Accessibility Panel

Mary Alice was 29 when she sustained a traumatic brain injury (TBI) after a terrible accident. She was semi-paralyzed on her right side. More than 20 years later, she experienced cognitive and memory problems. Immediately after the injury, her parents assumed power of attorney and arranged for rehabilitation and physical therapy, which continued for more than a decade.

Caring for Mary Alice had become difficult for her aging parents. Mary relearnt to communicate and was able to strengthen her right side. But in recent years, her strength has declined, especially in her legs, and she increasingly relies on a wheelchair. Moving her to a skilled nursing facility an hour away was tough but important. But a facility with round-the-clock care would be the best option for everyone.

Like many parents of dependent adult children, elderly parents have often wondered what will happen to her once we're gone. Medical and legal professionals offer advice to older caregivers.

The time to begin making such choices is before parents or children get older. For families of minors with special needs, conversations about these apprehensions must be done before children turn 18. However, court-appointed guardians, parents, and caregivers lose all decision-making rights regarding another person's financial and health matters once that person reaches the legal age of adulthood.  

Sibling Support

In some families, caring for a helpless adult child becomes the responsibility of a brother or sister. Zach, 22, has epilepsy and cannot be left on his own, so he accompanies his father to the church or his mother to the dance studio where they work.

Zach has tried 28 medications over 15 years. Most recently, the one was legalized by the US Food and Drug Administration for treating partial-onset seizures, but none has controlled his frequent focal-onset impaired-awareness seizures.

As a single mother, Diane Woodward, now 71, looks after Abbie; her 40-year-old daughter, who has epilepsy, has had several TBIs that have caused memory loss. Abbie has frequent grand mal seizures and has sustained repeated head injuries from falls, including one down a full flight of stairs.

Legal Steps

Establishing conservatorship or guardianship is an important first step in securing the future of an adult with special needs. Children have custodians appointed for them when they are younger than 18 and conservators when they are adults. Both terms afford the same rights; they can sign Social Security checks on behalf of the child. 

Financial Problems

Parents should create a special needs trust or make a will so that they can leave property or money and can designate their dependant child as the trustee to manage it. A beneficiary's Social Security and Medicaid aids are conserved regardless of the money in the trust. In contrast, eligibility for such benefits is otherwise limited to those with assets under a certain amount. Many families prefer the flexibility of a conservatorship, which allows full protection of funds.

Residential Options

Aging parents may not be able to continue being active caregivers physically. Also, dependent adult children with neurologic conditions may develop new health concerns as they age, requiring more aid and support. Parents can apply to the Health Department to cover the cost of an assisted living facility for people on Medicaid.

People with epilepsy fall every time they have a seizure. Many caregivers or parents who have injured themselves try to help walk alongside or behind to catch their loved ones. The possibility of physical harm is another reason caregivers need to put plans in place.