Mary Alice Banuelos was 29 when she sustained a traumatic brain injury (TBI) after a tragic accident. She was partially paralyzed on her right side and to this day, more than 20 years later, experiences cognitive and memory problems.

Immediately after the injury, Mary Alice's mother, Mary, and stepfather, Harold Deem, assumed power of attorney and arranged for rehabilitation and physical therapy, which continued for more than 10 years. During that time Mary Alice had to relearn to talk (and is still difficult to understand) and was able to strengthen her right side. But in the past few years her strength has declined, especially in her legs, and she increasingly relies on a wheelchair.

Caring for Mary Alice has become difficult for Mary, 76, and Harold, 84. Moving Mary Alice, now 52, from their one-story ranch home in Calimesa, CA, to a skilled nursing facility an hour away was a tough but important decision. “We knew a facility with round-the-clock care would be the best option for everyone,” says Mary, who notes that her daughter's care is covered by California's Medicaid program.

Like many parents of dependent adult children, the Deems have always worried about Mary Alice's future. “We've often wondered what will happen to her once we're gone,” says Mary.

The number of aging parents caring for dependent adult children continues to rise, says Jacqueline French, MD, FAAN, professor of neurology and co-director of epilepsy clinical trials at the NYU Grossman School of Medicine in New York City. “Older caregivers have to contend with many difficult legal and emotional decisions about the futures of their dependent adult children.”

The time to begin making such decisions is before parents or children get older. For families of minors with special needs, Dr. French initiates conversations about these concerns before the children turn 18. Unless they are court-appointed guardians, parents and caregivers lose all rights to make decisions regarding another person's health and financial matters once that person reaches the legal age of adulthood. “If families aren't prepared for this milestone, there may be many negative repercussions for everyone, and caregivers may become powerless overnight.”

The earlier the better, says Seth Keller, MD, a neurologist in Voorhees, NJ. “You want to avoid putting support in place during a crisis,” he says. “There have been situations where a parent dies suddenly, and the remaining family members scramble to figure out how to help the dependent person.”

Sibling Support

In some families, caring for a dependent adult child becomes the responsibility of a brother or sister. That's what Kim and Joey Scruggs of Columbia, TN, both in their early 50s, have planned for their son Zach, 22, who has epilepsy and cannot be left on his own. Each morning, Zach accompanies either his mother to the dance studio where she works or his father to the church where he is one of the pastors.

Over the past 15 years, Zach has tried 28 medications—including the most recent one, which was approved by the US Food and Drug Administration in November 2019 for treating partial-onset seizures—but none has controlled his frequent focal-onset impaired-awareness seizures.

Kim's and Joey's wills designate Zach's twin brother, Seth, as Zach's caretaker, with his sister, Mollie, as the backup. Zach's two cousins also have agreed to step in and take care of Zach if anything should happen to his parents and siblings. “It would be a rare situation if something happened to all of us, but you have to plan for everything,” says Kim.

Beverly Nance, 59, of Stockbridge, GA, has fewer options for her 28-year-old daughter, Tylar, who has autism and frequent seizures and is intellectually disabled. Tylar needs assistance with dressing, bathing, and cooking. Nance's son, who lives with them, is very close to Tylar and promises to care for his younger sister. “I do worry that when my son wants to have his own family, his wife might not feel the same way he does about taking care of Tylar.” The family has no regular respite care, except for a few times each year when Tylar spends a weekend with other people with her condition under the supervision of health aides.

As a single mother, Diane Woodward raised four children in Shawnee, KS. Now 71, Woodward cares for Abbie, her 40-year-old daughter who has epilepsy and has had several TBIs, causing memory loss. Abbie has frequent generalized tonic-clonic seizures (also known as grand mal), and has sustained repeated head injuries from falls, including one down a full flight of stairs.

Several months ago, one of Woodward's other daughters said she would be willing to become Abbie's conservator. “I just cried and cried because none of my kids until then were at the point where they could agree to take on so much responsibility,” says Woodward. “I updated my will to make it official that my daughter will be a standby conservator.”

Legal Steps

Establishing guardianship or conservatorship is an important first step in securing the future of an adult with special needs, says Ann Tilton, MD, FAAN, a child neurologist at Children's Hospital New Orleans.

About six months before Zach turned 18, his parents started working with attorney Chaz Molder to become Zach's conservators, which would allow them to make all health and financial decisions for him. Molder specializes in cases of this type and consults with the King's Daughters Day School of Columbia, TN—a private school for children with intellectual and developmental disabilities that also runs a residential home for people 40 and older.

