Limited financial assistance for Children with Special Health Needs could be granted at the discretion of the commissioner of the Department of Health

The Office of Children with Special Health Needs may backpedal on its plan to phase out its financial assistance program.

Children with Special Health Needs faced a strong backlash from families of children with special needs and disability advocacy groups after it proposed to terminate its payor of last resort program.

The office currently covers costs not met by families’ public or private insurance plans for approximately 400 families, about 20 of which have neither Medicaid nor private insurance. The Shumlin administration proposed the elimination of the program as an administrative rule change that must be approved by lawmakers.

The Financial Assistance for Respite Rule is currently under review by the Legislative Committee on Administrative Rules.

At a committee meeting on Nov. 29, Steve Brooks, operations director for CSHN, suggested adding language to the rule that would leave the door open for Children with Special Health Needs to act as payor of last resort.

The proposed addition would read, “In the discretion of the Commissioner of Health and subject to the availability of funds, limited financial assistance may be granted in extraordinary circumstances to children eligible under Section 4 of this rule to assist with medical expenses not covered by insurance or available from any source.”

Brooks reiterated, however, that Maternal and Child Health division of the Vermont Department of Health (of which CSHN is a subdivision) intends to refashion CSHN to become a “public health entity” rather than a “direct service provider.”

“We’ve maintained our financial assistance coverage by very narrowly defining eligibility for our program,” Brookes said. “In doing so we exclude children with arthritis, diabetes, childhood cancer, blindness, and significant vision loss, to name a few.” He testified that this is a major concern not only for the division of Maternal and Child Health, but also for health care providers and parents whose patients or children do not currently qualify for assistance from CSHN.

Pam McCarthy, president of the Vermont Family Network, said the development was encouraging but, she said, “I really want to see the detail … there is so much ambiguity.”

McCarthy said the network works closely with Office of Children with Special Health Needs, and she said, “they have had a very difficult time” of playing the role of payor of last resort.

She told lawmakers that “families are rightfully worried about the unknowns, and we need answers before a system that has worked for them is radically altered.”

Follow Alicia on Twitter @aefreese

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