Pia Stampe is unsure how long she’ll be able to stay in business.
“If we don’t get referrals, then we can’t operate,” Stampe said. “We were better paid in 1995 than we are today.”
Stampe is the owner of Step By Step Pediatric Therapy Center in Rochester. Many of her referrals come through a state program requiring that children who show signs of developmental delays are evaluated and connected with appropriate therapists. The county has 45 days to make those connections.
Now, Monroe County is set to become the first in the state to put those children on a waiting list before conducting the evaluations.
“We’ve long been seeing delays in starting the interventions,” said Pete Nabozny, policy director at The Children’s Agenda. “But this is the first time we’ve seen a waitlist before even evaluating children to see whether and what sorts of interventions they qualify for.”
It’s a move that Nabozny and other advocates say brings the county dangerously close to violating the law, and is likely a warning sign for the rest of the state.
“Monroe County does seem to be, you know, the canary in the coal mine,” Nabozny said.
“Every day that a child is on a waitlist and that process has not even started makes it harder and harder for the child to get their plan within the 45 days required under the law,” said Randi Levine, policy director at Advocates for Children of New York. “No other county in New York has announced a waiting list, but other counties across the state are facing identical problems."
The fundamental problem, say advocates, service providers and Monroe County officials, is money.
“The simple truth is that low reimbursement rates haven’t kept up with the costs,” said Monroe County executive Cheryl Dinolfo. “It just doesn’t make sense, financially, for many private agencies to continue partnering with the early intervention program in the state of New York.”
Nabozny said the amount of money that therapy providers get from the state is lower now than it was when the program began in the 1990s. That pushes qualified therapists into more lucrative fields, or out of New York state entirely, he said.
The state health department did not respond to specific questions about reimbursement rates from WXXI News, but in a statement, a spokesperson said that the department "has been in communication with Monroe County Department of Health officials about access to service coordinators to ensure that Early Intervention services are delivered in accordance with federal and state requirements."
Those low reimbursement rates are what Stampe says might drive her out of business.
“It’s already a situation where the part of our business that handles early intervention is operating at a loss,” said Stampe, explaining that she relies on other, more profitable parts of her operation to pay the bills.
In Franklin County, which borders Canada in the northeast corner of New York, Bob Frawley said the low state rates are resulting in a critical shortage of early interventionists.
“People who are qualified to provide these early interventions are leaving the North Country, or they’re working in different fields,” said Frawley, who sits on the New York state Early Childhood Advisory Council.
“At one point recently, we had 10 kids pending an evaluation,” Frawley said. “We don’t have a waiting list, per se, but we have kids who are waiting.”
And that delay can lead to a cascade of problems for young children and their families, Frawley said.
“You can’t wait if you’ve got a kid with a disability,” Frawley said. “Days matter.”
Alana Frank’s son Jack, who has Down syndrome, was less than a week old when he got his first evaluation for early intervention seven years ago.
“There was no waiting list then,” said Frank, 35, who lives in Webster. Jack started receiving speech, occupational and physical therapies within two months of his birth.
Acting so quickly was crucial, Frank said.
“I think I would have failed as a nursing mom,” without early help in developing Jack’s oral motor skills, she said. “The transition to solid food would have been delayed. That would have delayed other developmental skills down the line.”
Today, Jack is in a general education class at his elementary school, instead of a self-contained special education classroom. Frank chalks that up to the help they received early in his childhood.
This story is reported from WXXI’s Inclusion Desk.