolving legal and financial landscape, adaptability is key. Special needs attorneys must remain proactive, continuously educate themselves and their clients, and be willing to embrace new planning techniques. By doing so, we can ensure that we continue to serve our clients effectively, helping them secure a stable and fulfilling future for their loved ones with special needs. [/fusion_text][fusion_button link="https://www.specialneedsalliance.org/wp-content/uploads/2024/11/Navigating-Special-Needs-Planning-in-the-Post-SECURE-Act-Landscape.pdf" title="" target="_self" link_attributes="" alignment_medium="" alignment_small="" alignment="center" modal="" hide_on_mobile="small-visibility,medium-visibility,large-visibility" sticky_display="normal,sticky" class="" id="" color="default" button_gradient_top_color_hover="" hue="" saturation="" lightness="" alpha="" button_gradient_top_color="" button_gradient_bottom_color_hover="" button_gradient_bottom_color="" gradient_start_position="" gradient_end_position="" gradient_type="" radial_direction="" linear_angle="180" accent_hover_color="" accent_color="" type="" bevel_color="" bevel_color_hover="" border_top="" border_right="" border_bottom="" border_left="" border_radius_top_left="" border_radius_top_right="" border_radius_bottom_right="" border_radius_bottom_left="" border_hover_color="" border_color="" size="" padding_top="" padding_right="" padding_bottom="" padding_left="" fusion_font_family_button_font="" fusion_font_variant_button_font="" font_size="" line_height="" letter_spacing="" text_transform="" stretch="default" margin_top="" margin_right="" margin_bottom="" margin_left="" icon="" icon_position="left" icon_divider="no" hover_transition="none" animation_type="" animation_direction="left" animation_color="" animation_speed="0.3" animation_delay="0" animation_offset=""]Download PDF[/fusion_button][fusion_text columns="" column_min_width="" column_spacing="" rule_style="" rule_size="" rule_color="" hue="" saturation="" lightness="" alpha="" user_select="" content_alignment_medium="" content_alignment_small="" content_alignment="" hide_on_mobile="small-visibility,medium-visibility,large-visibility" sticky_display="normal,sticky" class="" id="" margin_top="" margin_right="" margin_bottom="" margin_left="" fusion_font_family_text_font="" fusion_font_variant_text_font="" font_size="" line_height="" letter_spacing="" text_transform="" text_color="" animation_type="" animation_direction="left" animation_color="" animation_speed="0.3" animation_delay="0" animation_offset="" logics=""]

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[/fusion_text][/fusion_builder_column][/fusion_builder_row][/fusion_builder_container] [post_title] => Navigating Special Needs Planning in the Post-SECURE Act Landscape [post_excerpt] => This issue of The Voice® is written by SNA member Shannon Laymon-Pecoraro, CELA of Parks Zeigler, PLLC in Virginia Beach, VA. Her firm’ services clients in the areas of family law, elder law, special needs planning, and will, trusts, and estates. [post_status] => publish [comment_status] => open [ping_status] => closed [post_password] => [post_name] => navigating-special-needs-planning-in-the-post-secure-act-landscape [to_ping] => [pinged] => [post_modified] => 2024-11-12 08:28:47 [post_modified_gmt] => 2024-11-12 13:28:47 [post_content_filtered] => [post_parent] => 0 [guid] => https://www.specialneedsalliance.org/?p=641804 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw ) [19] => WP_Post Object ( [ID] => 639087 [post_author] => 1 [post_date] => 2024-09-09 12:47:37 [post_date_gmt] => 2024-09-09 16:47:37 [post_content] => [fusion_builder_container type="flex" hundred_percent="no" hundred_percent_height="no" min_height_medium="" min_height_small="" min_height="" hundred_percent_height_scroll="no" align_content="stretch" flex_align_items="flex-start" flex_justify_content="flex-start" flex_wrap_medium="" flex_wrap_small="" flex_wrap="wrap" flex_column_spacing="" 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background_position="left top" background_repeat_medium="" background_repeat_small="" background_repeat="no-repeat" background_size_medium="" background_size_small="" background_size="" background_custom_size="" background_custom_size_medium="" background_custom_size_small="" background_blend_mode_medium="" background_blend_mode_small="" background_blend_mode="none" render_logics="" sticky="off" sticky_devices="small-visibility,medium-visibility,large-visibility" sticky_offset="" absolute="off" absolute_props="" filter_type="regular" filter_hover_element="self" filter_hue="0" filter_saturation="100" filter_brightness="100" filter_contrast="100" filter_invert="0" filter_sepia="0" filter_opacity="100" filter_blur="0" filter_hue_hover="0" filter_saturation_hover="100" filter_brightness_hover="100" filter_contrast_hover="100" filter_invert_hover="0" filter_sepia_hover="0" filter_opacity_hover="100" filter_blur_hover="0" transform_type="regular" transform_hover_element="self" transform_scale_x="1" transform_scale_y="1" transform_translate_x="0" transform_translate_y="0" transform_rotate="0" transform_skew_x="0" transform_skew_y="0" transform_scale_x_hover="1" transform_scale_y_hover="1" transform_translate_x_hover="0" transform_translate_y_hover="0" transform_rotate_hover="0" transform_skew_x_hover="0" transform_skew_y_hover="0" transform_origin="" transition_duration="300" transition_easing="ease" transition_custom_easing="" motion_effects="" scroll_motion_devices="small-visibility,medium-visibility,large-visibility" animation_type="" animation_direction="left" animation_color="" animation_speed="0.3" animation_delay="0" animation_offset="" last="true" border_position="all" first="true"][fusion_text columns="" column_min_width="" column_spacing="" rule_style="" rule_size="" rule_color="" hue="" saturation="" lightness="" alpha="" user_select="" content_alignment_medium="" content_alignment_small="" content_alignment="" hide_on_mobile="small-visibility,medium-visibility,large-visibility" sticky_display="normal,sticky" class="" id="" margin_top="" margin_right="" margin_bottom="" margin_left="" fusion_font_family_text_font="" fusion_font_variant_text_font="" font_size="" line_height="" letter_spacing="" text_transform="" text_color="" animation_type="" animation_direction="left" animation_color="" animation_speed="0.3" animation_delay="0" animation_offset="" logics=""] Careful financial planning is always a good idea — especially if you have a loved one with special needs. After all, many people with special needs have low earning potential and rely on means-tested government benefits (Medicaid, SSI, housing vouchers, and SNAP), settlements, and/or support from family members. Understanding the roles of public benefits, taxes, living and healthcare expenses, and investment income, as well as regulations and rights pertaining to special needs, requires a professional hand. Thankfully, there are people you can turn to for help. As a founding member and former president of the Special Needs Alliance, I’m a passionate advocate for special needs families and have seen firsthand their struggles and successes. In this article, I’ll explain the importance of finding a quality, special needs-focused financial planner and special needs planning attorney, and the important tasks they can help you accomplish.

The Special Needs Planning + Financial Planning Partnership

To be the most prepared, you need two professionals on your team: a special needs planning attorney and a financial planner. Special needs attorneys are experts on the public benefits that may be available to you and the legal planning required to obtain and preserve them, while financial planners can help develop a specific plan to ensure long-term financial security. Financial planners and special needs planning attorneys work together to ensure that all legal documents, such as wills, trusts, and powers of attorney, are properly drafted and aligned with your public benefits and financial plan. Their partnership ensures that:

Detailed financial information is collected, and all assets are accounted for.
Special needs planning documents are properly created and updated.
Public benefits eligibility is preserved.
Legal and financial strategies are harmonized to minimize tax liabilities and legal complications.

Since these two roles need to work closely together, it’s key to find individuals who are compatible, good communicators, or have worked together in the past. The easiest route may be to find a professional who is both a special needs planning attorney and certified financial planner, but at the very least, consider a firm with both these capabilities. In addition, check that any potential firm also coordinates with CPAs who can help you understand and take advantage of ever-evolving tax deductions and credits.

Finding the Right Help for You

If possible, avoid generalists claiming to be experts in all types of law. While it may seem efficient to find someone who knows a bit of everything, the law is just too complex, and a focused specialist will provide the best guidance. Ask potential planners what percentage of their caseload involves special needs planning and look for participation in peer-reviewed professional special needs organizations. These organizations, like the Special Needs Alliance, are an excellent starting point for finding the right representation. Finally, make sure the professionals you find are a good fit for your personality. You’ll be working with these people for a long time, and you need to feel comfortable with them.

