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Diagnosis Day… Now What?

Recently a mom contacted me the day her 3-year-old son was diagnosed with autism. She needed an outlet, a virtual shoulder to cry on maybe, and someone to explain where to go next. Talking with this mom put me right back in our own diagnosis day for Thing 1. Honestly, it was difficult to confront those feelings again–stunned at missing red flags sooner; confusion over what services are needed, where to find them, how to afford them; guilt because it must have been something I did or didn’t do that caused this; frustration trying to understand the spectrum; relief to finally have a diagnosis; fear for my children growing up in a cruel world not made for their sensory and communication needs; and anger. Anger at everyone and everything.

So…your child is diagnosed with autism. Now what? Here are my observations and suggestions on your next steps.

First, there is a grieving process, so give yourself time to wrap your head about what ASD means for your child. Talk to your spouse. Talk to your pastor. Find another parent to vent to. Whatever you do, do not wallow and stew in your anger, fear, and sadness. I could not tell anyone about the diagnosis without crying. I made other people cry with my crying, and then I felt guilty for that! But it’s okay to cry. You will go through the range of emotions, and then you’ll pick yourself up and prepare to kick ass.

Second, know your insurance plan inside and out. Figure out what therapies are covered and the coverage amounts. Learn about the autism insurance mandate in your state. Make sure you are taking advantage of all available coverage. Having mandated coverage in our state was a game-changer for our family because it afforded us significantly better services than our county’s early intervention or early childhood special education programs.

Third, learn about Medicaid waivers. In Virginia, we have EDCD and ID/DD waivers. Regardless of where you live, qualifying for waiver services requires tedious screenings (and, more frequently and unfortunately, appeals and more screenings). Your local Autism Society of America chapter is the go-to source for understanding waivers. Most offer workshops and many other resources. A couple weeks after Thing 1’s diagnosis, I called the Autism Society of Central Virginia and left a message asking about waiver workshops. Since I just missed their last one, the ASCV president called back and spent almost two hours with me on the phone, telling me everything I needed to know. That was a huge breakthrough because after that conversation, I had a plan.

Fourth and finally, join a support network. You can find this in a Facebook group, joining the Autism Society, going to a TACA coffee talk. Commiserate with other parents, ask questions, share recommendations, stay connected. Me, I started following blogs, and some of my favorites are:

Our diagnosis and psychological report for Thing 1 came with a massive to-do list. The psychologist recommended we consult with a geneticist, neurologist, and gastrointestinal specialist; increase the frequency of Thing 1’s speech and occupational therapy; and get our son intensive ABA services. We spent time lingering on wait lists, and it took 3 months to increase speech therapy, 10 months to start in-home ABA, and years to visit all the medical specialists. Sometimes it is difficult to see the forest through the trees, but we have much to be grateful for five years into this autism journey, especially the ways our family is loved and accepted.  Yesterday we threw a big birthday party for our older boys, and eleven little kids and their families showed up to party with us.  It was heartwarming to see all these neurotypical kids play with our boys and sing “Happy Birthday.” And that’s what it’s all about, right? Kids enjoying their childhood, making friends, learning, growing, and having fun. It’s difficult to see that light and feel hopeful on diagnosis day, but I promise you will get there. Water_Birthday Find additional resources here:

First 100 Days Kit–Autism Speaks

Handy Handouts

Introduction to Autism–TACA

The Out-of-Sync Child: Great book!

Wrightslaw Special Education Law & Advocacy

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Good Morning America!

Because of our support of HB1940, we developed a relationship with Autism Speaks.  The organization published my blog post (My Day at the GA) on their website, and our names were passed along to ABC News as they started working on a piece for Autism Speaks’ 10th birthday.  As I responded to the hey-can-you-do-an-interview e-mail from Autism Speaks, I thought for sure it was not going to happen…but it’s nice to be considered.  Seriously, my family is not that interesting.

