When Monroe County scrapped a planned waitlist for families looking to get their children evaluated for developmental delays late last year, advocacy groups said it had narrowly avoided running afoul of state and federal laws.
Those evaluations determine whether a child under 3 years old qualifies for a slate of special therapy and support services called early intervention. But the move to abandon the waitlist for evaluations sparked a new problem: a surge in the number of children who are approved for early intervention but cannot find a provider.
The county tracks children who are supposed to be receiving early intervention, but have not yet been matched with a provider, in a set of spreadsheets called capacity lists. Those lists have grown more than 900 percent in the last year, from 13 entries in January 2018 to 133 in January this year.
The year-over-year increase for December was nearly 1,800 percent, from five entries in the last month of 2017 to 94 in 2018.
[You should see an interactive graph next. If you don't, refresh the page or click here. Story continues below.]
The spreadsheets are not available to the public, but WXXI News confirmed these numbers with five local early intervention providers who receive them directly from county early intervention administrators.
Therapists said they are being driven out of the field by payment rates set by the state that have remained stagnant for decades.
“It’s scary, and it’s sad,” said Liz McGregor, who is a speech-language pathologist based in Fairport.
Children are “not getting the support they need now while their brains are still young and developing,” McGregor said. “This is the time. So much critical development takes place in these first few years of life.”
McGregor and other therapists said a delay in getting early interventions when children are young can adversely affect the rest of their life’s trajectory.
“If you don’t get help with speech therapy, you have trouble communicating. You have trouble making friends. You have trouble socially. You move through life without the same tools as everyone else,” McGregor said. “Starting early is urgent.”
Monroe County approved Bridget Morgenstern’s twin boys, Connor and Colin, now 3 years old, for early intervention 14 months ago. One of the services they were supposed to get is one-on-one speech therapy. It took seven months to find a provider, Morgenstern said.
Then, two months after the boys started therapy, that provider took disability leave, leaving them again with no speech therapist at a time when, Morgenstern said, they were just starting to verbalize their thoughts.
“The dirty secret is, that has been the case for years,” said Jesse Sleezer, Monroe County’s communications director. “There have been families and kids waiting for specific, direct early intervention services, in some cases for weeks, in some cases for months, and in individuals with very complicated needs, there have been families and children who in some cases waited for years.”
But therapists who work in early intervention said that misses the point: The growth in the capacity list over the last few months has been explosive.
It’s a sign of a system under intense stress, said Randi Levine, the policy director at Advocates for Children of New York.
The early intervention program is overseen by the state, which is responsible for the therapists and sets their reimbursement rates, Levine said. The county’s role is to ensure that children who qualify for early intervention get connected with a provider within 30 days. But the county can’t make those connections if the state doesn’t have enough therapists.
And neither wants to take responsibility for what advocates said are essential fixes. Sleezer said in an email that the dwindling number of early intervention providers is the state’s problem to solve.
“EI is a state-mandated program, and under the rules and regulations governing its operation, only the state is authorized to approve EI service providers and only the state can set the reimbursement rates those providers receive,” Sleezer said. “This is a complex problem, but the solution is exceedingly simple – the state must raise its reimbursement rates.”
Jill Montag, a public information officer for the state health department, which oversees the early intervention program, said the county has tools it’s not using that could expand access to early intervention.
“Monroe County could choose to contract with other qualified, state-approved early intervention providers to fill gaps in services in their region,” Montag said. The county is responsible for ensuring that early intervention services are provided to eligible children and their families who live there, she said.
The county disputes that contracting directly with early intervention providers is an option open to it under state law. Sleezer said the state seems to be relying on an outdated version of the public health law, and that the provision allowing counties to contract with providers has since been struck. "We don't have that ability, under the state's own law," he said. The state health department has not responded to requests for clarification from WXXI News.
Gov. Andrew Cuomo’s proposed budget includes a 5 percent increase in reimbursement rates for some early intervention service providers. That’s not enough, said Heather Hanson, chief operating officer at Step-by-Step Developmental Services, which is an early intervention provider.
“That won’t pull people who have left early intervention back in,” Hanson said. “That will not make up the shortage.”
And, Levine said, the governor’s proposal only covers certain categories of early intervention providers. Among the providers who are not included in the rate increase are special education teachers, teachers for blind or deaf children, and psychologists. Those people are needed in early intervention but will continue to be drawn away to other service sectors by more competitive salaries, said Levine.
The dramatic growth in Monroe County’s capacity list shows that in its current form, the system is unsustainable, said McGregor, the speech-language pathologist in Fairport.
“I see early intervention imploding. I see it coming to an end,” McGregor said. “It can’t thrive. It cannot continue. The program cannot continue the way that it’s going.”
This story is reported from WXXI’s Inclusion Desk.