Home > Government Relations > An Advocacy Call to the Nation

An Advocacy Call to the Nation

This post is written by Peter Bell, executive vice president for programs and services for Autism Speaks. He oversees the foundation’s government relations and family services activities and also serves as an advisor to the science division. Peter and his family reside in New Jersey, his oldest son Tyler has autism.

At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders. To accomplish this mission, we have devoted much of our advocacy efforts over the last several years to ending the routine discrimination against people with autism by health insurers. To date, twenty-three states have enacted legislation requiring health plans to cover medically necessary, evidence-based autism treatments. Currently, the State of New York sits on the brink of passing what could become one of the most comprehensive state laws passed thus far.

For several years, families, legislators and advocacy organizations in New York have been working diligently towards the passage of meaningful autism insurance reform legislation. S7000B is the product of this mutual effort. Passed unanimously by both the New York Assembly and the New York Senate, this legislation would at long last require coverage of evidence-based treatments like speech therapy, occupational therapy, physical therapy and applied behavior analysis. S7000B also insures that coverage for behavioral therapy cannot be denied because it is deemed educational or habilitative in nature. Just as important, the bill has no annual monetary coverage limitations or limits based upon age. It also contains provisions to ensure that existing services covered under health insurance as well as services provided through an individualized family service plan, an individual education plan or an individualized service plan are continued.

If you don’t live in New York, you may be wondering what this legislation has to do with you. Although this bill originates in New York, advocacy from stakeholders all across the country is critical. Here’s why:

If you happen to live in one of the twenty-three states that have enacted an autism insurance bill, then you know the impact this legislation can have on the families that now or soon will benefit. They will no longer need to worry about using all their financial resources to pay for evidence-based therapies that their children with autism need.

If you live in one of the twenty-six states that have not yet passed autism insurance reform, then you know the heartbreak a family faces when they receive denial after denial from their insurance company for treatments their child needs to live a full life, join their peers in school, and interact with their siblings.  And, if you have a health plan that is not covered by state law (if, for example, your employer has a self-funded or ERISA plan), then your help is needed most of all. Enactment of autism insurance reform in New York will mean that our community is one step closer to being able to make the case for reform at the federal level. Federal autism insurance reform will ensure that every family in America will get the insurance coverage for autism therapies that they need and deserve.

At the end of the day, it all comes down to ending the discrimination families living with the challenges of autism face when dealing with health plans.  As one New York father pointed out to me recently, individuals with autism are simply looking for equality. He went on to emphasize how this piece of legislation would require coverage for evidenced based treatments, equality in its truest sense.  He spoke from an extremely personal place, sharing how last year he was diagnosed with Non-Hodgkin’s Lymphoma.  His course of treatment, which was evidence-based, was covered by his health insurance and because of this treatment, he is doing well.  He went on to ask the obvious question:  why his beautiful nine year-old son with autism was not afforded the same opportunity?

It’s time for this discrimination to stop.  You can help by emailing Governor David Paterson and urging him to sign S.7000B into law. He needs to hear from you – as a member of the nationwide community of families and loved ones of individuals with autism – even if you do not live in New York. Please take two minutes to make a difference today.

Please help us today in New York to create a better tomorrow for families in all states. Thank you.

 

  1. October 13, 2010 at 12:33 pm

    The impact of the lack of insurance coverage on families is enormous. Just did an article where 3 families share their stories of the impact: http://www.thespecialguide.com/bloglist.php Each cites lesser coverage and higher premiums compared to before. Don’t know if an email from a person in Georgia would do any good, but will surely send one to Gov. Paterson.

  2. Nancy Bieringer
    October 13, 2010 at 3:42 pm

    Dear Governor Paterson,

    As the parent of a 24-year-old son with Asperger’s syndrome, it is a difficult road to navigate. Insurance coverage for families with members on “the Spectrum” is crucially needed. As a resident of Massachusetts and a volunteer at AANE (Asperger’s Association of New England) I witness the continuous flow of individuals and families frustrated by the lack of affordable insurance coverage.

