Find an Attorney Archive - Special Needs Alliance

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This issue of The Voice® was written by SNA members Thomas Begley, Jr., CELA, and Emily Schurr of the Begley Law Group in Moorestown, NJ. The firm focuses on all areas of elder and disability law, including estate planning, special needs planning, special needs trusts, personal injury settlements, Medicaid planning and applications, estate and trust administration, and guardianship.

Crises and Kindness

In times of crisis, people often show just how caring humanity can be. Strangers donate time and money to individuals injured in tragic accidents. Our first instinct when we learn that someone has been hurt is often to offer financial support. Yet what feels like a generous and selfless act can, without the donor realizing it, have unintended and sometimes devastating consequences for the injured individual and their family. If the injured person receives means-tested government benefits, any extra income or assets could potentially lead to disqualification from crucial benefit programs. Crowdfunding platforms like GoFundMe, Kickstarter, and Indiegogo can provide vital support by quickly rallying funds. But if those funds aren’t managed properly, they may unintentionally cause people with disabilities to lose access to essential public benefits.

Public Benefits

Many individuals with disabilities receive critical public benefits. Some of these public benefits are means-tested. These include:

Supplemental Security Income (SSI)
Medicaid
Medicaid Waiver Programs (long-term care)
Federally-Assisted Housing (Section 8 housing)
State Disability Services for Intellectual and Developmental Disabilities

“Means-tested” refers to programs that have limits on income and/or assets for eligibility. For SSI purposes, income and assets of a parent living with a child with disabilities under age 18 are deemed to the child with disabilities. It should be noted that when used in this article, “child” can refer to an adult child.

Other public benefits are not means-tested. These include:

Social Security Disability Insurance (SSDI)
Medicare

When Are Funds Considered Received?

What matters in this analysis in terms of means-tested public benefits is whether the individual actually receives the funds. This may seem like a simple question, but the timing can have a major effect on individuals already receiving benefits. According to the Social Security Administration’s Program Operations Manual System (POMS), POMS SI 00810.030(A), income is counted at the earliest of the following:

When the payment is received,
When the payment is credited to the beneficiary’s account, or
When the payment is set aside for the beneficiary’s use.

It may be difficult to determine when income is counted for a special needs trust. The Social Security Administration may take the position that receipt occurs when the funds are held in a separate account, pending the establishment and funding of a special needs trust.

Who Is the Intended Beneficiary?

When a fundraiser is created, it is often unclear whether the beneficiary is the individual with a disability or their family members. That distinction is crucial because it determines which planning strategies must be implemented.

What Are the Options with Respect to Disposing of the Funds Received Through a Fundraiser?

Depending on the amount of money raised and whether the funds are intended for the individual or their family, there are several possible options for using the funds received from the fundraiser.

Funds Intended for Family Members of Person with Disabilities

If it is clear that the funds are raised for the family of a person with disabilities who is receiving means-tested public benefits, the family member can:

Spend the Money. The family member can spend the money on behalf of the individual with disabilities. However, if the individual with the disability is a child under the age of 18 and is living with a parent, the funds received from the fundraiser by the parent are deemed to the child for SSI purposes and may cause a loss of means-tested public benefits. If there is to be a spend-down, it should occur during the month the funds are received to avoid counting it as a resource in the following month. Similarly, to avoid counting the funds as a resource in the following month, the spend-down should also occur during the month the funds are received.
Third Party Special Needs Trust. A family member can establish a Third-Party Special Needs Trust to hold the money and use it for the special needs of the individual with disabilities. The assets in the Third Party Special Needs Trust are not counted as assets for public benefit purposes. Income is not counted if distributed directly to third parties. The advantage of a Third-Party Special Needs Trust, as opposed to a Self-Settled Special Needs Trust, is that the administration is more flexible. Distributions are not limited by the “sole benefit of” rule discussed below, and there is no Medicaid payback on the death of the beneficiary with disabilities. This option only makes sense if the fundraiser is running and generates sufficient funds to cover the costs of establishing and maintaining a trust. Otherwise, the expenses may outweigh the benefit.
ABLE Account. An alternative to a Third-Party Special Needs Trust is an ABLE Account. However, an ABLE Account can only be funded by contributions up to the annual gift tax exclusion each year. This is not a maximum per individual donor, but rather a maximum on total donations. For 2025, the maximum is $19,000.

Funds Raised Directly for the Individual

If the funds are raised directly for an individual with disabilities, the individual has several alternatives:

Self-Settled Special Needs Trust. A Self-Settled Special Needs Trust, also known as a (d)(4)(A) Trust, may be established when donated funds are identified as clearly for the benefit of the individual with a disability. Self-Settled Special Needs Trusts are not as flexible as Third-Party Special Needs Trusts in that distributions are limited for the “sole benefit of” the trust beneficiary, and there is a Medicaid payback upon the death of the beneficiary. Again, the amount at issue should be considered when determining whether the amount in question justifies the set-up and administrative costs of the trust itself.
ABLE Account. Another alternative is to establish an ABLE Account.
Spend Down. The individual may also consider spending the money received in the same month.
Accept the Money. The individual may simply accept the money, but this will cause a loss of means-tested public benefits.
Transfer the Money. Transferring the money to a third party would likely result in a transfer of asset penalty if the beneficiary were receiving SSI or Long-Term Care Medicaid.
Guardianship Account. Another possible option—if permitted under state law—is to place the funds in a guardianship account for the minor or incapacitated person. But this approach has serious drawbacks: the funds are treated as the individual’s own assets, which can cause a loss of means-tested public benefits, and it typically requires court approval, annual reporting, and ongoing oversight. For these reasons, it is rarely the best choice.

Pooled Trust

If the funds raised are too much for an ABLE account but not enough to justify setting up a private trust (typically between $200,000 and $250,000), a Pooled Special Needs Trust can be a good solution. A Pooled Trust, also known as a (d)(4)(C) Trust, is a community trust operated by a non-profit disability organization. Funds are pooled with other members for investment purposes, but each individual has a separate subaccount. Individuals sign a Joinder Agreement. The Joinder Agreement can be used for either Third-Party or Self-Settled Trusts.

Conclusion

Crises often bring out the best in people, as communities rally with compassion and generosity. The way fundraising gifts are handled can mean the difference between offering proper help and unintentionally creating hardship. Well-intentioned donations may jeopardize essential benefits unless they are directed through the right tools. The good news is that with thoughtful planning, kindness can be preserved in full. Donors can give with confidence, and families can accept support without compromising the stability of critical benefits, demonstrating that generosity and protection can work in harmony.

Sharing Guidelines: This article may be reproduced only with prior permission and must remain unaltered and include the author’s byline and the “About this Article” section immediately following the main content. Any redistribution must include the following credit: “Reprinted with permission of the Special Needs Alliance – www.specialneedsalliance.org.”

Online republication of the full article is not permitted. To share or reference this content digitally, please do so by linking directly to the original post on the Special Needs Alliance website.

