As parents age, the future of disabled adult children becomes cloudy

Laura DeLong with her parents, all dressed up for a special night out

Photo courtesy of the author


It may seem that life should get easier as you age, but the reality is, there’s just as much need — if not more — for planning and decision-making. This is especially true for the parents of special-needs children. Today, not only are parents living longer, individuals who are developmentally disabled live longer, which means their parents will be caregivers longer. Parents have more to worry about should they become physically unable to look after their adult developmentally disabled child, and more planning to do in the event they pass on before that child.

“I always say there are five major life stages for a family who has a developmentally disabled child. Birth — when they first realize the child has special needs; when they reach school age; adolescence; college or marrying age; and when the parents begin to think about their own deaths,” said Michael Gross, executive director, Heritage Centers. “The last one is the scariest.”

It is the scariest because the parents, who have most likely been the primary caregivers for their children, face giving up total control to strangers. Barbara DeLong, co-chair of the DDAWNY (Developmentally Disabled Alliance of Western New York) Family Committee, and her husband are parents to 21-year-old Laura and are a prime example of this dilemma. Laura functions at the level of a toddler. While DeLong is still reasonably young at age 56, her husband is 68 and not in the best of health.

“New York State has great services for developmentally disabled individuals until they reach age 21, when they age out of the education system,” DeLong says. “We started planning for when Laura reached that age when she was 17 — we knew how long the waiting lists are.”

Several factors have impacted the lives of families with developmentally disabled members. First, following federal guidelines, New York has moved to deinstitutionalize these individuals, which DeLong says is a good thing. The new program is called the “People First Waiver,” and the goal is to meet each individual’s needs and support them in living as independently as possible. Parents of children like Laura, however, find People First is a one-size-fits-all strategy that simply doesn’t work for them.

“Laura is a perfect example. She has multiple disabilities: she doesn’t talk, has a hearing disability and is legally blind; when she was born they told us she would never walk, but she did start walking at age 12; she doesn’t have fine motor skills; and she has a swallowing problem so she can only eat pureed foods and has a feeding tube for supplemental nutrition,” DeLong says. “The goal of People First is to get all special needs individuals into supported housing, but a person like Laura needs care 24/7.”

Secondly, over the last four years the state has cut $350 million for programs that support the developmentally disabled. One side effect of these cuts is there’s also been a virtual moratorium on the building of group homes since 2008. The result of deinstitutionalization and the scarcity of group home beds has led to extremely long wait-lists to get into these homes. In Western New York alone, 1,002 people are waiting to get into a group home, and in the state as a whole, 12,000 individuals are waiting.

“Twenty-five percent of the parents of developmentally disabled children on waiting lists to get into group homes are over age 65,” DeLong says. “Growth in the numbers of autistic children, many of whom do have behavioral problems, is staggering. One out of every 88 children is born with autism.”

There is a great need for parents to start planning early, says Helen Trowbridge Hanes, vice president of Community Living for Aspire of Western New York. Financial planning is a huge part of the picture, since the majority of the developmentally disabled are on Medicaid, which means they can have limited assets. Assets above the legal limits could cause them to lose important services.

“I can’t over-emphasize estate planning,” says Trowbridge Hanes. “We see young men who want to get out and live independently, but they may still need money management guidance, physical or occupational therapy, health care and many other services. Service providers cannot supply that assistance without reimbursement — we’d go out of business.”

Tracy Heringer, Esq., general counsel and legal department director for People Inc., says it is essential parents who have the means set up a Supplemental Needs Trust for their special needs children, and the earlier, the better. Laying everything out — where the child will live, what service providers will be involved, what happens to the child’s assets, is critical.

“If you wait until there’s a crisis it can be terrible. We don’t necessarily have situations sitting waiting for individuals to fill them,” says Rhonda Frederick, chief operating officer of People Inc. “It makes a huge difference for the child who has to make the transition if everything is set out.”

Heringer recommends families work with an attorney who has experience in wills, trusts and estate planning to set up a Supplemental Trust and name a guardian for their child. The recent news story about the 66-yearold woman who was forced to live in a barn by brother and sister-in-law is extremely rare, according to Heringer, because most developmentally disabled individuals are linked to support services at a young age, so the system is aware of them. Guardianship, however, should not be taken lightly.

“Once a year the parent should review the responsibilities and the plan with the prospective guardian to ensure they understand what is involved. Things change over time and both sides need to know that the plan still makes sense,” Heringer says.

Planning and decision-making remain a critical part of life for aging parents of children with any form of special needs: whether the child be developmentally disabled, handling mental health issues, or dealing with any other challenges that affect their ability to live independently.

“We don’t want our children to end up living just anywhere,” DeLong says. “It’s essential we raise awareness about this problem.”

Our society has a moral obligation, Fredericks says, to protect and adequately provide for its most vulnerable populations.

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