What Your Team Will Do for You

After you’ve carefully selected professionals to help you with your special needs planning, here are the services you can expect to receive. Clarification of Goals and Strategy Development: Before making a long-term financial plan for your loved one with special needs, you’ll need to outline your specific goals. Once those goals are established, your financial planner will determine the financial resources necessary to accomplish them, and your special needs attorney will create the legal structure to obtain eligibility for public benefits and support those resources. This might include:

Taking inventory of all assets and liabilities.

Creating a strategy that encompasses public benefits, investments, insurance, and tax planning to ensure your loved one’s financial security during your lifetime and efficient transfer of wealth upon death.
Evaluating and recommending adjustments to existing investment portfolios to align with special needs planning goals.

For example, I once worked with a couple determined to maintain the standard of living their children, including their child with special needs, had grown accustomed to, even after they were no longer there to support him. Initially they had decided, upon the death of the final parent, to create a special needs trust funded with 50 percent of their assets for the benefit of their child with special needs and give the remaining 50 percent to their other child. However, after working with them to budget expenses and calculate exactly how much they would need to set aside based on their children’s expected lifespans, it turned out they would need to use closer to 80 percent of their estate to reach their goals for their child with special needs. While this was an intimidating percentage to face, I also informed them of several benefit programs they qualified for to help supplement the trust money and create a more realistic way to achieve their goal. Help Navigating Legal and Tax Implications: A significant part of special needs planning involves understanding and mitigating the legal and tax implications of asset transfers. Public benefits and tax laws, especially involving Medicaid, are complex and require a professional level of understanding to take full advantage of the benefits they are meant to provide. Certain benefits and premium tax credits are there for people, but you must first, know they exist and, second, understand how to apply for them. This is where your legal help comes in. Your financial planning, CPA, and special needs planning team will provide insights into:

Tax-efficient strategies to reduce income, estate, and inheritance taxes.
Eligibility for public benefits.
The legal requirements for different types of asset transfers and beneficiary designations.
Setting up trusts and other legal mechanisms to protect assets and ensure they are used according to your wishes.

Ongoing Monitoring and Adjustments: Special needs planning is not a one-time event but rather an ongoing process that requires regular review and adjustments. Your team will help by:

Monitoring the special needs plan to ensure it stays aligned with your goals and any changes in your financial situation or family dynamics.
Advising on necessary updates to the special needs plan in response to changes in the law and life events such as marriage, divorce, birth of children, or changes in health.
Ensuring that beneficiary designations and asset titling are kept current.

Everyone will have different needs depending on their situation — some may need to check in with their team quarterly, and others annually. Either way, it’s important to stay aware of any legal changes that may affect your plan. A good way to do this is to subscribe to newsletters put out by your team and follow them on social media. If you see something you have questions about, don’t be afraid to contact them. Providing Peace of Mind: Knowing that there is a well-thought-out plan in place for the future care and financial support of a family member with special needs can provide peace of mind for the entire family. It ensures that the person's needs will be met, even if the primary caregivers are no longer able to provide support. Integrating special needs planning with overall financial planning helps:

Ensure that all aspects of your financial life are considered and managed cohesively.
Provide a clear roadmap for asset distribution, reducing the risk of family disputes and legal challenges.
Offer ongoing support and guidance to your loved one after your passing.

Protecting and providing for your family member with special needs now and in the future is a unique and complicated process. Finding a team to help you set goals, manage your assets, navigate taxes, and monitor your plan is the key to your peace of mind. If you’re ready to chat with a special needs planning attorney in your state, a list of SNA attorney members is available here. [/fusion_text][fusion_text columns="" column_min_width="" column_spacing="" rule_style="" rule_size="" rule_color="" hue="" saturation="" lightness="" alpha="" content_alignment_medium="" content_alignment_small="" content_alignment="" hide_on_mobile="small-visibility,medium-visibility,large-visibility" sticky_display="normal,sticky" class="" id="" margin_top="" margin_right="" margin_bottom="" margin_left="" fusion_font_family_text_font="" fusion_font_variant_text_font="" font_size="" line_height="" letter_spacing="" text_transform="" text_color="" animation_type="" animation_direction="left" animation_color="" animation_speed="0.3" animation_delay="0" animation_offset="" logics=""] About this Article: We hope you find this article informative, but it is not legal advice. You should consult your own attorney, who can review your specific situation and account for variations in state law and local practices. Laws and regulations are constantly changing, so the longer it has been since an article was written, the greater the likelihood that the article might be out of date. SNA members focus on this complex, evolving area of law. To locate a member in your state, visit Find an Attorney. Requirements for Reproducing this Article: The above article may be reprinted only if it appears unmodified, including both the author description above the title and the "About this Article" paragraph immediately following the article, accompanied by the following statement: "Reprinted with permission of the Special Needs Alliance – www.specialneedsalliance.org." The article may not be reproduced online. Instead, references to it should link to it on the SNA website. [/fusion_text][fusion_button link="https://www.specialneedsalliance.org/wp-content/uploads/2024/11/Securing-the-Future-The-Essential-Role-of-Special-Needs-Planning-and-Financial-Planning.pdf" title="" target="_self" link_attributes="" alignment_medium="" alignment_small="" alignment="center" modal="" hide_on_mobile="small-visibility,medium-visibility,large-visibility" sticky_display="normal,sticky" class="" id="" color="default" button_gradient_top_color_hover="" hue="" saturation="" lightness="" alpha="" button_gradient_top_color="" button_gradient_bottom_color_hover="" button_gradient_bottom_color="" gradient_start_position="" gradient_end_position="" gradient_type="" radial_direction="" linear_angle="180" accent_hover_color="" accent_color="" type="" bevel_color="" bevel_color_hover="" border_top="" border_right="" border_bottom="" border_left="" border_radius_top_left="" border_radius_top_right="" border_radius_bottom_right="" border_radius_bottom_left="" border_hover_color="" border_color="" size="" padding_top="" padding_right="" padding_bottom="" padding_left="" fusion_font_family_button_font="" fusion_font_variant_button_font="" font_size="" line_height="" letter_spacing="" text_transform="" stretch="default" margin_top="" margin_right="" margin_bottom="" margin_left="" icon="" icon_position="left" icon_divider="no" hover_transition="none" animation_type="" animation_direction="left" animation_color="" animation_speed="0.3" animation_delay="0" animation_offset=""]Download PDF[/fusion_button][/fusion_builder_column][/fusion_builder_row][/fusion_builder_container] [post_title] => Securing the Future: The Essential Role of Special Needs Planning and Financial Planning [post_excerpt] => This article is provided by Andrew Hook, CELA of Hook Law Center in Virginia Beach, VA. Andy is a founding member of the Special Needs Alliance, and also is a CERTIFIED FINANCIAL PLANNERTM (CFP®). He focuses on elder law, special needs planning, and asset protection. [post_status] => publish [comment_status] => open [ping_status] => closed [post_password] => [post_name] => securing-the-future-the-essential-role-of-special-needs-planning-and-financial-planning [to_ping] => [pinged] => [post_modified] => 2024-11-14 08:35:58 [post_modified_gmt] => 2024-11-14 13:35:58 [post_content_filtered] => [post_parent] => 0 [guid] => https://www.specialneedsalliance.org/?p=639087 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw ) ) [query_vars] => Array ( [0] => WP_Post Object ( [ID] => 741777 [post_author] => 494 [post_date] => 2025-05-29 10:19:49 [post_date_gmt] => 2025-05-29 14:19:49 [post_content] =>

This issue of the Voice® is written by SNA Public Policy Advisor Brian Lindberg, Vice President of Health and Aging Policy with Healthsperien LLC in Washington, DC.

We all know the real estate maxim, Location, Location, Location. But I am a public policy advisor, not a realtor, so my maxim is Relationships, Relationships, Relationships!

You have the right as a citizen to speak to your elected representatives
You can meet with your representative or senator in the district (locally) or in Washington, DC, at their Capitol Hill office.
Remember, these are not high-pressure meetings, but simply a chance to introduce yourself, your work, and your perspective to the people representing you in Washington. A positive relationship with policymakers on the Hill can help the SNA advance its policy priorities and improve the lives of our clients.
Prepare a brief “elevator speech” in which you describe your area of expertise, who you or your clients are, and your perspective.
Offer one or two stories to bring your clients to life for the members of Congress and the staff in your meeting.
If you are discussing a specific piece of legislation, point out how the legislation addresses the problem you and your client are facing. Emphasize that a solution exists; a credible solution helps elicit support from the legislator for your issue.
Use the SNA talking points to help you explain the legislative proposal.
Be ready with the “ask”: We often ask members of Congress to co-sponsor the legislation we support.
Ask the person with whom you meet about their priorities and work in the disability and health areas.
Thank the person for their time and offer to be available as a resource in the future. Leave the SNA one-pager and your business card with the office.
Follow up promptly with an email with any information you offered to provide. Also, if the legislation in question develops, such as being referred to a committee or a hearing, let the legislative office know.