    I urge you to sign S.7000B into law. This would ease the burden of so many families who are struggling to help their loved ones to get the services they so very much need.

    Sincerely,

    Nancy Bieringer

    nbieringer@yahoo.com

  3. brenda
    October 14, 2010 at 1:40 am

    I have a 13 year old son who was diagnosed PDD/NOS and ADHD a few years ago. Yes… families with children on teh spectrum do need full insuramce coverage to cover them medically. I know the battle we go through emotionally and psychically to make sure our children get the rights they deserve. Having a son on the spectrum I know first-hand the stuff they go through just in society alone, not to mention they cant get coverage for medical and not all families qualify for government programs such as medicaid where teh expiences are covered.
    They also need to set forth a plan to get more qualified teachers in the public school system to teach the classes becasue they tend to toss kids on the spectrum on regular classrooms with teachers who do not know the proper way to care for the children. With a child who is autistic they cant not be handled the way the “average” child can be handled ot talked to. So if anyone can help me also find help for my son at school I would greatly appreciate it. I live in Alabama.

  4. Dadvocate
    October 14, 2010 at 12:35 pm

    This is a terrific and important post, Peter. Just today, I got a call from the parent of a recently diagnosed child who was very clearly overwhelmed (as I was nearly two decades ago), not only by the number of choices he and his family face, but by the astronomical costs involved in providing the medically necessary and recommended therapy to his daughter. Even though he lives in a State that has passed insuance legislation (IL), and has a good job, his employer sponsored insurance won’t cover therapy. If that’s not discrimination, then I don’t know what is.

    The carve-outs demanded by the insurance lobby and Chamber of Commerce that were agreed to by advocates in order to keep the the IL bill from being killed outright (as it had been for many, many years prior to enactment), resulted in a situation where only 17% of the families who ought to get reimbursement will actually see a check. That’s a real problem and why we need a federal solution. We got the best we could here in IL but it’s clearly not right and not enough…but it is a start.

    I think New Yorkers would be well served to get the camel’s nose under the tent with S7000B and work hard going forward for a national solution to end this discrimination. Don’t let striving for the perfect prevent the good from happening.

  5. autismspeaksfan
    October 17, 2010 at 1:46 am

    See “Autism Home Healthcare Staffing Realities” on You Tube for an insight look at how hard families have to fight for obvious needs. Here’s a family that shows that they have a child who would cost state of California over 356,000 yr. PLUS (plus, meaning the basic cost of institutional care isn’t factoring in the 1:1 this autistic patient would need). This family is willing to KEEP the child at HOME, which saves the state over 200,000 a year, yet the state agency charged with duty to provide home health care under Olmstead Act and other laws, is actually FIGHTING this family, and telling them, “we aren’t equipped to help you….you should place your son in an institution until the budget cuts are over.” As if they will ever be over. What is so news worthy about this story/case, is that the FAMILY has managed to do what GOVERNMENT has FAILED to do: keep their high risk, costly child at HOME. Yet, despite the family doing the job government can’t do, the same government FIGHTS the family and tells them, “we can’t offer you more than 12,000 dollars a month in home health care services,” though the cost of OUT of home care costs would be around $33,000 month!. Now, that is clearly a REASON why California continues to be one of the states that just doesn’t understand how to SAVE money.
    Source: Basic cost for institutional care at Fairview Developmental Center is around 356,000 per year, NOT including 1:1 or 2:1 overtime costs paying extra nurses and staff at institution to care for the type of autistic person portrayed in this and other videos on you tube under cdfoakley and kgaccount. The cost to KEEP this type of autistic person at HOME is FAR less than what it would cost to place him OUT of home. Keep in mind, this person portrayed in videos is OVER 18, so family does NOT have to keep him at home. But they are willing. A rare case indeed, which is a case study in cost effective in home care vs. out of long term nursing care expenses. So the question remains, if California officials do NOT provide this family with needed in HOME supports (nursing assessments repeatedly assessed this case at 2:1) then the state will be paying FAR more than what they need to pay to KEEP the child at HOME. It’s RARE to find families that are WILLING to keep an autistic patient with this HIGH level of care at HOME. So instead of supporting this family, the state pushes them to place the child? How does that make economic sense?

