Reaching the Community

Last week we contacted Karen McCormick about HB 1588. Her family represents one of the many families that could benefit from this bill. She forwarded information on how to view our blog to all familes that are part of the Shenandoah Valley Autism Mailing List. This is very encouraging and has allowed our blog to be viewed by many key stakeholders in our local community. Thanks for the support! Another group member is still in contact with her respite care family. She discovered that the mother has been viewing our blog and that she found out about it through the Shenandoah Valley Autism Mailing List. She is a supporter of HB 1588, and faithfully writes legislators in hopes to gain support for such bills.

Although HB 1588 failed to pass, after researching how vital this bill is to families for children with autism, we will continue to support and advocate for legislation to pass.

Asking for Support

Delegate David Poisson is a chief supporter of HB 1588. Delegate Poisson knows that passing this bill will save the government an enormous amount of money in the long-run because individuals who do not receive early intervention services may end up in an institution. Each person who is institutionalized costs tax payers millions of dollars each year. Delegate Poisson sees the big picture and realizes that early action and assistance by the government, means saving big bucks for taxpayers in the long run!

–Jenny Viar

I chose to e-mail AutismSpeaks because they are nation's top private funder of autism research. I feel that they hold a very important role in autism legislation because through their web sites, outreach programs, walks, and social networks they have raised public awareness about autism and its effects on individuals, families, and society. Their commitment to the people effected by this disorder and their passion for finding a cure make them very important to this and other autism bills.
-Jenny Hunter

I contacted Karen McCormick, a representative for a pharmaceutical company, who has also previously worked as an RN. She is the mother two sons, one of which has pervasive developmental disorder. Morgan and I worked with her family to provide respite care as part of our Pediatrics class. She is not only knowledgeable about healthcare, but is also familiar with the extra care needed for children with Autism and similar disorders, including speech training.

-Susan Atkison

I chose to e-mail Congressman J. Randy Forbes because he has previously been in support of other bills pertaining to Autism and related health care. In 2008 he supported legislation (H.Res. 1106) that was in support of making April 2008 “National Autism Awareness Month.” H. Res. 1006 also supported efforts to devote new resources to research into the treatment and causes of Autism and also to better the training and support for individuals with Autism and their caregivers. I feel that Congressman Randy Forbes. Congressman Forbes realizes that Autism care is costly and takes a lot of time and energy from both the patient and their caregiver and he also supports awareness for the disorder.

–Morgan Gentry

Virginia Congressman Bobby Scott is an advocate for health care improvements. While he has been a congressman he has sponsored bills to provide health insurance coverage for children and pregnant women throughout the United States by combining the children and pregnant woman health coverage under Medicaid and SCHIP into a new All Healthy Children Program, and co-sponsored H.R.676 which provides comprehensive health insurance coverage for all United States residents, improved health care delivery, and for other purposes. Congressman Scott may be in favor of the HB 1588 bill, since it would further help with health care and insurance coverage.

-Jessie Maas

I contacted congressman Jim Moran, elected to his tenth term in the U.S. House of Representatives in November 2008. He represents the 8th district of Virginia, which includes Alexandria, Arlington, Fairfax County, Falls Church and Reston. Congressman Moran believes that the U.S. healthcare system should be focused more on preventive care. This bill supports early treatment for autistic children, which would ultimately lead to fewer treatments in later years for the majority of these people. His support of HB 1588 could help raise awareness within the U.S. House of Representatives.

-Sarah Buhrman

THIS JUST IN!!!!!!!!!

Delegate Poisson e-mailed one of our group members and stated,

“Thanks for your support. The bill unfortunately failed this year. However, as one of its chief sponsors, I fully intend to reintroduce it next year. If ever there is anything I can do to be helpful to you, please don't hesitate to let me know.”

Unfortunately, HB 1588 was not passed this year. The key supporters of the bill will continue to be a voice and advocate for its potential passing next year. Even though the bill failed to pass this year, it was successful in raising awareness for autism.

Action Plan for HB 1588

What is our position on this bill?

We are in support of this bill because we believe it would relieve financial burdens for families who have children who are diagnosed with autism. By having private health insurance companies take on the responsibility of providing support to these children, it would save the government and taxpayers’ money. As of right now there is a waiting list to receive funding from the government, so it could be years until a family obtains any type of support from them. In the mean time, individual families who have a child with autism are paying out of pocket for medical bills and other special treatments. If private insurance companies decide to cover this condition under their policies, it would be cheaper for families because they would only be responsible for premiums and co-pays.

What is our action plan?

- Email and send letters to key stakeholders and state legislators.

- Provide information, references, and links about ethical concerns on the internet via our blog.

- Network with autism organizations and coalitions within the state.

- Support the autism organizations in Virginia and explore their resources.

According to a research study in the Official Journal of the American Academy of Pediatrics, “Childhood autism is associated with a substantial loss of annual household income. This likely places a significant burden on families in the face of additional out-of-pocket expenditures.” This reiterates the need for private insurance companies to cover autism expenditures. In effort to make this happen it is important to carry out our action plan in a timely manner while the bill is still active.

Who are the key stakeholders?

- children with autism

- their families

- private insurance companies

- the government

- healthcare workers

Who are our Legislators?

