6 Reality Checks: The Bootless Have No Bootstraps

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“…it is a cruel jest to say to a bootless man that he ought to lift himself by his own bootstraps.” –ML King Jr

I don’t know why I’m surprised with comments that prove many people don’t know how to walk in someone else’s shoes. After sharing about the problem of paying for long term care for adults with severe autism on Twitter–

“Paying for LTC 4 adult children w/autism requires a Medicaid waiver. Many states have enormously long wait lists”

someone (in a series of tweets) tweeted this.

“That’s ridiculous. Parents were good enough before18 but not after???? And aren’t parents responsible even after…” [second tweet] “Wouldn’t it be our job to make sure they were taken care of??? Same as if they were minors?” [third tweet] “Parents adjust financially as they need to. We always have.” [fourth tweet] “& we haven’t had to deal with the what if…..only the which one.”

Reality Check #1

So let’s do a reality check here. First, many people with severe autism cannot communicate at all. Second, some people with severe autism wear diapers and must be changed as adults. Third, most people with severe autism cannot work. Fourth,

“Parents don’t live forever & that is the sad fact. The situation 4 some families is dire.” [second tweet] “What do parents do if they are poor? What do they do if no one will take them (the adult children)?”

Reality Check #2

I also directed the person to a post I wrote after doing research for a client on what is available for people with severe autism. The reality is this. It costs over $75,000 per year to serve one adult with autism and expenses can go as high as $200,000 per year per person. If that isn’t scary, just read on.

Reality Check #3

reality-check200x192Locating residential homes that are specifically for autism is challenging. One of the best resources available for finding residential providers is The National Association of Residential Providers for Adults with Autism, or NARPAA. It has been created with the specific mission “to assure the availability of residential services and other supports for adults with autism throughout their lives.” There are 28 member agencies that have been certified by the NARPAA.

These agencies are the “icing on the cake” in the world of residential autism services.

Enter Dr. Ruth Sullivan

Providing life-long residential care for those with autism has been the personal mission of Dr. Ruth Sullivan. She is a world renowned authority on autism, having founded the National Autism Society as well as founding and directing the Autism Services Center. She also wrote a Call to Action paper for NAARPA in 2001 about her concern with the lack of residential autism services (revised in 2007).

Dr. Sullivan was one of the leading advocates for the Public Law 94-142 (the Education of All Handicapped Children Act, now known as the Individuals with Disabilities Education Act, or IDEA). This law guarantees a public education to all children in the United States. Before its passage, individual school districts were allowed to choose whether they would educate a child with disabilities. The IDEA expressly directs public schools throughout the US to provide free and appropriate education to children with disabilities. This educational promise includes occupational, speech and language and other therapies.

Sadly, a law was necessary to guarantee this. Yet it seems we need more legal action to help because the daily hands-on special education services provided free by university trained public school teachers ends upon graduation from high school. Absolutely no services are mandated by the Federal Government for those children (now considered adults at age 21) with autism after they leave public school.

Reality Check #4

Even though IDEA mandates services during school, many parents have to fight for those services. Exhausted from this effort, they often are not prepared for the transition from high school. It is extremely important for parents and families of children with autism to search for residential options early because there are so few places for adults with autism. Unfortunately those 28 NARRPA member centers each serve only 100 residents or less.

Reality Check #5

There is a significant shortage of residential services for autism in the United States. In fact, even staff at some residential centers for autism do not have to have the kind of specialized training required by public schools for special education teachers working with children with autism.

Many of those who need residential care end up in group homes and centers that are not specific to autism. Although much has been accomplished in the science of behavioral management (one of the techniques favored by autism experts is Applied Behavioral Analysis), most center staffs are ignorant of successful ways of dealing with the unusual language, behavioral and social deficits of autism. Unfortunately, these behaviors are likely to be dealt with in a punitive manner, which often becomes severe, dangerous or even lethal.

After researching some of centers that accept people with autism, other issues were discovered. For example, lifelong provision of services is a key difference among facilities. When first reviewing organizations, it was troubling to discover that some facilities require clients to work. If they are too old or unable to work, they are not allowed to stay on in the community.

Reality Check #6

Talking to several of the directors of these residential programs was eye opening. The only real source of funds for autism is Medicaid and that is only through a limited program called the Home and Community-Based (HCB) Residential Waiver. Having Medicaid doesn’t automatically mean you have the Waiver. The Waiver is funded for only a limited number of eligible individuals, so eligibility does not provide entitlement.

Thirty-five states require insurance companies to provide some coverage of critical autism therapies for both children and adults. Twenty-three of these states require coverage of autism treatment costs the other twelve require limited support.

Conclusions

“Before you act, listen.
Before you react, think…
Before you criticize, wait…
Before you quit, try.” –William Arthur Ward

It’s time to stop knee-jerk reactions to Government spending on those who are poor or defenseless.

Very few parents in the US can afford between $75,000 to $200,000 per year to care for autistic children and adults.

First posted on LinkedIn

Children and adults with severe autism are people. Their parents do not live forever. Leaving them to live or die on the streets is cruelty beyond measure.

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