Special Planning for a Child With Special Needs

Anne Tucillo congratulates her son Bryan at a Specal Olympics basketball practice. Bryan's other pursuits include travel and Scouting.
Anne Tucillo congratulates her son Bryan at a Specal Olympics basketball practice. Bryan's other pursuits include travel and Scouting. (Photos By Dayna Smith For The Washington Post)
By Martha M. Hamilton
Sunday, March 25, 2007

When Anne and Robert Tucillo think about retirement, their thoughts immediately turn to their oldest son, 14-year-old Bryan. What will he need, and how will they provide?

Bryan has an incurable metabolic disorder called Leigh syndrome that leads to progressive degeneration of the central nervous system and will need continuing care for the rest of his life. And the Tucillos aren't sure how to provide for both their future and Bryan's.

"As much as we think about the future, we don't know what to do," said Anne.

The Tucillos are one of a large number of families whose planning for retirement takes on a special urgency because of the need to provide for a child who will need extra care for a lifetime. They agreed to talk about their finances and what they fear is their unpreparedness for the future, hoping to help other families in similar situations.

Bryan is physically and developmentally disabled. Sometimes he needs a wheelchair and he requires help with activities such as bathing. But he is also social and engaging, happy to show off his room to a guest and bantering with his mother. The family keeps him involved in as many pursuits as possible, including travel, Special Olympics and Scouting.

Nothing really prepares parents for the job of managing the care of a child with special needs, the Tucillos said. You learn slowly and on the job, picking up tidbits from doctors and other parents. The Tucillos didn't even have a specific diagnosis of what was wrong until Bryan was 4.

They know that many children with similar disorders don't live as long and do as well as Bryan has, but it doesn't make planning any easier. "I don't know whether to plan for the worst or to plan for something in between the worst and the best," said Robert, 51, an official at the Federal Transit Administration.

Currently, Bryan is in a program for students with physical disabilities at Oliver Wendell Holmes Middle School. His parents are trying to figure out the next step, which is high school, but there also are continuing concerns about his health: Bryan had seizure-like episodes that hospitalized him for four days last month.

The Tucillos want to make sure that Bryan's 10-year-old brother, Patrick, isn't overwhelmed in the future by the need to care for his older brother. "I know Patrick would always look after his brother," said Anne, 45, who works at the Education Department. "I know he'll always protect him, but I want him to have a life too."

The Tucillos make about $243,000 combined and have about $500,000 in retirement savings. Robert has a private life insurance policy with a special annuity earmarked for Bryan. They both will have pensions and health-care coverage after they retire. They also have received aid from Virginia's Elderly and Disabled Waiver Program, which pays an attendant to care for Bryan when he gets home from school.

But there is a steady stream of expenses: $6,000 worth of orthodontics work; braces on his legs, which were not fully covered by insurance; $1,500 for an electric scooter that he uses at school; about $600 for speech therapy.

Still, "he's been a gift to our family, as challenging as it is," Anne said.

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