It's nearing bedtime for Keighan Kosminoff at his home in Hamden. The 18-year-old talks to himself while playing a video game, drawing from his vivid imagination.
"Mommy, the gingerbread is stealing the Keighans," he shouts. "We must save those Keighans from the gingerbread."
Keighan has autism and relies on his mother for help with daily activities. Karen Kosminoff, a single parent, juggles working full-time with household chores, caring for a pet and helping Keighan with school, meals and transportation.
Kosminoff believes her son could learn to accomplish more on his own if the family had additional support.
"He needs help to become independent, because I believe he's capable," she says. "But things like life coaches aren't covered by insurance, and I can't afford them."
In Connecticut, a program supported by the federal Medicaid system provides the types of services the family needs to build Keighan's independence. It pays for respite care, a live-in companion, job coaching and more.
But demand far exceeds the program's capacity. Kosminoff received a letter from the state in 2015 informing her that while Keighan is eligible, there are no slots available, and his name has been added to the waitlist.
Ten years later, Keighan is still waiting. The list also continues to grow. More than 2,400 families like the Kosminoffs have been added.
Connecticut lawmakers tried to ameliorate the problem in recent years by increasing the number of available slots. Members of the disability community celebrated those moves, which aimed to connect several hundred more families with autism services.
But a review by Connecticut Public found long after it became available, much of that additional capacity remains unused.
The delay is due in part to short-staffing at the state Department of Social Services (DSS), which doesn't have enough case managers to run the program, a fact that sparked disappointment and surprise from advocates, families and a lawmaker with oversight of the program.
"That's a bombshell piece of information," said Sheldon Toubman, an attorney for the nonprofit civil rights organization Disability Rights Connecticut.
"Everybody, including me, thought the issue was slots," Toubman said. "And you're telling me, ‘No, it doesn't matter. You can open up slots. There won't be services,' which is really, really highly problematic."
Officials at DSS say a complicated onboarding process and lack of available autism service providers in the state have hampered putting the additional slots to use.
But the shortage of case managers is an immediate challenge that limits the number of people who can participate. Each case manager can handle a maximum of 40 clients, meaning the state needs about double the number of case managers it currently employs to reach full capacity.
State officials acknowledge they won't have a full complement of case managers in place in the near future. They're currently interviewing candidates for two additional case manager positions. Several more are funded but remain unfilled.
"There are a whole lot of resource constraints and administrative burden that we're trying to clean up as best we can in order to make it easier to start getting on services," said Christine Weston, the director of community options at DSS.
‘We can do better'
Connecticut's waiver program for people with autism spectrum disorder has existed for more than a decade. It provides assistance for those who face substantial limitations that negatively impact their ability to live independently, such as challenges with language, learning and mobility.
The waiver provides up to $50,000 per year for each participant, a portion of which is reimbursed by Medicaid, which excuses the state from certain federal rules in order to fund long-term services for people with autism, helping them live at home rather than in an institutional setting.
Enrollment was long limited to only 120 slots. With a waitlist for the program growing into the thousands, state lawmakers added more slots incrementally over the last few years. By the end of 2025, 690 slots will be available. But the state estimates about half won't be used, despite a massive and growing backlog of people waiting for assistance.
Records reviewed by Connecticut Public show DSS has repeatedly missed its own internal targets to bring more participants on board as the number of slots increased.
At a November 2022 meeting of the state's Autism Spectrum Disorder Advisory Council, a staff member said the agency aimed to have 344 people placed in waiver services by the middle of the following year.
But as that date approached, only 335 were assigned to case managers, of which just 187 were actually receiving services, according to information presented at a later meeting.
"Oh, we can do better. Wow. That's disappointing," former council member Doriana Vicedomini said at the time.
DSS also suffered numerous administrative setbacks, including the departure of an employee who managed the autism waiver program. Weston told the council in January 2025 that a new manager was in place, but conceded progress was slow.
"We are not quite yet at our numbers where we wanted to be," she said.
Most recently, DSS aimed to reach 440 active waiver participants by July of this year, a goal that remains unmet, based on figures provided by the agency.
Bringing families on board
State officials say the complexity of the Medicaid process contributes to the delays. Once a new slot becomes available, participants taken off the waitlist must show they're eligible to receive Medicaid benefits, which can require steps such as setting up a special needs trust to preserve their financial assets.
Onboarding new clients can take as long as a year. Case managers are essential to the process because they coordinate care and services in Medicaid waiver programs. They help create personalized care plans, and connect participants with providers and resources.
DSS currently has eight case managers who handle onboarding for the program. It received funding to fill two new case manager positions in July 2024, but experienced delays in the hiring process. After a series of stops and starts, it began soliciting candidates for the positions in late October 2025, shortly after Connecticut Public posed questions to the agency about the unfilled positions.
Jalmar De Dios, a spokesperson for DSS, said those positions remained empty because Connecticut sharply reduced hiring for state positions in 2025 in an effort to save money. Changes in leadership at DSS also interrupted the process, he said.
That's problematic, according to Toubman.
"If there's only so many case managers, do the math," he said. "You can only do so many slots."
Connecticut struggles to keep providers
DSS received funding in July 2025 to hire an additional five case managers, with the goal of eventually employing 16, but the agency won't reach that level this year, De Dios said.
