CT: Bill to address 1,000 person waitlist for ASD services

Feb 6, 2023, Hartford Courant: More than 1,000 people in CT with autism are on a waiting list for services. Could a change in the law help break that logjam? https://www.courant.com/news/connecticut/hc-news-autism-services-developmental-disability-assistance-20230206-ifklm6ez6rczjgqsyqphi37dee-story.html

A bill introduced in the state House of Representatives is short and technical, but it could have major implications for people with autism, more than a thousand of whom are on a waiting list for state services such as housing and personal care.

The bill, An Act Concerning a Definition for “Developmental Disability,” would add a definition of the term to the general statutes and change “intellectual disability” to “developmental disability.”

In practice, say those concerned about people with autism spectrum disorder, it would open up access to many services in the Department of Developmental Services to people with autism who have IQs of 70 and above. Now they are eligible only for the autism waiver with its long waitlist.

People with autism do not all have intellectual disabilities and may have high IQs, but are limited by qualifications and the IQ requirement. They also may have difficulty with self-support and self-care.

In order to receive the autism waiver, a person must “have substantial limitations” in at least two life activities, such as self-care, language ability, learning, mobility, self-direction or independent living….

State Rep. Lucy Dathan, D-New Canaan, vice chairwoman of the Human Services Committee, said the issue of intellectual and developmental disabilities is House Speaker Matt Ritter’s top priority this year. The “speaker’s bill,” H.B. 5001, is intended to address the many issues involved, she said.

“We’re one of the only states in the Northeast that have such an extensive waitlist and we’re really trying to address that,” Dathan said. The legislature also will be “looking at … other things that really can help this community, whether it’s housing issues, transportation issues, educational issues, the whole gamut if you will.”

Many services are provided through Medicaid waivers, which are reimbursed 50% by the federal government. Most of them are run through Developmental Services, said Walter Glomb, executive director of the Connecticut State Council on Developmental Disabilities….

However, there is the issue of the IQ limit. “In Connecticut, the scope of the Department of Developmental Services, DDS, is limited,” Glomb said. “It’s restricted in statute to serving only people with intellectual disabilities or something called Prader-Willi syndrome.” And intellectual disability is defined as an IQ of 69 or lower.

Even so, the agency serves 10,000 people, he said. A spokesman for DDS said the department does not comment on bills before a public hearing has been held….

“In Connecticut, we have evolved the service silos around specific diagnoses, specific labels, so you have intellectual disabilities over at DDS. You have autism and the autism waiver, you have mental health and addiction services that are tied to clinical diagnoses of mental illness,” he said.

Changing the definition of who can receive services is only the first step in a complex process, Glomb said, including changing agreements with Medicaid and finding the money to pay for it all.

He said the number of people with autism is similar to the number with intellectual disabilities — and the groups overlap — with tens of thousands of each….

The problem with getting autism services to people is huge, Glomb said, with a waiting list of about 1,400. “One of the problems with that is that Connecticut doesn’t do a very good job of measuring what it doesn’t do,” he said….

While the waitlist is still too long, Abercrombie said there has been an improvement. “Over the last two years, between the governor’s budget and then the House Democrats’ part of the budget, we were able to take 250 kids off the waitlist. That’s the first time in over 10 years we had the ability to do that, which is great, but it’s only just chipping away at all the kids that are waiting to get services,” she said.

This year, she asked, “Is there an opportunity with the surplus, with the finances being in better shape than they’ve ever been, to really address the needs of these kids?”