Autism is My Superpower

While we are grateful for the parents and individuals with disabilities that came before us who secured Nate the right to a free and appropriate education and a school-based learning program that accommodates and responds to Nate’s individual needs, we have a long way to go in creating true equality and opportunity for those with disabilities, autism and otherwise.  I could go on about job creation, care after the age of 21, and the like but today I need to talk about something that should be a given right in any first-world country: health insurance.  We get health insurance coverage through Chad’s full-time job, which covers me, Chad, and Nate.  And it’s good coverage — Anthem Blue Cross Blue Shield, in fact.  When we call new doctors (who always respond to “Are you accepting new patients?” with “What insurance do you have?”), there’s a bit of an ooooh and aaaah when we tell them we have Anthem and their appointment book opens wide for our family.

You’ve likely seen the blurbs on television, in newspapers, or on Facebook about autism insurance reform.  Autism Speaks has really championed the issue, working on a state-by-state basis to cause employers’ insurance plans to cover autism-related services for their employees.  There’s often big press releases touting the passage of autism insurance reform legislation, which has now in thirty-two states.  Connecticut passed its autism insurance reform law in June 2009 and it went into effect on January 1, 2010, the exact date of Nate’s entry into the Birth to Three system.

Charming Like Dad

Everything I’ve said so far is great, right?  We have insurance coverage — and it’s Anthem!  Connecticut passed an autism insurance reform law — and it went into effect right when Nate was diagnosed!  What’s this woman got to complain about?  I’ll tell you.  It’s a little something called self-insured plans and ERISA.

Did you just say what the what?  Because that’s exactly what Chad and I said when this whole incredible mess started unfolding.  I’m going to try to explain this simply — because this is kind of complicated yet really important.   Self-insured (also known as self-funded) insurance plans are used by a significant number of large corporations and municipalities.  This type of insurance allows corporations to pay claims out-of-pocket as they are incurred rather than paying a fixed per-employee premium to an insurance company, ultimately saving them money.  In many cases, like ours, the employer hires an insurance company (e.g. Anthem) to administer the paperwork and give employees access to a particular network of doctors, which makes the employee oblivious to the behind-the-scenes operation of their insurance plan.

Self-funded insurance plans are governed on a Federal level by the United States Department of Labor and The Employee Retirement Income Security Act (ERISA), which exempts employers who utilize these insurance plans from complying with state regulation.  This is the important part, people.  This means the Connecticut Autism Insurance Reform Act and all of its benefits don’t apply to our policy.  Because there’s no requirement to comply, Chad’s employer (and many, many, many others) simply don’t provide coverage for autism-related services.  How many employers are we talking here?  The Department of Labor’s Annual Report, issued in March 2013, said that 19,800 employers, representing 30 million participants, utilized self-insured group health plans.  Autism Speaks’ ERISA Tool Kit cites the self-insured companies that offer autism benefits.  The total count?  Sixty two — and Autism Speaks’ publication doesn’t detail what the provided benefits are and if they’re competitive with any given state’s autism insurance reform acts.

Curious George

So what would the benefits be?  The Connecticut Autism Insurance Reform Act provides up to $50,000 per year in behavioral therapy for individuals under the age of 9 who are autistic.  (Benefits change by age and end when you’re 15, which is a whole other issue.)  This covers behavioral therapy (ABA); physical, speech, and occupational therapy; and psychiatric and psychological services. Here’s what we get through our health plan that apply to Nate’s particular needs: 50 physical, speech, and/or occupational therapy visits (total) per year, which is a benefit offered to all plan participants regardless of diagnosis or need.  And that’s it folks.  That’s it.

With no autism insurance coverage, what does Nate have?  He has awesome school-based therapists, who he works with for thirty hours a week and provide him with applied behavior analysis, daily speech therapy, weekly occupational therapy (30 minute sessions), and monthly physical therapy (30 minute sessions). Using our existing insurance benefits, Nate also sees a private occupational therapist and physical therapist for a total of two hours per week; our insurance covers fifty of the visits for one therapist and we pay $80 per 45 minutes for the other.  Nate is growing and improving and getting stronger — but we know we could get there much faster if we had additional support at home.  One of the quirky things about autism is the lack of ability to generalize skills.  To have an ABA therapist or BCBA at home to help Nate transfer in-school lessons to the home environment and address home-specific behavioral issues, our boy would really thrive.  But this additional therapy is financially out of reach.  So I try to pick up as much as I can from Nate’s teachers and therapists and implement what I can at home.  

Oh No

So how did Chad and I become so well versed in this particular topic?  You better sit down for this one.  Through administrative issues that aren’t appropriate to discuss here, Anthem began sending our family Explanation of Benefit statements after he graduated out of the program with denied claims for Nate’s Birth to Three services .  There were lots of denied claims — with four zeros behind the large lead number.  And that’s when the multiple conversations with Anthem began…and when we learned we are on a self-insured plan and that my husband’s employer only provides $3,250 of Birth to Three service payments per year…and when we learned that first and second grievance review panels are unsympathetic to the cause.  (We’ve now appealed to the highest panels and no further appeal can be made.)  While we believe we have things resolved with Nate’s Birth to Three provider, it still keeps us up at night.  Because this could financially devastate us in an instant — us and many other families who are simply trying to provide the best care for a family member in need.

Some programs have been implemented on a state level; Connecticut has two autism insurance programs for those that aren’t covered by the insurance reform.  The first is Medicaid; we make too much money to qualify.  The second is a program housed at the Department of Developmental Services in the Division of Autism Services at the State of Connecticut.  A Medicaid waiver program (meaning they only look at Nate’s income instead of our family’s income), it would provide Nate with $60,000 of services per year.  This program is open to Connecticut residents ages three and older.  Though we have applied and been accepted to the program, Nate’s application is now on a gigantic wait list.  The program only has 76 slots; all are taken.  The program administrator could not even ballpark how many years Nate will wait as slots only become available when someone moves out of state or dies.

Beep Beep

Today I sent letters to President Obama, Connecticut’s U.S. Senators, and our district’s U.S. Representative explaining this pickle — because the change has to be made on the Federal level in order for any states to see a change — and I hope the letters are actually read.  If you’re so moved, I hope you’ll bring this issue to the attention of your senators and representatives, too, because this affects anyone whose employer utilizes a self-funded insurance plan — that’s most large corporations and city governments.  And hopefully some change will be made that will require these large employers, the ones who could afford the expense the most, to provide health insurance benefits to those on the autism spectrum soon.