This story has been updated.
John Kearney was excited to learn last year that his autistic son, Brendan, was eligible for state-sponsored support services that could help achieve his dreams of college and a career in computer sciences.
A Department of Social Services letter indicated Brendan would have to spend time on a waiting list — but how long could it be, with Connecticut running up billions of dollars in record-setting budget surpluses?
Then John did the rest of the math. After researching the list and annual spending trends — even amid the surpluses — he concluded it would be more than a century before his son — who was 32 then and 33 now — would get help.
“I said, ‘OK, let’s connect the dots here,’” Kearney, who lives in Suffield, told CT Mirror in a recent interview. “I said, ‘This is ridiculous.’”
After battling all session, he and other advocates scored a win over the past two weeks when the General Assembly enacted a key measure to begin driving down an autism services backlog that tops 2,000, as well as a second waiting list for persons with intellectual disabilities.
But advocates aren’t easing up. One waiting list has been growing rapidly for years. Another, already huge, has been stagnant for decades.
“I would categorize it as a meaningful first step,” Kearney said, referring to the measure enacted in the last two weeks of the just-concluded General Assembly session.
Legislators say commitment to shrink waiting lists is strong
Lawmakers from both parties insist not only are they prepared to take a meaningful first step forward but that it won’t be the last.
The measure passed unanimously in both the House and Senate appropriates $30 million over the next two fiscal years to a host of human service initiatives. But the majority of those funds will go toward a mandate that the Department of Social Services remove at least 600 people from the autism services waiting list over the next two fiscal years.
That was complemented by $16 million in financing included in the next two-year state bond package. Most of that bonding would establish a grant program for supportive housing facilities within the Department of Developmental Services. And the DDS commissioner would be required to report to legislative committees annually on the success of this grant program, and other efforts, to whittle down another waiting list — this one involving intellectually disabled adults needing residential services.
But while the new investment is arguably the largest made in recent history to attack social services-related waiting lists, there was another benefit just as important as the dollars, said Rep. Lucy Dathan, D-New Canaan, one of two lawmakers who spearheaded the measure.
Advocates and lawmakers together planted the seeds of a culture change, Dathan said. The goal from the beginning was to launch a multi-year effort that would break a cycle of acceptance, of being comfortable with large waiting lists that seemed, at best, to stagnate over time, and at worst, to grow year after year.
“It was probably the biggest bipartisan effort in the session,” Dathan said. Democratic and Republican legislators who worked on the bill either referred the measure, or spoke at length about it, to colleagues on eight different committees.
And it didn’t involve just the obvious panels, like Human Services, Education, or the Committee on Children, she said. Legislators from committees on Housing, Transportation, Judiciary, General Law and Planning and Development all played a role.
And as more people discussed how long Connecticut has allowed these waiting lists to linger, she said, more legislators became interested in chipping away at this problem year after year.
“We’re trying to move the needle on this and move it forward,” Dathan said of all waiting lists tied to services for the disabled. “Every single legislator in this building has a handful of constituents, if not more, in this community.”
And while some advocates want all waiting lists eliminated immediately, Dathan said that because legislators did not overreach with this year’s investment, she believes it won’t be revoked, even if the economy slips in the next year or two and pushes state finances into deficit.
“Everything I wanted to do was for it to be sustainable,” she said. “If it wasn’t sustainable, just a lot of people are left behind. And I didn’t want that.”
Rep. Jay Case, R-Winchester, who led the initiative along with Dathan, said, “This is a bill that is going to be a work in progress for a bunch of years. … But I think this is the pathway to where we get to where we need to be so the state of Connecticut can be happy and the parents can be happy on placing their most vulnerable people in somewhere where they feel comfortable.”
Autism waiting list grew 18-fold in a decade
The measure’s primary focus is to reduce an autism services waiting list that began to grow about 10 years ago. That’s when the state converted a pilot program into an ongoing effort to provide home- and community-based services for people with autism, covering as much as $50,000 per person, though the average expenditure is closer to $10,000. These services range from behavioral health services to job coaching, tutoring, transportation and even live-in companions.
