Urge Del Tom Rust to Support HB1588

Add a Comment

Comment by chris foss on December 7, 2008 at 10:11pm

Here's the letter I sent to Del. Rust and the other members of Commerce and Labor:

Dear :

I am writing to urge you to support the vote of the Special Advisory Commission on Mandatory Health Insurance Benefits to provide insurance coverage for autism services (House Bill 1588, Mandated Coverage of Autism Spectrum Disorders). I am a parent of a 9-year-old boy with an Autism Spectrum Diagnosis. Significantly, however, I am employed by the University of Mary Washington and thus (as a state employee) do not stand to gain personally from this mandate. Nonetheless, I am taking the time to write this letter because I feel this is such a pressing issue.

It is a matter of justice, a matter of basic human decency, but it is also a matter of economic prudence—for without such a mandate, and the services that would come with it, today’s autistic children will grow up into autistic adults who far less capable of living independently and far more dependent on Commonwealth resources (for contrary to the beliefs of some, while autism is treatable, it is NOT curable).

The mandate is needed in part because parents find themselves in a Catch-22 situation where the education and health care systems each insist the other is primarily responsible for treatment. The former provides limited services focused exclusively on addressing success in the school setting (for example, occupational therapy offered through an Individualized Education Plan will provide for instruction in handwriting but not in self-help skills such as dressing). The latter more often than not writes its policies so that all occupational, physical, and speech therapy is deemed educational rather than medical in nature.

For example, in my son’s case, he has received no more than 30 minutes of speech therapy per week and 30-60 minutes of occupational therapy per week through his IEP, hardly enough to even begin to address all of his deficits. Yet our health care provider, Anthem Blue Cross/Blue Shield’s COVA Care, refuses to cover any rehabilitative services at all for autism. Luckily, our primary care physician was able to order medically necessary occupational therapy for him without listing autism as his primary diagnosis. When Anthem recently learned he had been diagnosed with an Autism Spectrum Disorder as well, however, they pulled coverage for these services after almost five years.

I am very pleased to say that, after exhausting all our appeals options internally with Anthem, I filed for an external review via the Commonwealth’s Department of Human Resource Management and this summer received a favorable decision from the MAXIMUS Center for Health Dispute Resolution stating that Anthem’s denial of coverage “was not a clinically valid course of action and was not consistent with the generally accepted principles guiding the provision of health care,” and therefore that Anthem had to reinstate coverage for these services.

Without coverage, we had been forced to drop to every other week and then none at all. While I am incredibly grateful that the final decision was in our favor, we can never get back the time our son lost over the past year. I should not have to spend all that time and effort fighting for coverage for what are clearly medically necessary services for my son.

While the mandate you are considering does not apply to state employee plans, it is a significant start toward beginning to address the health care industry’s shameful abdication of responsibility where this, America’s fastest-growing developmental disability, is concerned. Its position is based on concern for its own profit margin, not appropriate care for its members. Ultimately, though, it is not just the individual families dealing with autism who are paying the healthcare industry’s bills, but the Commonwealth itself and all of its taxpayers.

Please vote to end this miscarriage of justice by supporting a mandate for coverage of physician-approved rehabilitative services for autism and other related developmental disorders. Such coverage is not only medically but ethically necessary.

Thank you for your time and consideration.


Sincerely,
Dr. Chris Foss
906 Marye Street
Fredericksburg, VA 22401
cfoss@umw.edu
540-654-1128

Comment by Pat DiBari on December 6, 2008 at 10:00am

Way to go Vada!

Comment by Lavada Robertson on December 5, 2008 at 11:06pm

Will do Pat!! I contacted 30 by email this week. Only 1 response though. I forwarded it to Jodi. Did not look promising.......................next will come the phone brigade!!!
Vada

Comment by Pat DiBari on December 5, 2008 at 11:03pm

Wonderful emails! Please remind everyone you know that the best holiday gift they can give our children with autism in VA is to email, call and meet with the Labor and Commerce Committee to urge support for HB1588!

Comment by Lavada Robertson on December 5, 2008 at 10:53pm

My email that I sent just now!!!
Delegate Rust, December 5, 2008
We are constituents in the 9th district in Franklin County and we have a child on the Autism Spectrum. If you were not aware House Bill 1588 was passed through and recommended by the Mandated Benefits Commission on November 19th. This means that it will be up for vote when the General Assembly convenes in January 2009.
We as parents of a child with this disorder are asking you to support this bill. HB 1588 would open up a world of opportunity for families that cannot afford the therapies their children require. Therapies such as speech, occupational, physical and ABA (Applied Behavior Analysis.) ABA is the only scientifically proven, research based methodology for children with Autism. Most private insurances now will not cover any habilitative services, only re-habilitative. If you had a car accident or stroke, you could learn how to talk, write and walk and insurance would cover a number of visits. That is not the case for our children. Autism Spectrum Disorder is just like the name describes, a spectrum. No two children function on the same level. You will never find this. Each one has their own unique strengths and deficiencies.
I urge you to show your support for HB 1588 and make a difference in the lives of children across the Commonwealth. Many children cannot receive these services because the cost for parents to pay out of pocket is too great. The average cost for a speech session is about $100.00. The average cost for Occupational Therapy session is about $85.00. The average cost for Physical Therapy is $90.00. These are 30 minutes to 1 hour long sessions. The average cost for ABA per week is between $200.00 to $400.00. Now, how much is that out of pocket weekly? What if the child requires more intensive speech, OT, physical or ABA therapies? As you can see the cost adds up quickly. Many families have had to take out multiple mortgages, cash advances from high interest credit lines and sold family heirlooms and valuables just to pay for the mounting costs. Fortunately we are not one of the families that have had to sell their home to pay for therapies, yet. We do fall into all of the other scenarios.
Delaying any support for this bill and waiting would be what our many of our pediatricians told us about our children. Just to wait and see what happens. In the meantime more children are being diagnosed and not receiving the therapies that they require either. The earlier the intervention the better.
I am aware of the study and participated the the session held in Roanoke. Many other parents just like myself also talked about their struggles on a daily basis and what this mandate would do for us.
Please show your support for House Bill 1588 by contacting me back either by email or telephone at your earliest convenience.