Congressman Randy Forbes supported H.Res. 1106, a resolution expressing support for the designation of April 2008 as “National Autism Awareness Month.” It also expresses support for devoting new resources to research into the causes and treatment of autism. In addition, this resolution supports improving training and support for individuals with autism and their care-takers.

Congressman Bobby Scott is another advocate for health care improvements, which include research, preventative care, and supporting lower income families.

The Impact of HB 1588

How would the government benefit from HB 1588?

"Admittedly, in the near term, mandating this coverage could add slightly to the cost of health insurance in Virginia. But whatever the cost, and no one can say for certain what it will be, it pales by comparison with what it will be if we fail to invest now in early intervention services. Autistic children who receive insufficient treatment can sometimes end up being institutionalized at taxpayer expense, at costs in the millions for each patient,” said Delegate David E. Poisson.

The Autism Society of America estimates that the total lifetime cost of caring for an autistic child ranges from $3.5 to $5 million. The United States is spending almost $90 billion annually in costs for autism (this figure includes research, insurance costs and non-covered expenses, Medicaid waivers for autism, educational spending, housing, transportation, employment, therapeutic services and caregiver costs).

By passing HB 1588, the government would benefit from reduced overall expenses related to caring for people with autism. If insurance companies were required to cover these children, the government would no longer be responsible for paying the incurred costs left unpaid by the insurance companies and families. The families of autistic children do not always have the resources available to obtain care. The families alone might only be able to pay for the most basic essential care and not the extra costs that are associated (transportation, behavioral therapy, etc.). The passing of this bill would not only assist the families directly but would also help tax-paying citizens by re-directing the funds once used to care for these children. These individuals would potentially be higher functioning in society if they received the necessary care early on versus providing care later because the therapies received would allow the individuals to contribute more to society.


Politically: who/what affects this bill?

In the United States, health care insurance companies have a tremendous amount of power on the influence of governmental decisions as it applies to health care. This bill would expand most normal coverage policies for the autistic child, which would result in overall increased costs for insurance companies to care for these individuals throughout a lifetime. The following parties also have an influence on HB 1588: nurses, policy advocates, pharmaceutical companies, bill sponsors and active voters.


What impact would HB 1588 have on nurses, individual clients and families, and the health care system as a whole?

If HB 1588 is passed, nurses would be able to be more efficient in the care they give. The passing of this bill would also require nurses to be more educated on autism spectrum disorders. If autistic clients were receiving behavioral therapy, they would be more compliant. This would make the nurse's job easier (ex. fighting with patient). The patients would probably be more compliant overall if they were provided with medical coverage. They would probably take their medications regularly, attend therapy sessions and obtain help when needed. Children are more likely to be abused when parents are frustrated and stressed out. With HB 1588, Families would be less stressed about obtaining care for their children. This could potentially lead to a better home environment. The health care system would need to create more jobs to facilitate the care for these clients if this bill is passed. The health care system would no longer have to "eat the cost" of the treatments provided to these children because the insurance companies would be required to pay.

HB 1588: Autism Spectrum Disorder; Mandated Health Insurance Coverage

What is HB 1588?

-Requires private health insurance companies to supply coverage for those diagnosed with autism spectrum disorder
-Coverage is provided only for those under the age of 21
-Maximum coverage of $36,000 per year
-Insurers cannot terminate or refuse to renew coverage because the individual is diagnosed with, or has received treatment for one of the autism spectrum disorders
-This bill, if passed, would take effect on January 1, 2010


Sponsors: Marshall, R.G., Amundson, Barlow, Bouchard, Bowling, Bulova, Caputo, Carrico, Dance, Englin, Hall, Hugo, Hull, Knight, Lingamfelter, Loupassi, Marsden, Mathieson, Miller, J.H., Miller, P.J., Nichols, O'Bannon, Oder, Poisson, Rust, Spruill, Valentine, Vanderhye and Ware, O


What do you need to know about Autism Spectrum Disorder?

Autism spectrum disorder includes:
1) Autistic Disorder
2) Asperger's Syndrome
3) Rett syndrome
4) Childhood Disintegrative Disorder
5) Pervasive Developmental Disorder - Not Otherwise Specified

Symptoms of Autism Spectrum Disorder include:
1) Communication- problems developing communications skills, both verbal and non verbal
2) Social- examples include understanding how other think and feel, and sharing emotions
3) Routine or repetitive behaviors- examples include repeating words and/or actions, obsessive behavior, and playing in repetitive ways

Treatment for autism spectrum disorder includes:
1) Habilitative or rehabilitative care
2) Pharmacy care
3) Psychiatric care
4) Psychological care
5) Therapeutic care


So, why should we support HB 1588?

According to an article from the Harvard School of Public Health, the total cost of care for an autistic individual can be up to 3.5 million dollars over his or her lifetime.

Care can include: speech therapy, physical therapy, behavioral therapy, family training, nutritional therapies, occupational therapy, sensory integration therapy, relationship development therapy, respite care

Autism is a medical problem which requires enormous expense; it is not feasible or possible for families to pay out of pocket. Children who do not get good care and treatment early in life are more likely to become independent contributors to society as they age. The less care they get as children, the more care they will need later in life, often requiring these individuals to receive full care in government funded facilities. The approval of this bill will save the government money because it will cost them more than $36,000 a year to provide full care to autistic adults that did not receive proper care as children.