Download PDF [post_title] => The Fundraiser Dilemma: Supporting Individuals with Disabilities Without Jeopardizing Public Benefits [post_excerpt] => [post_status] => publish [comment_status] => open [ping_status] => closed [post_password] => [post_name] => the-fundraiser-dilemma-supporting-individuals-with-disabilities-without-jeopardizing-public-benefits [to_ping] => [pinged] => [post_modified] => 2025-09-29 15:13:28 [post_modified_gmt] => 2025-09-29 19:13:28 [post_content_filtered] => [post_parent] => 0 [guid] => https://www.specialneedsalliance.org/?p=743388 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw ) [1] => WP_Post Object ( [ID] => 743383 [post_author] => 1 [post_date] => 2025-09-24 16:20:37 [post_date_gmt] => 2025-09-24 20:20:37 [post_content] => For many families, the hardest part of applying for disability benefits isn’t the paperwork itself — it’s the uncertainty. What if we do it wrong? Which records matter most? How long will it take? What if the application is denied? These questions can make the process feel overwhelming before it even begins. Thankfully, the process isn’t as daunting as it seems. In broad strokes, here’s what the Social Security Administration (SSA) says you need to do when applying: • Check eligibility to see whether Social Security Disability Insurance (SSDI) or Supplemental Security Income (SSI) may apply. • Gather documents such as medical and employment records. • Create a My Social Security account to serve as your secure online hub. • Submit the application online, with the option to save your work and return later. • Wait for review while SSA and state agencies make a decision. Straightforward as this looks on paper, families often find that doubts and misconceptions creep in at every stage. Below, we address the myths we hear most often — and the truths that can help make the process more manageable. Myth: “We probably won’t qualify, so why bother?” Truth: You won’t know until you check. The Social Security Administration (SSA) has two programs — Social Security Disability Insurance (SSDI), based on work history, and Supplemental Security Income (SSI), based on income and resources. Adults must have a medical condition that prevents work and is expected to last at least one year or result in death. SSA offers a quick eligibility tool to help families get clarity. This first step doesn’t commit you to applying; it simply helps you understand if moving forward makes sense. Myth: “The paperwork will take forever.” Truth: You don’t have to do it all at once. SSA’s Adult Disability Starter Kit includes a checklist and worksheet that break the process into smaller tasks. Many caregivers find it helpful to set up a digital or physical folder and add documents gradually: a doctor’s note one week, employment records the next, prescription lists as they come in. Every piece you collect now makes the application smoother later. Myth: “The online system is too confusing.” Truth: Setting up a my Social Security account is straightforward and creates a secure “home base” for the entire process. Through it, applicants can review their work history, estimate potential benefits, and track the progress of their application. The account must be created in the applicant’s name, but caregivers can provide support along the way. Once it’s in place, families often feel less scattered — because all the information lives in one central spot. Myth: “The application will take hours, and I don’t have that kind of time.” Truth: The online system is designed with flexibility in mind. You can save your work and return later — a relief for caregivers who already juggle busy schedules. SSA also provides an online video series so you’ll know what to expect before you begin. Myth: “If the application is denied, that’s the end.” Truth: Denials are common, especially at the first stage. But many people are approved later through the appeals process. After submission, SSA reviews the application and then forwards it to State Disability Determination Services, where medical evidence is reviewed and sometimes supplemented by a consultative exam. This stage often takes six to eight months. Families can check the application status online, which is less stressful than repeated phone calls. SSA also offers a third-party caregiver page with guidance on how to stay involved during this waiting period. Moving Forward with Confidence Applying for disability benefits takes effort, but it doesn’t have to be confusing or isolating. By separating myths from facts and using the tools SSA provides, caregivers can move forward with greater clarity and less stress. For an official checklist of the steps involved, see the Social Security Administration’s article on applying for disability. And when questions arise about eligibility, appeals, or how disability benefits fit with other programs, a Special Needs Alliance attorney is available to help. 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. Sharing Guidelines: This article may be reproduced only with prior permission and must remain unaltered and include the author’s byline and the “About this Article” section immediately following the main content. Any redistribution must include the following credit: “Reprinted with permission of the Special Needs Alliance – www.specialneedsalliance.org.” Online republication of the full article is not permitted. To share or reference this content digitally, please do so by linking directly to the original post on the Special Needs Alliance website. Download PDF [post_title] => Applying for Disability Benefits: What Families Should Know [post_excerpt] => Applying for disability benefits takes effort, but it doesn’t have to be confusing or isolating. By separating myths from facts and using the tools SSA provides, caregivers can move forward with greater clarity and less stress. 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This article is an updated version of one originally published in August 2014 by SNA member Ed Wilcenski of Wilcenski & Pleat, PLLC in Clifton Park, NY, and now-retired SNA member Barbara Hughes.

Studies indicate that divorce rates increase with the onset of a disability. While any divorce is likely to be disruptive, when one or both spouses have disabilities, there are additional complications. Marital laws differ by state, but here are issues to consider.

Question of Capacity

In cases where a disability is cognitive, a spouse’s decisional capacity may be at issue regarding how that spouse can participate in the divorce. State laws vary greatly regarding the right to initiate or participate in divorce proceedings when a party has impaired capacity. If a spouse’s cognitive impairment is severe, a court may require the appointment of a guardian or conservator to represent that spouse. If the spouse with severe impairment is petitioning for divorce, the court may require a guardian to show why the divorce is in the individual’s best interest. Similarly, some states may also require the responding spouse to have a guardian or conservator appointed if they are severely impaired.

Additional Supports

In the case of an amicable divorce, it’s not unusual for an ex-spouse to continue playing a supportive role in the life of an individual with a disability, especially if there are minor children from the marriage. On the other hand, if their ex-spouse does not continue to play a supportive role, a person with a disability may require an array of new services. Other family members may be able to assist, but professional services paid for with private funds or through Medicaid waiver programs may need to be considered. While the court will determine custody of minor children based on their best interests, it will also consider the best interests of the individuals involved. Individuals with disabilities retain their parental rights, even if interacting with their children requires supportive services.

If the former spouse had been named health care proxy or granted power of attorney over finances and property, such legal documents should be reviewed and updated, as necessary.

Special Needs Trusts (SNTs)

Given the changing economic status of an individual with a disability who is a party to a divorce, eligibility for needs-based governmental benefits may become more important than ever. If a first-party SNT does not already exist, an SNT can be created to hold that individual’s share of divided marital assets and to receive any required alimony payments. This option may not be available if the ex-spouse needing governmental benefits is over the age of 64. Some state Medicaid programs will permit assets to be protected in a pooled first-party SNT.

While it would be nearly impossible for one spouse to make successful claims against the other’s third-party SNT, a first-party SNT may be another matter, depending upon state law. Some funding sources are protected, while others are not. When established to hold a personal injury settlement (with the possible exception of compensation for lost wages), funds in a first-party SNT are not subject to division between divorcing parties. The same goes for funds resulting from inheritances or gifts to the recipient party. In contrast, if a first-party SNT was partially funded from “unprotected” sources that were deposited to such a trust during the marriage, this property might be subject to division. The same would be true if marital funds were deposited to a pooled trust.

In any case, when the court decides the overall distribution of property, the court may consider the existence of an SNT, the type of SNT, its size, and the sources of its funding.

Effect on Governmental Benefits

Any divorce can be difficult, especially when it comes to finances, but for a divorced spouse with a disability, navigating the complex system of governmental benefits can be overwhelming. These benefits can be a vital source of income, helping to ease the financial challenges of disability, which may be compounded by divorce.

There are often questions about the effect of divorce on one’s governmental benefits and whether funds received through public programs must be shared with an ex-spouse. Here’s an overview:

Supplemental Security Income (SSI)

Since SSI is a needs-based program, an individual’s benefits may increase upon divorce, depending upon the division of property and alimony payments. SSI payments cannot be garnished for alimony or child support.

Social Security Disability Insurance (SSDI)

Based on Own Work Record

Although benefits won’t change, a portion could be garnished if an individual is ordered to pay alimony or child support. Some individuals are surprised to learn that they are not eligible for SSDI on their work record because their prior employment is not recent enough. Not only must workers with disabilities have a certain number of quarters of employment based upon their age, but 20 quarters must be earned within the prior 10 years if the individual is over the age of 30.

Based on Deceased Ex-Spouse’s Work Record

If an ex-spouse dies fully insured, a surviving ex-spouse with a disability may be eligible for SSDI benefits on the deceased ex-spouse’s work record if the deceased ex-spouse’s benefit is higher than the record of the surviving ex-spouse. The surviving ex-spouse must be at least 50 years old and have been married to the deceased ex-spouse for at least 10 years. Remarriage after the age of 50 or termination of an earlier marriage will not affect eligibility for this benefit.

Social Security Retirement

Unless the individual with a disability has their own Social Security record that entitles them to a larger benefit, the individual with a disability will remain eligible for benefits based on an ex-spouse’s record if the couple was married for at least 10 years, the individual with a disability remains single, and is at least 62. If the former spouse has yet to apply for Social Security, the ex-spouse with a disability may still be eligible for benefits based on the ex-spouse’s work record if the parties have been divorced for at least two years and are both at least 62 years of age. The ex-spouse does not need to give permission or even know that the other spouse is receiving benefits based on the ex-spouse’s work record. The benefits awarded to a spouse do not reduce the benefits to which the primary worker and other dependents are entitled.