SNA Brochure
Supporting Individuals with Disabilities One-pager
DAC Fairness Act One-pager
DAC Fairness Act Talking Points
Hill Visit Outline
Capitol Hill Map

Here is a sample of comments from SNA Members who were Hill Day participants:

It was a very positive experience; I definitely recommend continuing. Staff seemed grateful for the info and to know that we were available as a resource on special needs.

Staffer looking for Republican interest in cosponsoring bill. Please contact her directly with GOP support.

I met with staff whose mom was a special ed teacher so she’s familiar with the disability community.

Staff were surprised and grateful to learn about specific programs that would be unavailable to persons with disabilities because of their CDB/DAC payments.

Member requested real person data and stories.

The staffer expressed concern about the financial burden on the state (Medicaid) as a result of the legislation. We explained that the legislation is likely revenue neutral.

That was such an enriching experience!

Benefits for Individuals with Disabilities

Special Benefit for Individuals Disabled Before Age 22 - the Disabled Adult Child

But Wait…What’s the Problem?

Take this example of two disabled children from the same family:

Jill is 23 years old. She was born with Down syndrome and qualified for SSI benefits and Medicaid when she turned 18. Her mom passed away when Jill was 19 years old and Jill began receiving the Childhood Disability Benefit and Medicare. Jill no longer receives SSI because the Childhood Disability Benefit income is greater than the SSI benefit. However, she is able to disregard the CDB income for purposes of Medicaid eligibility and therefore she can keep her full Medicaid benefits without having to “spend down” her monthly income on medical expenses.
Jill has a sister, Jamie, who is 21 years old and also has Down syndrome. Jamie was 17 when Jamie and Jill’s mother passed away. Since she was not yet 18, she did not qualify for SSI because her parents’ income and assets prevented her from being eligible. Jamie has never received SSI, but, like her sister, Jill, she qualified for Childhood Disability Benefits. Unfortunately, unlike her sister, Jamie’s disability income is not disregarded and she must spend this income on her medical expenses before she can gain access to Medicaid benefits.

Jill and Jamie are similar in just about every way, but Jamie is able to keep less of her disability income just because her mom died before Jamie turned 18 and applied for SSI.

That’s Not Fair…How do We Fix This?

The Special Needs Alliance is requesting an amendment to 42 USC 1383c to read:

The trust must be irrevocable.
The trust must be established for the sole benefit of a person with a disability.
The beneficiary must be under the age of 65 at the time the trust is established.
The beneficiary must have a disability as defined by the Social Security Administration that causes the beneficiary to be unable to engage in substantial gainful activity because of a physical or mental impairment that is expected to last 12 months or more or result in death.

Given the compressed income tax brackets that non-grantor trusts are subject to, the QDT designation provides some reprieve. The ordinary income tax brackets for non-grantor trusts in 2025 are:

$0 - $3,150: 10%
$3,150 - $11,450: 24%
$11,450 - $15,650: 35%
$15,650 and above: 37%

About this Article: We hope you find this article informative, but it is not legal advice. You should consult your own attorney, who can review your specific situation and account for variations in state law and local practices. Laws and regulations are constantly changing, so the longer it has been since an article was written, the greater the likelihood that the article might be out of date. SNA members focus on this complex, evolving area of law. To locate a member in your state, visit Find an Attorney. Requirements for Reproducing this Article: The above article may be reprinted only if it appears unmodified, including both the author description above the title and the “About this Article” paragraph immediately following the article, accompanied by the following statement: “Reprinted with permission of the Special Needs Alliance – www.specialneedsalliance.org.” The article may not be reproduced online. Instead, references to it should link to it on the SNA website. Download PDF [post_title] => Special Needs Planners: A Safe Beacon in the Storm [post_excerpt] => [post_status] => publish [comment_status] => open [ping_status] => closed [post_password] => [post_name] => special-needs-planners-a-safe-beacon-in-the-storm [to_ping] => [pinged] => [post_modified] => 2025-03-18 16:32:41 [post_modified_gmt] => 2025-03-18 20:32:41 [post_content_filtered] => [post_parent] => 0 [guid] => https://www.specialneedsalliance.org/?p=714825 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw ) [5] => WP_Post Object ( [ID] => 711514 [post_author] => 494 [post_date] => 2025-03-10 16:50:55 [post_date_gmt] => 2025-03-10 20:50:55 [post_content] => This article is provided by SNA member Victoria Blair Struse of Fletcher Struse Fickbohm & Wagner PLC in Tucson, Arizona. The firm specializes in estate and trust planning and administration, guardianship and conservatorship. My brother is autistic and is in his 50s. He wasn't formally diagnosed until about ten years ago, for many reasons, but primarily because autism wasn't well understood years ago. His teachers would label him as "slow" and "awkward," suggesting that he just needed more discipline. He endured bullying for being different. Despite being exceptionally book smart — often earning the highest grades and eventually obtaining a master's degree — he struggled tremendously in work environments. In the workplace, my brother would become overwhelmed and confused, unable to independently follow tasks. He often got in trouble for having no filter. The pattern was heartbreakingly consistent: each time he found a new job; he would be fired within a few months for one reason or another. After so many terminations, finding new employment became impossible. Like many people with disabilities, he has never officially been determined “disabled” by the Social Security Administration. His school records are long gone, and medical records are scarce because he rarely went to the doctor. Today, he relies on Medicaid for his healthcare coverage. As states consider implementing work requirements for Medicaid recipients, his situation highlights why these potential changes matter for thousands of families. Understanding what's being proposed, who might be exempt, and what documentation could be required will be crucial — especially for people who, like my brother, don't have an official disability determination. Here's what families need to know about these potential requirements and their potential impact. Understanding Current Medicaid Work Requirements The landscape of Medicaid coverage is shifting. Previously, the Center for Medicaid and Medicare Services approved 13 state work requirement proposals, though most weren't implemented due to legal challenges and the COVID-19 pandemic. As states face potential funding adjustments, they are likely to reconsider these requirements as a way to manage their Medicaid programs. Work requirement proposals have included:

A minimum of 20 hours per week or 80 hours per month of work for beneficiaries aged 18-64
Varying exemption policies for certain groups, such as people with disabilities, caregivers, and parents of young children
Different standards for proving disability or exemption status

Documentation Barriers: Many people lack the extensive documentation required for an official disability determination, especially if their condition wasn't well understood or documented in their youth.
Qualification Gaps: Some individuals don't qualify for SSA disability determination because they lack sufficient work quarters or don't meet financial criteria for Supplemental Security Income.
Medical Verification: While some states may accept physician letters verifying inability to work, many healthcare providers aren't typically equipped to evaluate patients for work capability.
Limited Alternatives: Without SSA disability determination, Medicare isn't available. While the Affordable Care Act plans exist, they often aren't feasible for people needing extensive medical care, given their high monthly premiums.

Spouse (the rules for spouses are beyond the scope of this article);
Person not more than ten years younger than account owner/participant (think sibling or friend);
Minor child of the owner (instead of ten years, substitute "age thirty-one"); and
Person who is "disabled" or "chronically ill."

The likely amount that will be in the account at your death. In other words, how important is it for this particular account to stretch distributions over your child’s lifetime? Would the taxes be so high if paid over ten years? Is it small enough that you anticipate the trustee might decide to spend the money in five or ten years anyway? Of course, if you are young now, your account may be small, but it will likely grow over time, so you will have to monitor the situation.
Your child's disability. Do you know for sure that your child will qualify as disabled or chronically ill? Has any determination of disability been made? If your child is not certain to be determined to be disabled, you have to consider seriously the problem of income retained in the trust. Discuss with your attorney ways to manage that tax component of the retirement accounts. Some options may include converting the accounts to Roth IRAs, designating your child as the beneficiary, or providing further instructions to the trustee.
The trust document itself. If you've had a trust set up for your child years ago, re-examine it. Does it include the dreaded "poison pill" language or other language allowing distributions to those other than the child with a disability? If your child isn't disabled in the technical sense, did you name a charity as a beneficiary on the child's death?
The trustee and instructions you can provide. Even if the documents seem perfect, will your trustee or account manager get the right advice when you die and arrange the distributions correctly? While having a trustee who can pay attention to details and bureaucratic requirements like filing tax returns is essential, it is essential when an IRA will pay to the trust. The trustee must understand the legal and tax requirements or know how to engage well-qualified advisors who understand the goal.

