When Velma Williams-Estes became a widow three years ago, it really hit her that she had to plan for permanent care for her daughter Deborah Ann Williams, 46, who has Down syndrome.
“I am scared,” Williams-Estes, 66, of Meriden, said. “Every day, every day, I pray to God that I’ll be here, that he will give me the strength and the stamina to be here for her entire life.”
To speak out for more residential placements for people like her daughter, Williams-Estes has joined Our Families Can’t Wait, an advocacy group formed last fall by Connecticut families who are waiting for homes and apartments to open for their children and grandchildren with intellectual disabilities.
The advocacy group has been lobbying at the state Capitol to gain support for a $149 million proposal that would dramatically increase funding for new state-funded group homes, home support and community companion homes – licensed family homes for three or fewer people with intellectual disabilities. The group is receiving organizational help from the New England Health Care Employees Union, District 1199.
Our Families Can’t Wait said 3,552 people with intellectual disabilities were on a waiting list for residential placements in Connecticut as of Nov. 30. That included 75 seeking emergency placements and 1,460 ranked as “priority one” by the state Department of Developmental Services. Some parents have said their son or daughter has been listed as priority one for years.
The parents presented testimony to the legislature’s Public Health Committee on March 19. Carl Noll of Fairfield told the committee that he and his wife, Noreen, are concerned about the future of their son, Eric, 47, who has autism. Noll said deep budget cuts to DDS and changes in policy have virtually eliminated new group homes.
“We are retirees who wonder about what will happen to Eric when we can no longer care for him,’’ said Noll, who added, “We see the happy life that Eric has lived until now ending.”
Noll said the legislation would “answer all of our prayers” and those of other families waiting for placements for their sons and daughters.
With the bill’s fate uncertain, Our Families Can’t Wait will hold a press conference on Wednesday at the state Legislative Office Building, Jennifer Schneider, a spokeswoman for District 1199, said.
The bill would require DDS to develop a plan by July 1, 2015 to expand community-based residential services, respite care, emergency care, day program services, vocational services and in-home support services. By July 1, 2016, DDS would have to provide all eligible Connecticut residents, including those on a waiting list, with the services for which they are eligible.
That provision carries a hefty price tag. The legislature’s Office of Fiscal Analysis said $35,000 would be needed in 2014-15, but expanding services would cost a net – after federal reimbursement – of $49 million in 2015-2016 and more than $100 million the following year.
State Sen. Terry B. Gerratana, D-New Britain, a member of the legislature’s Appropriations Committee, said today that the committee has added $4.4 million to DDS’ proposed budget to fund more placements. She said the waiting lists for emergency and priority placements are a “great concern.”
“It’s gotten to the point where we have to do something,’’ she said.
She and State Rep. Susan M. Johnson, D-Windham, who co-chair the Public Health Committee, said they appreciated the efforts of the families, health care workers and advocates to raise awareness about the problem.
“Many of the parents are getting older and they worry that their children will be end up in a setting that is unknown to them,” Johnson said. “It’s a very big hardship.”
DDS Commissioner Terrence W. Macy told the Public Health Committee in March that his agency has been working with families and community leaders to move more people with intellectual disabilities to less restrictive and less costly settings than group homes. He warned, though, that the proposed legislation would be too expensive.
“Building a system that entitles every eligible person to services is not only unsustainable, [but] it is not achievable,’’ Macy said.
Williams-Estes said a wealthy state such as Connecticut has to have a better plan to care for its most vulnerable citizens. While she is not seeking a group home for her daughter right now, she said she wants a plan in place for when they are both ready to take that step.