Advocating for disabled never ceases

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Tracey Drury

Buffalo Business First Reporter- Buffalo Business First

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Families and caregivers for individuals with disabilities are tired of waiting for residential and program opportunities for their children.

They worry about what their kids will do when they finish high school. Most of all, parents worry about what will happen when they're gone and someone else has to advocate for the adult children with disabilities.

Hundreds of family members gathered Friday morning at the Millennium Hotel for a legislative breakfast with state and federal elected officials and their representatives to tell their stories and keep those issues top of mind. It was the fourth annual event sponsored by the Developmental Disabilities Alliance of WNY.

"Life gets harder. We get older, and our kids get stronger," said Barbara DeLong, co-chair of the DDAWNY family committee.

DeLong gave an overview of some of the issues facing families: 12,000 individuals with disabilities on a waiting list across New York for residential placement, including more than 1,000 in Western New York; 50,000 caregivers over the age of 60; 3,150 students in Western New York and the Finger Lakes who will graduate in the next three years who will need options for day programs.

Karen Schunk attended the event with two other parents, all of whose sons attend the St. Mary's School for the Deaf and will be among those graduates in the coming years. While they're in school, they receive tons of services, but that all changes after they turn 21 and have to find a job in the community. Schunk, whose son has multiple disabilities, is anxious.

"We're gathering information, trying to navigate the system and see what is available for our sons," she said. "There aren't many opportunities out there."

Tracey Drury covers health/medical, nonprofits and insurance