Though it is supported with some federal Medicaid dollars, it’s not an entitlement program. That means it’s limited by overall funding. And when that runs out in any given year, no more people can be helped. Hence the waiting list.
The program currently serves about 100 people, almost double what it did one decade ago. But it also has slightly more than 2,000 on the waiting list. In 2017, just before Connecticut began amassing more than $9 billion in budget surpluses, the waiting list was 1,040, according to the social services department and the Office of Policy and Management. In 2013, the list of people on hold totaled 111 — 18 times smaller than the current waiting list.
“There’s so little in this state, for it being such a wealthy state” for people with autism, said Doriana Vicedomini, one of three people who chair the Connecticut Advisory Council on Autism.
And Vicedomini says the real waiting list probably is much larger than 2,000 people.
One in 36 8-year-old children, about 2.8% nationally, have been diagnosed with autism spectrum disorder, according to the U,S, Centers for Disease Control and Prevention. The prevalence of autism nationally was 2.3% just five years ago.
Not only has awareness of autism and its prevalence grown, but Connecticut families with autistic members have begun to realize the state hasn’t been trying to keep pace with the demand, Vicedomini said.
“People are afraid to acknowledge how large this problem is,” she said, adding that for every person on the autism waiting list, there likely are several others in need whose families aren’t bothering to apply, assuming it’s a lost cause.
Advocates: Helping people with autism is a sound economic investment
That’s a shame, Vicedomini adds, because a greater state investment could do more than assist families in need. It also could yield economic returns, helping many intelligent adults obtain higher-earning jobs.
For example, the Kearneys were seeking some tutoring and academic mentoring for their son.
Brendan, 33, who was diagnosed as autistic as a young teen, always has excelled in computer science and information technology. He finished high school and several courses spread across several community colleges.
But Brendan, like some others with his diagnosis, has difficulty socializing, and his thinking patterns can be rigid and repetitive.
He’s found local blue-collar jobs and has worked in a neighborhood pharmacy and a supermarket, where his employers have been very supportive, but the work isn’t challenging.
With some state-sponsored tutoring, mentorship and possibly job-placement assistance, his family says, Brendan could have a much more fulfilling career.
“I’m really great with computers, and I know several programming languages,” he said. “But I tend to get really bogged down in really unimportant details.”
If he scores a 98 on a test, for instance, he may focus on trying to understand how he didn’t get a perfect score, to the point where it becomes hard to focus on the rest of the course.
According to the Department of Social Services and Office of Policy and Management, it would cost $45.3 million extra per year to fund benefits for Brendan and for everyone else on the autism waiting list. Close to half of those costs would be covered by federal Medicaid reimbursements.
The department and OPM wrote in a statement that serving about 2,000 more clients with autism also would mean hiring 50 more case managers, about five more supervisors and expanding other related services, including investments in nonprofit community-based social service agencies. It's difficult to predict 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, adding he believes he’s not alone.
Social services staff and other state officials generally have been “professional, understanding and compassionate,” Kearney said, adding he suspects many in government social work feel embarrassed by the state’s past reluctance to do more.
“It can’t be much fun for them,” he said. “How much fun can this be to have their job and send a letter to someone and say you’re eligible for services, but … the wait list is over 100 years?”
Osten: Autism waiting list is the tip of an iceberg
Sen. Cathy Osten, D-Sprague, co-chairwoman of the Appropriations Committee and one of the legislature’s most vocal advocates for greater investments in social services, said the autism waiting list challenge is symptomatic of a larger problem in state government, including the legislature.
Since the 1980s, Connecticut has followed a national trend, moving its social services safety net from institutions into a community setting. And the state’s chief means of delivering these services involves contracting annually with community-based nonprofits that run day services, counseling and other programs, clinics and group homes.
But Connecticut never really developed a model for sustained funding to the industry, she says, and certainly not one that plans for increased funding to cover inflation, rising case loads and other challenges.
