Special-needs kids grow up, and then what

Earlier this year, Kathleen Brennan packed her son's belongings, including his DVD collection and World Special Olympics gold medals, into two cars. After four years on a waiting list, Michael, 26, is finally moving from his family's home in Rockville Centre to a group home in Merrick run by the Plainview-based Association for Children with Down syndrome.

Michael Brennan's move was something of a relief for his mother, a retired Nassau County Police detective. After her husband, Timothy, died more than a decade ago, Kathleen Brennan, 62, became her son's sole caregiver.

"It was always the plan to try to get Michael into a group home because, God forbid, something happened to me," Brennan said.

Having a special-needs child creates special challenges for parents as they bridge their later years. Because of medical advances, people with Down syndrome, for instance, are living into their 60s with parents who are in their 80s or older.

In the past, aging parents eventually could count on placing a disabled son or daughter in a group home. These days, parents describe waiting lists that can span a decade for group home placements. Some fear the state's fiscal crisis will lead to the demise of group homes as an alternative to staying with aging parents. They worry, if they are incapacitated, who will take care of their adult son or daughter?

Before Michael Brennan moved to his new home, his mother had taken steps to protect her son's future. She had herself appointed primary guardian so she could make financial and medical decisions for Michael, whom she describes as "high functioning" but an "adolescent in many ways." Kathleen Brennan's 30-year-old daughter, Maura, a special-education teacher in Valley Stream, was named secondary guardian. Brennan also set up a special needs trust fund for her son's financial security.

In his new home, Michael Brennan's housemates are young adults he's known since early childhood through other ACDS programs. His mother says he is exercising daily and taking classes, and hasn't asked to move back home. "He's 10 minutes away, and I see him pretty much every weekend - if he's not too busy to see me," Brennan says.

Some parents are creating their own solutions to the housing shortage for their children with disabilities. Families can set up special needs trust funds with their own money or with insurance policies. Some are even investigating the prohibitively expensive step of joining with like-minded parents to purchase and fund their own private group homes. At the very least, expert say, parents should make sure their wills are beneficial to their disabled children.

Jack Posner, a Dix Hills attorney who is a member of the board of directors of AHRC Nassau, said parents should have a will that prevents their assets from going directly to the disabled child after they die, so the child will not lose his or her government entitlements.

Victor L. LaPoma, 57, of Valley Stream, a financial planner for the Center for Wealth Preservation in Syosset, said that parents should have themselves appointed guardians of their special needs child, starting the process when the child turns 17. Then after he or she turns 18, the guardian has the legal right to make medical, financial and other decisions. Guardianship is recommended if "you have a child who really can't make decisions," LaPoma says.

Yvette Tibbs, 46, of Baldwin, a correction officer in Queens, has a 13-year-old daughter, Tyler, with cerebral palsy. Tyler is an A-student, but because of her physical limitations, she "cannot put on her own clothes, she can't stand up, she can't feed herself," her mother says.

Tibbs' older daughter, Mikiala Powell, 25, who lives in Tampa, Fla., has agreed to care for Tyler if Tibbs is unable to do so. "They are buddies," Tibbs said of her daughters. "But," she acknowledges, "that's a lot to ask of a sibling." As the parent of a special-needs child, Tibbs' main concern is "what are we going to do, so they can be . . . independent, but still have their needs met and be part of the community?"

One option is to set up a so-called special needs trust fund that can be used for travel, entertainment and other expenses beyond government-provided food and shelter, LaPoma says. The trust is established by the parents, either during their lifetime or in their wills. After the disabled person dies, whatever is left in the trust can be distributed to family members, he says.

For many aging parents, giving their children the equivalent of a positive group home experience remains the primary concern.

"A lot of people see the opportunity for their kid to be somewhat independent and be in a family situation as a huge benefit, and don't necessarily want to put that burden on the rest of the family," LaPoma said. However, "Group homes may not exist in the traditional sense anymore." His son, who was born with a cognitive disability, waited nine years before finding a group placement seven years ago.

Posner of the AHRC said that with Long Island's aging population, "there are not enough residential facilities to handle all the people who need housing." He added, "I see that as the wave of the future - where parents will have to band together to acquire a group home."

Some parents are already testing those waters. Jean Gillman, 48, and her husband, Larry, 42, who are business executives and live in Dix Hills, have been talking with other parents in their community about the possibility of setting up a private group home. But they acknowledge the cost could be astronomical, in the "tens of millions of dollars." After they die, they want their daughter, Alexandra, 11, who has autism, to have "a place that allows her to grow and have her little niche in life," Jean Gillman says.

For now, haunting questions linger. "What keeps me up at night is not having something proper in place," she says. "When I'm not here, who's going to possibly take care of her, who's going to love her, see her on her birthday? Who's going to know that she loves swimming?"