How Much Longer Will People Have to Wait?

Last year, John Kearney was thrilled to learn that his autistic son, Brendan, qualified for state-sponsored support programs that could help him accomplish his goals of attending college and pursuing a career in computer science.

Brendan would have to spend time on a waiting list, according to a letter from the Department of Social Services, but how long could that be given Connecticut’s record-breaking budget surpluses?

The remainder of the math was done by John. After reviewing the list and annual spending trends — even during surpluses — he determined that it would be more than a century before his son — who was 32 at the time and 33 today — would receive support.

After battling throughout the session, he and other activists achieved a victory during the past two weeks when the General Assembly passed a vital legislation to begin reducing a 2,000-person autism treatment backlog, as well as a second waiting list for those with intellectual disabilities.

But advocates aren’t backing down. For years, one waiting list has been rapidly rising. Another, already massive, has been dormant for decades.

Lawmakers from both parties claim that they are not just willing to take a meaningful first step forward, but that it will not be the last.

The bill, which was voted unanimously in both the House and Senate, allocates $30 million to a variety of human service activities over the next two fiscal years. However, the vast the majority of those funds will go toward a mandate for the Department of Social Services to remove at least 600 autistic people from the waitlist over the next two years.

This was augmented by $16 million in financing included in the next two-year state bond package. The majority of that funding would go toward establishing a grant program for supportive housing institutions within the Department of Developmental Services. And the DDS commissioner would be expected to report to legislative committees on the efficacy of this grant program, as well as other initiatives, to reduce another waiting list, this time involving intellectually disabled people in need of residential support.

The major goal of the initiative is to eliminate a 10-year-long wait list for services for autistic people.That’s when the state expanded a pilot program into an ongoing endeavor to provide home- and community-based services for people with autism. Connecticut is currently spending up to $50,000 per person on average.

These services cover a wide range of needs. They include behavioral health job coaching, tutoring, and transportation. In some cases, these waivers even live-in caregivers.

It is not an entitlement program, despite receiving some federal Medicaid funding. That means it is constrained by total finance. And when that money runs out in any particular year, no more people can be helped. As a result, there is a waiting list.

The program now serves around 100 people, which is nearly double what it did a decade ago. However, it also has slightly more than 2,000 people on the waiting list. According to the social services department and the Office of Policy and Management, the waiting list was 1,040 in 2017, right before Connecticut began accruing more than $9 billion in budget surpluses.The number of people who were on the waiting list in 2013 was 111, which is 18 times smaller than the current waiting list.

According to the Department of Social Services and the Office of Policy and Management, funding benefits for Brendan and everyone else on the autism waiting list would cost an additional $45.3 million per year. Federal Medicaid reimbursements would cover nearly half of those costs.

In a statement, the department and OPM stated that supporting an additional 2,000 clients with autism would include recruiting 50 more case managers, five more supervisors, and expanding other related services, including investments in nonprofit community-based social services agencies. It’s difficult to determine how much that would cost.

Still, the projected expense right now is a fraction of 1% of the General Fund. It’s an even smaller portion of the $9 billion in surpluses amassed since 2018. Kearney finds the waiting list’s growth in the face of this windfall hard to understand.

Kearney is not alone. Across the country, there are 820,000 disabled people on waiting lists for home and community-based services, but demand for such programs might be far greater.

Medicaid is a lifeline for so many people, and must be expanded to accommodate all Americans who need help. Without help, people are often forced into unsafe environments, and this can have devastating consequences.


Diament, Michelle. “Community-Based Services Should Be Mandatory Medicaid Offering, Federal Agency Says.” Disability Scoop, Disability Scoop, 12 Dec. 2022,

Phaneuf, Keith M., and Ginny Monk. “CT’s Disabled Are on Long Wait Lists for Services. Will That Change?” Hartford Courant, 11 June 2023,

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