Banking apps with voice control and simplified interfaces
Automated bill payment systems with smart reminders
AI-powered budget tracking tools like Mint or YNAB
Document reading apps that can convert complex paperwork into plain language
Smart calendar apps that can predict and schedule routine appointments

Download PDF

Making Learning Personal Through Adaptive Technology

Breaking Down Communication Barriers Through Innovation

Creating Dynamic and Engaging Learning Environments

Interactive 3D models of pyramids that students can explore virtually
Adaptive quizzes that adjust their difficulty based on student responses
Virtual reality experiences that bring historical events to life
Voice-controlled navigation for students with motor limitations
Real-time translation of hieroglyphics to aid understanding

Empowering Teachers with Real-Time Data and Insights

Important Considerations and Best Practices

What specific data points are being tracked
How long this information is stored
Who has access to the data
How the information is being used to inform instruction
What security measures are in place to protect student privacy

Initial technology acquisition
Ongoing maintenance and updates
Staff training and professional development
Technical support for both teachers and students
Ensuring equitable access to these technologies across all student populations

Looking to the Future

Steps in the Planning Process

Establishing Means for Responsible Decision-Making: Guardianship and Power of Attorney

Engaging in Long-Term Financial Planning

Solidifying the Continuation of Appropriately Supportive and Safe Housing

Embracing a Team Approach

What Are Your Goals?

For plaintiffs receiving personal injury recoveries, goals often include the following:

Benefit Themselves. Plaintiffs want to improve their quality of life.
Benefit Spouse. Plaintiffs want to improve the standard of living of their spouse, which sometimes requires either gifts to their spouse or the purchase of items for the spouse, which would also constitute gifts if made by the trust.
Benefit Others. Plaintiffs want to benefit other family members, including children. Transferring assets, including assets purchased for the benefit of others, to family members constitutes a gift, which would temporarily disqualify the plaintiff from many public benefits.
Legacy for Children. Most parents would like to preserve a legacy for their children. A Medicaid payback provision in a self-settled special needs trust makes this difficult.
Buy a Home. Nearly every plaintiff has three wishes: a home, a car, and a trip to Disney World. Buying a home is at the top of the list. But, if the home is purchased by the trust and occupied by other family members, in many states those other family members must pay a pro-rata share of the expenses of maintaining the home. And, if the trust makes a distribution to the plaintiff to purchase the home in their own name, in most states the home would be subject to a Medicaid lien or estate recovery.

These goals are difficult to achieve because of the disadvantages of a self-settled special needs trust set forth below.

Pros and Cons of Using a Self-Settled Special Needs Trust

Before making this decision, several factors should be considered.

Advantages of a Self-Settled Special Needs Trust

The money in the trust is not counted as an asset.
No transfer penalty is imposed for transferring assets.
Immediate eligibility or no interruption of benefits.
Expert investment management.
Expert trust administration.

Disadvantages of a Self-Settled Special Needs Trust

Payback to Medicaid on death.
Intense supervision by many state Medicaid agencies.
Possible conflict between trustee and beneficiary over appropriate distributions.
“Sole benefit of” restrictions.
Other family members cannot benefit.
The beneficiary must be under age 65.

What Potential Alternatives Would There Be to A Self-Settled Special Needs Trust?

Allocation. In appropriate situations, the personal injury attorney can arrange for the court to approve an allocation of funds to individuals other than the plaintiff. This is common in wrongful death cases.
Settlement Protection Trust. A settlement protection trust could be established. It is a support trust with a health, education, maintenance, and support (“HEMS”) standard. Distributions are much less restrictive than those permitted in a self-settled special needs trust. The disadvantage is that the plaintiff would lose their public benefits.
Settlement Protection Trust with Special Needs Provisions. This could be useful in the following situations:
- Child Under 18. If there is a child under 18 not yet eligible for SSI because of parental deeming, a settlement protection trust can be established and administered until the child is 18, when the trust could automatically trigger a transfer to the special needs subtrust.
- Belt and Suspenders. A settlement protection trust can be established with a provision that if it is later determined that the benefits are more necessary than anticipated, a transfer to the special needs subtrust could be triggered.
Long-Term Care Planning.
- Spend Down for Items Needed by Plaintiff and/or Spouse. When engaging in long-term care planning, if the plaintiff can give up benefits for a limited time, usually not to exceed five years (often less), he or she can usually eventually resume those benefits.
- Gifts to Spouse. If the plaintiff is married, the plaintiff’s spouse can purchase a Medicaid-compliant annuity. This does not incur a Medicaid transfer of asset penalty.
- Transfer to Family Members. For a significantly large recovery, assets could be transferred to other family members, resulting in a loss of Medicaid benefits for a period not to exceed 5 years.
- Transfer Assets – Pay Through Penalty. In many instances, assets can be transferred, and the plaintiff can pay through the resulting penalty period, which could be less than 5 years.
- Transfer Assets to a Child Under 21, Blind, or Disabled. This can be done without a transfer of asset penalty.
- Tax Considerations. In pursuing any of these strategies, tax considerations must be considered including carry over basis, step-up basis, retirement plan rules, the tax effect on the transfer of a deferred annuity, and state estate or inheritance taxes.

When Not to Use a Self-Settled Special Needs Trust

Large Settlements. If the personal injury recovery is large enough, consideration should be given to accepting the settlement, funding a settlement protection trust, giving up benefits, and purchasing private medical insurance.
Age 65 Or Older. If the individual is age 65 or older, a self-settled special needs trust is not possible (unless state law allows a self-settled pooled trust option). For example, in nursing home abuse or neglect cases, the instinct of the personal injury attorney is often to fund a self-settled special needs trust. However, after the settlement or recovery is achieved, the personal injury attorney realizes that the age requirement cannot be satisfied. By doing long-term care planning like described above, a significant portion of the recovery can usually be protected. Even if the individual is under age 65 but in a nursing home, additional long-term care planning may be beneficial because there may be very little that can be spent to enhance the quality of life of the nursing home resident with the use of a self-settled trust.
Benefit Of Other Individuals. If a personal injury recovery is achieved and deposited in a self-settled special needs trust, it is difficult for other family members or friends to benefit from the recovery. Often it is difficult to spend a lot of money enhancing the plaintiff’s quality of life. By engaging in long-term care planning, it may be possible for a spouse and other family members to benefit from long-term care planning strategies.

Disadvantage of Forgoing a Self-Settled Special Needs Trust

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Establish Legal Authority

The first thing I discuss with clients is decision-making on behalf of the child. You’ll need to have answers to questions like:

Who will have the legal authority to make decisions for your child when you no longer can, and what documents need to be put in place to grant that authority?
If you're currently the guardian, who's next in line?
Do you have your own legal documents, like a Will, Power of Attorney and Healthcare Proxy, in place?

Create a Home for the Future

Protect Your Child's Financial Security

Build a Support Network

5. Secure Your Future to Protect Theirs

Leave a Roadmap: The Letter of Intent

Keep Current

It’s OK Not to Be OK

Take the First Step

New President Takes the Helm

2024 – 2025 Leadership Team and Board of Directors

Joining Pleat in guiding the SNA are:

President-Elect: Robert F. Brogan, CELA, Brogan Law Group, P.C., Brick, NJ
Vice President: Bryn Poland, Esq., Mayo & Poland, PLLC, Baytown, TX
Secretary: Elizabeth Noble Friman, Esq., Fleming & Curti, PLC, Tucson, AZ
Treasurer: Christopher W. Smith, Esq., Chalgian & Tripp Law Offices PLLC, Southfield, MI
Past President: Amy C. O'Hara, CELA, Littman Krooks, LLP, Rye Brook, NY

Directors:

Leonard R. Anderson, Esq., Barlow Anderson, Anchorage, AK
Roxanne J. Chang, Esq., Roxanne J. Chang Advocate, Plymouth, MI
Emily A. Donaldson, CELA, Stevens & Brand, Topeka, KS
Emma R. Hemness, CELA, Hemness Faller Elder Law, Brandon, FL
Emily B. Kile, Esq., Mushkatel, Gobbato & Kile, PLLC, Scottsdale, AZ
Elena A. Lidrbauch, CELA, Hickman, Lowder, Lidrbauch & Welch Co., LPA, Sheffield Village, OH
Jacob H. Menashe, Esq., Hickman Menashe, P.S., Lynnwood, WA
Rebecca C. Morgan, JD, LLM, Stetson University College of Law, Gulfport, FL
Ethan J. Ordog, Esq., Begley Law Group, Moorestown, NJ
Larry H. Rocamora, Esq., McPherson & Rocamora, PLLC, Durham, NC
Benjamin A. Rubin, Esq. LLM, Rubin Law, A Professional Corporation, Buffalo Grove, IL
Matthew T. Smith, Esq., Elder Law Lawyers McClelland & Associates, PLLC, Lexington, KY

Fresh Perspectives and Continued Excellence

About the Special Needs Alliance

For more information about the Special Needs Alliance and its services, visit www.specialneedsalliance.org.

