Families struggling to care for adult children, siblings with disabilities push for more state help

The wait list to get into a program that helps adults with disabilities is in the thousands across the state.

“It was hard to be at home,” Avery Bergian said. Avery is 25-years-old and knows what it’s like to age out of the school system and suddenly be without all of the support she needs.

It’s a crisis many families face when their loved ones with disabilities turn 22-years-old.

“Families can’t care for their sons or daughters themselves anymore and providers haven’t been able to build up enough new programs to meet the needs,” Chris White, the CEO of Road to Responsibility, explained.

For families who desperately want to see their sons, daughters, or siblings cared for in a program like Road to Responsibility, they can’t get there until they are approved by the state first.

“They take me out places. We go bowling. We go to the mall. We go on community walks. We go to work,” Avery Berigan said about the day program.

Families need to enter the state system first through the Department of Developmental Services. From there they must be approved as eligible, and then they are sorted and placed by priority.

That is where White says families get stuck waiting in dire situations.

“The needs range from you know we’ve got a young son with autism who we don’t know what to do with, he can’t stay in the house to they have a son or daughter in their 50s and 60s and the parents are now in their 80s or 90s they can’t meet their needs,” he said.

State Senator Patrick O’Connor tells Boston 25 News he can see that the system is strained.

“It really starts with as a state, in my opinion, we’ve taken people for granted who work in human services. I always say, if you have a child or sibling with disabilities or you have a family member who gets a traumatic brain injury, you know what would you value the worth of their care? it’s at least at the minimum a livable wage,” he explained.

While he continues the push for the legislation that would provide human services workers with better salaries and benefits, he wants families to know they are being heard and it’s understood time is of the essence.

“...a lot of individuals are getting older, and their families are getting older, and it’s a concern of what happens when they’re gone and know that we are working on that,” he said.

Lawmakers behind the legislation believe it’s about creating a pipeline, and more workers would provide more programs for the families in need.

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