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Transitioning to the “real world” is an exciting time for many high school graduates, but it can be an uncertain time for families with disabled children who age-out of support systems they’ve grown up with.
A panel of experts in social services for the disabled met at Berlin High School on Wednesday, May 8 to give some guidance to those who are navigating – or who are preparing to navigate – this potenially fraught time.
Berlin Director of Special Education Linda Holian told attendees that it’s important to start planning for their children’s future as early as possible, noting that many parents in the audience were there for children still in elementary school.
Colleen Masse, a special needs planning attorney with Czepiga Daly Pope & Perri, said “fire drill planning” is best avoided, using the example of a family trying its best to help their child by saving every dollar for them only to have those assets counted against them when applying for benefits.
“They've taken all the holiday gifts and all the birthday gifts and they've got it all in an account because they're saving up for their child. Then their child turns 18 and they've got $10,000 in the bank. They've done such a great job. But they're not eligible for anything because they have $10,000 of assets," she said.
Nancy Ansman, a case manager with the Department of Developmental Services, provided some details on what certain programs require and how the requirements change as a child reaches adulthood.
Drawing on his own experience as a father to a child with down syndrome, Walter Glomb, executive director of the Connecticut Council on Developmental Disabilities, said some of the most important advice he can give a parent is to find experts who can help find little-known programs or fill out time-consuming applications.
Glomb singled out the benefits counselors at the Department of Rehabilitation Services or municipal social services departments as being particularly helpful. “They'll sit at their computer and you give them your name and social security number; they've got you on their screen. In 15 minutes they can do stuff,” he said.
Sydney Elkin, retired probate judge of West Hartford, said the courts can also be a source of guidance, particularly when it comes to issues of guardianship or conservatorship.
Elkin’s said that oftentimes parents are urged to seek conservatorship over a disabled child as they approach adulthood, but stressed that that’s not the answer for every family.
"It's a balancing act. You're trying to do the best you can under certain circumstances. You don't want to leave adult children who have moderate to severe disabilities hanging in the wind," he said.
Another program attendee, Sally Scheyd, said keeping track of changes in the law, and all the programs available and what they require is a job in and of itself.
Scheyd said she was particularly interested in information about the MedConnect program, which allows disabled individuals to qualify for state health insurance benefits while working. “You’re advocating for you child since you find out they have a disability,” she said. “You’re not given the information, you have to seek out the information, which you don’t even know sometimes.”
Glomb said he hoped parents would walk away from the forum feeling inspired to push for greater funding for the programs they learned about.
"The amount in that budget is determined by the legislature. They're working on those numbers right now. The appropriation committee just put out their budgets last week on what they expect to have available for the next year," he said. “There are lots of organizations around who are down at the capitol organizing folks like you ... there's nothing like having you guys at the capitol in appropriations hearings to make the legislators understand that this money needs to be appropriated.”