If an ex-spouse dies fully insured, the surviving ex-spouse may be eligible for retirement benefits on the deceased ex-spouse’s work record if the benefit is higher than the surviving ex-spouse’s record. The ex-spouse must be at least 60 and married at least 10 years to the deceased ex-spouse. Remarriage after the age of 60 or termination of an earlier marriage will not affect eligibility for this benefit.

Medicare

Medicare is an important health insurance benefit for individuals receiving SSDI for more than two years, or individuals and their spouses who are at least 65 and receiving Social Security retirement income, including divorced spouses. Based on their work history, most individuals never pay premiums for Medicare Part A, which covers hospital expenses and short-term skilled nursing home care. Part B covers doctor visits and durable medical equipment with a minimal premium. If individuals are 65 but are not eligible for Social Security retirement income, they may be eligible to purchase Medicare insurance. Additionally, there is a Medicaid program that can help with the cost of premiums for low-income individuals with or without a disability. Medicare eligibility is not dependent upon being married or divorced.

Must Benefits Be Divided?

States differ in their approach to dividing marital property, including governmental benefits of a spouse with a disability. Some states allocate all property and assets on a 50:50 basis, while others follow the principle of “equitable division,” through which the court determines a “fair” distribution.

Although SSDI benefits generally aren’t considered marital property, depositing such funds into a joint account might result in a 50:50 division in a state with an equal property division divorce statute. Accounts established to hold only SSI or other disability benefits likely would be exempt from property division. However, such accumulated sums likely would be considered by courts in equitable division states when determining overall property distributions.

When calculating alimony, SSDI payments are considered income, while SSI is not.

VA disability benefits may not be considered when dividing marital property. However, these benefits may be garnished to pay spousal or child support if the veteran waived a portion of retirement pay to receive nontaxable disability benefits. VA benefits are considered income when determining support obligations.

Estate Recovery

If eligibility for Medicaid was established through “spousal refusal” (an individual refuses to use their assets to support an institutionalized spouse), upon the death of the person receiving services, the state may seek reimbursement from an ex-spouse for expenses incurred during the marriage.

Individuals with disabilities who are considering divorce should educate themselves about the potentially significant economic implications of dissolving a marriage. Because specifics vary so dramatically from state to state, such an individual should consult a local family law attorney or estate planning attorney who is experienced in, or who will retain co-counsel for, the complex nuances affecting individuals with disabilities.

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This article is provided by SNA member Sarah Kirkpatrick and her colleague Mitchell Sickon, of Chalgian & Tripp Law Offices PLLC. Serving multiple locations in Michigan, the firm specializes in special needs, guardianship and conservatorship, estate planning, elder law, Medicaid planning and financial exploitation of vulnerable adults.

Navigating the legal system is daunting for most people. If you or a loved one is deaf or hard of hearing, the process can feel even more complex — but you’re entitled to clear, legally backed accommodations. The Americans with Disabilities Act (ADA) spells out those rights and knowing them will help you pursue legal support with confidence.

Your Rights Under the ADA

Even if you're not a client of any law office yet, you should still receive the support necessary to communicate effectively, whether that means an American Sign Language (ASL) interpreter, a Certified Deaf Interpreter (CDI), or both. If you become a client at a law office, the same support requirement applies for ongoing, effective communication between attorneys and clients.

A law office is a "place of public accommodation." The typical expectation is that folks can come in off the street and seek services. Places of public accommodation are covered by Title III of the ADA, and so we can look there for what is required.

As a general rule, whatever the law office does for intake — same-day intake for a walk-in, for example — should be the same for anyone with a disability. They can’t deny legal services because of a lack of communications supports, and communication with a client or prospective client who is deaf must be just as effective as communication with others.

Types of Communication Support Available

The type of support you'll need depends on your individual communication preferences and abilities, and includes:

American Sign Language (ASL) Interpreters: Since interaction with a law office involves legal matters, any ASL interpreter must have proper endorsement to perform legal interpretation. This specialized training ensures they understand legal terminology and procedures.
Certified Deaf Interpreters (CDI): If you have experienced language deprivation, a CDI may work alongside an ASL interpreter to ensure truly effective communication. You can find qualified CDIs through the Registry of Interpreters for the Deaf database.
Video Remote Interpreting (VRI): While in-person interpretation is generally preferred, VRI can be an option when immediate service is needed, though technical issues can sometimes create challenges.

Planning Your Visit for Success

You can make the process smoother for everyone by taking these steps:

Call Ahead: When you first contact a law office, be specific about your communication needs. This conversation helps the office understand what accommodations to arrange and allows you to schedule when appropriate interpreters are available.
Be Patient With Scheduling: While it might mean waiting a few days for your appointment, this ensures you'll have proper interpretation services rather than struggling with inadequate communication.
Use Alternative Communication When Appropriate: Consider using email for initial inquiries or follow-up questions when it doesn't require real-time discussion. This can save both you and the law office time and money.

“Undue Burden?” Not Likely

Instead of working with you to find appropriate support, a law office could say that getting appropriate communication supports in place would result in an "undue burden." But with the availability of qualified interpreters, such a position is unlikely to stand up in court.

Many state departments of licensing and regulatory affairs maintain a database of ASL interpreters with legal endorsements, and there are support and advocacy organizations for the deaf throughout the nation that can arrange for legal ASL interpreter services. If you try to meet with an attorney and ask for a sign language interpreter and the office responds with an argument that it would be an "undue burden," you may have another legal issue on your hands — discrimination based on disability. But even if you are turned down at one law office, you can find another that will help with your original legal concern.

Important Billing Information

Finally, it's important for you to know that law offices cannot charge a prospective client or established client for interpreter costs. However, a law office likely can bill for the additional time required to provide the appropriate accommodations to ensure effective communication. Make sure that you understand how billing works and get all your questions answered by the law office before you agree to any representation.

Understanding your rights under the ADA is the first step toward accessing effective legal representation. While navigating these requirements may seem complex at first, remember that the law is on your side. By being prepared, communicating your specific needs clearly, and working collaboratively with law offices, you can ensure that communication barriers don't prevent you from receiving the legal assistance you need.

Download PDF [post_title] => Your Right to Effective Communication: A Guide for Deaf and Hard of Hearing Individuals Seeking Legal Advice [post_excerpt] => Navigating the legal system is daunting for most people. If you or a loved one is deaf or hard of hearing, the process can feel even more complex. [post_status] => publish [comment_status] => open [ping_status] => closed [post_password] => [post_name] => your-right-to-effective-communication-a-guide-for-deaf-and-hard-of-hearing-individuals-seeking-legal-advice [to_ping] => [pinged] => [post_modified] => 2025-08-11 10:31:29 [post_modified_gmt] => 2025-08-11 14:31:29 [post_content_filtered] => [post_parent] => 0 [guid] => https://www.specialneedsalliance.org/?p=743362 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw ) [4] => WP_Post Object ( [ID] => 743348 [post_author] => 494 [post_date] => 2025-07-14 10:57:04 [post_date_gmt] => 2025-07-14 14:57:04 [post_content] =>

Stephen Covey’s book, The Seven Habits of Highly Effective People, includes the habit Begin With The End In Mind. In planning for a child with disabilities, the place to begin is with a Life Care Plan.

The Life Care Plan begins with gathering the following important information: The contact information of the individual with disabilities. Whether they are married or single. Do they have capacity? Are they a U.S. citizen? Did the disability begin before age 22? If not, did it begin before age 26 or before age 46? What is the diagnosis for the individual with disabilities? Does the individual require assistance with taking medicine? How much money is available? What public benefits and private insurance is the individual receiving or able to receive? If there is a personal injury attorney involved, what is the attorney’s contact information? What is the contact information for the family member with whom the advising attorney will be working most closely? Will someone need to establish a special needs trust, and if so, who?