  6. Dawn
    October 17, 2010 at 6:45 pm

    This is Very Important To The future Of Autistic patients and Those alike. Would It Not Be Cheaper On The states,as well As The families that provide this much needed insurance for the life long care & therapy that most require?
    it certainly would be a very foolish mistake not to pass it.

  7. Parent
    October 18, 2010 at 7:20 am

    IF YOU HAVE AN IEP THE LAW IS NULL AND VOID!!

    • Robert
      October 20, 2010 at 10:18 am

      That is so untrue. This legislation will enhance services being delivered through an IEP or IFSP, and will not interfere with these services.

  8. Diane Cahill
    October 20, 2010 at 10:25 am

    Dear Governor Paterson:

    Receiving a diagnosis of autism for your child is one of the most devastating experiences one can go through. In an instant, the course of life for the child receiving the diagnosis as well as the entire family is altered. There are more questions than answers and seeking an effective direction for treatment is extremely challenging. What is known is that best outcomes are typically achieved with early and intensive intervention, but you question which way to turn, and you are keenly aware that the clock is ticking. Living with autism is a 24/7 challenge. The families physical homes look like everyone else’s, but the lives that are lived there are vastly different. Home life is chaotic and there is no time to take a break or rest even when you are ill. Their children require assistance to learn even simple tasks that typical children and people take for granted…how to communicate, eat, sleep through the night, bathe, toilet, and dress themselves. They may need to be taught to play with toys and tolerate, much less enjoy leisure skills. They even need to learn how to make a friend. This is heartbreaking for families. There are often challenging, bizarre, and repetitive behaviors to deal with. Some of the children are violent to themselves and others. Some of the parents work on these skills with their children throughout their lifespan. Some of them never master these tasks and do not become fully independent. Siblings are affected and marriages can be strained to the breaking point.

    The issues become even more complex in different ways as the children age. Finding qualified people to educate and take care of their children is tremendously difficult. This only gets more challenging because although their children get older and transition into adolescence and adulthood, many require constant supervision. Extended family members that used to be able to offer support age themselves and are no longer able to help. Who do you call to watch your adult loved one with autism so you can go to a work function, doctor’s appointment, or to take a much needed break? The families’ fears for the future of their children are overwhelming and they lack peace of mind. They realize that they cannot live forever and worry about their vulnerable children living in a world without them. Where will they live? Who will care for them when they are sick? Who will love them?

    Autism is a complex neurobiological disorder that typically lasts throughout a person’s lifetime. It is the fastest growing developmental disability in the world. According to the Center for Disease Control (CDC), autism affects 1 in 110 children, making it more common than pediatric cancer, diabetes and AIDS combined. It occurs in all racial, ethnic and social groups, and is four times more likely to strike in boys than girls. There is no medical detection or cure for Autism.

    Children on the autism spectrum demonstrate deficits in social interaction and in communication, and show repetitive behaviors or interests. Symptoms range from mild to severe and vary with each child. In New York State and elsewhere, families of children with autism have sought out treatments. No one treatment is perfect for every child, but speech, occupational and physical therapy have produced gains. Children with autism have also benefited from psychological and psychiatric services, as well as from pharmacological interventions. Applied Behavior Analysis (ABA), which is an evidenced-based behavioral intervention, is the treatment of choice for many children with autism. In addition, early intervention is critical to gain maximum benefit from existing therapies. With early intervention, a sizable minority of children diagnosed with autism are able to achieve age appropriate educational and intellectual functioning. With good health care, children with autism can make remarkable strides.