Setting up a conservatorship can cost from $1,000 to $2,500, depending on where a family lives, according to Molder. For families who cannot afford the legal fees, he recommends contacting the state's legal aid office.

In general, children have guardians appointed for them when they are younger than 18 and conservators when they are adults. Both terms afford the same rights. For example, guardians and conservators can sign Social Security checks on behalf of the child. “There's sometimes confusion over the terms because states will intermingle the words and refer to a guardianship when it's really a conservatorship,” says Molder. “It's important to talk to an attorney about the laws that apply in your state.”

Financial Concerns

All parents should have wills, especially if they have dependent children, advises Molder. Nance plans to leaves her assets to both her children, with her son as executor; her son also would be Tylar's conservator in the event of Beverly's death or disability.

Nance may establish a special needs trust in the future, which would allow her to leave money or property to Tylar and designate her son as the trustee to manage it. Kim and Joey Scruggs are also considering setting up such a trust for Zach. “We always thought the word trust was synonymous with wealthy, but we've learned that a special needs trust is very different from a trust fund,” says Kim.

With this kind of trust, a beneficiary's Social Security and Medicaid benefits are preserved regardless of the money in the trust, whereas eligibility for such benefits is otherwise restricted to those with assets under a certain amount. (In 2021, the limit was $1,320 a month.)

When a conservatorship is in place, a will might be all that's needed to provide for the person with special needs, says Molder. “Special needs trusts are options, but control of the funds is restricted to the trustee. A lot of families like the flexibility of a conservatorship, which allows full protection of funds.”

Residential Options

As parents get older, they may not be physically able to continue being active caregivers, says Dr. Tilton. “In addition, dependent adult children with neurologic conditions may develop new health problems as they age and require more aid and support.”

Until a few years ago, Harold Deem could assist his stepdaughter Mary Alice if she fell. “He could lift her back into her chair, but now that he is in his eighties, he can't do that anymore,” says his wife, Mary.

People with epilepsy might fall every time they have a seizure, says Dr. French. “Maybe their parents or caregivers walk alongside or behind to catch them. I know many caregivers who have injured themselves trying to help their loved ones,” she says. “The potential for physical harm is yet another reason why caregivers need to put plans in place.”

Parents may want to consider a group home for their dependent child. Although group homes vary in quality, they typically house about six residents, with at least one trained caregiver on the premises 24 hours a day. In some homes, all residents have the same medical condition; local agencies of United Cerebral Palsy, for example, maintain group homes for people with cerebral palsy.

Tylar Nance is on a waiting list for a home that specializes in autism care. Her mother learned about group homes after volunteering at a community organization. “Seeing these homes firsthand changed my mind,” says Nance. “I thought they were going to be more like hospitals, but they are nothing like that.” She visited more than a dozen group homes throughout the Atlanta metro area. “If Tylar gets chosen, I will probably move her there so she doesn't miss this opportunity.”

Dr. French encourages parents to consider homes as early as possible. “It's a lot easier to transition a dependent adult child to a group home when the parents or caregivers are still alive,” she says. “It's always much tougher when the patient moves there after losing a parent.”

But not everyone is eligible for a group home, as the Scruggs family discovered when they explored alternative housing for Zach. “The group homes in Tennessee said that residents need to be able to live on their own and require help with only certain things,” Kim says. “Zach can take care of his basic needs, but he needs constant supervision to ensure that he doesn't harm himself or others during a seizure.”

Mary Alice Banuelos is currently in a nursing facility due to various health problems, but her parents have applied for a waiver from the California Department of Health Care Services that covers the cost of an assisted living facility for people on Medicaid. Mary Deem is hopeful that her daughter will move to a facility focused on people who have sustained TBIs. “There are some wonderful TBI programs out there, and I think Mary Alice would relate better to the other residents,” she says.

Although Diane Woodward has considered group homes and nursing facilities, she made arrangements for her daughter Abbie to remain in her childhood home, with supervision and help from another family member. “I honestly don't know how Abbie will survive without me,” she says, “but I've done everything I can to plan for all types of situations to make sure she has the best life possible after I'm gone.”

Resources for Late-Life Caregiving

• AARP: AARP.org; 888-687-2277
• Caregiver Action Network: caregiveraction.org; 855-227-3640
• Family Caregiver Alliance: caregiver.org; 800-445-8106
• Legal Aid: usa.gov; 844-872-4681
• Social Security Disability: ssa.gov; 800-772-1213