After you have obtained the basic information, you can develop the Life Care Plan, with details for the following topics:

The Players. The players include the individual with the disability, parents, guardian, trustee, important contacts, involved family members, pets, and friends.
Medical Information. Medical information includes physicians, therapists, specialists, prognosis, medical coverage, treatments, special care, and medical providers. Does the individual have private medical insurance? If so, obtain the insurance card and any other relevant information regarding coverage. Does the individual have Medicare? Does the individual have a Medicare supplement? If so, obtain the card. Does the individual receive Medicaid? A copy of the Medicaid card should always be obtained to verify what Medicaid program the individual is receiving. Does the individual receive dental coverage, vision coverage, and/or prescription drug coverage? Which hospital does the individual use? What pharmacy does the individual use? Obtain a list of all prescription and non-prescription medications. Does the individual suffer from allergies?
Emergency. What instructions should be followed in case of an emergency?
Assistance. What level and type of assistance, if any, does the person need?
Abilities and Disabilities. Does the individual have difficulties or extraordinary powers with any of the following: hearing, seeing, speaking, communicating, walking, standing, coordination, memory, concentrating, or understanding? Does the individual require medical or adaptive equipment or supplies, such as glasses, dentures, braces, hearing aids, a walker or cane, a wheelchair, or a service dog?
Interaction with Others. Does the individual get along with family, friends, authority figures, and strangers? How should any potential exceptions be handled?
Stress. Does the individual have difficulties coping with stress? If so, what is the best way to handle that?
Change. Does change in routine affect the individual? If so, how should this be handled?
Personal Characteristics. What are the personal characteristics of the individual?

What is it like to live with the individual?
What is the person's personality?
What are the person’s preferences, likes, and dislikes?
What activities does the individual enjoy?
Does the person need personal care? If so, for what? Does the individual prefer a male or female attendant?
Does the person need assistance with cooking and eating?

Living Arrangements. Where will the individual live? Independently, in a group home, or with a family member? If a family member, what is the name of the family member? Has this been discussed with the other family members?
Employment. Is the individual capable of working? If so, is the individual employed or unemployed? What professional skills and interests does the person have?
Social Activities. What social activities, hobbies, and forms of entertainment does the individual enjoy?
Transportation. What does the individual do for transportation?
Religion. Does the individual practice a religion or have religious beliefs that must be followed?
Hopes and Dreams. What are the individual’s hopes and dreams?
Capacity. Does the individual have the capacity to sign estate planning documents such as a will, living will, and power of attorney? Alternatively, does the individual need a guardian appointed?
Immediate Cash Needs. Frequently, the individual with disabilities has immediate needs. These might include the purchase of a residence, furniture, a vehicle, a vacation, a computer, an iPad, a cell phone, and repayment of outstanding debt.
Budget. The budget should include monthly housing expenses, cable TV, internet, phone, streaming services, home repairs and maintenance, renter’s insurance, trash and garbage removal, and condominium or co-op fees. Transportation should also be considered, including auto insurance, license and registration, gas, oil, and maintenance. Personal expenses must also be budgeted, including items such as food, household supplies, clothing and shoes, vacations, entertainment, cosmetics, toiletries, sundries, over-the-counter medications, prescription drugs not covered by Medicaid, unreimbursed medical expenses, unreimbursed dental expenses, unreimbursed medical insurance expenses, and unreimbursed caregiver expenses.

The Life Care Plan can provide the individual, along with their family and loved ones, with a comprehensive resource for all aspects of daily life. A Life Care Plan charts the future for the individual with disabilities, serving as a set of goals and a roadmap. In addition, regular review of the plan is an opportunity to adjust for changes in the individual’s situation and to coordinate with other legal documents, such as parents’ estate planning documents and trusts.

Download PDF [post_title] => The Importance of Life Care Plans [post_excerpt] => [post_status] => publish [comment_status] => open [ping_status] => closed [post_password] => [post_name] => the-importance-of-life-care-plans [to_ping] => [pinged] => [post_modified] => 2025-07-15 10:21:51 [post_modified_gmt] => 2025-07-15 14:21:51 [post_content_filtered] => [post_parent] => 0 [guid] => https://www.specialneedsalliance.org/?p=743348 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw ) [5] => WP_Post Object ( [ID] => 743346 [post_author] => 494 [post_date] => 2025-07-14 10:24:43 [post_date_gmt] => 2025-07-14 14:24:43 [post_content] =>

Planning a trip is stressful under the best of circumstances, but it's particularly daunting when traveling with someone with dementia. As anyone who has a window into the life of a dementia patient knows, routine is everything in supporting cognitive function, safety, and security. So, how do you plan a trip that sets your loved one up for success and creates some valuable family memories?

Whether it's a simple getaway to visit friends or that bucket list trip you promised each other you'd take together, these experiences are still possible with the right approach — and expert advice. Jan Dougherty, a dementia care expert and founder of Trav-ALZ.com, provides some key insights on planning a successful getaway.

1. Communicate Early and Often

When traveling to visit or with family and friends, be sure to brief them ahead of time about your loved one's condition. Go over routines that work best (and why) and find out how they can help you maintain them. Be specific about what help you need — the goal is to make the trip easier, and that begins with getting the right support from those around you.

As you let family or friends know what may have changed since the last time you got together, don't forget to highlight the things your loved one can do. As caregivers, it's easy to get caught up in the ground lost, but remembering and communicating all that your loved one is still capable of is vital to an enjoyable trip.

2. Set Realistic Expectations

Take some time to assess the expectations you, your loved one, and others may have:

Consider your loved one's perspective: Make sure they actually want to go on this trip and have the ability to handle the demands and logistics of travel. Be honest about whether their symptoms are difficult to manage, even in their home environment.

Evaluate your readiness as a caregiver: Reflect on whether you feel comfortable managing travel for your loved one, can adapt to changes as needed, and are ready to accept help when offered.

Prepare your family and friends: Ensure they have a true understanding of your loved one's condition and don't expect things to be exactly as they were before this stage of memory loss. Address any tendency they might have to correct your loved one.

Get everyone on the same page as you plan your trip, making it clear that certain modifications will be necessary for a successful experience.

3. Plan with Practical Modifications

Dementia inevitably changes travel, but simple modifications in the planning process can help build a memorable experience. When booking a cruise, select a smaller ship with fewer passengers and less room to roam. For group tours, assess activity levels and choose options that don't require frequent hotel changes. When flying, look for minimal connections or build in ample time between flights.

Consider your destination's accessibility, trip length, and emergency planning as you finalize your arrangements. The key is ensuring your loved one's specific needs can be accommodated throughout your journey.

4. Take Advantage of Travel Accommodations

Using available travel accommodations will make an enormous difference in your travel experience with your loved one.

When traveling by plane, alert the airline and submit a request for assistance through TSA Cares ahead of time. You don't have to disclose specifics — it's enough to simply say that you're traveling with someone who has a hidden disability and requires assistance.

TSA and the airline can provide you with vital support and reduce travel anxieties by:

Helping your loved one through security and screening
Accommodating mobility limitations when moving through the airport
Understanding your loved one's communication limitations
Guaranteeing you're seated together on flights

When booking a hotel, look for accessibility features, like doors wide enough to fit a wheelchair, showers without a step, beds that aren't too high, and rooms located away from elevators or loud areas. Avoid booking suites unless you bring a door alarm — remember, you'll likely be exhausted from travel, and the sound of the door opening may not be enough to rouse you.

If your loved one is prone to wandering, consider using a tracker like an AirTag, notes to direct them (or someone trying to assist them) back to you, a sign on your door they can easily recognize, and identification such as Hidden Disabilities Sunflower lanyard, which signifies your loved one needs extra assistance.

5. Maintain Routines While Staying Flexible

People with dementia thrive on routines, so build in as much of your loved one's daily cadence as you can. Take note of the time of day when they are most engaged and plan activities in that window. Similarly, add a few rest times into your trip schedule to give both you and your loved one time to recuperate before or after key events.

For a road trip, plan frequent stops, limit your time in the car to about six hours per day at most, and consider bringing a companion driver to split the driving duties. Keep a routine with quiet evenings to recharge, and consider the possibility of an RV trip, which provides a familiar, consistent space for your loved one during your travels.

Allow your loved one's needs and comfort level to direct your plans. If you need to deviate from your itinerary, that's okay. You can order room service instead of going out to eat, choose a quiet day in the hotel, or even cut your trip short if it's getting to be too much.

