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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?

Hartford Courant - 2/6/2023

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.

The limitations must be diagnosed before age 22 “and be expected to continue indefinitely,” according to the requirements.

Complexity in state services

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.

“DDS waivers have more money for those purposes than the others. They also have a much deeper bench, if you will, of providers,” he said. “All the services are provided by private nonprofits like the Arc and Kennedy Center or Oak Hill, and so forth. … You can get employment supports, day programs, transportation, assistive technology, in-home support.”

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 did not immediately return a request for comment on the bill.

However, Glomb said, the autism waiver is overseen by Social Services, as is the Katie Beckett waiver, which serves those 21 and under who have a physical disability, whether or not they have an intellectual disability. It’s uncertain how those programs would change.

Glomb said if the state used the U.S. Department of Health and Human Services’ definition of “developmental disability,” there would be less complexity in state services.

“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.

“I’ve heard from at least 40 families by now — parents, caregivers — who have … children or family members who have autism, who are excited about this because the autism waiver is so inadequate,” Glomb said. “It’s a large and vocal group.”

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.

“So is the waiting list a true indicator of unmet need?” he said. “I know that amongst families there are people who take the waiting list very seriously. Then there’s others who just laugh and don’t even bother applying because they know it’s not going to help them today.”

‘Only just chipping away’

Yana Razumnaya, co-chairwoman of the Autism Spectrum Disorder Advisory Council, is on the spectrum herself and lives independently. She believes defining developmental disabilities will help those who are waiting for services but whose IQ is too high now.

“We have individuals who are on the waiting list who are just one or two points shy of being able to get DDS services,” she said. “And this way they will be able to get services and we’ll be able to get them off of the waiting list, because right now our waiting list at DSS is astronomical.”

The DDS services and supports (capped at $50,000 annually per person) can include, under the waiver: clinical behavioral supports, social skills groups, job coaching, a life skills coach, individual goods and services, and more, according to the Department of Social Services.

Razumnaya, 36, of West Hartford, is particularly concerned about housing.

“DDS has housing options but at the DSS autism waiver we don’t have very many housing options, if any,” she said. “I live on my own. It would be nice if I had some kind of housing where I would get more social support.”

She’s fortunate she is able to live independently, Razumnaya said. “We have other people who are going to be an adult where their parents are in their 70s and 80s and they’re still living at home. And what’s going to happen to those people when mom and dad are no longer around? We’re going to have a crisis on our hands.”

She also wishes there were more encouragement for people to seek jobs that fit their skills and passions. A college graduate with a major in history, Razumnaya works at DDS herself.

“We can get more creative about accommodating people that don’t drive, using more remote meetings and helping me with transportation,” she said. “Because these positions right now, like case management, all require a valid driver’s license. They’ve got to get more creative because they’re shutting out a big subsection of people who would do a wonderful job.”

The law is “definitely extremely outdated and definitely should be changed,” said Andrew Komarow, founder of Planning Across the Spectrum, a financial services firm for neurologically diverse people. “You have people with 130 IQ who need a lot of support.”

Cathy Abercrombie of Meriden, a longtime advocate for neurodiverse individuals who represented the 83rd District in the House for 16 years, is looking forward to the public hearing on the bill that is ultimately written.

“My only concern is what happens to the kids that are dually diagnosed,” she said of those who are both autistic and have an intellectual disability. “Right now, they get full services because of that. So if we remove the score, and then open it up, what are we going to be using as a base to make sure all these kids are getting services?”

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?”

Ed Stannard can be reached at estannard@courant.com.

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