Just What Are 'Habilitative Services'? Hint: Think Health Insurance and Chronically Ill Kids

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Taylor Gaydon (R) -- a 15-year-old with Type 1 diabetes -- prepares to zipline with friends at a weekend diabetes camp in Livermore. (Photo: Elaine Korry)

You're likely familiar with rehabilitation -- physical therapy after an injury would fall into this category. But parents with chronically ill children are all too familiar with a different type of service -- habilitation service -- as Elaine Korry detailed Monday morning for The California Report.  From her story:

"Habilitative services are really just making sure that a child can thrive in the world that they’re living in, so, for example, hearing aids are a habilitative service," says Kelly Hardy, director of health policy at Children Now, a statewide advocacy group.  ...

Dr. Thomas Long, a health financing expert with the American Academy of Pediatrics, says it helps young patients, like deaf kids, attain health in the first place.

"Habilitation implies skills that have not yet been developed," Long says. "For example, speech therapy. It’s terribly important for children to learn to speak well.

Habilitation is also important for kids with a chronic disease, such as asthma or diabetes.

California's implementation of the Affordable Care Act is in full swing. It takes effect next Jan. 1. The federal health bill left it to states to determine their own benchmark health insurance plan that would be offered in the health benefit exchange -- as long as that plan offered benefits across the 10 categories required by the ACA.

[Related: People with Disabilities Who Need Habilitative Services Face Complex Choices Under Obamacare]

One hitch is that the federal government did not define exactly what was meant by "habilitative services," so California legislators stepped in when they passed AB 1453 last fall. That bill defined the benchmark plan in California, and legislators defined 'habilitative services' this way:

“Habilitative services” means medically necessary health care services and health care devices that assist an individual in partially or fully acquiring or improving skills and functioning and that are necessary to address a health condition, to the maximum extent practical.

These services address the skills and abilities needed for functioning in interaction with an individual’s environment.

Examples of health care services that are not habilitative services include, but are not limited to, respite care, day care, recreational care, residential treatment, social services, custodial care, or education services of any kind, including, but not limited to, vocational training. Habilitative services shall be covered under the same terms and conditions applied to rehabilitative services under the plan contract.

Did you catch that? The passage lists not only what is included and but also what's not included. In Korry's piece, she interviewed the family of a teenage girl who has Type 1 diabetes. The entire family has learned a lot about managing the disease in a diabetes camp, a retreat sponsored by the Diabetic Youth Foundation. From Korry's report:

It’s a place where kids with a life-threatening disease, like 15-year-old Taylor Gaydon, can have fun while learning to manage their disease.

"I usually check my sugar 8 to 10 times a day," Gaydon says, "and I don’t think I’d be as good taking care of my diabetes without camp. It really helped. ...

Fun activities such as zipline plunges and scavenger hunts are just a small part of the weekend’s events. Program director Janet Kramchuster says most of the time is devoted to education.

"We talk about carbohydrate counting, we talk about insulin adjustments," Kramchuster says. "We talk about how the family is functioning as a unit. We really delve into intensive education that cannot be covered in a 15-minute doctor’s appointment."

The Diabetic Youth Foundation subsidizes most of the cost of running this camp.  Families pay the remainder, usually out of pocket. Those with chronically ill children often face expenses for vital services their insurers don’t cover. But children’s advocates say that under the Affordable Care Act, support services must be covered by insurance, if they fall into habilitative services category.

So, is a diabetes camp a habilitative service? Maybe, maybe not. It depends how individual health plans are written. Charles Bacchi with the California Association of Health Plans says the challenge will be in finding a balance. The more generous a benefit package, the higher the premiums. From Korry's report:

"We’ve got to look at things that are medical," Bacchi says, "provided by licensed providers -- and not try and shift social and educational costs into the health care premium dollar, because that will inordinately increase premiums and make health care unaffordable for millions of Californians."

That’s one argument. On the other side, advocates for kids with chronic illnesses say a broad array of service, including social supports and education, arm patients with vital knowledge. Again, Diabetic Youth Foundation’s Janet Kramchuster.

"That knowledge prevents the ER visits, and it helps reduce complications down the road," says the Diabetic Youth Foundation's Kramchuster. "Talk about a savings for insurance companies."

Support for Elaine Korry's reporting comes from Lucile Packard Foundation for Children's Health Journalism Fund at USC Annenberg School for Communication and Journalism.