A couple days later I got an e-mail from an ABC producer.  “WTF have I gotten us into?” was all that went through my mind.

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Twenty-four hours later, our house was spick and span, and the next day a field crew descended on our home.  Thing 1 flipped out when they first arrived, but he calmed down while my husband and I sat for our interview.  We were asked questions about how we met, how long we’ve been married, when did we know our children had autism, how “devastated” were we when Thing 2 was diagnosed, what is applied behavioral analysis, why does it cost so much, what has ABA done for our boys, why should Virginians support an expansion of the autism insurance mandate, and so on.  We answered questions for about an hour, and I had butterflies fluttering in my stomach the entire time.  We explained that ABA has been a game-changer for our family and gave Thing 1 a voice.  It’s expensive because highly specialized one-on-one therapy usually is, and you pay for what you get.  It’s important that Virginians support HB1940 because when it comes to the care of persons with autism, you either pay now or later.  We prefer to invest in our boys now so they can learn how to make friends, survive school, and one day live as independently as possible.  We also pointed out that having an age cap tied to autism insurance benefits is discriminatory.

The producer using the term “devastated” to describe going through the diagnosis process twice bothered me.  Autism is not a death sentence, and while I certainly don’t want to see my children struggle to communicate, make friends, and gain acceptance, I get to tuck them in, read them stories, and smother them with kisses every day.  That is a luxury, not a devastation.

The field producer does a lot of work for NPR and also published a short article with our interview here.

Once our interview was done, the boys came downstairs and were followed around by the camera and sound guys for two hours.  They shot video of the boys playing games and trains, eating a snack, swinging outside, and reading a book.

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It was a very long day.

One week went by, then another.  We weren’t sure if the footage was chopped, if it was being saved for Autism Awareness Month, or if this story was going to air at all.

February 25 is the 10-year anniversary of the founding of Autism Speaks, and Good Morning America celebrated the date with an interview with Bob and Suzanne Wright, their daughter and grandson, and US for your viewing pleasure at 1:30 into the segment.

Don’t blink, though, or you’ll miss it.  Some people get fifteen minutes of fame.  I’m happy with our 10 seconds.

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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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My Day at the GA

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I spent my Friday morning at the Virginia General Assembly to lend my support for House Bill 1940.  For those of you unfamiliar with Virginia’s legislature, our General Assembly is made up of 40 Senators and 100 Delegates who convene every January for either 30 or 60 days.  On Wednesday, Delegate Tag Greason introduced HB1940 to end the age cap on autism insurance coverage in our state.

A little background… In 2011, our General Assembly passed a law requiring insurance companies cover autism therapies, specifically pharmacy care, psychiatric and psychological care, speech therapy, occupational therapy, physical therapy, and behavioral treatment.  When it comes to behavioral treatment, applied behavior analysis (ABA) is specifically mentioned, with a cap of $35,000/year.  Besides the monetary cap, the age is currently capped at 6.

We all know autism does not magically go away when a child turns 7.

Both Matthew and Wesley receive ABA.  We have been blessed to work with wonderful providers and both boys continue to make gains with this treatment.  Because of ABA, Matthew regained many skills he lost after a massive regression, working on academic, language, self-help, and social skills.  Because of the insurance mandate, we could afford to enroll Matthew in The Founders Center of Commonwealth Autism until he turned 7, which is where Wesley goes now.  Matthew currently receives home-based ABA before school two mornings every week.

When Matthew aged out of the insurance mandate, we were not left high and dry because he also receives funding via the state Medicaid system.  We went through various screenings when Matthew was 3 years old and were found eligible for EDCD and ID waivers, which granted Matthew Medicaid benefits based on his personal income, not our family income.  The waivers are complicated and bureaucratic; but in a nutshell, Matthew had to fit a criteria for nursing home care to receive EDCD benefits.  The social worker who evaluated Matthew told me this particular waiver was intended to keep the elderly and mentally disabled with their families and out of institutions.  This is the system we’ve been thrown into.  I feel so horrible for friends who cannot access these services for their autistic children, but it’s symptomatic of a much larger broken system, which I tried to convey to the senators, delegates, and legislative aides I met today…My husband and I are both college graduates, employed full time, regular middle-class suburbanites.  We should not rely on Medicaid for services.

