HARTFORD -- Sarah Peters is an intellectually disabled 30-year-old who is a passionate about UConn basketball and loves to ride horses.
She lives in Killingworth with her parents, who agonize about what will happen to her when they are no longer alive. "She will need support and supervision her entire life," her mother, the Rev. Kathleen Peters, told state legislators on Friday. "We love our children very much but we cannot do this alone."
Rev. Peters was one of dozens of family members who shared their concerns with lawmakers at a informational hearing at the state Capitol Friday. One by one, they told their stories and expressed their fears in a room filled to capacity with policy makers, disability rights advocates and fellow family members. The crowd was so large that some people had to watch the proceedings on television screens set up in two overflow rooms.
A woman from New London County spoke of her developmentally disabled sister-in-law, who sat in the living room all day and placed M&Ms in a bowl until she began attending a day program for adults with similar disabilities a few years ago. Now middle-aged, she participates in group activities and has many friends, but her caregivers worry about what will happen if funding dries up.
Dawn DeMatteo, a single mother from East Haven, is apprehensive about the future for her 21-year-old son with cerebral palsy, who is non-verbal and must wear a diaper. He needs assistance with just about every aspect of daily life and DeMatteo said she doesn't know what will happen when he finishes school in June.
"I would just ask each of you to take a few minutes,'' she said, her voice cracking, "think of one of your children in this situation and how you would feel."
State lawmakers, led by Sen. Beth Bye, recently formed a caucus on intellectual and developmental disabilities. The group, which is believed to be the first such state-level caucus in the nation, provided the forum as a way for families to raise their concerns and express their fears.
"Fifty or 60 years ago, families didn't have a choice about where their loved ones went: they were told by medical professionals, 'if you have a child with a disability, put [him or her] in an institution and forget you ever had them,'' said Leslie Simoes, executive director of The Arc Connecticut, an advocacy group.
But the patchwork safety net that has largely replaced institutional care is not adequately serving all families, Simoes said. The state Department of Developmental Services has an annual budget of about $1 billion, she said. It costs about $380,000 per year to provide services to each of the 353 people living at Southbury Training School. The cost per year at the state's regional centers is about $400,00 per person, Simoes said.
"You're talking about a lot of money that gets spent on a very small percentage of the population served,'' Simoes said.
In contrast, the average per person cost at group homes ranges from $220,000 to $120,000 per year, Simoes said.
Meanwhile, countless families are caring for their loved ones on their own. "They don't have any peace of mind right now to know where their loved one will go after their gone,'' Simoes said. The message, she said, is: "Keep your children at home while you can and then, when you die, we'll take care of them."
Shelagh McClure and Tom Fiorentino's 23-year-old son Daniel has Down syndrome; he lives at home but is fairly independent. "Looking ahead to his future we realized there really was no plan in place and frankly no prospect of funding for any plan...in the...future," McClure said.
Added Fiorentino: "There's no waiting list because there's nothing to wait for. What we're being told is, 'your child will get a placement when the last caregiver dies...you've got an agency with a billion dollar budget that is appropriated in such an odd and inefficient way and you've got hundreds and hundreds of families just waiting."
Simoes said advocates are pressing for major changes. "We're looking for a whole system overhaul that really looks at the resources that are available, and how they're being allocated and what works for families," she said.
Joan C. Barnish, director of communications for the Department of Developmental Services, referred to the hearing as "an extraordinary event" and pledged to "continue to listen."
"DDS applauds their advocacy for themselves, their family members and for all the people who need support,'' Barnish said in a written statement. "DDS appreciates the frustration when residential supports are not available for proactive supports allowing people to naturally progress towards more independence while living with their family or moving to their own home in the community. DDS will continue to balance the needs of individuals and their families within existing resources."
For the last three years, the department had been actively working to transition "away from costly models to person centered supports,'' Barnish said, noting that the state has been recognized nationally for its efforts.
"DDS will continue to listen and learn from individuals and families. Our commissioner will continue to work with the governor and the legislature on ways to best use the available resources to serve our citizens with intellectual disability and autism,'' Barnish added.
Near the end of the hearing, lawmakers heard from Daniel Lenz, a developmentally disabled 33-year-old who lives in an apartment and has a job. He thanked the Department of Developmental Services, as well as the Farmington Valley ARC for providing him with a ride to his job and to the movies, and all the other help he needs to live a rich and full life.
His father, Rick Lenz, said he could not "imagine what Danny's life would be like today if he had come home from school and sat in our living room watching television until he was 33...his life would not be what it is today.''