Family Support Highlighted at 16th Berkshire Legislative Breakfast
PITTSFIELD, Mass. — In front of a room filled with people who understood only too well, Jean Simmons shared the very personal story of raising her son, now 27, who was born with a condition that causes excess fluid to build up in the brain.
"He requires 24-7 care and supervision, and he lives at home with myself and his dad," Simmons said. "When Matthew was born, we were told he would never walk or talk or have any quality of life.
"Boy, were they wrong."
Today, Matthew talks morning, noon and night — and sometimes beyond, Simmons said to a chuckling audience at the 16th annual Berkshire Legislative Breakfast, a presentation of Berkshire County Arc and similar agencies.
Simmons credited BC Arc's day program and a monthly overnight respite with helping to improve Matthew's quality of life.
But her main purpose in speaking on Friday morning was to praise the family respite program that improves the quality of life for caregivers like herself.
"The family support hours we receive help us out by providing a few hours of care for Matthew so we can finish out our work week and a couple hours in the middle of the week for him to go out into the community," she said.
"It's also been beneficial for us as his caregivers in that we have a couple of hours to take a breath, have a quiet dinner, watch the news, run a quick errand or just sit and enjoy a moment of quiet. I can't stress enough how just a few hours a week of respite can have a positive effect on caregivers and also on the individuals.
"If we can't take care of ourselves, than we can't take care of them."
Simmons' message was loud and clear to the five members of the Berkshire County legislative delegation and echoed by state Rep. Tricia Farley-Bouvier, D-Pittsfield.
"There are so many priorities when it comes to the disability community," she said. "There are so many [budget] line items, just in the world of disabilities. We have to bring something to the top.
"And it's really clear that it's family support. And I've always made that one of my No. 1 asks."
Respite services like those provided by BC Arc, BFAIR and other agencies represented Friday morning at Itam Lodge not only are the right thing to do for the families affected by conditions like Matthew Simmons' hydrocephalus, those services make fiscal sense for the commonwealth, Farley-Bouvier said.
"Sixty percent of individuals with disabilities are cared for by their own families, but [family support] represents 3.5 percent of the whole budget," she said. "That is unbelievable — the amount of services provided 'free of charge' to the taxpayers of Massachusetts by these families.
"The very least we can do for them is give them a few hours a week of respite care.
"What would we do without the Jean Simmons of the world?"
On Friday, the county's advocates for people with special needs gave thanks for the Farley-Bouviers of the world.
BC Arc President and CEO Kenneth Singer called her and her colleagues "the best delegation in the state." And state Sen. Benjamin Downing, D-Pittsfield, received a plaque from BC Arc presented by his cousin Michael, and a painting created by Carol Neuhaus, a participant in the Community Access to the Arts program.
"Community Access to the Arts provides over 1,000 workshops in 37 settings and serving 100 artists throughout the Berkshires," Neuhaus said. "Painting makes me happy — even when I sell one."
CATA, the Association for Community Living, United Cerebral Palsy, the Department of Developmental Services, Goodwill of the Berkshires and Southern Vermont, Baroco and the Brain Injury Association of Massachusetts were among the groups who shared parts of their stories at the breakfast.
The benefits such agencies provide range from counselling and guidance for families to meaningful employment for people with disabilities to residential life programs for those whose needs cannot be met at home.
Lori Forfa talked about the residential program at BC Arc, where her niece has been able to thrive.
"Kristi's story is centered in her BC Arc home," Forfa said. "We found attention to those things that brought so much joy to Kristi's life and to ours. I remember early the excitement of the staff and her housemates as we all got her ready for her high school prom, her class trip to Connecticut and her walk across the stage at Tanglewood with her high school class.
"We found independence that I couldn't have imagined for Kristi. She has learned so many skills in caring for herself, for her room and for contributing to life in her home. And she is still learning.
"We found a deep respect for Kristi's rights and choices. While Kristi doesn't speak, the staff has found so many ways to assure that she has the opportunity to make her choices known."
Success stories like those shared on Friday resonated with the legislators. State Rep. William "Smitty" Pignatelli, D-Lenox, encouraged the breakfast's organizers to tell their colleagues across the commonwealth to hold similar events. State Rep. Paul Mark, D-Peru, said Franklin County has started to do so.
"I really appreciate each and every one of you giving your stories," state Rep. Gailanne Cariddi, D-North Adams, said. "You know what it means to give us the information we need to go back and help you with the resources that are so important not just to every one of you, but to all of us [legislators] up here."
Tags: BC Arc, BFAIR, legislative breakfast, social services, UCP,
