Urge Del Joe May to Support HB1588

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Comment by Cindy Davis on January 16, 2009 at 8:38pm

Hi All, thanks for all the support getting Deelgate May to see the importance of passing HB-1588! We met with him yesterday at the Rally, he has a niece with Autism and is more familiar with the problems now. He is on board for passage if it passes out of Commerce and Labor Committee, he said "you don't have to sell me anymore." Thanks for the group effort though!

Comment by Casandra on January 8, 2009 at 4:49pm

Nancy (his assistant) told me he's on board with us!!

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

Here's the letter I have sent to the members of Commerce and Labor, as well as to Delegate May:

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 Casandra on December 7, 2008 at 12:08pm

I'm doing what I can with that too. I was chatting with a couple people from Round Hill and Purceville who are going to chat with the business owners they know in those towns.

Comment by Pat DiBari on December 6, 2008 at 9:59am

Sounds great! Need to also get business owners to contact him.

Comment by Casandra on December 6, 2008 at 8:57am

Pat,
I sent out an e-mail to 40 people in his constituancy asking them to contact him and requesting that they ask at least 5 friends and have them contact 5 friends.... I've been on this one since I read his article. Hopefully he'll take notice.
Casandra

Comment by Pat DiBari on December 5, 2008 at 4:56am

Delegate May,

I am disappointed and concerned about your 11/17 comments in The Leesburg Today. I know you’ve met with some of our parents (cc’d) and were unable to attend the Loudoun County Autism Summit where experts were available to address your questions and concerns. There were also opportunities to attend State sponsored public hearings in Richmond (9/29/2008, 11/19/2008) and Northern Virginia (11/2008 -- JLARC) over the past several months.

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). 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 medically 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 were unable to attend. We have had media coverage on CNN, local news and newspapers. 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). We have made EVERY opportunity to communicate and provide expert testimony. The State Mandated Benefits Commission recently voted 7-4 to support HB1588 (all legislators in favor) even with insurance industry appointees as voting members. If you had been in attendance at the 11/19 vote of the State MBC, you would have heard the Chairman (Del Hugo) cite the story of your constituent with 2 children with autism as a major influence to him. 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 you 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
Leesburg resident
703-999-9686

Comment by Pat DiBari on December 5, 2008 at 4:52am

Virginia HB 83 comments.doc Reference for Cost information and other arguments to support HB 1588