When did you learn to tie your shoes? Chances are that it happened when you were pretty young, with an adult or older child showing you the ropes (so to speak) until you got the hang of it. Maybe you were forced to learn it again in a rehabilitation facility after a severe brain injury. Or possibly, you learned it when you were receiving habilitation services: life-skills training for disabled people who never acquired these skills to begin with due to severe cognitive, intellectual or developmental disabilities.
Habilitation is critical for disabled people seeking more independence, as well as their families and caregivers. A wide range of services can fall under habilitation, including cognitive therapy, basic physical therapy, speech-language therapy and more. The precise services required depend very much on the person: one autistic child might need speech therapy, for example, while another might need physical therapy to help her become stronger and more coordinated. Such services can be the difference between community-based living and institutionalization for disabled people, can help people be more active in their communities and can give people a sense of purpose and independence.
That’s why disability advocates are delighted that habilitation is one of the services mandated under the Affordable Care Act (ACA). If it’s deemed necessary for a patient, insurers have to cover it. This sounds like a win-win, right? A doctor evaluates a disabled person, recommends habilitation and away she goes to get the treatments she needs — up to and including rehabilitation if she experiences a setback as a result of an injury, fall, or other life event.
But, there’s a problem. Actually, there are a couple of problems. The major overarching issue is that under ACA, individual states get to decide what falls under “habilitation” and thus what gets covered and what does not. This means that disabled people could receive very different standards of care in different states; a child with Down Syndrome in Massachusetts, for example, might get extensive speech-language therapy, while a child with a similar level of impairment in North Carolina might not. These variations in care could be devastating, especially for patients who need therapies that are not covered in their states.
States could put limits on the numbers of visits to therapists, which represents a serious barrier to progress in habilitation therapy. By capping spending on habilitation or the number of visits, or lumping habilitation and rehabilitation under the same benefits program, insurers could save money, but insured people would lose out. Habilitation can, for some people, take months, years, or a lifetime, and the changes for patients can be very dramatic when they are yanked out of habilitation programs. Someone who benefits from swimming three times a week with a therapist, for example, could rapidly lose muscle tone, mobility and motor control.
Thanks to problems with the enrollment system, it’s been hard for advocates to actually read through detailed insurance policies spelling out what will be covered, which makes it even harder to determine how to move forward. Undoubtedly, several states will face legal challenges based on their level of coverage, as will insurers; not the first, and certainly not the last, litigation over ACA.
In this case, the litigation will be especially important for the developmental disability community, which is counting on ACA to address a number of shortcomings in the current health care system that leave disabled people particularly vulnerable to lapses in care.
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