6. Enjoy Your Time Away

It's the nature of a caregiver to constantly think three steps ahead but try to give yourself permission to simply enjoy the moments as they come while on vacation. Take photos, keep a journal, engage in the joy of discovering a new place with your loved one, and build memories that you'll enjoy reflecting on later. Consider picking up small mementos that your loved one can engage with when you return home to help you talk about your experiences together.

While difficult, traveling with a loved one with dementia isn't impossible — it just takes a little more planning and consideration. By keeping expectations in check, relying on upfront communication, making sensible accommodations, and building in comfort through routine, you and your loved one can still take the trips, create the memories, and live in the moment.

For more information and resources, be sure to visit Jan at travel-alz.com.

Download PDF [post_title] => Traveling with Dementia: Planning Tips for a Successful Trip [post_excerpt] => Traveling with someone with dementia requires the right planning. Clear communication, managing expectations, and making accommodations can help you and your loved one have a great trip. [post_status] => publish [comment_status] => open [ping_status] => closed [post_password] => [post_name] => traveling-with-dementia-planning-tips-for-a-successful-trip [to_ping] => [pinged] => [post_modified] => 2025-07-15 10:23:07 [post_modified_gmt] => 2025-07-15 14:23:07 [post_content_filtered] => [post_parent] => 0 [guid] => https://www.specialneedsalliance.org/?p=743346 [menu_order] => 0 [post_type] => post [post_mime_type] => [comment_count] => 0 [filter] => raw ) [6] => WP_Post Object ( [ID] => 743342 [post_author] => 494 [post_date] => 2025-06-24 16:16:42 [post_date_gmt] => 2025-06-24 20:16:42 [post_content] =>

This month’s blog originally appeared in January 2022; however, it continues to be an important and popular topic.

When contemplating an ideal environment for a loved one with a disability, a small group home is often considered, given its many benefits. In the majority of instances, families will work to find a placement in an existing group home that is typically owned and operated by a local non-profit service agency. In other situations, families will look to establish a long-term, and hopefully permanent, residence for their family member with a disability. Setting up a small group home requires careful research, and families should weigh the options before undertaking such an effort. For some families, there are limited options for housing options for long-term residential facilities for individuals with disabilities, which can put an additional strain on families seeking permanent housing for their loved one.

Funding

There are two important questions James A. Caffry, Esq. cautions should be answered before moving forward with exploring the creation of a small group home. The first question involves the residents that will occupy the home, and if they will need home and community-based services (HCBS) with Medicaid.

If clients suggest creating a non-profit or private group home one of the first questions would also be about funding sources. For the residents, understanding the funding capability and what sources of revenue they’ll need, in addition to their adult’ children’s SSI and/or SSDI benefits to sustain the group living environment is critical information to have at the forefront.

The second key question involves the developmental services system of care in the state where the home will be created. What does the state allow in terms of a small, privately owned, or non-profit group living situation? It could be a group of families establishing an LLC, or a non-profit who will rely on outside sources of revenue in order to exist. Depending on the situation, the families might need to fund the operation of the building, but the support personnel providing the care for the adults in this living arrangement might be funded through Medicaid.

It’s important to consider scenarios regarding the longevity of the situation. For example, what happens with the LLC if one of the residents wants to move out, or there is a health issue, or a resident dies? Is there a forced buy out? Reviewing the organizing documents and how the home agreements are structured is critical in determining the roles and responsibilities of each family.

Private vs. non-profit group home

Understanding the state laws regarding the creation of a small group home may dictate how the home is established, and under what operating rules.

For families considering a group living model – an entity can perhaps be established as a non-profit under state law, with a 501c3 designation from the IRS. If families can achieve that non-profit status there’s a question of oversight, with an established board of directors and how the organization will be operated. In some states, a nonprofit organization might have to be created as a requirement to receive Medicaid and developmental disability funding.

For a private group home, families might decide ahead of time who will purchase the house, pay for taxes and insurance, and what type of control each family will have on the living arrangements, staffing and daily operation of the home.

Family connections

The pandemic put additional strain on residential housing for individuals with disabilities, and the circumstances for many families, especially parents, generated heightened interest about how and when to band together to create a small group living home.

According to Janet Lowder, CELA, clients typically want to speed up finding a secure living environment for their child with disabilities, while maintaining some control over the type of residential placement their child will be in.

Often families who know each other will band together and look for compatible people to plan something together. If one family is planning a group home, they need to get detailed information about it and sometimes the families join in setting this up. It can be helpful for the families and the individuals living in a group home to collaborate on the research and logistics.

In one instance, a family purchased the real estate for the house, and a group of families who wanted a small group home with a Kosher kitchen were able to pool their resources together to ensure this type of situation for their children. They had a very detailed agreement, with a separate organization and the operation of the house maintained primarily by the family who purchased the real estate.

Decisions about staffing, residents’ lives and activities were decided by the families, each having an equal vote. The family who had the most financial equity in the arrangement did not have a greater say in the decisions. It can work so that an unequal investment in the small group home doesn’t necessarily equate to how decisions are made about the house.

Logistics

Creating operating agreements and entering an LLC are both important steps to take for families considering setting up a small group home. The group homes that are thriving typically have been a result of careful planning and execution, with a lot of foresight into how the homes will operate, and how each family will contribute financially and with regards to oversight of the home.

The operating agreement should specify how the funds and resources are being distributed, and if the parties are all equal members of the LLC. In the case that the house doesn’t work financially without a certain number of residents, there can be provisions in place, where a family can have a set amount of time to make alternate arrangements, particularly in the case when a new resident must be identified before a former resident can move out.

There are times when one family might hand pick the other residents to live with their child, but the process can be delayed because the roommates haven’t become eligible for a Medicaid waiver to cover the costs of the staffing in the home. The benefits that the residents qualify for impact who is going to be in the home and how the home is run.

It’s also critical to understand the living situation for each resident, and how long they might be expected to stay in the group home. For individuals with a traumatic brain injury, one to two years might be the expected timeframe for a group living environment, while individuals with longer-term disabilities might require a more permanent housing arrangement.

Staffing issues can be a challenge for some small group homes, so deciding on the management and establishment of quality staffing personnel is important to discuss in advance of the arrangement. Some social service agencies will help provide support for personnel, while in some cases families might want to oversee the hiring of individuals based on a personal connection or specific qualifications.

Conflict

There might be situations that arise where one resident doesn’t fit in, which can create problems for the other residents in the group home. It’s important to plan ahead to consider how and what this type of conflict will be solved, and what protections exist for the family whose dependent is being asked to leave. Questions around financial responsibilities, notice periods and mediation might be factors that should be addressed early in conversations.

Although it can work, it can be problematic when family members get too involved in the day-to-day operation of the home and try to insert themselves into the personnel management and decision-making process of how the group home is run. Ideally there should be no surprises, and while it can be difficult for residents to adjust to new circumstances within the group home, everyone should agree on the decision-making process, keeping in mind what will be in the best interest of the residents.

Ideal scenario

While establishing a small group home can create an ideal living environment for an individual with disabilities, there are important conversations and decisions that must be made ahead of time to ensure a successful outcome.

The best-case scenario is that a strong operating agreement is put in place, and that everyone in the small group home is compatible and financially supported. The homes that work the best have families who agree on a single provider agency and run the day-to-day management of the home. This includes managing the finances of the home, and the oversight of the staff who will ensure the health and safety of the residents.

While there are numerous factors to consider with the creation of a small group home, the ideal living environment for the person with disabilities should remain the priority. Establishing and maintaining consistency with people, place and a stable environment can be accomplished with the thoughtful creation of strong operating agreements, qualified personnel, and careful oversight to ensure a productive and healthy living arrangement.

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 ) [9] => 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 ) [10] => 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 ) [11] => 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 ) [12] => 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 ) [13] => 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.

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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 ) [14] => 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 ) [15] => 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 ) [16] => 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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Crises and Kindness

Public Benefits

Many individuals with disabilities receive critical public benefits. Some of these public benefits are means-tested. These include:

Supplemental Security Income (SSI)
Medicaid
Medicaid Waiver Programs (long-term care)
Federally-Assisted Housing (Section 8 housing)
State Disability Services for Intellectual and Developmental Disabilities

Other public benefits are not means-tested. These include:

Social Security Disability Insurance (SSDI)
Medicare

When Are Funds Considered Received?

