On a bad day in Antoinette Snow’s quest to get medication management services for her 15-year-old grandson, who has an autism diagnosis, the call goes something like this:
“We no longer participate in HUSKY.” Click.
On a good day, it’s more like:
“I would be glad to take you in, but I don’t participate in Medicaid or HUSKY. I’ll give you a number to this doctor that does.”
But another call reveals that the new doctor isn’t taking new patients.
It’s been the same way for the past few weeks. Snow’s grandson, Jaylen Poole, was discharged from a group home in December. His psychiatrist through the home gave him three months’ worth of prescriptions to carry him through until he found someone new.
But his grandmother isn’t sure she’s going to find someone by March. And through the waiting, her grandson’s behaviors are getting worse.
“He starts throwing stuff,” Snow said. “He does get aggressive sometimes. The doctors said most of that is communication issues. … He gets angry, and he lashes out.”
Kids across Connecticut, like Jaylen, are in a holding pattern. They’re wait-listed for autism services such as therapy and medication management, and while they wait, behavioral issues that need quick and consistent intervention are solidifying, parents and providers said.
If they don’t get the help they need, they are often at heightened risk of needing to be institutionalized or hospitalized because of their mental health issues.
Federal law requires that kids with autism diagnoses receive “timely and adequate medically necessary services,” a Dec. 15 letter from disability and child advocates to state officials said.
Reimbursement rates for Medicaid in Connecticut, where the program is known as HUSKY, are too low for autism behavioral services, providers and advocates say. They’re the lowest in New England.
It means providers are losing money when they offer services to kids with HUSKY insurance. Many have either added more patients with private insurance to their workload or aren’t accepting the public option, providers and advocates said.
“Kids with autism and other developmental and intellectual disabilities are really underserved,” said Sarah Eagan, Connecticut’s child advocate. “No one has ever pushed back on that — everyone acknowledges that.”
Despite that widespread acknowledgement, kids aren’t getting the help they need, she said.
Kids who have HUSKY insurance are typically in families with lower incomes and are disproportionately likely to be Black or Hispanic.
Connecticut, like the rest of the country, is also seeing an intensified need for behavioral health services for kids since the COVID-19 pandemic.
“It’s a very long waiting list,” said Yann Poncin, a child psychiatrist at the Yale Child Studies Center. “Historically, in the last 20 years … we never had a waitlist. We saw families either for emergencies within a couple of hours or routine within a couple of weeks. That wait listing expanded up to 9 months [recently]. Now it’s probably hovering at about 6 months.”
The state legislature commissioned last session a study on parity for the reimbursement rates that was due in January. But the study isn’t done. It’s not even started.
The Office of Health Strategies requested an extension to finish the report, which lawmakers approved. But, advocates say, an extension to July would mean the legislature wouldn’t have the report until a month after they adjourn, cutting down on the likelihood that they’ll act on the matter.
“OHS says we’re so busy, we can’t get to it,” said Sheldon Toubman, a litigation attorney for Disability Rights Connecticut. “It’s a delay which guarantees that the report will come out too late.”
Kimberly Martone, former interim executive director at the Office of Health Strategy, said while July is the deadline, the office hopes to have the study done before then. Martone stepped down from the role at the start of the year when Gov. Ned Lamont’s new appointee, Deidre Gifford, took over.
The office had retirements that slowed the start of the procurement process to find the contractor who would conduct the study, and state guidelines say the process of finding a contractor should take about six months, according to a Dec. 20 letter from Martone to several advocates who work on issues related to people with disabilities and children.
“We will get that to them as soon as possible, knowing that it’s dire for them [the kids],” Martone said.
Advocates reached out to OHS, the Department of Insurance and the state’s Department of Social Services on Dec. 15 about their concerns on the reimbursement rates. DSS manages Connecticut’s HUSKY program.
Autism behavioral services are broken down into several categories including direct services, assessment and supervision. In Connecticut, behavior technicians must be supervised in order to provide services.
Connecticut’s rates for direct services, supervision and assessment are the lowest in New England. For instance, direct services are reimbursed at $11 per 15 minutes, while all the other states in the region are $15 or $16 per 15 minutes, according to data from the Council of Autism Service Providers.
The rates can make it difficult to recruit providers to the state, said Judith Ursitti, vice president of government affairs at the Council.
“You have rates that are less than what you would receive in Texas in Connecticut, and the cost of living is very different,” Ursitti said.
