Worcester Parents of Disabled Kids Face Hardship After State Funding Cuts

Wednesday, February 20, 2013

Adrianne Appel, GoLocalWorcester Contributor

A growing number of Worcester area parents are quitting their jobs to care for their intellectually disabled young adult children, because the state has failed to fund needed programs, advocates say.

Developmentally disabled young people in Massachusetts are eligible for special education services through the age of 21. Adult services, like job training, day programs or residential care are supposed to kick in when they turn 22.

Not enough funds to meet rising needs

But for about six years in a row, the legislature has not appropriated enough funds for all of the 700 or so people with disabilities who turn 22 each year and the waiting list has ballooned, Leo V. Sarkissian, Executive Director of ARC of Massachusetts said.

More than 100 Worcester families are without these services, Sarkissian said.

“When the parents are working it can be a really difficult situation. The individual may be stuck at home if they can handle it and if they can’t be on their own the family is scrambling,” Sarkissian said.

Some are elder parents are worried about what will happen when they can no longer care for their adult disabled child.

“Statewide there are a minimum of 1,000 people from their 20’s through their 50’s, who need services,” Sarkissian said.

A difficult transition

The transition from school to job or independent living is an exciting time for young adults and no less so for people with intellectual disabilities eager to work and face new challenges.

People who are able and eager to work or live in a supported apartment are not getting those services, said Cindy Howard, director of administrative services for the Center of Hope Foundation, in Southbridge, which focuses on job training.

“Many folks are sitting at home and should be working toward getting jobs and going to some type of program during the day. They may need staff support to help them be in a day program,” Howard said.

Parents with children who can’t be left alone must quit their jobs or somehow find care for their adult child, she said.

The past few years, of the 700 22-year-olds in need of services, the state has given priority to the 200 people who require residential care. Of the 500 remaining, the state has provided services for about 250. The same families tend to get re-funded in subsequent years while others continue to go without.

“Turning 22, that’s your chance for funding. If you don’t get it then, that’s it,” Sarkissian said.

Families can later apply for emergency services, if for example, a parent dies and someone is left without a caregiver.

“It basically is a triage situation,” he said. The funds go to the most needy families, he said.

The legislature may have been caught off guard by the increase in those needing services.

“In the 1990’s we had 400 or 500 people graduating each year who needed services. Now it’s over 700 each year,” Sarkissian said.

The baby boom, rising autism rates and longer life spans of people with disabilities are the reason for the higher number today, Sarkissian said.

“We need enough funding for these people to get the support they need,’’ he said.

Rep. O'Day pushing for more funding

Next year’s budget process has already begun. Gov. Deval Patrick has proposed $6 million for adult services, enough to provide for those who received assistance them last year, but not enough for all those who need help, Sarkissian said.

Rep. James O’Day, of West Boylston, has filed a bill to provide $23 million in services to adults.

“We want to provide more services and end a continuing wait list,” O’Day said.

A bill he filed last year died in the Ways and Means Committee, chaired by Sen. Stephen Brewer, of Barre.

“We care deeply,” Brewer said. “We’ve tried to help the turning 22 population and will continue to do that,” he said.

“I’m charged with the creation of a budget of $32 billion dollars. There are a lot of pressing needs. I have to look at the budget in its entirety,” Brewer said.