The Financial Assistance for Respite Rule has a benign-sounding name, but it’s causing concern among those caring for children with special health needs.
That’s because the rule actually eliminates the comprehensive cost-sharing program for caregivers.
The two-page rule nixes the $700,000 payor-of-last-resort program, which is about 80 percent of the Children with Special Health Needs budget. It places the burden of paying deductibles, co-pays, and other costs back on families.
During a hearing on Nov. 15, distressed parents urged the Legislative Committee on Administrative Rules to reject the rule. Laura Eddy, the parent of two daughters with cystic fibrosis, told the legislators, “This is not about respite … this is about eliminating care.”
Breena Holmes, director of the Maternal and Child Health division of the Vermont Department of Health, which oversees Children with Special Health Needs, disagrees — “This is not another state program cutting vulnerable people. It’s actually kind of the opposite.”
The rule
As the name implies, the rule sets up a framework for families to receive “limited funding for short-term support and relief” from caregiving duties. But in the annotated version of the rule, it’s clear that what has been crossed off far outweighs what’s been added.
Children with Special Health Needs has traditionally acted as a payor-of-last resort for families without health insurance and for those with costs that fall outside the scope of their coverage on a graduated scale based on income.
These unmet costs include deductibles, co-pays, co-insurance, and goods or services that insurance and/or Medicaid don’t consider medically necessary. The new rule proposes to phase out this financial assistance over the next year and then terminates it completely by January 2014.
Steve Brooks, operations director for Children with Special Health Needs, testified that there are fewer than 20 families that have neither Medicaid nor private insurance.
According to Brooks, 70-75 percent of payor-of-last-resort funds go to families with Medicaid and 20-25 percent go to families with private insurance. Some families have both public and private insurance. He said one-on-one financial consultations with the uninsured families revealed that some of them were, in fact, eligible for Medicaid.
But the parents who testified during the Nov. 15 committee meeting said this often isn’t enough. Mark Sanborn said his family has private insurance and Medicaid, but when they traveled to Texas for a specialized cranial surgery for his child, the out-of-state doctors didn’t accept Vermont Medicaid. They would have had to foot 20 percent of the $87,000 bill if Children with Special Health Needs hadn’t stepped in to cover the cost.
Eddy said her family’s private insurance and Medicaid still leaves them shouldering the significant burden of co-pays, deductibles, and the wages she and her husband lose due to the intensive caretaking demands.
Heidi Pecott-Grimm, a registered nurse and cystic fibrosis coordinator at Fletcher Allen Health Care, testified that nutritional supplements, Motrin, and other medication accompaniment often fall outside the scope of coverage.
Brooks said Children with Special Health Needs is equipped to work individually with affected families to explore other coverage options and secure alternative means of financial support. Still a consultation sounds like a paltry substitute for families reliant on CSHN as a payor of last resort.
Brooks noted that an increasing number of families face annual deductibles from $3,000 to as high as $9,000, and Holmes acknowledged, “The individual patient piece of this is awful.”
Who else gets left out?
Nestled within the text is another key change: Children with Special Health Needs is, for the first time, defining its eligibility requirements. Though there was a general understanding that the program was intended for children, Holmes said, the lack of clear guidelines meant that in some cases people received services past the age of 21.
The new rule clarifies only children from birth to age 21 are covered, and it establishes income eligibility requirements for the first time. Now, only families that earn at or less than 500 percent of the federal poverty level will qualify for assistance.
Holmes said the 500 percent threshold is “not perfect,” but, she added, it is more generous than most federal programs, which adopt a 150 percent threshold.
This change allows Children with Special Health Needs to focus resources on families with the greatest need, Holmes said, but it forsakes families that fall above that threshold and those over the age of 21.
Identity change for CSHN
The rule does not come as the consequence of dried up funding. The Maternal and Child Health division wants to retreat from its role as payor-of-last-resort so that it can redirect money to more comprehensive “systems-based” services.
Brooks says Children with Special Health Needs was never intended to be a payor and the process for handling claims is riddled with inefficiencies and is carried out by hand rather than electronically.
Both he and Holmes pointed out that Vermont is an outlier in this regard— “We are the last state that does direct service … it’s not a natural fit for Children with Special Health Needs, ” Holmes said.
Funding for the Maternal and Child Health division of the Public Health Department dates back to 1935 when President Franklin D. Roosevelt first set up federal funding for women and children is part of Title V of the Social Security Act. States have to pitch in with a matching grant. Children with Special Health Needs’ total budget in fiscal year 2011 was $883,600 and nearly 80 percent of this was spent on payor of last resort expenses.
What does CSHN propose to do with the roughly $700,000 that will be freed up if they nix the payor of last resort program? A number of things, Brooks said.
They would broaden the eligibility requirements to incorporate children with diabetes, asthma, vision impairments, and cancer, among other afflictions, into the program.
They would expand the current respite program, which Brooks identifies as “one of the greatest unmet needs” of families. Brooks said they would also bolster their care coordination work, which helps families to navigate the health care system, and a program that assigns medical social workers that assist pediatric practices that serve children with special needs.
Proposed on the sly?
Holmes describes the rule drafting as “a five year process with family engagement, Vermont Family Network engagement, lots of stakeholders, working with doctors of families, and 20 drafts.”
Brooks said Children with Special Health Needs sent letters notifying all 1,800 families who have at one point benefited from the payor of last resort program of the proposed changes.
But the parents who testified during the Nov. 15 committee meeting offered a notably different impression of the process. Laura Eddy characterized the manner in which Children with Special Health Needs introduced the rule as “dishonest and deceitful”; Mark Sanborn, another parent, said he thought “it was done arbitrarily.”
In a memo to committee members, Karen Schwartz, executive director of Vermont Developmental Disabilities Council, asked that the rule be rejected on the grounds that CSHN had failed to maximize public input and created confusion among families by lumping the respite rule, the eligibility definition, and the elimination of the payor of last resort program into a single rule.
The Legislature’s take
After hearing a string of highly emotional testimonies, the Administrative Rules committee concluded that the rule needed more deliberation and will likely be brought before the entire Legislature in the upcoming session.
“There is no way I’m going to vote on this today,” Sen. Diane Snelling concluded.
Rep. Richard Marek, chair of the Administrative Rules committee, suggested the Legislature may be willing to pony up more money to enable Children with Special Health Needs to carry on as payor of last resort, but Brooks was hesitant.
When Marek asked Brooks to think about “what number would you need from the state end of the equation,” he responded, “we could come up with a number,” but “I would question very strongly if Children with Special Health Needs is where that number should go.”
“I would love if there was a pot of money set aside for these extremely vulnerable families,” Holmes said but, like Brooks, she stressed that Children with Special Health Needs was not cut out for this.
Holmes didn’t want to suggest a specific agency that could act as distributor of these funds, but she said family network agencies could have the capacity to carry out this role.