When the payment is received,
When the payment is credited to the beneficiary’s account, or
When the payment is set aside for the beneficiary’s use.

Who Is the Intended Beneficiary?

What Are the Options with Respect to Disposing of the Funds Received Through a Fundraiser?

Depending on the amount of money raised and whether the funds are intended for the individual or their family, there are several possible options for using the funds received from the fundraiser.

Funds Intended for Family Members of Person with Disabilities

If it is clear that the funds are raised for the family of a person with disabilities who is receiving means-tested public benefits, the family member can:

Spend the Money. The family member can spend the money on behalf of the individual with disabilities. However, if the individual with the disability is a child under the age of 18 and is living with a parent, the funds received from the fundraiser by the parent are deemed to the child for SSI purposes and may cause a loss of means-tested public benefits. If there is to be a spend-down, it should occur during the month the funds are received to avoid counting it as a resource in the following month. Similarly, to avoid counting the funds as a resource in the following month, the spend-down should also occur during the month the funds are received.
Third Party Special Needs Trust. A family member can establish a Third-Party Special Needs Trust to hold the money and use it for the special needs of the individual with disabilities. The assets in the Third Party Special Needs Trust are not counted as assets for public benefit purposes. Income is not counted if distributed directly to third parties. The advantage of a Third-Party Special Needs Trust, as opposed to a Self-Settled Special Needs Trust, is that the administration is more flexible. Distributions are not limited by the “sole benefit of” rule discussed below, and there is no Medicaid payback on the death of the beneficiary with disabilities. This option only makes sense if the fundraiser is running and generates sufficient funds to cover the costs of establishing and maintaining a trust. Otherwise, the expenses may outweigh the benefit.
ABLE Account. An alternative to a Third-Party Special Needs Trust is an ABLE Account. However, an ABLE Account can only be funded by contributions up to the annual gift tax exclusion each year. This is not a maximum per individual donor, but rather a maximum on total donations. For 2025, the maximum is $19,000.

Funds Raised Directly for the Individual

If the funds are raised directly for an individual with disabilities, the individual has several alternatives:

Self-Settled Special Needs Trust. A Self-Settled Special Needs Trust, also known as a (d)(4)(A) Trust, may be established when donated funds are identified as clearly for the benefit of the individual with a disability. Self-Settled Special Needs Trusts are not as flexible as Third-Party Special Needs Trusts in that distributions are limited for the “sole benefit of” the trust beneficiary, and there is a Medicaid payback upon the death of the beneficiary. Again, the amount at issue should be considered when determining whether the amount in question justifies the set-up and administrative costs of the trust itself.
ABLE Account. Another alternative is to establish an ABLE Account.
Spend Down. The individual may also consider spending the money received in the same month.
Accept the Money. The individual may simply accept the money, but this will cause a loss of means-tested public benefits.
Transfer the Money. Transferring the money to a third party would likely result in a transfer of asset penalty if the beneficiary were receiving SSI or Long-Term Care Medicaid.
Guardianship Account. Another possible option—if permitted under state law—is to place the funds in a guardianship account for the minor or incapacitated person. But this approach has serious drawbacks: the funds are treated as the individual’s own assets, which can cause a loss of means-tested public benefits, and it typically requires court approval, annual reporting, and ongoing oversight. For these reasons, it is rarely the best choice.

Pooled Trust

Conclusion

This article is an updated version of one originally published in August 2014 by SNA member Ed Wilcenski of Wilcenski & Pleat, PLLC in Clifton Park, NY, and now-retired SNA member Barbara Hughes.

Question of Capacity

Additional Supports

If the former spouse had been named health care proxy or granted power of attorney over finances and property, such legal documents should be reviewed and updated, as necessary.

Special Needs Trusts (SNTs)

In any case, when the court decides the overall distribution of property, the court may consider the existence of an SNT, the type of SNT, its size, and the sources of its funding.

Effect on Governmental Benefits

There are often questions about the effect of divorce on one’s governmental benefits and whether funds received through public programs must be shared with an ex-spouse. Here’s an overview:

Supplemental Security Income (SSI)

Social Security Disability Insurance (SSDI)

Based on Own Work Record

Based on Deceased Ex-Spouse’s Work Record

Social Security Retirement

Medicare

Must Benefits Be Divided?

When calculating alimony, SSDI payments are considered income, while SSI is not.

Estate Recovery

Your Rights Under the ADA

Types of Communication Support Available

The type of support you'll need depends on your individual communication preferences and abilities, and includes:

American Sign Language (ASL) Interpreters: Since interaction with a law office involves legal matters, any ASL interpreter must have proper endorsement to perform legal interpretation. This specialized training ensures they understand legal terminology and procedures.
Certified Deaf Interpreters (CDI): If you have experienced language deprivation, a CDI may work alongside an ASL interpreter to ensure truly effective communication. You can find qualified CDIs through the Registry of Interpreters for the Deaf database.
Video Remote Interpreting (VRI): While in-person interpretation is generally preferred, VRI can be an option when immediate service is needed, though technical issues can sometimes create challenges.

Planning Your Visit for Success

You can make the process smoother for everyone by taking these steps:

Call Ahead: When you first contact a law office, be specific about your communication needs. This conversation helps the office understand what accommodations to arrange and allows you to schedule when appropriate interpreters are available.
Be Patient With Scheduling: While it might mean waiting a few days for your appointment, this ensures you'll have proper interpretation services rather than struggling with inadequate communication.
Use Alternative Communication When Appropriate: Consider using email for initial inquiries or follow-up questions when it doesn't require real-time discussion. This can save both you and the law office time and money.

“Undue Burden?” Not Likely

Important Billing Information

After you have obtained the basic information, you can develop the Life Care Plan, with details for the following topics:

The Players. The players include the individual with the disability, parents, guardian, trustee, important contacts, involved family members, pets, and friends.
Medical Information. Medical information includes physicians, therapists, specialists, prognosis, medical coverage, treatments, special care, and medical providers. Does the individual have private medical insurance? If so, obtain the insurance card and any other relevant information regarding coverage. Does the individual have Medicare? Does the individual have a Medicare supplement? If so, obtain the card. Does the individual receive Medicaid? A copy of the Medicaid card should always be obtained to verify what Medicaid program the individual is receiving. Does the individual receive dental coverage, vision coverage, and/or prescription drug coverage? Which hospital does the individual use? What pharmacy does the individual use? Obtain a list of all prescription and non-prescription medications. Does the individual suffer from allergies?
Emergency. What instructions should be followed in case of an emergency?
Assistance. What level and type of assistance, if any, does the person need?
Abilities and Disabilities. Does the individual have difficulties or extraordinary powers with any of the following: hearing, seeing, speaking, communicating, walking, standing, coordination, memory, concentrating, or understanding? Does the individual require medical or adaptive equipment or supplies, such as glasses, dentures, braces, hearing aids, a walker or cane, a wheelchair, or a service dog?
Interaction with Others. Does the individual get along with family, friends, authority figures, and strangers? How should any potential exceptions be handled?
Stress. Does the individual have difficulties coping with stress? If so, what is the best way to handle that?
Change. Does change in routine affect the individual? If so, how should this be handled?
Personal Characteristics. What are the personal characteristics of the individual?

What is it like to live with the individual?
What is the person's personality?
What are the person’s preferences, likes, and dislikes?
What activities does the individual enjoy?
Does the person need personal care? If so, for what? Does the individual prefer a male or female attendant?
Does the person need assistance with cooking and eating?