Part of the reason DSS isn't planning to hire for those five additional positions is the lack of providers, he said.
Medicaid reimbursement rates are lower in Connecticut than in neighboring states like New York and Massachusetts, according to a 2024 state study. It found many areas of care covered by Medicaid are currently reimbursed at the same rates they were in 2007.
As a result, some autism service providers in Connecticut don't accept Medicaid patients, or limit the number they see as they struggle to keep up with their own costs.
"The reality becomes this: We hire these five people, but to do what?" De Dios said. "Until we can stabilize our provider network and bring more people in, we really have to do that balancing act of being responsible to make sure we are safeguarding taxpayer money while being responsive to the needs of the network."
Alisha Simpson-Watt, a provider for autism-related services, said her health clinic is exploring ways to bring in revenue without cutting patient care. The facility provides Applied Behavior Analysis therapy (ABA), a treatment for autism that reinforces positive behaviors.
"Reimbursement rates [under Medicaid] have always been under par and have been lower than other funders," she said. "For us personally, we do try to look at other avenues."
Simpson-Watt said her clients are not on the state’s autism waiver waitlist. The ABA services her clinic offers are covered by Medicaid and private insurance. But patients using private insurance to access them also face long delays. Simpson-Watt said nearly 200 families are on a waitlist for ABA services at her clinic alone.
Lawmakers this year increased rates for a small collection of autism services, including respite care. State Rep. Jillian Gilchrest, who previously voted to expand the autism waiver program, said pay hikes are sorely needed to attract and retain providers.
"Many of these services are paid for by the state, and so it's the state that's not reimbursing those nonprofits the living wage they need in order to attract the workforce," Gilchrest said.
Bonnie Roswig, a senior attorney at the Center for Children's Advocacy, said Connecticut needs to pay providers fair wages, and also address administrative shortcomings at DSS.
"The state is not committing the resources, not only to the program, to their staff, but also in terms of reimbursement rates," Roswig said.
Desperate to access care
In Stamford, 16-year-old Ava Font was on the autism waiver waitlist for two years, according to her mom, Nancy Camp. In those years without early intervention, Ava struggled to regulate her emotions and was unable to attend school regularly, Camp said.
The family found a solution through sheer serendipity. In addition to having autism, Font is cognitively impaired, making her eligible to get services through a different state program designed for those with an IQ below 70.
"It was literally just happenstance," Camp said, explaining that she learned her daughter was eligible for placement in the other program during one of her periodic calls to check her status on the autism waiver waitlist.
But Camp believes the delay was harmful. Later in life, Ava spent time in a psychiatric hospital. Had Ava been treated sooner, she might not have struggled as much, Camp said.
Parent Michelle Kaplin said her 19-year-old son had a similar experience, spending time on the autism waiver waitlist before becoming eligible for services through the other program because of an intellectual disability.
"If you have an IQ of above 70, you're basically out of luck in the state of Connecticut," said Kaplin, a psychiatric nurse in Monroe who specializes in treating children with autism.
Today, Kaplin's son is in a transition program at Post University in Waterbury and works part-time at a grocery store under supervision, which he pays for from his earnings, she said.
Kaplin said her son's independence was made possible because he began to receive autism services from the state of New York as a toddler living there. Early intervention is everything, she said.
In the absence of services, more parents are turning to Kaplin for psychiatric help, she said. In one case, the parents of a 4-year-old reported their child jumped out of a car, she said.
"They were horrified, and they didn’t know what to do," she said. "They had applied to be on the autism waiver and got the letter that everyone else did — that they were eligible but there’s a waitlist. So I had to medicate the child.”
Increase in autism diagnosis
Rising demand for services in Connecticut comes amid an uptick in autism diagnosis. A recent study published by the Centers for Disease Control and Prevention found that among 8-year-olds, an estimated 1 in 31 were identified at sites across the country as being on the autism spectrum in 2022, up from 1 in 36 in 2020.
James McPartland, a director of the Center for Brain and Mind Health at the Yale School of Medicine, said increased awareness of autism contributes to the rising numbers. Parents, preschool teachers, pediatricians and others in regular contact with children are much more likely to be familiar with the signs of autism in developing children, he said.
Diagnostic criteria have also changed, redefining the characteristics of those on the autism spectrum.
"In general, the trend has been towards including milder and more cognitively able forms of autism, relative to diagnostic practices in the 1980s and prior," McPartland said. "For this reason, individuals who might not have met diagnostic criteria may now be eligible for a diagnosis."
McPartland emphasized that rather than there being an epidemic of autism, these individuals have always been a part of society.
Back at Kosminoff's house, the saucepan bubbles with water for pasta. It's Keighan's lunch for school the next day, and the sight makes him happy – especially when he spots a candy apple on the counter.
"Yeahhhh! You're going to give me that for lunch?" he asks.
His mom confirms his hunch, and Keighan lets out another, "Yes! Yeahhhh!" He gives her a hug, leaving her winded from his show of affection.
There's no respite from this labor of love, as Karen Kosminoff shows up day after day as his caregiver.
"I don't have a choice," she said. "I'm his mother, and I'm it. If he didn't have me, where would he be?"