Media Contact:

Jihane Davidow, Executive Director

Persons with Disabilities Need to be Taught “The Rules of Sex”

What is “having sex”?
Who can you have sex with?
What happens if you have sex?
Can I have sex in my bedroom?
When is it okay to touch someone?
When can you talk about sex?
What is “privacy”?
What are my “sexual rights”?
Where can I do sexual things?
What kind of sex is against the law?

Sexual Health of Persons with Disabilities

Societal and psychosocial barriers.
The often unpredictable timing of puberty.
Inaccessible medical equipment, including examination tables, weight scales and imaging devices.
Lack of appropriate routine and preventative gynecological and urological care.
Lack of examination adaptations to accommodate the person’s physical or neuromuscular challenges.
Lack of information regarding abstinence, contraceptives, and the impact of contraceptive drugs on a person’s overall health.
Historically inappropriate imposition of sterilization as the default approach to preventing persons with disabilities from procreating.
Lack of “developmentally appropriate” sex education for persons with disabilities.
Complete avoidance of topics such as sexual orientation, gender identity, sexually transmitted diseases, contraception, and abstinence.
The failure of IEPs (Individualized Education Programs) to require developmentally appropriate sex education for students with disabilities.
The adverse impact of the cultural, religious, and personal experiences of parents or guardians on their willingness to facilitate the sexual education of their children with disabilities.

Advising the medical provider of the anticipated presence of one or more support personnel during a scheduled examination can be essential to the visit’s success.

Sexual Relationships of Persons with Disabilities

What are Need-Based Benefits?

What Are Entitlement Programs?

The Difference

Reasons To Apply For SSI

Asset Limitations and Income Restrictions: SSI eligibility is contingent upon meeting strict asset and income limitations set by the SSA.
Protecting Eligibility for Other Programs: By applying for SSI, individuals with special needs can also safeguard their eligibility for other critical programs and services, such as Supplemental Nutrition Assistance Program (SNAP), housing assistance, Medicaid Waivers, and vocational rehabilitation services. These programs can offer further assistance and opportunities for individuals to enhance their quality of life and independence.
Gateway to Other Benefits: While SSI provides modest monthly benefits, it acts as a vital gateway to various support services, including Medicaid Waivers. Similarly, CDB not only offers financial assistance but also opens doors to Medicare coverage. Together, these programs ensure the long-term financial security and well-being of individuals with special needs.

What’s So Great About Medicare

Key Changes Introduced by the SECURE Act

Surviving spouses
Disabled or chronically ill individuals
Individuals not more than 10 years younger than the deceased account owner
Minor children of the account owner (until they reach the age of majority).

What Are the Benefits of Leaving an IRA to a Person with a Disability Post-SECURE Act?

Impact on Special Needs Trusts

Conclusion

The Special Needs Planning + Financial Planning Partnership

Detailed financial information is collected, and all assets are accounted for.
Special needs planning documents are properly created and updated.
Public benefits eligibility is preserved.
Legal and financial strategies are harmonized to minimize tax liabilities and legal complications.

Finding the Right Help for You

What Your Team Will Do for You

Taking inventory of all assets and liabilities.

Creating a strategy that encompasses public benefits, investments, insurance, and tax planning to ensure your loved one’s financial security during your lifetime and efficient transfer of wealth upon death.
Evaluating and recommending adjustments to existing investment portfolios to align with special needs planning goals.

Tax-efficient strategies to reduce income, estate, and inheritance taxes.
Eligibility for public benefits.
The legal requirements for different types of asset transfers and beneficiary designations.
Setting up trusts and other legal mechanisms to protect assets and ensure they are used according to your wishes.

Ongoing Monitoring and Adjustments: Special needs planning is not a one-time event but rather an ongoing process that requires regular review and adjustments. Your team will help by:

Monitoring the special needs plan to ensure it stays aligned with your goals and any changes in your financial situation or family dynamics.
Advising on necessary updates to the special needs plan in response to changes in the law and life events such as marriage, divorce, birth of children, or changes in health.
Ensuring that beneficiary designations and asset titling are kept current.

Ensure that all aspects of your financial life are considered and managed cohesively.
Provide a clear roadmap for asset distribution, reducing the risk of family disputes and legal challenges.
Offer ongoing support and guidance to your loved one after your passing.

This issue of the Voice® is written by SNA Public Policy Advisor Brian Lindberg, Vice President of Health and Aging Policy with Healthsperien LLC in Washington, DC.

We all know the real estate maxim, Location, Location, Location. But I am a public policy advisor, not a realtor, so my maxim is Relationships, Relationships, Relationships!

You have the right as a citizen to speak to your elected representatives
You can meet with your representative or senator in the district (locally) or in Washington, DC, at their Capitol Hill office.
Remember, these are not high-pressure meetings, but simply a chance to introduce yourself, your work, and your perspective to the people representing you in Washington. A positive relationship with policymakers on the Hill can help the SNA advance its policy priorities and improve the lives of our clients.
Prepare a brief “elevator speech” in which you describe your area of expertise, who you or your clients are, and your perspective.
Offer one or two stories to bring your clients to life for the members of Congress and the staff in your meeting.
If you are discussing a specific piece of legislation, point out how the legislation addresses the problem you and your client are facing. Emphasize that a solution exists; a credible solution helps elicit support from the legislator for your issue.
Use the SNA talking points to help you explain the legislative proposal.
Be ready with the “ask”: We often ask members of Congress to co-sponsor the legislation we support.
Ask the person with whom you meet about their priorities and work in the disability and health areas.
Thank the person for their time and offer to be available as a resource in the future. Leave the SNA one-pager and your business card with the office.
Follow up promptly with an email with any information you offered to provide. Also, if the legislation in question develops, such as being referred to a committee or a hearing, let the legislative office know.

SNA Brochure
Supporting Individuals with Disabilities One-pager
DAC Fairness Act One-pager
DAC Fairness Act Talking Points
Hill Visit Outline
Capitol Hill Map

Here is a sample of comments from SNA Members who were Hill Day participants:

It was a very positive experience; I definitely recommend continuing. Staff seemed grateful for the info and to know that we were available as a resource on special needs.

Staffer looking for Republican interest in cosponsoring bill. Please contact her directly with GOP support.

I met with staff whose mom was a special ed teacher so she’s familiar with the disability community.

Staff were surprised and grateful to learn about specific programs that would be unavailable to persons with disabilities because of their CDB/DAC payments.

Member requested real person data and stories.

The staffer expressed concern about the financial burden on the state (Medicaid) as a result of the legislation. We explained that the legislation is likely revenue neutral.

That was such an enriching experience!

Benefits for Individuals with Disabilities

Special Benefit for Individuals Disabled Before Age 22 - the Disabled Adult Child

But Wait…What’s the Problem?

Take this example of two disabled children from the same family:

Jill is 23 years old. She was born with Down syndrome and qualified for SSI benefits and Medicaid when she turned 18. Her mom passed away when Jill was 19 years old and Jill began receiving the Childhood Disability Benefit and Medicare. Jill no longer receives SSI because the Childhood Disability Benefit income is greater than the SSI benefit. However, she is able to disregard the CDB income for purposes of Medicaid eligibility and therefore she can keep her full Medicaid benefits without having to “spend down” her monthly income on medical expenses.
Jill has a sister, Jamie, who is 21 years old and also has Down syndrome. Jamie was 17 when Jamie and Jill’s mother passed away. Since she was not yet 18, she did not qualify for SSI because her parents’ income and assets prevented her from being eligible. Jamie has never received SSI, but, like her sister, Jill, she qualified for Childhood Disability Benefits. Unfortunately, unlike her sister, Jamie’s disability income is not disregarded and she must spend this income on her medical expenses before she can gain access to Medicaid benefits.

Jill and Jamie are similar in just about every way, but Jamie is able to keep less of her disability income just because her mom died before Jamie turned 18 and applied for SSI.

That’s Not Fair…How do We Fix This?

The Special Needs Alliance is requesting an amendment to 42 USC 1383c to read:

The trust must be irrevocable.
The trust must be established for the sole benefit of a person with a disability.
The beneficiary must be under the age of 65 at the time the trust is established.
The beneficiary must have a disability as defined by the Social Security Administration that causes the beneficiary to be unable to engage in substantial gainful activity because of a physical or mental impairment that is expected to last 12 months or more or result in death.