Living Arrangements. Where will the individual live? Independently, in a group home, or with a family member? If a family member, what is the name of the family member? Has this been discussed with the other family members?
Employment. Is the individual capable of working? If so, is the individual employed or unemployed? What professional skills and interests does the person have?
Social Activities. What social activities, hobbies, and forms of entertainment does the individual enjoy?
Transportation. What does the individual do for transportation?
Religion. Does the individual practice a religion or have religious beliefs that must be followed?
Hopes and Dreams. What are the individual’s hopes and dreams?
Capacity. Does the individual have the capacity to sign estate planning documents such as a will, living will, and power of attorney? Alternatively, does the individual need a guardian appointed?
Immediate Cash Needs. Frequently, the individual with disabilities has immediate needs. These might include the purchase of a residence, furniture, a vehicle, a vacation, a computer, an iPad, a cell phone, and repayment of outstanding debt.
Budget. The budget should include monthly housing expenses, cable TV, internet, phone, streaming services, home repairs and maintenance, renter’s insurance, trash and garbage removal, and condominium or co-op fees. Transportation should also be considered, including auto insurance, license and registration, gas, oil, and maintenance. Personal expenses must also be budgeted, including items such as food, household supplies, clothing and shoes, vacations, entertainment, cosmetics, toiletries, sundries, over-the-counter medications, prescription drugs not covered by Medicaid, unreimbursed medical expenses, unreimbursed dental expenses, unreimbursed medical insurance expenses, and unreimbursed caregiver expenses.

1. Communicate Early and Often

2. Set Realistic Expectations

Take some time to assess the expectations you, your loved one, and others may have:

Evaluate your readiness as a caregiver: Reflect on whether you feel comfortable managing travel for your loved one, can adapt to changes as needed, and are ready to accept help when offered.

Get everyone on the same page as you plan your trip, making it clear that certain modifications will be necessary for a successful experience.

3. Plan with Practical Modifications

4. Take Advantage of Travel Accommodations

Using available travel accommodations will make an enormous difference in your travel experience with your loved one.

TSA and the airline can provide you with vital support and reduce travel anxieties by:

Helping your loved one through security and screening
Accommodating mobility limitations when moving through the airport
Understanding your loved one's communication limitations
Guaranteeing you're seated together on flights

5. Maintain Routines While Staying Flexible

6. Enjoy Your Time Away

For more information and resources, be sure to visit Jan at travel-alz.com.

This month’s blog originally appeared in January 2022; however, it continues to be an important and popular topic.

Funding

Private vs. non-profit group home

Understanding the state laws regarding the creation of a small group home may dictate how the home is established, and under what operating rules.

Family connections

Logistics

Conflict

Ideal scenario

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 ) [12] => 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

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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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Crises and Kindness

Public Benefits

Many individuals with disabilities receive critical public benefits. Some of these public benefits are means-tested. These include:

Supplemental Security Income (SSI)
Medicaid
Medicaid Waiver Programs (long-term care)
Federally-Assisted Housing (Section 8 housing)
State Disability Services for Intellectual and Developmental Disabilities

Other public benefits are not means-tested. These include:

Social Security Disability Insurance (SSDI)
Medicare

When Are Funds Considered Received?

When the payment is received,
When the payment is credited to the beneficiary’s account, or
When the payment is set aside for the beneficiary’s use.

Who Is the Intended Beneficiary?

What Are the Options with Respect to Disposing of the Funds Received Through a Fundraiser?

Depending on the amount of money raised and whether the funds are intended for the individual or their family, there are several possible options for using the funds received from the fundraiser.

Funds Intended for Family Members of Person with Disabilities

If it is clear that the funds are raised for the family of a person with disabilities who is receiving means-tested public benefits, the family member can:

Spend the Money. The family member can spend the money on behalf of the individual with disabilities. However, if the individual with the disability is a child under the age of 18 and is living with a parent, the funds received from the fundraiser by the parent are deemed to the child for SSI purposes and may cause a loss of means-tested public benefits. If there is to be a spend-down, it should occur during the month the funds are received to avoid counting it as a resource in the following month. Similarly, to avoid counting the funds as a resource in the following month, the spend-down should also occur during the month the funds are received.
Third Party Special Needs Trust. A family member can establish a Third-Party Special Needs Trust to hold the money and use it for the special needs of the individual with disabilities. The assets in the Third Party Special Needs Trust are not counted as assets for public benefit purposes. Income is not counted if distributed directly to third parties. The advantage of a Third-Party Special Needs Trust, as opposed to a Self-Settled Special Needs Trust, is that the administration is more flexible. Distributions are not limited by the “sole benefit of” rule discussed below, and there is no Medicaid payback on the death of the beneficiary with disabilities. This option only makes sense if the fundraiser is running and generates sufficient funds to cover the costs of establishing and maintaining a trust. Otherwise, the expenses may outweigh the benefit.
ABLE Account. An alternative to a Third-Party Special Needs Trust is an ABLE Account. However, an ABLE Account can only be funded by contributions up to the annual gift tax exclusion each year. This is not a maximum per individual donor, but rather a maximum on total donations. For 2025, the maximum is $19,000.

Funds Raised Directly for the Individual

If the funds are raised directly for an individual with disabilities, the individual has several alternatives:

Self-Settled Special Needs Trust. A Self-Settled Special Needs Trust, also known as a (d)(4)(A) Trust, may be established when donated funds are identified as clearly for the benefit of the individual with a disability. Self-Settled Special Needs Trusts are not as flexible as Third-Party Special Needs Trusts in that distributions are limited for the “sole benefit of” the trust beneficiary, and there is a Medicaid payback upon the death of the beneficiary. Again, the amount at issue should be considered when determining whether the amount in question justifies the set-up and administrative costs of the trust itself.
ABLE Account. Another alternative is to establish an ABLE Account.
Spend Down. The individual may also consider spending the money received in the same month.
Accept the Money. The individual may simply accept the money, but this will cause a loss of means-tested public benefits.
Transfer the Money. Transferring the money to a third party would likely result in a transfer of asset penalty if the beneficiary were receiving SSI or Long-Term Care Medicaid.
Guardianship Account. Another possible option—if permitted under state law—is to place the funds in a guardianship account for the minor or incapacitated person. But this approach has serious drawbacks: the funds are treated as the individual’s own assets, which can cause a loss of means-tested public benefits, and it typically requires court approval, annual reporting, and ongoing oversight. For these reasons, it is rarely the best choice.

Pooled Trust

Conclusion

This article is an updated version of one originally published in August 2014 by SNA member Ed Wilcenski of Wilcenski & Pleat, PLLC in Clifton Park, NY, and now-retired SNA member Barbara Hughes.

Question of Capacity

Additional Supports

If the former spouse had been named health care proxy or granted power of attorney over finances and property, such legal documents should be reviewed and updated, as necessary.

Special Needs Trusts (SNTs)

In any case, when the court decides the overall distribution of property, the court may consider the existence of an SNT, the type of SNT, its size, and the sources of its funding.

Effect on Governmental Benefits

There are often questions about the effect of divorce on one’s governmental benefits and whether funds received through public programs must be shared with an ex-spouse. Here’s an overview:

Supplemental Security Income (SSI)

Social Security Disability Insurance (SSDI)

Based on Own Work Record

Based on Deceased Ex-Spouse’s Work Record

Social Security Retirement

Medicare

Must Benefits Be Divided?

When calculating alimony, SSDI payments are considered income, while SSI is not.

Estate Recovery

Your Rights Under the ADA

Types of Communication Support Available

The type of support you'll need depends on your individual communication preferences and abilities, and includes:

American Sign Language (ASL) Interpreters: Since interaction with a law office involves legal matters, any ASL interpreter must have proper endorsement to perform legal interpretation. This specialized training ensures they understand legal terminology and procedures.
Certified Deaf Interpreters (CDI): If you have experienced language deprivation, a CDI may work alongside an ASL interpreter to ensure truly effective communication. You can find qualified CDIs through the Registry of Interpreters for the Deaf database.
Video Remote Interpreting (VRI): While in-person interpretation is generally preferred, VRI can be an option when immediate service is needed, though technical issues can sometimes create challenges.

Planning Your Visit for Success

You can make the process smoother for everyone by taking these steps:

Call Ahead: When you first contact a law office, be specific about your communication needs. This conversation helps the office understand what accommodations to arrange and allows you to schedule when appropriate interpreters are available.
Be Patient With Scheduling: While it might mean waiting a few days for your appointment, this ensures you'll have proper interpretation services rather than struggling with inadequate communication.
Use Alternative Communication When Appropriate: Consider using email for initial inquiries or follow-up questions when it doesn't require real-time discussion. This can save both you and the law office time and money.

