Chelmsford agency hosts forum on disabilities
By Margaret Smith
Posted Mar 13, 2017 at 9:27 PM
Updated Mar 14, 2017 at 9:18 AM
Times are changing for those with intellectual and developmental disabilities, such as those on the autism spectrum, or Down syndrome, or brain injuries.
Their needs are as varied as the challenges they face, and with the right support, many can live full lives in their communities. But their families need support as well, and many programs and services that can help make life better and fulfill dreams require funding.
The state of care, options and funding challenges were the focus of the legislative breakfast held March 10 at the Federal Building of the Middlesex Community College Lowell Campus.
The event was sponsored by LifeLinks, a Chelmsford-based agency providing a wide variety of services for the intellectually and developmentally disabled in the greater Lowell area.
The event drew lawmakers, advocates and care providers to hear and give updates on the state’s fiscal 2018 budget — and in particular funding for support for a variety of programs for individuals with intellectual and developmental disabilities.
State Sen. Barbara L’Italien said although numbers look good, “It’s not time to take the foot off the gas,” and urged those present to remain in contact with their senators and representatives.
L’Italien represents the 2nd Essex and Middlesex District, which includes Lawrence, Dracut, Andover and Tewksbury.
L’Italien credited Tewksbury resident Jean Walsh, grandmother of a teen on the autism spectrum, and advocate for families with loved ones on the autism spectrum.
The Association of Development Disabilities Providers, an organization supporting community-based care providers, supports a number of line items in Gov. Charlie Baker’s fiscal 2018 budget concerning programs for the disabled.
The speakers, including Gary Blumenthal, chief executive officer of the association, also known as ADDP, said, the supported programs eye many goals including serving young adults who have aged out of services for children and youths; programs to integrate into the mainstream population; employment, family respite and head injury services.
Blumenthal said many programs can offer preventative measures that can in the long run save money, by for example keeping people from going to the emergency room for lack of alternatives, or by preventing injuries that lead to emergency room visits.
Some of the programs in focus included:
— Department of Developmental Services’ Turning 22, which in 2017 will provide transitional supports for more than 940 students making the transition graduating from special education schools and will need services ranging from residential, employment and family support. Baker’s budget supports this program at $24 million.
— Adult autism omnibus services, for which Baker recommends $13,403,338. The ADDP commends the amount but is requesting an additional $1 million.
— Department of Developmental Services Day and Employment programs, to help counter high unemployment and underemployment rates among developmentally disabled adults. Baker recommends funding the program at $205 million.
Disabilities Commissioner Elin Howe was a guest speaker at the event. Howe said, despite the fiscal challenges, “This is the best House-won budget we have ever seen…We have come out of the governor’s budget pretty much whole.”
Howe said the state Office on Disability is always working in concert with the ADDP, and with the ARC, the national advocacy organization for people with autism, Down syndrome, fetal alcohol spectrum disorder and other intellectual and developmental disabilities.
Howe said continuing challenges include an increased interaction between the population of developmentall and intellectually disabled and the criminal justice system. Additionally, Howe said, “Individuals’ needs change over time. They may have greater needs. The budget recognizes that changing needs do occur.”
During a question-and-answer session, some families shared their experiences.
Mary Petricone, of Chelmsford, advocate and mother of two, talked about her 20-year-old son, Eric. Eric is on the autism spectrum, and although accomplished in many areas and possessed of a diligent work ethic, is nonverbal and communicates by means of an iPad.
Petricone related an incident in which he found a key, went out of the house, and wandered away — unable at all to talk to anyone. “I had a heart attack,’ Petricone said.
A short time later, Eric turned up in a neighbor’s house, eating cookies.
Petricone worries for his future as an adult in society. Presently, he receives services that have put him in touch with a number of employment capacities he greatly enjoys. He delivers mail, does laundry, and “makes peanut butter and jelly sandwiches to die for,” Petricone said.
“We want Eric to be happy,” Petricone said. “He doesn’t have a voice. You have to be his voice.”
To the families who spoke, L’Italien said, stories resonate and have power beyond numbers and line items. “Share your story with lawmakers,” L’Italien said. “I’m astounded how many people don’t know who their legislator is.”