Connecticut residents seeking services for autism or intellectual and developmental disabilities may face waiting lists with as many as 2,000 names. Others may be disqualified from services based on an IQ score. Those were among the concerns lawmakers hoped to address through a bipartisan bill debated Thursday.
The wide-ranging proposal, raised for a public hearing in the Human Services Committee, attempts to tackle the issues on a number of fronts from encouraging state agencies to use their funding to reduce waiting lists to promoting an adequate workforce to serve the IDD population.
Another provision asks state agencies to recommend new service eligibility criteria that does not hinge on the results of an IQ test.
Thursday’s hearing prompted personal testimony from several impacted families. Eilene Kleva of Windsor described how her adult son Paul did not qualify for certain services because his IQ score exceeded 69 even though his autism meant he required assistance in most matters.
“He couldn’t do most of life’s business by himself. He couldn’t be trusted to walk across the street without looking both ways but under Connecticut’s current system, just one number is all that counted,” Kleva said.
Currently there are 948 people on a waiting list for services through the Department of Developmental Services. There are around 2,000 waiting for autism services through the Department of Social Services. In many cases, how long someone waits on these lists depends on their situation and the available resources.
State Child Advocate Sarah Eagan described some of her own experiences as a parent of a child with multiple developmental disabilities.
“Every single minute of the day whether I think about it or not, I am breathing in and breathing out everything that you hear today,” Eagan said. “What happens to my child when I’m gone? What happens if the help we need isn’t there? What happens when I don’t have the capacity that I have here today to do what she needs every single day? And I’m just here to say: We have enormous work to do.”
More than a dozen legislators of all political stripes held a press conference earlier that morning and committed to beginning that work.
Rep. Jay Case, R-Winchester, said he felt personally invested in the issue in part because of his brother, who had special needs before he died in a group home five years ago.
“That fired me up even more to get more people out into group homes and get them staffed properly,” Case said.
Rep. Lucy Dathan, D-New Canaan, said advocates and impacted families had helped proponents gather the support of all the lawmakers crowding the legislative conference room.
“I am committed to finding solutions and alternatives and working with all my colleagues to get this measure to the finish line this session,” Dathan said in a press release.
The bill has broad support with 40 co-sponsors including House Speaker Matt Ritter. However, it’s unclear how much financial support will be attached to it. Although proponents said it would eventually include significant funding, many of its provisions designed to reduce waiting lists are currently written to direct agencies to make changes within their current funding levels.
In written testimony submitted to the committee, Department of Developmental Services Commissioner Jordan Scheff said the bill would continue work that was already underway at his agency.
“DDS makes every effort to reduce the waiting list for residential services each year, within available appropriations, and would welcome the opportunity to continue this work throughout the biennium,” Scheff wrote.
During the press conference, Case acknowledged that alleviating the lengthy waiting lists would take time but said the bill was an important step in the right direction.
“Connecticut has been known to have this waiting list and hopefully by the time we’re done with this bill — we know it won’t happen overnight, we know it won’t happen in one year but we hope that that wait list will no longer be talked about and we can move forward,” Case said.