We appreciate your support for this bill that will truly make a difference in the lives of our special children. I know that you would make a difference in Audreanna's.

Sincerely,
Jason and Lavada Robertson
Audreanna & Elleena

Comment by Mark Llobell on December 5, 2008 at 7:27am

My email to Delegate Rust:
Delegate Rust,

I am a grandparent of a child with Autism and a Virginia resident. I believe it is time for all Virginians to move forward and take a leadership position in support of HB1588. The bill before the committee will provide access to medically proven treatment for ASD diagnosed children in Virginia. It is time for Virginia and its leaders to step up and take care of our most precious asset our children.
Delaying a decision for medical assistance that offers our children their best opportunity to rejoin the mainstream of society and become contributors to our society is wrong. We have discriminated against and left the family's and children of Virginia who live daily with this infliction to deal with this alone long enough.
I ask that you support this bill now as these children cannot and should not wait for yet another study. All of the completed study's( there are many) show enormous benefits for our children. A vote to delay or not implement HB1588 is a vote to withhold help to these children, lets not let that happen on your watch.

Sincerely,
Mark Llobell Sr.

Comment by Pat DiBari on December 5, 2008 at 5:07am

Here is my response to Del Rust:

Delegate Rust,

I am disappointed and concerned about your response to Katie Mazza below.

Please see the attached video: http://web.mac.com/wasmer_ms/KCAL/Video_Testimony.html
It is a very good 14 min summary of the struggles people are facing in every state, incl Va.

Also, the American Academy of Pediatrics released its report this week on the impact autism has on families as compared to other disabilities. See below link.

The AAP study compared children and families with special health care needs to children and families with autism spectrum disorders. In summary the study shows:

Parents of children with autism:
• Incurred large out of pocket expenditures for health care services;
• Experienced financial problems;
• Reported the need for additional income;
• Had lower reports of maternal well-being (both physical and mental)
• Had to stop or reduce work to care for their child and spend more than 10 hours a week of providing or coordinating their child's care.

Children with autism:
• Had less access to important components of health care;
• Were less likely to receive family centered care;
• More likely to report problems such as receiving referrals, coordinating care, and obtaining family support services.
• Often have multiple concurrent disorders (co-morbid conditions existed in 90% of children with ASD including epilepsy, gastro-intestinal problems, anxiety and depression and respiratory, food, and skin allergies) which require a broader range of services....this can create additional financial burden, increased stress, strain, and mental health issues for families.

The full report can be accessed at:
http://pediatrics.aappublications.org/cgi/content/full/122/6/e1149?eaf

I also attached a summary report developed by Autism Speaks on our behalf that covers all arguments, including how HB1588 (formerly HB 83) makes good business sense by saving significant dollars over the lifecycle). Considering your recent top “2008 Business Rating” by VA FREE (a business advocacy), I realize that you are concerned about cost. The impact is negligible … the projected increase in monthly premiums is a scant 0.3% ($3-4/month) and a significant cost reduction over the persons lifecycle resulting in savings for businesses, families and the state (see attached file entitled “Virginia HB83 comments.doc”). I request that you evaluate cost from a comprehensive perspective, not just near term.

Above all, we CANNOT wait for the JLARC study to be completed in order to take action on and pass an autism insurance mandate in Virginia. This is a very important point. JLARC is evaluating comprehensive state services (governance/processes, Medicaid, etc). This is common sense … Insurance coverage MUST be part of the comprehensive solution. Schools, state services and families alone cannot solve this problem or assume medical bills for therapies. JLARC has studied this before and NOTHING has been accomplished to address this problem. How can Va deny coverage for this medical diagnosed neurological disorder? Does Va deny coverage for diabetes? Cancer? Insurance coverage for this medically diagnosed condition is a must. Lack thereof is clear discrimination against people that pay premiums for health insurance.

Time is of the essence. Children's future and their ability to get early intervention hang in the balance. In Loudoun County, we have the following support:

• Loudoun County Board of Supervisors declared that “early intervention” for autism is a top tier health priority (July 2008);
• Loudoun County Board of Supervisors passed a resolution supporting an autism insurance mandate in VA (Sept 2008);
• Leesburg Town Council passed a resolution supporting an insurance mandate in VA (Aug 2008);
• Loudoun County School Board approved a legislative priority supporting an autism insurance mandate in VA (Nov 2008);
• One school Board Member called autism the single most important issue facing our schools; and
• Fairfax will be considering a similar resolution on Dec 9, 2008.

Our grassroots campaign has emerged from here in July at the Loudoun County Autism Summit that you attended. We have expressed our pleas and testimonies at public hearings in September (State Mandated Benefits Commission -- Richmond) and October (Va’s Joint Legislative Audit Review Council). The State Mandated Benefits Commission recently voted 7-4 to support HB1588 (all legislators in favor) even with insurance industry appointees as voting members. Delaying passage or disapproving HB1588 is in direct opposition to the sound arguments and position of the State MBC, local government and people of Loudoun. I request that you elaborate on your position and arguments or concerns. I would like to set up a meeting with your prior to the holidays or shortly thereafter to review and discuss. I request your response to my email by 12/11.

Thank you for your review and I look forward to further dialogue with you!

Pat DiBari
Parent of 4 y/o son with autism
Loudoun County resident
703-999-9686