In a seventh-floor bank office, Ray Brennan talked about his biggest fear: dying without knowing who will care for his two adult children.
Brennan’s son, Ray Jr., is 46 and his daughter, Casey, is 37. Both are developmentally disabled. Both will probably live long after he and his wife Kelly are gone.
It used to be children with intellectual and developmental disabilities preceded their parents in death. That is no longer the case. Laws have been enacted to guarantee their rights to public education and timely state care and experts say better health care has extended their lives far beyond what doctors thought possible.
“At the same time people born between 1946 and 1964 are entering retirement age, their developmentally disabled children are also living longer and, in many cases, long after they are gone,” said Richard Hemp, senior research assistant and coordinator for the State of States Developmental Disabilities Project at the University of Colorado. “It’s a growing problem.”
And so while most parents expect that their children will outlive them, Brennan, 71, of Stone Mountain, is part of a generation of retirees for whom longevity is the greatest concern.
“The biggest fear is not knowing who will care for them when you’re not there to do it,” Brennan said. “You don’t want to leave your kids at the mercy of God-knows-what.”
According to Hemp, more than 852,000 adults with disabilities were living with caregivers over the age of 60 in the United States in 2011, the last year for which statistics are available.
In Georgia, roughly 21,927 adults have developmental disabilities. About 50 percent live in metro Atlanta.
The Brennans never believed their son or daughter would reach adulthood because that’s what doctors told them. Now that they have, they worry what will become of them when the inevitable happens.
Brennan said that he and his wife drew up wills 20 years ago but it wasn’t until the death of a friend and his wife, who also had a developmentally disabled son, that they took the next step and established a trust.
“That lit a fire under me,” Brennan said.
It would take nearly five years, however, for him to research and find the right person to help put in place a Special Needs Trust for his children, who have no siblings or surviving relatives.
Bill Frazier, a senior vice president in charge of the Special Needs Trust Group at SunTrust Bank, said of the 1,300 families his team works with each year, Ray Brennan is “ahead of the curve in terms of his knowledge.”
“He’s a different breed,” Frazier said.
The purpose of a Special Needs Trust, Frazier said, includes providing for children after the death of their parents and to preserve their eligibility for public resources such as Medicaid and Supplemental Security Income.
Parents of children with developmental disabilities should seek help from an attorney specializing in elder care and special needs law as early as possible, Frazier said. He said any plan should consider covering every aspect of the child’s life, including where they will live, finances, social and family interactions, guardianship, hobbies and special interests.
“It’s never too early to start planning. The sooner, the better because it’s complicated,” Frazier said. “It’s not a quick solution that can get resolved in a month. There are a number of professionals that may need to become involved in the planning process and taking the time to do things correctly is very important.”
While there is a full spectrum of people who do not fall into any one category, Brennan said most can be categorized this way: they have “Peter Pan” syndrome.
“They never grow up,” he said. “You’re going to have to care for somebody for the rest of their life, not the rest of your life. It’s that simple.”
The mistake parents often make is thinking that there will always be time to plan and not fully understanding what challenges and resources exist for the child, Frazier said.
Even so, this isn’t just a problem for parents, said Eric Jacobson, executive director of the Georgia Council On Developmental Disabilities.
“As the parents pass away or are no longer able to care for the adults in their families, we have to decide as a society do we provide supports and services,” he said. “If people don’t have other family members to care for them — and many won’t — it will be very costly to taxpayers. Better to do the right thing now then wait until there is a crisis.”
Jacobson said parents should begin now contacting their local benefits office and apply for a Medicaid waiver or Family Support Services.
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