Given the compressed income tax brackets that non-grantor trusts are subject to, the QDT designation provides some reprieve. The ordinary income tax brackets for non-grantor trusts in 2025 are:

$0 - $3,150: 10%
$3,150 - $11,450: 24%
$11,450 - $15,650: 35%
$15,650 and above: 37%

About this Article: We hope you find this article informative, but it is not legal advice. You should consult your own attorney, who can review your specific situation and account for variations in state law and local practices. Laws and regulations are constantly changing, so the longer it has been since an article was written, the greater the likelihood that the article might be out of date. SNA members focus on this complex, evolving area of law. To locate a member in your state, visit Find an Attorney. Requirements for Reproducing this Article: The above article may be reprinted only if it appears unmodified, including both the author description above the title and the “About this Article” paragraph immediately following the article, accompanied by the following statement: “Reprinted with permission of the Special Needs Alliance – www.specialneedsalliance.org.” The article may not be reproduced online. Instead, references to it should link to it on the SNA website. Download PDF [post_title] => Special Needs Planners: A Safe Beacon in the Storm [post_excerpt] => [post_status] => publish [comment_status] => open [ping_status] => closed [post_password] => [post_name] => special-needs-planners-a-safe-beacon-in-the-storm [to_ping] => [pinged] => [post_modified] => 2025-03-18 16:32:41 [post_modified_gmt] => 2025-03-18 20:32:41 [post_content_filtered] => [post_parent] => 0 [guid] => https://www.specialneedsalliance.org/?p=714825 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw ) [5] => WP_Post Object ( [ID] => 711514 [post_author] => 494 [post_date] => 2025-03-10 16:50:55 [post_date_gmt] => 2025-03-10 20:50:55 [post_content] => This article is provided by SNA member Victoria Blair Struse of Fletcher Struse Fickbohm & Wagner PLC in Tucson, Arizona. The firm specializes in estate and trust planning and administration, guardianship and conservatorship. My brother is autistic and is in his 50s. He wasn't formally diagnosed until about ten years ago, for many reasons, but primarily because autism wasn't well understood years ago. His teachers would label him as "slow" and "awkward," suggesting that he just needed more discipline. He endured bullying for being different. Despite being exceptionally book smart — often earning the highest grades and eventually obtaining a master's degree — he struggled tremendously in work environments. In the workplace, my brother would become overwhelmed and confused, unable to independently follow tasks. He often got in trouble for having no filter. The pattern was heartbreakingly consistent: each time he found a new job; he would be fired within a few months for one reason or another. After so many terminations, finding new employment became impossible. Like many people with disabilities, he has never officially been determined “disabled” by the Social Security Administration. His school records are long gone, and medical records are scarce because he rarely went to the doctor. Today, he relies on Medicaid for his healthcare coverage. As states consider implementing work requirements for Medicaid recipients, his situation highlights why these potential changes matter for thousands of families. Understanding what's being proposed, who might be exempt, and what documentation could be required will be crucial — especially for people who, like my brother, don't have an official disability determination. Here's what families need to know about these potential requirements and their potential impact. Understanding Current Medicaid Work Requirements The landscape of Medicaid coverage is shifting. Previously, the Center for Medicaid and Medicare Services approved 13 state work requirement proposals, though most weren't implemented due to legal challenges and the COVID-19 pandemic. As states face potential funding adjustments, they are likely to reconsider these requirements as a way to manage their Medicaid programs. Work requirement proposals have included:

A minimum of 20 hours per week or 80 hours per month of work for beneficiaries aged 18-64
Varying exemption policies for certain groups, such as people with disabilities, caregivers, and parents of young children
Different standards for proving disability or exemption status

Documentation Barriers: Many people lack the extensive documentation required for an official disability determination, especially if their condition wasn't well understood or documented in their youth.
Qualification Gaps: Some individuals don't qualify for SSA disability determination because they lack sufficient work quarters or don't meet financial criteria for Supplemental Security Income.
Medical Verification: While some states may accept physician letters verifying inability to work, many healthcare providers aren't typically equipped to evaluate patients for work capability.
Limited Alternatives: Without SSA disability determination, Medicare isn't available. While the Affordable Care Act plans exist, they often aren't feasible for people needing extensive medical care, given their high monthly premiums.

Spouse (the rules for spouses are beyond the scope of this article);
Person not more than ten years younger than account owner/participant (think sibling or friend);
Minor child of the owner (instead of ten years, substitute "age thirty-one"); and
Person who is "disabled" or "chronically ill."

The likely amount that will be in the account at your death. In other words, how important is it for this particular account to stretch distributions over your child’s lifetime? Would the taxes be so high if paid over ten years? Is it small enough that you anticipate the trustee might decide to spend the money in five or ten years anyway? Of course, if you are young now, your account may be small, but it will likely grow over time, so you will have to monitor the situation.
Your child's disability. Do you know for sure that your child will qualify as disabled or chronically ill? Has any determination of disability been made? If your child is not certain to be determined to be disabled, you have to consider seriously the problem of income retained in the trust. Discuss with your attorney ways to manage that tax component of the retirement accounts. Some options may include converting the accounts to Roth IRAs, designating your child as the beneficiary, or providing further instructions to the trustee.
The trust document itself. If you've had a trust set up for your child years ago, re-examine it. Does it include the dreaded "poison pill" language or other language allowing distributions to those other than the child with a disability? If your child isn't disabled in the technical sense, did you name a charity as a beneficiary on the child's death?
The trustee and instructions you can provide. Even if the documents seem perfect, will your trustee or account manager get the right advice when you die and arrange the distributions correctly? While having a trustee who can pay attention to details and bureaucratic requirements like filing tax returns is essential, it is essential when an IRA will pay to the trust. The trustee must understand the legal and tax requirements or know how to engage well-qualified advisors who understand the goal.

Banking apps with voice control and simplified interfaces
Automated bill payment systems with smart reminders
AI-powered budget tracking tools like Mint or YNAB
Document reading apps that can convert complex paperwork into plain language
Smart calendar apps that can predict and schedule routine appointments

Download PDF

Making Learning Personal Through Adaptive Technology

Breaking Down Communication Barriers Through Innovation

Creating Dynamic and Engaging Learning Environments

Interactive 3D models of pyramids that students can explore virtually
Adaptive quizzes that adjust their difficulty based on student responses
Virtual reality experiences that bring historical events to life
Voice-controlled navigation for students with motor limitations
Real-time translation of hieroglyphics to aid understanding

Empowering Teachers with Real-Time Data and Insights

Important Considerations and Best Practices

What specific data points are being tracked
How long this information is stored
Who has access to the data
How the information is being used to inform instruction
What security measures are in place to protect student privacy

Initial technology acquisition
Ongoing maintenance and updates
Staff training and professional development
Technical support for both teachers and students
Ensuring equitable access to these technologies across all student populations

Looking to the Future

Steps in the Planning Process

Establishing Means for Responsible Decision-Making: Guardianship and Power of Attorney

Engaging in Long-Term Financial Planning

Solidifying the Continuation of Appropriately Supportive and Safe Housing

Embracing a Team Approach

What Are Your Goals?

For plaintiffs receiving personal injury recoveries, goals often include the following:

Benefit Themselves. Plaintiffs want to improve their quality of life.
Benefit Spouse. Plaintiffs want to improve the standard of living of their spouse, which sometimes requires either gifts to their spouse or the purchase of items for the spouse, which would also constitute gifts if made by the trust.
Benefit Others. Plaintiffs want to benefit other family members, including children. Transferring assets, including assets purchased for the benefit of others, to family members constitutes a gift, which would temporarily disqualify the plaintiff from many public benefits.
Legacy for Children. Most parents would like to preserve a legacy for their children. A Medicaid payback provision in a self-settled special needs trust makes this difficult.
Buy a Home. Nearly every plaintiff has three wishes: a home, a car, and a trip to Disney World. Buying a home is at the top of the list. But, if the home is purchased by the trust and occupied by other family members, in many states those other family members must pay a pro-rata share of the expenses of maintaining the home. And, if the trust makes a distribution to the plaintiff to purchase the home in their own name, in most states the home would be subject to a Medicaid lien or estate recovery.

These goals are difficult to achieve because of the disadvantages of a self-settled special needs trust set forth below.

Pros and Cons of Using a Self-Settled Special Needs Trust

Before making this decision, several factors should be considered.