Benhaven, a nonprofit behavioral health provider with offices in North Haven and Wallingford, had to take on patients with private insurance because of the reimbursement rates, said Arlene Kaye, the nonprofit’s clinical director.
“We found relatively quickly that, given the current rates that Medicaid reimburses at, it would be very difficult, even for a nonprofit, to maintain any kind of programming with the current rates,” Kaye said.
Clifford Beers Community Care Center, a nonprofit provider in New Haven, hit similar barriers, chief executive officer Alice Forrester said.
The group wanted to offer a “one-stop shop” for people with autism, Forrester said. But the number of types of licenses needed and the reimbursement rates posed a challenge.
“Philosophically we wanted to do this because we know the Medicaid population is often underserved,” she said.
The clinic built up to about 800 clients and lost hundreds of thousands every year, Forrester said. The reimbursement rates don’t adequately cover the facets that must come together to provide behavioral services.
In order to treat a patient, the clinic has to have someone to work the front desk, a clinician, a case manager, supervisors who oversee the behavioral treatment, in addition to other administrative costs, she said.
“You add the more specific needs with the autism needs on top of it, and it’s not well-coordinated, it’s not reimbursed in a way that providers can sustain,” she said.
The Connecticut Department of Social Services first drafted reimbursement rates for autism services in 2015, based on costs of behavioral health services already in place. The state department worked with Beacon Health Option, a Boston-based behavioral health firm that works in several states, to calculate the rates, said William Halsey, the department’s deputy director of Medicaid and Division Health Services, in emailed responses to questions.
The rates were last increased by 4% in November 2021 and are “consistently under review,” Halsey said.
Beacon Health Option data shows a rise in the number of autism service providers in Connecticut over the past few years, from 38 in 2015 to 650 in 2021. Some of that increase is likely because HUSKY only started covering these services in 2015.
These providers — at 168 practices across the state — are responsible for serving thousands of children. Based on national statistics, there could be between 3,110 and 7,000 children on HUSKY insurance who have an autism diagnosis.
Not all kids with autism diagnoses require behavioral services, and some haven’t been able to get access to the care they need.
Two staffers at the Office of Health Strategies retired since legislators mandated a study into parity between rates paid by private and public insurers. Two more moved on to other state agencies.
That delayed the start of the procurement process, Martone said. The process typically takes about six months.
The office was assigned three studies during the last legislative session, and none of them is done, Martone said.
The office was allotted $500,000 for the parity study relevant to the autism services concern, she added. Officials hope to have it completed and passed along to legislators ahead of the new July deadline, but they don’t have a projection.
“We’ll continue to work diligently on this, but it is ultimately up to our vendor as to when this work begins,” Martone said.
The contractors will meet with the advocates who brought up the concern, she added.
Delays in autism services have come up a few times over the past few years, although it’s been a more pressing issue of late, Martone said.
Halsey, of DSS, also pointed to the demand for services as an explanation for delays in services.
“Separate from rates, the demand for services has historically outpaced the availability of service providers and practitioners even with the steady increase in autism providers year over year,” he wrote in an email to the CT Mirror. “One reason for the potential delay in accessing services is that in many cases autism providers need to hire new behavior analysts in order to initiate services.”
Jaylen, who has lived with his grandmother since 2017, struggled when he and his classmates were sent home when COVID-19 struck in March 2020. He had a hard time with online courses, and his schedule was off.
He’s reverted to some of the behaviors he had when he first moved in with his grandmother — some troublesome issues such as running away and urinating on the floor.
“At home, there’s no structure,” Snow said. “I let him do whatever he wants to. Now that he’s got older, if you tell him 'no,' he doesn’t want to hear that. That’s when he starts throwing stuff. He does get aggressive sometimes. The doctors said most of that is communication issues.”
Just a few weeks ago, he had to be hospitalized after an outburst left his grandmother overwhelmed. They were driving home after an appointment in New Haven, and she knew something was wrong when he declined an offer to get Taco Bell on the way home.
He started kicking after that — first the dashboard, then her. She had to stop in the evening rush traffic until the outburst stopped. Then, worried, she drove him to the hospital.
He had another outburst there and started running down the hall. A security officer came to help, but Snow panicked when Jaylen started throwing things and the officer’s hand drifted to his gun.
She worries that people don’t see the boy she sees — the one who is smart, who feels calmer when they take long drives to the beach, who loves to spend hours working on puzzles. And she worries that one day, if he doesn’t get help, he’ll be in danger.
“He’s smart. He’s not like how they describe him,” Snow said. “They see him as a juvenile delinquent. He’s not like that. He has autism.”