Making Special Education Actually Work

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There are a number of states that have passed regulations that require insurance companies to fund services, including ABA programs, for their insureds who have autism. However, many insurance companies deny autism-related claims on a regular basis.

Insurance advocacy is an entirely different ballgame from special education and regional center advocacy and it’s too big of an undertaking for KPS4Parents to assume. However, other advocacy organizations exist to help families of children with autism pursue appropriate interventions such as ABA, speech-language services, and occupational therapy from their insurance carriers.

While we’ve never worked with any of these organizations, and thus cannot speak to the quality of their services, parents may still wish to check them out for themselves. The organizations we’ve identified that perform this type of advocacy and other parent resources on insurance coverage of autism services include:

• The Autism Health Insurance Project (California)
• Advocates for Autism of Massachusetts
• Autism Advocacy & Law Center (Minnesota)
• Autism Society of Ohio
• Gotham Government Communications & Relations (New York)
• Missouri Department of Insurance
• Elizabeth Birt Center for Autism Law & Advocacy (New York)
• Angelo & Di Monda (California)

There are also other resources out there for parents willing to take the time to search the internet and call around. The above-listed resources are just a few of many.

The argument for seeking support from insurance carriers are compelling, despite the fact that there are publicly funded agencies that are mandated to provide supports and services to children with special needs, including autism. One of the most compelling arguments is that insurance companies are highly profitable for-profit entities with very deep pockets, deeper than those of the publicly funded agencies mandated to serve children with disabilities. Autism is a both a medical and a psychological diagnosis and health insurance is generally intended to cover the costs of care for both medical and psychological needs as they are both health concerns.

I once heard Chris Angelo, the father of California’s AB 88, speak on the issue of insurance coverage for autism services and he made the point that top insurance company executives in wealthy health insurance companies are given end-of-year bonuses to the tune of millions of dollars, up to $20 million per executive. I also know from having worked in insurance for a while that the biggest investors in real estate, particularly commercial real estate, are insurance companies (though I don’t know how that’s been working out for them lately).

You can download a free copy of Mr. Angelo’s AB 88 advocacy guide that parents can use with their insurance providers, previewed below. Mr. Angelo freely gives this tool away so that parents can help themselves as much as possible. Ironically, after achieving the passage of AB 88, which he regarded as a great professional accomplishment at the time, Mr. Angelo later became the father of a child with autism only to realize the impact of what he had achieved.

It’s worth noting that AB 88 also applies to children with mental health disorders. While these students are eligible for special education mental health services and possibly mental health intervention from their county mental health agencies in California, if they have private health insurance, they are covered by the protections of AB 88, as well.

The things that parents need to keep in mind is that special education services are meant to address educationally necessary needs and, at least in California, regional centers are the payers of last resort after all other generic agencies (school districts, county mental health, etc.) have exhausted their obligations. In California under the Lanterman Act, regional centers are required to maximize consumers’ individual potentials, though I’ve never met anyone who has actually received this level of service from a California regional center in over 20 years of advocating for children with special needs. The idea of it is pretty much a joke.

Unless state law says otherwise (and most states’ laws don’t), school districts are not required to maximize anybody’s potential. And, generally speaking, they don’t. The purpose of special education is to render meaningful educational benefit – that is, give a kid with special needs enough to get by, not the best education possible. The famous analogy is that eligible students are not entitled to the “Cadillac” of an education but, rather a “serviceable Chevy.” In my experience, an appalling number of kids are getting something more like a “busted-up Pinto.”

So, while speech-language, OT, and ABA can be provided under an IEP, it’s only to the degree that is educationally necessary to render educational benefits. That doesn’t mean it’s all a kid needs. If it is enough to help the kid succeed at school but not enough to address all of the child’s needs, which can be the case, then parents have to supplement an IEP with outside services. The entity with the deepest pockets for supplemental services is the insurance industry and, unlike regional center programs, private health insurance exists in every state where regional centers do not.

In the wake of the public outcry over abuses by the financial industry, of which the insurance industry is a part, and government shortages of the financial resources necessary to render an effective degree of intervention to persons challenged by disability, turning to the insurance industry to achieve more bang for their buck is a timely solution for many parents. That said, we have to acknowledge that a significant amount of government shortages are due to misuses of funds, inefficiencies, redundancies, and waste within government agencies.

The danger in putting all of our eggs in the insurance industry basket is that we will neglect to hold the government accountable for its duties – something it is encouraging parents to do by pointing at the insurance industry a whole lot these days. The best planning parents can do is figure out what their children individually need, then figure out what the most is that they are entitled to from publicly funded agencies as well as their private insurance and go after all responsible entities to live up to their respective duties. That’s no small undertaking for parents, particularly single parents, raising children whose challenges make the act of parenting that much more difficult in the first place.

I don’t know a parent of a child with special needs who isn’t exhausted just from day-to-day parenting; the added task of chasing after services is often so daunting that parents tend to let things slide that could make a world of difference in their children’s lives as well as their own. This is what makes advocates and attorneys necessary to the process in many instances, which is again another cost and time consideration for parents, but usually one that can pay for itself. Running up an advocacy bill of anywhere from $500 to $5000 may sound like a lot until you consider that it can net tens of thousands of dollars worth of services for which the parents will not have to pay and which will enhance a child’s abilities, opportunities, and quality of life in ways that can never be fully measured in dollars.

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