Advantages of a Self-Settled Special Needs Trust

The money in the trust is not counted as an asset.
No transfer penalty is imposed for transferring assets.
Immediate eligibility or no interruption of benefits.
Expert investment management.
Expert trust administration.

Disadvantages of a Self-Settled Special Needs Trust

Payback to Medicaid on death.
Intense supervision by many state Medicaid agencies.
Possible conflict between trustee and beneficiary over appropriate distributions.
“Sole benefit of” restrictions.
Other family members cannot benefit.
The beneficiary must be under age 65.

What Potential Alternatives Would There Be to A Self-Settled Special Needs Trust?

Allocation. In appropriate situations, the personal injury attorney can arrange for the court to approve an allocation of funds to individuals other than the plaintiff. This is common in wrongful death cases.
Settlement Protection Trust. A settlement protection trust could be established. It is a support trust with a health, education, maintenance, and support (“HEMS”) standard. Distributions are much less restrictive than those permitted in a self-settled special needs trust. The disadvantage is that the plaintiff would lose their public benefits.
Settlement Protection Trust with Special Needs Provisions. This could be useful in the following situations:
- Child Under 18. If there is a child under 18 not yet eligible for SSI because of parental deeming, a settlement protection trust can be established and administered until the child is 18, when the trust could automatically trigger a transfer to the special needs subtrust.
- Belt and Suspenders. A settlement protection trust can be established with a provision that if it is later determined that the benefits are more necessary than anticipated, a transfer to the special needs subtrust could be triggered.
Long-Term Care Planning.
- Spend Down for Items Needed by Plaintiff and/or Spouse. When engaging in long-term care planning, if the plaintiff can give up benefits for a limited time, usually not to exceed five years (often less), he or she can usually eventually resume those benefits.
- Gifts to Spouse. If the plaintiff is married, the plaintiff’s spouse can purchase a Medicaid-compliant annuity. This does not incur a Medicaid transfer of asset penalty.
- Transfer to Family Members. For a significantly large recovery, assets could be transferred to other family members, resulting in a loss of Medicaid benefits for a period not to exceed 5 years.
- Transfer Assets – Pay Through Penalty. In many instances, assets can be transferred, and the plaintiff can pay through the resulting penalty period, which could be less than 5 years.
- Transfer Assets to a Child Under 21, Blind, or Disabled. This can be done without a transfer of asset penalty.
- Tax Considerations. In pursuing any of these strategies, tax considerations must be considered including carry over basis, step-up basis, retirement plan rules, the tax effect on the transfer of a deferred annuity, and state estate or inheritance taxes.

When Not to Use a Self-Settled Special Needs Trust

Large Settlements. If the personal injury recovery is large enough, consideration should be given to accepting the settlement, funding a settlement protection trust, giving up benefits, and purchasing private medical insurance.
Age 65 Or Older. If the individual is age 65 or older, a self-settled special needs trust is not possible (unless state law allows a self-settled pooled trust option). For example, in nursing home abuse or neglect cases, the instinct of the personal injury attorney is often to fund a self-settled special needs trust. However, after the settlement or recovery is achieved, the personal injury attorney realizes that the age requirement cannot be satisfied. By doing long-term care planning like described above, a significant portion of the recovery can usually be protected. Even if the individual is under age 65 but in a nursing home, additional long-term care planning may be beneficial because there may be very little that can be spent to enhance the quality of life of the nursing home resident with the use of a self-settled trust.
Benefit Of Other Individuals. If a personal injury recovery is achieved and deposited in a self-settled special needs trust, it is difficult for other family members or friends to benefit from the recovery. Often it is difficult to spend a lot of money enhancing the plaintiff’s quality of life. By engaging in long-term care planning, it may be possible for a spouse and other family members to benefit from long-term care planning strategies.

Disadvantage of Forgoing a Self-Settled Special Needs Trust

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Establish Legal Authority

The first thing I discuss with clients is decision-making on behalf of the child. You’ll need to have answers to questions like:

Who will have the legal authority to make decisions for your child when you no longer can, and what documents need to be put in place to grant that authority?
If you're currently the guardian, who's next in line?
Do you have your own legal documents, like a Will, Power of Attorney and Healthcare Proxy, in place?

Create a Home for the Future

Protect Your Child's Financial Security

Build a Support Network

5. Secure Your Future to Protect Theirs

Leave a Roadmap: The Letter of Intent

Keep Current

It’s OK Not to Be OK

Take the First Step

New President Takes the Helm

2024 – 2025 Leadership Team and Board of Directors

Joining Pleat in guiding the SNA are:

President-Elect: Robert F. Brogan, CELA, Brogan Law Group, P.C., Brick, NJ
Vice President: Bryn Poland, Esq., Mayo & Poland, PLLC, Baytown, TX
Secretary: Elizabeth Noble Friman, Esq., Fleming & Curti, PLC, Tucson, AZ
Treasurer: Christopher W. Smith, Esq., Chalgian & Tripp Law Offices PLLC, Southfield, MI
Past President: Amy C. O'Hara, CELA, Littman Krooks, LLP, Rye Brook, NY

Directors:

Leonard R. Anderson, Esq., Barlow Anderson, Anchorage, AK
Roxanne J. Chang, Esq., Roxanne J. Chang Advocate, Plymouth, MI
Emily A. Donaldson, CELA, Stevens & Brand, Topeka, KS
Emma R. Hemness, CELA, Hemness Faller Elder Law, Brandon, FL
Emily B. Kile, Esq., Mushkatel, Gobbato & Kile, PLLC, Scottsdale, AZ
Elena A. Lidrbauch, CELA, Hickman, Lowder, Lidrbauch & Welch Co., LPA, Sheffield Village, OH
Jacob H. Menashe, Esq., Hickman Menashe, P.S., Lynnwood, WA
Rebecca C. Morgan, JD, LLM, Stetson University College of Law, Gulfport, FL
Ethan J. Ordog, Esq., Begley Law Group, Moorestown, NJ
Larry H. Rocamora, Esq., McPherson & Rocamora, PLLC, Durham, NC
Benjamin A. Rubin, Esq. LLM, Rubin Law, A Professional Corporation, Buffalo Grove, IL
Matthew T. Smith, Esq., Elder Law Lawyers McClelland & Associates, PLLC, Lexington, KY

Fresh Perspectives and Continued Excellence

About the Special Needs Alliance

For more information about the Special Needs Alliance and its services, visit www.specialneedsalliance.org.

Media Contact:

Jihane Davidow, Executive Director

Persons with Disabilities Need to be Taught “The Rules of Sex”

What is “having sex”?
Who can you have sex with?
What happens if you have sex?
Can I have sex in my bedroom?
When is it okay to touch someone?
When can you talk about sex?
What is “privacy”?
What are my “sexual rights”?
Where can I do sexual things?
What kind of sex is against the law?

Sexual Health of Persons with Disabilities

Societal and psychosocial barriers.
The often unpredictable timing of puberty.
Inaccessible medical equipment, including examination tables, weight scales and imaging devices.
Lack of appropriate routine and preventative gynecological and urological care.
Lack of examination adaptations to accommodate the person’s physical or neuromuscular challenges.
Lack of information regarding abstinence, contraceptives, and the impact of contraceptive drugs on a person’s overall health.
Historically inappropriate imposition of sterilization as the default approach to preventing persons with disabilities from procreating.
Lack of “developmentally appropriate” sex education for persons with disabilities.
Complete avoidance of topics such as sexual orientation, gender identity, sexually transmitted diseases, contraception, and abstinence.
The failure of IEPs (Individualized Education Programs) to require developmentally appropriate sex education for students with disabilities.
The adverse impact of the cultural, religious, and personal experiences of parents or guardians on their willingness to facilitate the sexual education of their children with disabilities.

Advising the medical provider of the anticipated presence of one or more support personnel during a scheduled examination can be essential to the visit’s success.

Sexual Relationships of Persons with Disabilities

What are Need-Based Benefits?

What Are Entitlement Programs?

The Difference

Reasons To Apply For SSI

Asset Limitations and Income Restrictions: SSI eligibility is contingent upon meeting strict asset and income limitations set by the SSA.
Protecting Eligibility for Other Programs: By applying for SSI, individuals with special needs can also safeguard their eligibility for other critical programs and services, such as Supplemental Nutrition Assistance Program (SNAP), housing assistance, Medicaid Waivers, and vocational rehabilitation services. These programs can offer further assistance and opportunities for individuals to enhance their quality of life and independence.
Gateway to Other Benefits: While SSI provides modest monthly benefits, it acts as a vital gateway to various support services, including Medicaid Waivers. Similarly, CDB not only offers financial assistance but also opens doors to Medicare coverage. Together, these programs ensure the long-term financial security and well-being of individuals with special needs.