“Undue Burden?” Not Likely

Important Billing Information

After you have obtained the basic information, you can develop the Life Care Plan, with details for the following topics:

The Players. The players include the individual with the disability, parents, guardian, trustee, important contacts, involved family members, pets, and friends.
Medical Information. Medical information includes physicians, therapists, specialists, prognosis, medical coverage, treatments, special care, and medical providers. Does the individual have private medical insurance? If so, obtain the insurance card and any other relevant information regarding coverage. Does the individual have Medicare? Does the individual have a Medicare supplement? If so, obtain the card. Does the individual receive Medicaid? A copy of the Medicaid card should always be obtained to verify what Medicaid program the individual is receiving. Does the individual receive dental coverage, vision coverage, and/or prescription drug coverage? Which hospital does the individual use? What pharmacy does the individual use? Obtain a list of all prescription and non-prescription medications. Does the individual suffer from allergies?
Emergency. What instructions should be followed in case of an emergency?
Assistance. What level and type of assistance, if any, does the person need?
Abilities and Disabilities. Does the individual have difficulties or extraordinary powers with any of the following: hearing, seeing, speaking, communicating, walking, standing, coordination, memory, concentrating, or understanding? Does the individual require medical or adaptive equipment or supplies, such as glasses, dentures, braces, hearing aids, a walker or cane, a wheelchair, or a service dog?
Interaction with Others. Does the individual get along with family, friends, authority figures, and strangers? How should any potential exceptions be handled?
Stress. Does the individual have difficulties coping with stress? If so, what is the best way to handle that?
Change. Does change in routine affect the individual? If so, how should this be handled?
Personal Characteristics. What are the personal characteristics of the individual?

What is it like to live with the individual?
What is the person's personality?
What are the person’s preferences, likes, and dislikes?
What activities does the individual enjoy?
Does the person need personal care? If so, for what? Does the individual prefer a male or female attendant?
Does the person need assistance with cooking and eating?

Living Arrangements. Where will the individual live? Independently, in a group home, or with a family member? If a family member, what is the name of the family member? Has this been discussed with the other family members?
Employment. Is the individual capable of working? If so, is the individual employed or unemployed? What professional skills and interests does the person have?
Social Activities. What social activities, hobbies, and forms of entertainment does the individual enjoy?
Transportation. What does the individual do for transportation?
Religion. Does the individual practice a religion or have religious beliefs that must be followed?
Hopes and Dreams. What are the individual’s hopes and dreams?
Capacity. Does the individual have the capacity to sign estate planning documents such as a will, living will, and power of attorney? Alternatively, does the individual need a guardian appointed?
Immediate Cash Needs. Frequently, the individual with disabilities has immediate needs. These might include the purchase of a residence, furniture, a vehicle, a vacation, a computer, an iPad, a cell phone, and repayment of outstanding debt.
Budget. The budget should include monthly housing expenses, cable TV, internet, phone, streaming services, home repairs and maintenance, renter’s insurance, trash and garbage removal, and condominium or co-op fees. Transportation should also be considered, including auto insurance, license and registration, gas, oil, and maintenance. Personal expenses must also be budgeted, including items such as food, household supplies, clothing and shoes, vacations, entertainment, cosmetics, toiletries, sundries, over-the-counter medications, prescription drugs not covered by Medicaid, unreimbursed medical expenses, unreimbursed dental expenses, unreimbursed medical insurance expenses, and unreimbursed caregiver expenses.

1. Communicate Early and Often

2. Set Realistic Expectations

Take some time to assess the expectations you, your loved one, and others may have:

Evaluate your readiness as a caregiver: Reflect on whether you feel comfortable managing travel for your loved one, can adapt to changes as needed, and are ready to accept help when offered.

Get everyone on the same page as you plan your trip, making it clear that certain modifications will be necessary for a successful experience.

3. Plan with Practical Modifications

4. Take Advantage of Travel Accommodations

Using available travel accommodations will make an enormous difference in your travel experience with your loved one.

TSA and the airline can provide you with vital support and reduce travel anxieties by:

Helping your loved one through security and screening
Accommodating mobility limitations when moving through the airport
Understanding your loved one's communication limitations
Guaranteeing you're seated together on flights

5. Maintain Routines While Staying Flexible

6. Enjoy Your Time Away

For more information and resources, be sure to visit Jan at travel-alz.com.

This month’s blog originally appeared in January 2022; however, it continues to be an important and popular topic.

Funding

Private vs. non-profit group home

Understanding the state laws regarding the creation of a small group home may dictate how the home is established, and under what operating rules.

Family connections

Logistics

Conflict

Ideal scenario

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 ) [12] => 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

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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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Crises and Kindness

Public Benefits

Many individuals with disabilities receive critical public benefits. Some of these public benefits are means-tested. These include:

Supplemental Security Income (SSI)
Medicaid
Medicaid Waiver Programs (long-term care)
Federally-Assisted Housing (Section 8 housing)
State Disability Services for Intellectual and Developmental Disabilities

Other public benefits are not means-tested. These include:

Social Security Disability Insurance (SSDI)
Medicare

When Are Funds Considered Received?

When the payment is received,
When the payment is credited to the beneficiary’s account, or
When the payment is set aside for the beneficiary’s use.

Who Is the Intended Beneficiary?

What Are the Options with Respect to Disposing of the Funds Received Through a Fundraiser?

Depending on the amount of money raised and whether the funds are intended for the individual or their family, there are several possible options for using the funds received from the fundraiser.

Funds Intended for Family Members of Person with Disabilities

If it is clear that the funds are raised for the family of a person with disabilities who is receiving means-tested public benefits, the family member can:

Spend the Money. The family member can spend the money on behalf of the individual with disabilities. However, if the individual with the disability is a child under the age of 18 and is living with a parent, the funds received from the fundraiser by the parent are deemed to the child for SSI purposes and may cause a loss of means-tested public benefits. If there is to be a spend-down, it should occur during the month the funds are received to avoid counting it as a resource in the following month. Similarly, to avoid counting the funds as a resource in the following month, the spend-down should also occur during the month the funds are received.
Third Party Special Needs Trust. A family member can establish a Third-Party Special Needs Trust to hold the money and use it for the special needs of the individual with disabilities. The assets in the Third Party Special Needs Trust are not counted as assets for public benefit purposes. Income is not counted if distributed directly to third parties. The advantage of a Third-Party Special Needs Trust, as opposed to a Self-Settled Special Needs Trust, is that the administration is more flexible. Distributions are not limited by the “sole benefit of” rule discussed below, and there is no Medicaid payback on the death of the beneficiary with disabilities. This option only makes sense if the fundraiser is running and generates sufficient funds to cover the costs of establishing and maintaining a trust. Otherwise, the expenses may outweigh the benefit.
ABLE Account. An alternative to a Third-Party Special Needs Trust is an ABLE Account. However, an ABLE Account can only be funded by contributions up to the annual gift tax exclusion each year. This is not a maximum per individual donor, but rather a maximum on total donations. For 2025, the maximum is $19,000.

Funds Raised Directly for the Individual

If the funds are raised directly for an individual with disabilities, the individual has several alternatives:

Self-Settled Special Needs Trust. A Self-Settled Special Needs Trust, also known as a (d)(4)(A) Trust, may be established when donated funds are identified as clearly for the benefit of the individual with a disability. Self-Settled Special Needs Trusts are not as flexible as Third-Party Special Needs Trusts in that distributions are limited for the “sole benefit of” the trust beneficiary, and there is a Medicaid payback upon the death of the beneficiary. Again, the amount at issue should be considered when determining whether the amount in question justifies the set-up and administrative costs of the trust itself.
ABLE Account. Another alternative is to establish an ABLE Account.
Spend Down. The individual may also consider spending the money received in the same month.
Accept the Money. The individual may simply accept the money, but this will cause a loss of means-tested public benefits.
Transfer the Money. Transferring the money to a third party would likely result in a transfer of asset penalty if the beneficiary were receiving SSI or Long-Term Care Medicaid.
Guardianship Account. Another possible option—if permitted under state law—is to place the funds in a guardianship account for the minor or incapacitated person. But this approach has serious drawbacks: the funds are treated as the individual’s own assets, which can cause a loss of means-tested public benefits, and it typically requires court approval, annual reporting, and ongoing oversight. For these reasons, it is rarely the best choice.