County announces waiting list for Early Intervention, blames state

• County Department of Health will start a waiting list for children under 3 who need special ed services
• The waiting list is in response to a lack of service coordinators who serve as the navigator for families
• Several outside agencies have recently stopped doing that work citing inadequate state reimbursement rates
• County Executive Cheryl Dinolfo said that the decision is the result of inadequate state reimbursement rates

The Monroe County Department of Health has told Early Intervention providers it will institute a waiting list for children under the age of 3 who need special education services, a response to its worsening workplace shortage that children's advocates say will lead to a violation of state and federal law.

At the same time, County Executive Cheryl Dinolfo went on the offensive at the Legislature's Human Services Committee meeting Tuesday, pledging that fixing the state's "broken rate-setting structure" for Early Intervention will be the county's top lobbying priority in Albany next year.

There is a pressing need for special education teachers and speech, physical and occupational therapists in the county, but the waiting list is in response to a lack of service coordinators who serve as the navigators for families. That position does not require as much specialized training and in theory should be easier to fill.

Several outside agencies have recently stopped doing that work, though, citing inadequate state reimbursement rates, and the county's own coordinators are not enough to make up the difference. The shortage creates a critical bottleneck, as families cannot access any services at all until they've been paired with a coordinator.

The Democrat and Chronicle reported on the burgeoning crisis in September 2017 and legislative reform efforts have been stymied for years.

In an email to local service providers last week, Monroe County Special Children's Services Administrator Ann Marie Stephan said the county will establish a waiting list effective Dec. 1. It is also hiring two new coordinators, for a total of 15, but Stephan conceded that more are needed.

The waiting list means that starting next month, infants born with identified developmental issues such as a hearing loss will not immediately be referred for  services but instead will be "put on a shelf," as one speaker Tuesday night said. 

Establishing a waiting list is not unlawful on its face but essentially concedes that many children will not be seen within the legal time frame.

Advocacy efforts at both the county and state levels for increased state funding are already well underway. The Children's Agenda recently gathered more than 1,100 letters in support of greater funding during an interfaith advocacy event, and an online petition by Step By Step Developmental Services had garnered 4,400 signatures by Tuesday evening.

The Children's Agenda also circulated an alarm over the waiting list, calling it unlawful and asking the county to hire at least six new service coordinators while at the same time advocating at the state level.

Those advocates said the waiting list for services would inevitably place the county in violation of state and federal laws requiring that children be evaluated for services within 45 days of being referred — a deadline that has proven increasingly challenging to meet, waiting list or not.

"I've never heard of it," Children's Institute Executive Director Dirk Hightower said. "To say you’re going to have a waiting list, you’re just opening up doors (to a legal challenge). ... It definitely seems to be an illegal act."

A spokesman for the state Department of Health said he was not aware of any other counties in New York that have instituted an Early Intervention waiting list. He said the state "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."

Dinolfo did not address the waiting list but instead blasted Cuomo and the state Legislature: "(Their) outrageous and inexcusable inaction has directly led to the crisis we face in Early Intervention," she said. "The county simply can’t hire its way out of this challenge."

The Legislature in the last several years has declined to make significant changes to the funding mechanism or level, while Gov. Andrew Cuomo and his budget director last month said they were unaware of the entire issue.

Dinolfo said scrounging for money to hire more service coordinators would be a "Band-Aid" on a larger problem. 

The parade of therapists, special education teachers and parents addressing the County Legislature agreed with her on the root problem but said a Band-Aid is exactly what is needed at the moment. They urged the county to find emergency funding until the state acts.

"When you’re hopeless and trying to do anything you can to help your child, a wait list is the last thing you want to encounter," one mother, Kelly Crosby, said.

Brittany Jencik spoke alongside her 6-year-old son, who was born at 22 weeks weighing 1 pound and endured nine surgeries in his first year of life. Doctors initially projected he would live for six months, or else spend his life attached to machines; Jencik credited his Early Intervention specialists with beating those odds.

"He had a team all along that believed in him and did nothing but pour their hearts and souls and time and efforts into his challenges," she said. "They literally saved his life. … We need to do whatever is necessary to keep referrals moving and services continuing so children in this community can get what they deserve and what they need."

Hightower and others had already been contemplating a class-action lawsuit to force a solution to the reimbursement issue, and Dinolfo said Tuesday she would join in such an action against the state. The county's decision to institute the waiting list, though, puts its inability to comply with legal deadlines into writing and could potentially move it from plaintiff to defendant.

JMURPHY7@Gannett.com