What’s So Great About Medicare

Key Changes Introduced by the SECURE Act

Surviving spouses
Disabled or chronically ill individuals
Individuals not more than 10 years younger than the deceased account owner
Minor children of the account owner (until they reach the age of majority).

What Are the Benefits of Leaving an IRA to a Person with a Disability Post-SECURE Act?

Impact on Special Needs Trusts

Conclusion

The Special Needs Planning + Financial Planning Partnership

Detailed financial information is collected, and all assets are accounted for.
Special needs planning documents are properly created and updated.
Public benefits eligibility is preserved.
Legal and financial strategies are harmonized to minimize tax liabilities and legal complications.

Finding the Right Help for You

What Your Team Will Do for You

Taking inventory of all assets and liabilities.

Creating a strategy that encompasses public benefits, investments, insurance, and tax planning to ensure your loved one’s financial security during your lifetime and efficient transfer of wealth upon death.
Evaluating and recommending adjustments to existing investment portfolios to align with special needs planning goals.

Tax-efficient strategies to reduce income, estate, and inheritance taxes.
Eligibility for public benefits.
The legal requirements for different types of asset transfers and beneficiary designations.
Setting up trusts and other legal mechanisms to protect assets and ensure they are used according to your wishes.

Ongoing Monitoring and Adjustments: Special needs planning is not a one-time event but rather an ongoing process that requires regular review and adjustments. Your team will help by:

Monitoring the special needs plan to ensure it stays aligned with your goals and any changes in your financial situation or family dynamics.
Advising on necessary updates to the special needs plan in response to changes in the law and life events such as marriage, divorce, birth of children, or changes in health.
Ensuring that beneficiary designations and asset titling are kept current.

Ensure that all aspects of your financial life are considered and managed cohesively.
Provide a clear roadmap for asset distribution, reducing the risk of family disputes and legal challenges.
Offer ongoing support and guidance to your loved one after your passing.

Protecting and providing for your family member with special needs now and in the future is a unique and complicated process. Finding a team to help you set goals, manage your assets, navigate taxes, and monitor your plan is the key to your peace of mind. If you’re ready to chat with a special needs planning attorney in your state, a list of SNA attorney members is available here. [/fusion_text][fusion_text columns="" column_min_width="" column_spacing="" rule_style="" rule_size="" rule_color="" hue="" saturation="" lightness="" alpha="" content_alignment_medium="" content_alignment_small="" content_alignment="" hide_on_mobile="small-visibility,medium-visibility,large-visibility" sticky_display="normal,sticky" class="" id="" margin_top="" margin_right="" margin_bottom="" margin_left="" fusion_font_family_text_font="" fusion_font_variant_text_font="" font_size="" line_height="" letter_spacing="" text_transform="" text_color="" animation_type="" animation_direction="left" animation_color="" animation_speed="0.3" animation_delay="0" animation_offset="" logics=""] About this Article: We hope you find this article informative, but it is not legal advice. You should consult your own attorney, who can review your specific situation and account for variations in state law and local practices. Laws and regulations are constantly changing, so the longer it has been since an article was written, the greater the likelihood that the article might be out of date. SNA members focus on this complex, evolving area of law. To locate a member in your state, visit Find an Attorney. Requirements for Reproducing this Article: The above article may be reprinted only if it appears unmodified, including both the author description above the title and the "About this Article" paragraph immediately following the article, accompanied by the following statement: "Reprinted with permission of the Special Needs Alliance – www.specialneedsalliance.org." The article may not be reproduced online. Instead, references to it should link to it on the SNA website. [/fusion_text][fusion_button link="https://www.specialneedsalliance.org/wp-content/uploads/2024/11/Securing-the-Future-The-Essential-Role-of-Special-Needs-Planning-and-Financial-Planning.pdf" title="" target="_self" link_attributes="" alignment_medium="" alignment_small="" alignment="center" modal="" hide_on_mobile="small-visibility,medium-visibility,large-visibility" sticky_display="normal,sticky" class="" id="" color="default" button_gradient_top_color_hover="" hue="" saturation="" lightness="" alpha="" button_gradient_top_color="" button_gradient_bottom_color_hover="" button_gradient_bottom_color="" gradient_start_position="" gradient_end_position="" gradient_type="" radial_direction="" linear_angle="180" accent_hover_color="" accent_color="" type="" bevel_color="" bevel_color_hover="" border_top="" border_right="" border_bottom="" border_left="" border_radius_top_left="" border_radius_top_right="" border_radius_bottom_right="" border_radius_bottom_left="" border_hover_color="" border_color="" size="" padding_top="" padding_right="" padding_bottom="" padding_left="" fusion_font_family_button_font="" fusion_font_variant_button_font="" font_size="" line_height="" letter_spacing="" text_transform="" stretch="default" margin_top="" margin_right="" margin_bottom="" margin_left="" icon="" icon_position="left" icon_divider="no" hover_transition="none" animation_type="" animation_direction="left" animation_color="" animation_speed="0.3" animation_delay="0" animation_offset=""]Download PDF[/fusion_button][/fusion_builder_column][/fusion_builder_row][/fusion_builder_container] [post_title] => Securing the Future: The Essential Role of Special Needs Planning and Financial Planning [post_excerpt] => This article is provided by Andrew Hook, CELA of Hook Law Center in Virginia Beach, VA. Andy is a founding member of the Special Needs Alliance, and also is a CERTIFIED FINANCIAL PLANNERTM (CFP®). He focuses on elder law, special needs planning, and asset protection. [post_status] => publish [comment_status] => open [ping_status] => closed [post_password] => [post_name] => securing-the-future-the-essential-role-of-special-needs-planning-and-financial-planning [to_ping] => [pinged] => [post_modified] => 2024-11-14 08:35:58 [post_modified_gmt] => 2024-11-14 13:35:58 [post_content_filtered] => [post_parent] => 0 [guid] => https://www.specialneedsalliance.org/?p=639087 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw ) ) [post_count] => 20 [current_post] => -1 [before_loop] => 1 [in_the_loop] => [post] => WP_Post Object ( [ID] => 741777 [post_author] => 494 [post_date] => 2025-05-29 10:19:49 [post_date_gmt] => 2025-05-29 14:19:49 [post_content] =>

This issue of the Voice® is written by SNA Public Policy Advisor Brian Lindberg, Vice President of Health and Aging Policy with Healthsperien LLC in Washington, DC.

We all know the real estate maxim, Location, Location, Location. But I am a public policy advisor, not a realtor, so my maxim is Relationships, Relationships, Relationships!

You have the right as a citizen to speak to your elected representatives
You can meet with your representative or senator in the district (locally) or in Washington, DC, at their Capitol Hill office.
Remember, these are not high-pressure meetings, but simply a chance to introduce yourself, your work, and your perspective to the people representing you in Washington. A positive relationship with policymakers on the Hill can help the SNA advance its policy priorities and improve the lives of our clients.
Prepare a brief “elevator speech” in which you describe your area of expertise, who you or your clients are, and your perspective.
Offer one or two stories to bring your clients to life for the members of Congress and the staff in your meeting.
If you are discussing a specific piece of legislation, point out how the legislation addresses the problem you and your client are facing. Emphasize that a solution exists; a credible solution helps elicit support from the legislator for your issue.
Use the SNA talking points to help you explain the legislative proposal.
Be ready with the “ask”: We often ask members of Congress to co-sponsor the legislation we support.
Ask the person with whom you meet about their priorities and work in the disability and health areas.
Thank the person for their time and offer to be available as a resource in the future. Leave the SNA one-pager and your business card with the office.
Follow up promptly with an email with any information you offered to provide. Also, if the legislation in question develops, such as being referred to a committee or a hearing, let the legislative office know.

SNA Brochure
Supporting Individuals with Disabilities One-pager
DAC Fairness Act One-pager
DAC Fairness Act Talking Points
Hill Visit Outline
Capitol Hill Map

Here is a sample of comments from SNA Members who were Hill Day participants:

It was a very positive experience; I definitely recommend continuing. Staff seemed grateful for the info and to know that we were available as a resource on special needs.

Staffer looking for Republican interest in cosponsoring bill. Please contact her directly with GOP support.

I met with staff whose mom was a special ed teacher so she’s familiar with the disability community.

Staff were surprised and grateful to learn about specific programs that would be unavailable to persons with disabilities because of their CDB/DAC payments.

Member requested real person data and stories.

The staffer expressed concern about the financial burden on the state (Medicaid) as a result of the legislation. We explained that the legislation is likely revenue neutral.

That was such an enriching experience!