By Rebecca Dravis
04:44PM / Monday, April 13, 2015
PITTSFIELD, Mass. — At this point in Mark McCormick-Goodhart’s life, he and his wife should have been empty-nesters, having raised three children who should have lives of their own.
Instead, their home is filled with the sounds of their “very sweet and very stubborn” Matthew, who was born with Down syndrome and is now in his 20s. The couple finds themselves caregivers for life.
McCormick-Goodhart shared his family’s story during the 15th annual Berkshire Legislative Breakfast on Friday morning at Itam Lodge. The breakfast brings together representatives of more than two dozen county agencies that serve people with disabilities of all sorts and offers them the chance to hear from — and, more importantly, talk to — the county’s legislative delegation.
It was during the “talking to” part that McCormick-Goodhart spoke about the importance of family support services, which his family has utilized through Berkshire County Arc since they relocated to the Berkshires several years ago. State funding of family support services continues to be threatened with severe cuts in this year’s budget discussions, which could affect the more than 300 families who count on it for services like respite care to give people like McCormick-Goodhart and his wife a break now and then from caring for Matthew.
“Family support services are invaluable to us as a family,” McCormick-Goodhart said to the more than 250 people in attendance at the breakfast, including the county’s five legislators.
McCormick-Goodhart said caring for a child — or adult — with disabilities is rewarding in many ways.
“But it also can be overwhelming,” he said.
Enter BCArc’s family support services, in which Matthew is taken care of by capable, caring people while Mom and Dad get some time to themselves. The benefits are twofold, McCormick-Goodhart said: Matthew gets to learn independence from his parents while his parents can leave him in good hands for a night out or an even bigger event — in their case, for example, the graduation ceremony for their older son.
“Finding competent care for adults with severe disabilities is very difficult,” he said. “I have no doubt that other families use family support as wisely as we do.”
Family support services were just one of many topics touched on at the breakfast in the form of personal stories told to the attendees. Other topics included the benefits of Chapter 257 pay increases for those who work with people with disabilities, the importance of employment and day habilitation services, and the challenges facing those in need of transportation. Some of the topics were discussed by workers in the field, but some were presented directly from the person receiving the service.
One such speaker was Stacia Bissell, a brain injury survivor who spoke about the importance of cognitive rehabilitation services to those who suffer traumatic brain injuries.
“It happens in a flash, and life as we know it is forever changed,” said Bissell, who sustained a bicycle injury when she was a teacher with aspirations of becoming a school principal someday.
“There have been two versions of myself,” she said. “In an instant, the old version of me was boxed up.”
But thanks to cognitive rehab, she was able to re-learn how to to everyday tasks like cook and shop. She credits the fact that she was “plugged into the right resources” to be able to recover as well as she did. And she credits the ability of those resources to exist to a strong commitment by local public officials.
“Survivors in the Berkshires are lucky to be represented by strong and ethical people,” she said.
After the personal stories were shared, the floor was turned over to the five legislators, each of whom spoke briefly and echoed each other’s comments about how important it is for them to hear these stories when buried in paperwork and fighting for funding.
“We all come away from this every year … with a renewed sense of purpose and a reminder of just how important the numbers are that we debate at the State House every day, that there are real lives behind those,” said state Sen. Benjamin Downing. “And we know that. But you can never hear it enough, because there are always so many numbers being thrown around.”
State Rep. Tricia Farley-Bouvier agreed it was important for the local agencies and families to provide this important feedback.
“We really do count on you as partners in this endeavor. We count on you to teach us, to remind us what’s important,” she said. “The more that we learn, the better effect we can have on policies and the budget priorities.”
State Rep. William “Smitty” Pignatelli singled out McCormick-Goodhart and his story when giving his remarks to close out the breakfast.
“Sometimes it takes someone who is a transplant to remind us how special Massachusetts is,” he said. “I would argue that you reminded us again how special Berkshire County is.”