George Mamantov was revved up for his music therapy session Saturday in Evanston. The 10-year-old with straw-blonde hair and glasses is very social, his mother Laura Tillotson said, always happy to pull strangers and familiar faces into the room to share his love for music.
This session is one of four different therapies George is currently undergoing to deal with the symptoms of the rare chromosome disorder he was born with. Chromosome Ring 21, the condition George has, affects his ability to speak, swallow, maintain balance and control motor skills.
The music therapy is not eligible for insurance reimbursement, but for habilitative therapy such as speech, occupational therapy and physical therapy, his parents try to filter the costs through both their health insurance packages.
"Every year we have this conversation of should we re-up on the double insurance,” said Tillotson. “It's a big chunk of change every month that we're investing in,” Tillotson said, adding that she couldn’t imagine what it would be like if they didn’t have this support.
“The therapy itself has been so hugely helpful,” Tillotson said.
Coverage of these services affects one in seven U.S. children, like George, who face developmental delays and disabilities, according to a brief issued by the George Washington University School of Public Health and Health Services.
The Affordable Care Act, which takes effect Jan. 1, lists habilitative services— defined by the National Association of Insurance Commissioners as health care services that help a person keep, learn or improve skills and functioning for daily living—as one of ten "essential health benefits" provisions. These provisions regulate health plans in individual and group markets of less than 100 employers who need to provide the benefits in order to be certified as qualified health plans.
While in some states like Illinois, where the health policy pertaining to habilitative services is clearly defined, the ACA will create more access to these services. In other states, the future is less certain. The reason is that when it comes to implementation, federal law defers to state policy to define the scope of essential benefit coverage.
“The state has the first dibs on regulating,” said Sara Rosenbaum, who authored the GWU legal brief funded by the Lucile Packard Foundation for Children’s Health.
Illinois defined a benchmark for its essential health benefit services in Sept. 2012; it also has a state law, enacted in 2009, asking private insurers to cover habilitative services.
Dr. Alan Rosenblatt, a specialist in neurodevelopmental pediatrics in Skokie helped advocate for the state law after he moved to Illinois in 2003.
“I was having trouble with my patients being eligible to receive the necessary therapies that they needed to get better,” he said.
Another way that Illinois residents may benefit after Jan. 1 is through state-run programs that provide habilitative therapy for Medicaid patients.
On July 7, Gov. Pat Quinn signed legislation expanding Medicaid coverage to more low-income residents, which is optional for states under ACA. Adults with annual income below 138 percent of the poverty line (about $32,000) will be eligible for coverage, according to the press release from the Illinois Department of Health Services, and the agency expects an enrollment of 342,000 people by 2017.
Although Medicaid expansion will help make general medical benefits accessible, Rosenblatt said, in practice, the benefit is limited when it comes to habilitative care.
“My experience in Chicago is that there is a limited availability of providers of habilitative services under Medicaid, and so accessibility is an issue," he added.
In the absence of state specifications, the health plans can offer one of two options; either they can offer habilitative services at parity with rehabilitative services (that help restore skills lost due to accident or illness) or they can substitute habilitative services with rehabilitative services.
According to the GWU brief, several health plans opt for the latter option, especially in large-group markets with more than 100 employees. One reason mentioned is that by offering rehabilitative services instead of habilitative the companies incentivize the health plans for adults, who may be more likely to undergo illnesses or injuries and need rehabilitation.
Activist organizations like the Habilitation Benefits Coalition critiques this approach as discrimination against people who are born with developmental disabilities.
"So basically if an employer has enough employees that are demanding this kind of coverage,” Rosenblatt explains. “It's really up to the discretion of their individual company and their own philosophy, but most companies don't go out of their way to provide coverage of habilitative services."
Rosenbaum's brief suggests state health policy is where advocates might best concentrate their efforts to make sure habilitative services are included in the scope of essential benefits.
Including Illinois, there are 37 states that have laws on the books addressing habilitative services. The state law in Maryland, which Rosenblatt pushed for before he moved to Illinois, wasn’t expensive to implement—it was less than 0.1 percent of the entire health care premium, he said.
“(The) impact financially of covering habilitative care services is not a big-ticket item,” he said. “It produces equality in terms of how care and services are distributed among patients who are in need of these therapies.”
He added that although it would be nice if all states had such laws, even just a widely applicable minimum standard would be sufficient.
For Rosenbaum, the absence of a national standard is conspicuous. “It’s just a total abdication of responsibility,” she said.