Caregiving

Katie Beckett Waiver Brings Home Care to Kids with Serious Disabilities

By Tara Anne Pleat, Esq. In many states, the Medicaid program can generally be seen as having a strong institutional bias when it comes to coverage of long-term care, forcing many families to place loved ones in skilled care facilities or similar institutional settings, despite longstanding efforts to serve individuals with disabilities in mainstream settings. [...]

2024-12-09T12:39:06-05:00

Celebrating the Holidays When a Child Has Special Needs

By Jo-Anne Herina Jeffreys, Esq. Holiday crowds, twinkling lights and unfamiliar scents can confuse and even frighten a child with disabilities. The season’s disruptions can be particularly painful for those who don’t handle change well. But with a little planning, you can contain the stress. Prepare Your Child Preparing your child in advance by revisiting [...]

2024-12-10T08:48:59-05:00

Glut1 Deficiency Syndrome: A Little-Understood Disability

By Emma Hemness, CELA Before representing the Special Needs Alliance (SNA) at the Glut1 Deficiency Syndrome Foundation's annual conference in Orlando, I knew very little about the disease being discussed. Unfortunately, my lack of awareness wasn't unusual. According to the National Institutes of Health, since first identified in 1991, only a few hundred cases of [...]

2024-12-10T09:17:27-05:00

Back-to-School Tips for Children with Special Needs

By Tara Anne Pleat, Esq. As a new school year approaches, nerves often take center stage for many families who have children with special needs. Parents and children alike worry about teachers, the other children, homework, lunchtime and much, much more. Get Ahead of the Curve Before classes begin make arrangements to take your child [...]

2024-12-10T09:27:16-05:00

Making the Most of Summer Vacation

Who doesn't love summer vacation? But when a child has special needs, all that free time brings challenges. Youngsters who thrive on routine can find schedule changes disorienting. Some may become socially isolated without classes to attend. And, of course, if their life skills and academic work aren't being consistently reinforced, months of hard-won progress [...]

2024-12-10T09:39:41-05:00

Medicare Observation Status: Denying Medicare Coverage for Skilled Nursing Home Care

There is an increasing trend to admit Medicare beneficiaries for "observation" as outpatients rather than admitting them as regular hospital patients. This practice may prevent patients from obtaining proper inpatient and post-hospital care under Medicare. Since many individuals with disabilities depend on Medicare as their primary health insurance coverage, this practice can have a serious [...]

2024-12-12T11:24:38-05:00

Child Support for an Adult Child with Disabilities

The Voice is the email newsletter of The Special Needs Alliance. This installment was written by Special Needs Alliance member Craig C. Reaves, CELA of Reaves Law Firm, PC. in Kansas City, Missouri. Holding the CELA (Certified Elder Law Attorney) designation from the National Elder Law Foundation, he is a Past President and Fellow of the National Academy of Elder Law Attorneys and a Fellow of the American College of Trust & Estate Counsel (ACTEC). He is listed in Best Lawyers in America and has been designated as a Missouri Super Lawyer. Mr. Reaves is an adjunct professor of elder law at the law schools of the University of Kansas and the University of Missouri-Kansas City. He practices law in Kansas and Missouri with major emphasis in the areas of estate planning, elder law, special needs trusts, and planning for persons who have a disability.

Through a Parent’s Lens

When a Child Has Special Needs By Mary Schmitt T. Smith, Esq. As a special needs attorney and a Mom of two adult sons with disabilities, I bring an added dimension of experiencing reality "in the trenches" to my work with clients. Yes, I know how it feels to receive a diagnosis you never anticipated [...]

2024-12-10T10:37:14-05:00

Choosing the Right Nursing Home

By Martha C. Brown, CELA When a loved one of any age requires the round-the-clock care of a nursing home, it’s important to select one that fulfills both their medical and social needs. Each facility has its own culture, and since this will be your family member’s home, the environment should be a welcoming fit. [...]

2024-12-10T11:15:45-05:00

Care Managers Can Reduce Family Pressures

By Franchelle C. Millender, CELA Working with a care manager can significantly lower family stress, providing reassurance that the right steps are being taken to ensure a loved one's quality of life. Care managers are often trained nurses, psychologists or social workers, and their familiarity with local services and supports can provide invaluable assistance to [...]

2024-12-10T11:17:21-05:00

Home Care for Alzheimer’s

By Ruth Courtney, Richard A. Courtney, CELA, & Morris Klein, CELA In the U.S., 70 percent of those diagnosed with Alzheimer's are cared for at home, creating a stressful balancing act for family members. Care needs differ dramatically, shaped by the course of the loved one's disease, as Alzheimer's affects people differently. The caregiver's personal [...]

2024-05-13T15:41:05-04:00

Caregiving in a Digital World

By Professor Naomi Cahn, Harold H. Greene Professor of Law, George Washington University Law School, & Rev. Amy Ziettlow, Affiliate Scholar with the Institute for American Values You've heard all of the advice about backing up your computer regularly, making sure that you have your passwords stored in a safe place, protecting yourself against digital [...]

2024-05-09T15:47:52-04:00

Caregiver Burnout Hurts the Entire Family

By Heather Nadler, CELA, Tucker, GA Caregiver burnout is a destructive syndrome. Individuals become so involved with the ongoing needs of a loved one with disabilities that they neglect their own well-being. By placing unreasonable and unrelenting demands on themselves, they descend into a state of emotional and physical exhaustion. Their complete focus on the [...]

2024-05-09T15:42:45-04:00

Caregiver Agreements Can Clarify Family Roles

By Leonard F. Berg, CELA Paying a relative for care of a frail parent or of an adult child or sibling with disabilities is an option that sometimes solves a variety of problems. "Caregiver agreements" can enable an individual with special needs to remain living within the community at the same time that it provides [...]

2024-05-09T15:37:43-04:00

Alzheimer’s Alters Family Roles

By Leonard F. Berg, CELA Alzheimer's is a disease that affects the entire family in major ways, but given that its onset is often gradual, there are opportunities to make adjustments that may reduce the turmoil. The early stages, before severe dementia intervenes, are a time to understand your loved one's wishes and to begin [...]

2024-05-09T15:31:18-04:00

What Makes Autism so Uniquely Stressful?

By Michelle DePolo, Psy.D., Pediatric Psychologist, KidsLink Neurobehavioral Center It has been well established that parents of children with autism experience greater stress than parents of children with other developmental disabilities. Whether it is trying to determine what your child is attempting to communicate, managing self-injurious behaviors, or creating a daily structure and routine that [...]

2024-05-09T15:19:47-04:00

The Letter of Intent: Advice for the Future Team

By Brian Rubin, Esq., Attorney and Parent of a 31-Year-Old Son with Autism A letter of intent (LOI), also referred to as a letter of guidance, is a roadmap for your child's "Future Team," the future trustees, guardians, and caregivers (both family and professional service providers). No one knows and understands your child as you [...]

2024-05-07T14:39:45-04:00

CLASS Act’s Demise Underscores Long-Term Care Crisis

By Joseph R. Gilsoul, Esq. A crisis looms concerning long-term care for individuals with disabilities. Very soon large numbers of baby boomers will begin to develop arthritis, Alzheimer's and other conditions requiring them to seek assistance with basic daily tasks. A potential first step towards addressing this problem—CLASS (Community Living Assistance Services and Supports)—is unlikely [...]

2022-04-14T10:25:15-04:00