Miles to Go Before I Sleep

This week I feel like we are trudging through thick snow, making little progress.  Never mind it’s sunny and a mild February.

The General Assembly session is winding down, and our much anticipated bills to expand autism insurance coverage in Virginia are still sitting in committee.  Media outlets across the state are now starting to pay attention to HB1940 and SB1457, and yesterday the story appeared in Hampton Roads here.  The Senate was supposed to hear the bill on Monday, but SB1457 was pulled off the docket and postponed.

Patience may be a virtue, but I am not feeling virtuous anymore.  Thing 1 cannot wait another year for this debate.

Last night I reached out to a few well-connected friends…because it’s not what you know; it’s who you know.  A couple awesome ladies put me in touch with two news reporters.  After e-mails, text messages, and a phone call this morning, I think NBC12 will be at the House Commerce & Labor meeting tomorrow, where HB1940 will hopefully be up for a vote.  And the reporter wants to interview us.  Aye aye aye.

In the meantime, I turned on The Story of Us (thank you, History Channel) for my students today and hit the e-mails hard.  Here’s my letter to every single member of the Senate Commerce & Labor Committee:

Dear Sirs and Madam:
I am writing members of the Commerce & Labor Committee, urging you to end the age cap on Virginia’s mandated insurance coverage of autism spectrum disorders.  I live in Midlothian, and I have three sons, ages 7, 4, and 9 months.  My oldest sons both have autism.  SB1457 will reach your committee meeting soon and impacts thousands of Virginia families.  Those families are sick and tired of begging the Commonwealth for scraps.  Today it is more difficult for families like mine to secure EDCD waiver services or a spot on the ID/DD wait list.  The Individual Family and Support Program funds are a joke, and this January only 600 requests were granted out of 3300 applications.  Because of our denial, my oldest son will not receive occupational therapy this year because we cannot afford to pay out of pocket for the service.
If my children were diagnosed with diabetes or multiple sclerosis and our private insurance refused to cover their medically-necessary treatment after age 6, people would be horrified and outraged.  Why is there not the same demand to protect children with autism?  Contrary to what the current law implies, autism does not go away when a child turns 7, or 10, or 21.
Applied Behavior Analysis is the most common evidence-based therapy for children with autism.  Both my boys receive ABA, and it is because of this therapy that my nonverbal oldest son learned how to feed himself, potty train, make eye contact and greet people, answer to his name, gain academic skills necessary to transition to public school… I could go on and on.  ABA saved us.  He turned 7 last summer and aged out of required insurance coverage.  We now rely on Medicaid to pay for M’s 6 hours of weekly ABA therapy.  My husband and I–both college graduates, employed full-time, with a household income over $100,000–rely on M’s Medicaid to pay for what private insurance should be required to cover.  The current system forces regular able-bodied middle-class families to rely on the Commonwealth for financial assistance, and it is within your power to change that.
ABA is expensive, but the actual impact on insurance premiums in minimal.  The State Corporation Commission reported that coverage of autism spectrum disorders led to a $2.66 per year per member increase in premiums in 2013.  In states that have no age cap, premiums raised on average less than $0.50 per month per member.  The cost of a couple Starbucks lattes will save families and the state between $1-2 MILLION over an autistic person’s lifetime.  The resources available to Virginia families to afford meaningful and medically-necessary therapy for children with autism is extremely limited, and the absence of insurance coverage forces many families to pay out of pocket, anywhere between $25,000-$50,000 for services.
Please vote YES for SB1457.  Thanks so much for your time.
I sent the same message to members of the House C&L Committee.  Find your delegate’s and senator’s names, and make a call or send an e-mail on behalf of my family and every Virginian with autism right now!

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