The CT Community Nonprofit Alliance, which represents roughly 300 agencies, asserts that its members’ annual payments from the state have fallen by $480 million since 2007, after adjustments for inflation are made.
Too many state officials think these nonprofit agencies and their workers are “like somebody’s grandmother taking care of people and not [performing] an actual job,” Osten said. “I think that’s something people think they should not have to worry about.”
The industry, which employs about 114,000 people mostly in human service jobs, has been warning for years that waiting lists are growing and program slots are disappearing as their financial crisis worsens.
Kirsten Ferguson of Simsbury and her family struggled with the Katie-Beckett Waiver Program. Also overseen by the Department of Social Services, it offers Medicaid services to people 21 and younger who have certain disabilities and would not normally qualify for Medicaid because of their family income.
Two of Ferguson’s four children have autism. She particularly had trouble finding hospitals that would accept her teenage daughter Autumn, who started displaying increasingly aggressive behaviors about a year ago.
The waiting list for this program has fluctuated only slightly over the past several years. Since 2018, it was at its lowest, with 218. It hit a high in late 2022 with 292 on the list, according to data from the department, and was at 291 earlier this spring.
Ferguson said her family waited five years on the department’s list. At times during the pandemic, she paid about $700 per week to hire people to help care for her daughters.
“We were spiraling into debt because we couldn’t afford to pay that, but we couldn’t afford not to have that,” Ferguson said.
When Autumn’s name came up on the list right after she turned 18, she could qualify for HUSKY insurance based on her own income. Her family's income no longer disqualified her, and she didn't need the waiver.
The Katie-Beckett waiver came through for Ava about then, but after years of waiting, Autumn didn't need it anymore.
In January 2022, Ferguson started pushing to get more in-home behavioral care started for Autumn through insurance. It took almost a year for the family actually to get in-home behavioral services. And she still wasn't getting even close to what insurance deemed "medically necessary."
After their trouble getting services, the family made the decision to put Autumn in residential care. She hasn't moved in yet and doesn't have a move-in date as the facility tries to fill staff positions.
But neither the Katie-Beckett waiver nor the larger autism services program features the longest-running waiting list.
State officials have been struggling for decades to whittle down a waiting list for adults with developmental disabilities in need of residential services — many of whom have elderly parents who have cared for them all of their lives.
That waiting list, which has been an issue since the early 1990s, also has been slow to shrink.
In 2013, the Department of Developmental Services was providing residential services to 7,892 clients, with 961 on a waiting list. This year, it reported serving 7,853 clients with 928 on the waitlist.
DDS Commissioner Jordan Scheff told CT Mirror earlier this spring that despite these numbers, the department has expanded many services for the disabled and never has accepted the idea that the waiting list is an unsolvable problem.
“It’s within our mission, our five-year plan, to do what we can to ameliorate the wait list,” Scheff said. “But we do so within available appropriations.”
And while state government’s coffers have swelled in the past five years — and particularly since 2020 — that hasn’t translated into huge increases for state agencies.
With more than $88 billion in bonded debt and unfunded pension and retiree health care program obligations, Connecticut is one of the most indebted states in the nation on a per-capita basis.
Gov. Ned Lamont and the legislature have prioritized paying down the state’s massive pension debt, which is nearly half of that $88 billion problem.
Over the last three fiscal years, the state has used $5.8 billion of its budget surpluses to make supplemental payments into its pension funds for state employees and for municipal teachers.
Kearney said advocates for greater investments in social services understand the state has long-term fiscal challenges. But they also say residents don’t expect vital services to be put on hold until Connecticut’s debt issues — which are projected to remain significant well into the 2030s or later — have been resolved.
And while advocates are appreciative of the measure that the House adopted, they won’t relax their focus in the coming years.
“We can do better. We should do better,” he said, adding government should be measured by what it does for those most in need, by ensuring no one has been left behind. “I think we have the resources.”
Correction: A previous version of this story incorrectly attributed facts about Autumn Ferguson’s condition to her sister, Ava Ferguson. The error occurred in two photo captions.