    Many New York children are not now receiving the services that would help them, while others are receiving care at ruinous financial cost to their families. In the case of a child with autism, doing without care or diluting care could mean the loss of critical opportunities to ameliorate the devastating effects of the condition. Families are forced to cope with delayed, inadequate and fragmented care and often pay for costly interventions out of pocket or forego them. Families across the state believe the pertinent question in the discussion regarding individuals with autism is not whether we can afford to provide appropriate interventions but rather, whether we can afford not to.

    Of course the cost of healthcare and other services is but one measure of the cost of autism. Another measure is the emotional cost of the condition, a measure than cannot readily be quantified. Whatever calculus is used, there can be no doubt that savings lie in reducing autisms toll. Ending discrimination against our children with autism is not only a wise investment; it also will ensure that every one of our children, including those with autism, has the best chance to reach their full potential.

    For the past few years, advocates for the autism community have been working on a state by state initiative to end autism insurance discrimination in our country. Today, 23 states have enacted laws similar to S7000B/A10372A. Individuals, families and advocates, along with the most respected national and state autism organizations support this legislation. Some examples are: The New York State Medical Society, the American Academy of Pediatrics, the New York State Association of Behavior Analysts (NYSABA), the Autism Research Foundation, the AHA-NY, ASAT and Autism Speaks.

    In June of this year, the NYS Senate and Assembly unanimously passed S7000B/A10372A, and on October 8th the bill was delivered to you for your consideration. We respectfully ask that you sign it into law and make NYS the 24th state to end autism insurance discrimination. S7000B / A10372A stands as one of the strongest bills in the nation. For years, we have been asking that people with autism spectrum disorder simply be treated fairly by health plans in the state of New York. We are not asking for special treatment — just equality – an end to the discrimination that precludes people with ASD from accessing evidence based interventions like speech, OT, PT and behavioral therapies like Applied Behavior Analysis, just a level playing field. This landmark legislation does just that.

    New York State spends an average of between $3-4 million dollars on an individual with autism across their lifespan. It is not only morally right, but fiscally prudent to enact a law that will end autism insurance discrimination in NYS.

    Sincerely,

    Diane Cahill
    NYS Advocacy Chair, Autism Speaks

  9. December 13, 2010 at 6:25 pm

    Not because you do not have an Autistic child you will just ignored people who have, as human kindly have a heart, feeling, & be human ok .Thanks!God Bless.

  10. autismspeaksfan
    January 16, 2011 at 1:03 am

    Places like Kaiser Permanente and their “thrive” slogan are a joke. When it comes to treating autistic patients, Kaiser has displayed a “failure to thrive” attitude towards autistic patients, considering them to be just, well, “autistic,” and thus not worthy of much more than doping them up and getting them the hell outta the office and back home, outta sight, outta mind. And even when good doctors within kaiser try to help the autistic patients, they are pressured to provide the bare minimum clinical evaluations to save money, which is idiotic because in the end, the autistic patient who is NOT properly and effectively treated, COSTS MORE to kaiser than if they wouldn’t taken time to pour themselves into ruling out underlying causes, etc…of fueling etiologies to things like aggressive or self harm behaviors. Kaiser really needs to be educated on severely autistic patients. They just don’t get them. And are definately not set up to meet their specialized care needs. The federal government should be granting Kaiser money to set up a small specialized ward in each major hospital, for Kasier autistic patients.

  11. autismspeaksfan
    January 20, 2011 at 10:19 pm

    patient care at Kaiser? Go to youtube and type in “shocking patient neglect of autistic person” WOW

  12. January 22, 2012 at 5:19 am

    I have heard some people comment that this bill will not level the field for diagnosis and treatment for person with autism.They said that this law would require a new four person agency body of commissioners from three different government agencies – the Office of Mental Health, the Office of Persons with Developmental Disabilities and the Department of Health – and the Superintendent of Insurance to create rules to determine what treatments will be covered for Autism in NYS, which would be one more obstacle placed between their children and the services and treatments that they need, how true is this?

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