In October, Sharon and Carl Simonin were already making plans for their son Austin’s Dec. 18 birthday. He would turn 22 that day, a huge birthday in the life of an autistic special education student who is about to leave the Martha’s Vineyard public school system and become part of a much larger system — the Massachusetts Department of Developmental Services.
Carl and Sharon met with Austin’s DDS service coordinator, who travels to the Vineyard when necessary from the DDS office in Hyannis. They were confident that Austin would receive the DDS funding they applied for. They would then hire a support person to accompany Austin to a volunteer job at the Oak Bluffs library and to Thimble Farm. Both sites and tasks had been fleshed out while Austin was in the regional high school’s special education transition class. His teacher, Laura DeBettencourt, and the support staff helped prepare him, setting up Austin for his new adult life in the Island community.
A budget shortfall
Across the state, an estimated 950 young adults with disabilities will transition to adult services this fiscal year. Here on the Vineyard, four young people with disabilities are turning 22. Right now there is no money in the DDS budget to help them. In November, just a few weeks after they had their meeting, the Simonins were told by Austin’s DDS service coordinator that, unfortunately, DDS had no funding to support Austin’s goals; they could not provide services that he was eligible to receive.
The Simonins were devastated. They had advertised in the newspaper to find someone who would support their son throughout his day, and they thought they had found the right match. Instead they had to call her and explain that they could only afford to pay her for a few weeks. Without the financial support for adult services through the DDS, the Simonins would have to foot the bill themselves.
Sharon has worked at the Martha’s Vineyard Savings Bank for years, and Carl is a self-employed drywaller. They had wanted to put a plan in place that would ensure Austin would have a full and meaningful life, with work in the community alongside his peers. Instead, they found themselves scrambling at the last minute, taking time off from work and arranging for Sharon’s 78-year-old mother to stay with Austin when she’s needed. They decided Carl would take two days a week out of his work schedule to accompany Austin to the library and to Thimble Farm.
“We want Austin to be happy,” Sharon said. “We want him to have a good life. He doesn’t like to stay home, and he doesn’t like to be still. He likes to take walks, and wants to work at the library and the farm.”
Austin is the first student in the high school’s transition class to age out this school year. There are three more students coming up right behind him. By March 1, there will be no students in the transition class, because they will all have turned 22. And they are all eligible for DDS adult services to support them as they embark on a new phase in their lives, services that are currently not available to them because of the state budget’s shortfall.
“Austin qualifies for these services, and he ought to be able to access them,” Carl said.
For the past couple of years, Austin and his classmates, including my son Dan, have worked to gain independence and take an active role in their community once they leave the school system. In search of possible employment or volunteer opportunities, they have spent time at the FARM Institute, the animal shelter, the food pantry, Phil Hughes’ Wheel Happy bicycle shop, Island Grown Initiative’s Thimble Farm, and the Big Dipper ice cream shop.
Dan was lucky; his 22nd birthday was May 27, falling within the previous fiscal year. That year there was enough funding to support Dan’s plan to keep working at Thimble Farm and Wheel Happy. With his support person, Devin Araujo, Dan goes to the YMCA, hikes the Vineyard trails, and works all week at Thimble Farm, growing vegetables and taking pride in his work. He is valued as an important member of the staff. Dan volunteers at the high school; he supplies athletic teams with water and equipment, which keeps him connected with his friends there. Without DDS funding to pay for his supports, Dan, who is also autistic, would likely be spending a lot of time pacing the floor at home and saying, “Wanna take a ride in Mom’s car,” one of his go-to sentences.
My husband and I both work from home, except for my part-time job at the West Tisbury library. This means we can be flexible, but if we didn’t have DDS support to hire Devin, we would both be working well into the night so that we could spend our daytime hours caring for Dan.
Restoring the budget
The commonwealth’s website states: “Chapter 688 (better known as the ‘Turning 22’ law) was enacted in 1984 to provide a planning process for young adults with severe disabilities as they leave special education and transition into the adult service system.”
The fiscal year in the commonwealth is always named for the year in which it ends. According to The Arc of Massachusetts, a nonprofit organization that advocates for people with intellectual and developmental disabilities, the fiscal year 2008 state budget — put in place before the great recession — included $7.7 million for Turning 22, with 600 students transitioning out of high school. Fiscal year 2016 included $7 million in funding for an estimated 900 students.
The budget of fiscal year 2017 allocates $7.5 million to Turning 22, which was supposed to be enough to support the approximately 950 students who will require adult services.
“State revenues are not anywhere near what they were expected to be,” said Maura Sullivan, director of government affairs at the Arc, “and most of the cutbacks seem to be in social services.”
She said that when DDS funding falls short, sometimes a supplemental budget can be put in place, addressing at least some of the shortfall. A combined shortfall of Turning 22 and DDS employment and day funding means a supplemental budget of $15 million is needed this year, according to Ms. Sullivan. Day and employment funds are lumped together in a budget line item, and affect all adults with developmental disabilities, not just those turning 22. Some adults may require full-day support, and others may require employment support, or they may require a combination of both, Ms. Sullivan explained. She said that the Arc is advocating for $22 million to cover all the services for students graduating next year. Ms. Sullivan also said that there is no autism-specific federal funding that supports adults with autism in the commonwealth.
“It really is a system based on the individual’s needs, with supports all over the place,” she said. “It’s cobbled together by parents and support professionals.”
Regarding the possibility of more DDS funding to help the Simonins face their current challenges, Ms. Sullivan remains optimistic.
“We’re hoping they find the funding,” Ms. Sullivan said. “We’re trying to hang tight; we’re working closely with DDS, and we’re still hopeful.”
Frustrating and heartbreaking
The budget situation is frustrating for families who are not receiving funding, or who will not receive the amount they had expected. They will likely have to put plans on hold and explain to their adult children with autism or other disabilities that what they have been working toward for the past two years is not going to happen, at least not right away.
For special education teacher Laura DeBettencourt, the lack of funding for her students transitioning into adult services is “heartbreaking.”
She said her role as an educator is to prepare young adults with disabilities for life after school.
“These are quite possibly the hardest-working students at the high school,” Ms. DeBettencourt said. “They learn safety skills, communication skills, vocational skills, all the while learning about problem-solving, regulating behavior, and learning to live as independently as possible.”
The students also work on cooking, cleaning, grocery shopping, riding the bus, and developing a schedule. Opportunities for inclusion and recreation within the community are also part of their day, according to Ms. DeBettencourt.
“The thought of not having support for these young adults at age 22 is unimaginable,” she said. “They deserve to have the same opportunities given anyone else. For these amazing young people to not have continued instruction, guidance, support, and friendship goes against everything they have worked so hard for. I’m heartbroken for these students and their families.”
According to Victor Hernandez, who works in the communications department of the DDS in Boston, as of Austin’s Dec. 18 birthday, “there is funding to meet the needs of individuals who are turning 22.”
Mr. Hernandez wrote in an email that there are efforts underway to “ensure that clients are served, and that the families who rely on the program will be served.”
Ms. Sullivan remains hopeful. “The sense from advocacy organizations, including the Arc, is that DDS and our legislature are making good-faith efforts to deliver funds as well as a supplemental budget for Turning 22,” she said.
The Simonins met with their DDS service provider last week. They hoped the tide would have turned and there would be some support for Austin. They were told the funding is still not in place, but that there may be some funds available mid-January.
“We’re hoping and waiting to see what happens,” Sharon said. “We were counting on help from DDS, and with Austin out of school now, we know we’ll have to do whatever it takes.”