Knowing that opposition to HB1940 seems to be the thought that it will cause health insurance premiums to skyrocket, I used my own family as an example.  The state can continue to pay Matthew’s outrageous ABA bills, or let private insurance do the work for mere pennies to the consumer.

Last year, autism claims raised premiums $0.22/month in Virginia.

$0.22 and people want to cry uncle.

So here was my day…

On Wednesday, I contacted my senator and delegate.  I expressed my support for HB1940 and told them I was going to be at the General Assembly on Friday and would love the opportunity to speak with them in person.  I heard back from Senator Steve Martin’s office and had face-to-face time scheduled for 9:00.  His office was bombed, his secretary looked overwhelmed, and I had this song playing on repeat in my head:

At 9:10, his secretary got the attention of the packed room, pointed to me, and said I was next.  Out comes Martin, THRILLED to see a group doctors outside his door.  All caps really doesn’t convey how happy he was to greet those guys.  He tells them to come on in, to which little-old-lady secretary responds, “Senator, this woman is next.”

“Oh.”  Seriously, he looked sad.

I did my best to give him my spiel about Matthew and Wesley and the $0.22/month thing and how much I hate Medicaid in our 120 seconds together.  He suggested I make an appointment to meet him for coffee when the General Assembly is not in session.  In my mind, I was thinking, “A-hole, I need your attention right now, not in March.”  Instead, I thanked him for his time.  Then he hollered for the doctors.  Senator Martin is on the Autism Advisory Council, and I’m his constituent.  I was not expecting our meeting to be so disingenuous.  If I could insert the sound of a balloon losing air and flopping to the floor here, that would describe how I felt.  Deflate.  Sputter.  Flop.

I met up with a group from Autism Speaks, including several legislative aides and the organization’s Director of State Government Affairs.  They were all amazing, smart women. They learned that an identical bill was being introduced in the Senate today. I joined them in meetings with Senator Richard Stuart’s office and my delegate’s office, Manoli Loupassi.  Their staff listened, asked questions, and genuinely seemed interested in learning about the bill and how current coverage impacts families.  I was asked how our costs are affected, and what are the going rates for ABA, speech therapy, etc.  They wrote those numbers down.  How many hours of ABA did Matthew get under the insurance mandate?  How many hours does he get now?  What’s the difference between that school he went to and what he gets now?  All good questions because it shows they were trying to understand the problem beyond a sheet of talking points.  I got a follow-up e-mail from Delegate Loupassi this afternoon thanking me for sharing information with his aide, and he provided his cell phone number for any additional comments, concerns, or questions.  Now that’s amazing.

Then I came home and took a picture of my outfit.  I rarely look put together.

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The people from Autism Speaks asked if I would be available to come back for committee meetings.  Sure, why not.

In the meantime, you can help by contacting your own senator and delegate and tell them to support HB1940.  You can use this form letter here:

Dear _____:

My name is _____, and I live in your district.  I want to call your attention to a bill that is very important to me, my family, and my community.  Please support House Bill 1940.  This bill recognizes that autism does not go away when a child turns seven, and medical treatment is often still necessary.  The Virginia State Corporation Commission reports that the average annual claim cost per member for 2012 and 2013 were only $2.19 and $2.66, respectively.  Actual claims experience from states that have at least three years of autism insurance coverage and higher or no age restrictions indicate an average premium impact of less than 50 cents per month, yet recent studies show that intensive services can result in a total lifetime savings range of $1-2 million dollars!  I sincerely hope I can count on your support.

Feel free to share a personal story about how autism has impacted your life.

You can also share these details from Autism Speak and Virginia Autism Project:

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