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Kathy Shapell: American Health Care Act would hurt WV kids with autism

By By Kathy Shapell
Kathy Shapell

The Affordable Care Act (ACA) is not perfect, but repealing it without a better replacement would be devastating to 184,000 West Virginians, many of them children and seniors — who are enrolled through the ACA.

One of the groups at greatest risk is children with autism, a neurobiological developmental disability that affects 1 in every 68 children. The condition severely limits a child’s ability to communicate and engage in social relationships.

There are over 5,500 children with autism in West Virginia, and they stand to lose a lot if the ACA is repealed. The act provides essential, life changing therapy to them — and depending on the replacement, this critical coverage could be taken away.

Prior to 2011, children with autism who lived in West Virginia were excluded from coverage because their insurance companies considered autism a pre-existing condition. Even if their parents had health insurance, their policies specifically denied autism treatment.

Imagine the frustration and desperation of these parents. They knew that autism is treatable but were unable to provide that treatment to their child because insurance companies refused to cover it. Imagine if families dealing with other neurological diseases, such as Alzheimer’s disease, stroke, or multiple sclerosis, faced the same frustration.

Families who could escape moved to other states for coverage. The majority were trapped with no viable way to help their own children.

In 2012, the West Virginia legislature took notice of the egregious situation these families endured and passed HB 4260, an autism insurance law requiring public and private insurance companies to pay for evidence-based treatment of autism. While a welcome step in the right direction, the law only provided half-coverage and only impacted 23 percent of all the children with autism in the state (the other 77 percent either were on Medicaid or had self-funded insurance plans).

It took the Affordable Care Act to finally provide coverage to most children with autism. The ACA allowed children with autism to purchase individual health insurance plans that cover autism treatment.

The results have been remarkable in several ways. First and most important, this coverage provides evidence-based treatment that works. The cost of lifelong care for individuals with autism can be reduced by two-thirds with early diagnosis and treatment, according to the Autism Society of America.

With the ACA, our state is saving taxpayers’ millions of dollars in lifelong care by giving them access to early, effective treatment. In many cases, a child will ultimately be able to attend school in a regular classroom with his or her peers and go on to lead a productive life.

Second, there’s the economic impact from the increase in therapists. The ACA has helped create hundreds of new jobs around autism therapy. Repealing the ACA could endanger those jobs.

Third, access to evidence-based autism treatment is preventing young families from leaving West Virginia. With our state steadily losing population, we need to do everything we can to encourage young families to stay.

Given the obvious benefits of the ACA — to families, to children and to West Virginia — it makes no sense to repeal it without a replacement that offers the same or better coverage. The American Health Care Act (AHCA) passed by the House of Representatives on May 4, is not the answer.

At risk again is pre-existing conditions. While insurers could not deny coverage to people with pre-existing conditions under AHCA, it is highly probable that they will drastically increase their premiums as they would legally be allowed to do so. This would present an undue hardship on West Virginia’s neediest families.

We have seen firsthand the devastation that autism can reap. And, we have also seen what proper treatment can do, treatment made possible for our poor families only through ACA. It would be callous and cruel to repeal this vital law.

Kathy Shapell, of Charleston, is president of the Mountaineer Autism Project.

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