Good article on the financial burden of autism treatments incl. statistics

[Guest guest]

Hi all,

In case you haven't seen this article, I am re-posting it.

http://www.mothering.com/articles/growing_child/child_health/autisms-financial-burden.html

Autism's Financial BurdenBy Theresa Wrangham

Web Exclusive - October 22, 2008

Twelve years ago, tears stained my face as my husband and I were told that our eldest daughter, , had autistic tendencies that would require further diagnostic investigation. Six months later, was diagnosed on the autism spectrum as PDD/NOS, or in layperson's terms, mildly autistic. Even so, she would face significant challenges in everyday life requiring treatment to mediate the long-term effects of this disorder. Early medical advice about treatment focused on core features of autism's deficits in language delay, social skills, relationship development delays, and reasoning capacity. Years later, we would discover the value and cost of the biomedical treatments that have jump started her more recent improvements.

When was diagnosed, I was a stay-at-home mom and my husband had a good job with good health insurance coverage, or so we thought. It quickly became apparent that insurance would not cover the recognized treatments that needed to improve and certainly not off-label biomedical treatments we have used with success. We were a middle-class family with assets; we were told that we didn't qualify for services to assist us in meeting the financial burdens of treatment. If we could not find a means to fund treatment and education now and in the future for , our family faced a financial downhill slide to disaster. Autism was now the predator stalking our family and threatening 's potential, our hopes for retirement, and college opportunities for both our children.

Without Early Intervention

45 percent will require extensive government support (24/7 "line of sight" care) 45 percent will require some government support (Medicaid, work programs and assisted living 10 percent will not require government support as adults With Early Intervention (1:1 proven treatment, with IQ increase of up to 20 points)

10 percent will still require extensive government assistance as adults 55 percent will require only minimal government assistance at a lesser cost than adults without intervention 35 percent will not require government assistance as adults son & Mulick (2000); son (2000)

, having previously worked on Alaska's North Slope in the petroleum field, quickly sub-contracted for a position in Alaska. For more than half a year, worked a two-week-on and two-week-off schedule in Alaska's Arctic Circle to cover treatment costs and allow us financial stability. From then to now, we continue to pay normal business expenses and all therapy costs not covered by insurance. Our family's direct and indirect expenses for 's treatment last year was approximately $45,000. The story for many families facing this all too common financial scenario is anything but rosy, with many unable to meet the financial obligations that autism treatment entails.

In fact, studies published by Harvard University found societal costs for caring and treating individuals with Autism Spectrum Disorder (ASD) in the US to be $35+ billion per year. Direct costs per ASD individual include direct medical costs and behavioral therapies and are estimated to be $29,000-43,000 per year. Annual indirect costs include direct non-medical costs, such as special education, camps, child care, lost income, income differentials, and alternative/off-label therapies. These indirect costs to the individual and/or family are estimated to range from $39,000 to nearly $130,000 ( Ganz, Understanding Autism: From Basic Neuroscience to Treatment, (city, state: CRC Press, 2006)). Also of interest, the American Medical News reported the medical loss ratios of the largest for-profit insurers and found that profits for the biggest health care providers continued to rise, while the amounts these providers spent on care

declined. Unsurprisingly, 50 percent of US bankruptcies are attributable to illness, or medical bills, indicating that the ASD community is not alone in their struggle for health care and treatment (Steffie Woolhandler, "Illness and Injury as Contributors to Bankruptcy," Health Affairs (2005).

This is truly a sad state of affairs given that long-term outcomes for ASD individuals having the benefit of early intervention (behavioral treatment) demonstrate substantial reduction of costs associated with life-long care. Early intervention strategies implemented with older affected children, often excluded from government programs, also demonstrate measurable gains in IQ and merits their access to treatment to reduce financial impacts to education and government support programs (SL & JS Handleman, Rutgers 2000).

Additionally, biomedical imbalances identified in autism respond favorably to existing medical and nutritional interventions. More and more families pursue these interventions with success, however, that success is often purchased at a huge cost to a family's emotional and financially well-being, i.e., without the benefit of insurance or government programs.

Today, has progressed farther than we could have imagined and has defeated many of the nevers on the list composed when she was diagnosed. That progress continues to be realized through the application of both behavioral and biomedical interventions financed out of our pockets. The coverage of recognized and effective treatment is critical in addressing the extreme financial burdens of families and individuals touched by autism.

Real action to assist families financially will require many states to address outdated developmental disability definitions that determine eligibility for services in order to defer some of costs and to include individuals falling through bureaucratic cracks in the system who have real needs. The for-profit insurance paradigm must also be redefined in a manner that actually offers health care and treatment as a priority versus shareholder returns. Without action, the situation will continue to drive many families into bankruptcy with incalculable costs to humanity, as well as tangible impacts to our economy.

In receiving the support and treatment she needed, has successfully held down full-time summer jobs and has good life skills to live on her own. 's long-term goal of living independently with gainful employment is likely to require minimal government assistance as she will be able to generate revenue that benefits the economy. The minimal assistance she will need as she reaches adulthood, however, is so underfunded that the costs will continue to be on us, and will eventually passed to our other daughter Deanna and continue negative cost impacts to the economy. And ever-growing number of families who have children with ASD face this scenario today. Government has a stake in these long-term outcomes that benefit society and should seek to defer ASD adults impacting government programs at the highest cost levels. ASD individuals, as well as other developmentally disabled people, rightfully deserve access to treatment and services that

will allow them to fulfill their potential and lead happy and productive lives.

Currently, autism is estimated to affect individuals at a rate of 1 in 150 with estimated increases of 10-17 percent per year. Affecting 1.5 million Americans, ASD alone presents a national health care crisis. There must be a sense of urgency in addressing the autism epidemic. Desirable long-term outcomes necessitate full funding of research and the development of a national comprehensive autism policy by our government. Such policy must prioritize research into areas identified as having the most promise and/or being understudied and speak to the delivery of services and treatment with the goal of helping as many affected individuals today and preventing autism's occurrence tomorrow. It is time for autism to be recognized as a highly treatable disorder, for which a cure is possible and treatment affordably accessible.

Theresa Wrangham lives in Colorado with her husband , and daughters Deanna and . She is the past president and cofounder of Autism Society of Boulder County and coordinated the first ASD biomedical and behavioral conference in Colorado. Ms. Wrangham also spearheaded Colorado's legislative efforts to ban mercury containing vaccines in favor of widely available mercury-free vaccines and is the current president of the Coalition for SafeMinds and director of Education Development and conference liaison for the US Autism & Asperger Association.

Sincerely,

Pattison

National Autism Association - Northeast Ohio (NAA-NEO) Helping Hand Program Manager P. O. Box 221195 Beachwood, OH 44122 E-mail: apattison@... Phone (216)544-1231 Web: www.autismnortheastohio.org