Citizens with Disabilities & Their Families Share Their Stories
Department of Developmental Services Commissioner Jane Ryder speaks at Friday's legislative breakfast.
And they heard how any breakfast — or any meal — can be a challenge for some of their constituents.
"I was speaking with [United Cerebral Palsy's] Louise Norton in the assistive technology department one day, and she told me, 'Well, Jennifer, this is where I come in. I can help you to be able to communicate with [your daughter] and she can communicate with you,' " Jennifer Thompson told the packed banquet room. "I almost jumped out of my skin. I was so excited to hear about all of the technology available.
"[Norton] also ordered Kaylee adaptive utensils, plates, bowls and cups so that she could learn to feed herself and be more independent. Every time I put that fork in her hand, her face just lights up. So having a place with resources to help us is amazing."
UCP is just one of a dozen local agencies working to provide resources to young Kaylee Rae Thompson and other individuals living with a wide range of disabilities. Friday's breakfast was a chance to recognize their triumphs, appreciate the social workers, aides and family members who provide them with support and advocate for needed state funding.
Sen. Adam Hinds, D-Pittsfield, and Reps. Tricia Farley-Bouvier, D-Pittsfield, and John Barrett III, D-North Adams, each addressed the crowd and thanked them for the message the legislators promised to bring back to Boston.
But mostly, they were there to listen. And courageous parents like Thompson, who moved her family to Massachusetts from Florida in search of better support structures, were there to do the talking.
"No one wants to hear that their child will never be able to do things for themselves, but that is what we were told," said Thompson, whose daughter was born with cerebral palsy, Ebstein's anomaly and cortical visual impairment. "We pushed through, and with the help of funding and staff that really wants to see my daughter achieve her goals, she has made it a long way.
"We wouldn't be here today without UCP."
The three legislators in attendance — Rep. Paul Mark, D-Peru, and Rep. William "Smitty" Pignatelli, D-Lenox, were unavoidably detained in Boston — each talked about the difficult funding both at the state and federal level. But each promised to do his or her part to continue fighting for programs like UCP's assistive technology arm and to push for better salaries for the agency employees who make such programs a success.
"It was just a few weeks into this job that I met Jean and Matthew [Simmons]," Farley-Bouvier said. "It was through their personal advocacy that really for the first time I really understood about families because I was in the congregate care world years ago. So many families now … keep their loved ones at home.
"And for very few state dollars — I hate to say this, but when you work in Boston, sometimes we only talk about dollars and cents — for very few state dollars, individuals are staying at home and saving taxpayers millions of dollars. From a dollars and cents side, it makes a tremendous amount of sense to support families."
Jean Simmons, whose son Matthew was born with hydrocephalus, was one of the family members sharing her story at Friday's breakfast.
"We have also been receiving family support services of five to six hours a week through the Family Support Center at UCP," said Jean Simmons, who was joined by her husband, Ed. "These hours allow Matthew to get out into the community without his mom or dad. He has been able to participate in more community activities and spend time with his peers. … Having this time has allowed my husband and I an opportunity to have some quiet time for dinner, to catch up on normal day-to-day activities that we can't always get to. We get to take a break and now that Matthew is off doing an activity, having fun and is being taken care of for that brief period.
"These family support hours are treasured by us, and Matthew enjoys getting out on those evenings."
But, like any other supports for people with disabilities, that respite time is subject to the whims of the budget writers in Boston.
"Whenever it is budget time, we hold our breath and pray that the family support services are not on the chopping block," Simmons said. "They are so critical to our family and so many other families who may have more challenges than we do.
"As parents, we want to take care and provide for our son, but without some supports, it is extremely difficult and exhausting to do 24/7 without these services. If we can't take care of ourselves, then we won't be able to take care of Matthew."
Sometimes, home care is not the best option for an individual.
Susan and Rick Gore were at the breakfast with their son David, who was born with the same condition as Matthew Simmons back in 1989.
Now nearing age 30, David resides at a group home operated by Berkshire County Arc.
"As aging parents of a child who has special needs, knowing anything can happen at any time, it brings great comfort to know that Dave will be taken care of," Susan Gore said. "There's no greater wish I could have than that.
"This is their independence, in their own special way. Where would we be, or, shall I say, where would they be without residential homes? To BCArc and to our legislators, it's you who make this possible. … I've always been proud to be a resident of Massachusetts. I feel we are a state that puts people first."
And people with special needs are not without their share of champions in government, some of whom have very personal connections to the issue.
North Adams Mayor Thomas Bernard told attendees about an uncle of his wife who had Down syndrome. Farley-Bouvier has worked in social services and refers to Berkshire County Arc CEO Kenneth Singer as "my first boss." The presumptive next president of the State Senate, Sen. Karen Spilka, D-Ashfield, has been the primary caregiver of a sibling with Down syndrome.
The newly appointed commissioner of the commonwealth's Department of Developmental Services, Jane Ryder, told the gathering she has a brother who is supported by the department she serves.
"What really is important to me, and what I bring to my job every day is being Mark's sister," Ryder said. "Growing up, I watched my parents. They were founding members of the Arc in Worcester. I watched them passionately fight not only for Mark but for other people with intellectual disabilities.
"As I became Mark's guardian, I was across the table from DDS. I think that's important as I do my work every single day, I'm always from that perspective, from the other end of the table. Mark is doing very, very well, and I will continue to advocate for him and for all people the department supports."
Tags: BC Arc, disabilities, legislative breakfast,
