Habilitative Services In Maryland for Kids with Autism- A Must Read!!!!

Wow.  Seriously for a while today that was all I could say. 

My project for the next few weeks is to figure out our insurance for next year.  I have been considering enrolling the boys in dual coverage (both the insurance from my work and the insurance from John’s) in order to have more allowed services, but mainly to have more therapy sessions.  Right now, as I have mentioned in the past, the rehab services dictate that each individual is limited to 60 visits for OT/PT/speech combined, which is woefully inadequate for both of them but for particularly for Nate who is in desperate need of speech therapy.

John’s work sends out a written bulletin detailing the medical plan options.  I was perusing the choices and immediately focused on the rehab benefits.  The most expensive plan offered 100 visits total which would not allow Nate to have both speech and OT once a week for the year- was getting pretty upset about this because my insurance premiums and deductibles are much much higher than John’s (and yes I work for a health insurance company).  Then I noticed something new.  Maybe I’m nuts, but never before have I seen a column for “habilitative services”  under the column for rehabilitation services. 

Here is the definition of habilitative services:

“Habilitation Services - Health care services that help a person keep, learn or improve skills and functioning for daily living. Examples include therapy for a child who isn’t walking or talking at the expected age. These services may include physical and occupational therapy, speech-language pathology and other services for people with disabilities in a variety of inpatient and/or outpatient settings.”

Here is what that column said:

Habilitative Services for Children Under Age 19

(Including physical, speech and occupational therapy, autism, autism spectrum disorder and cerebral palsy)

Calendar Year Maximum:

Unlimited

This benefit language is enough to make an autism mom’s heart start pounding.  What IS this?????  I want it!!!!  I emailed John right away and asked him to talk to his HR department.  But I wasn’t hearing back soon enough, so I googled my husband’s work, insurance, and habilitative services.  And that’s when I saw it.

An update to our current policy for 2013.  An update stating that effective May 1^st, 2013 habilitative services are covered for the above diagnoses with an unlimited calendar year maximum.  And the policy was made retroactive to January 1^st, 2013.  Basically this is saying that my kids can have two OT visits a week if they need them AND speech therapy every week.  Obviously I snorted something this morning and forgot about it.  So I called Cigna and read this to a member services representative, who stated that she did not see this under our benefits.  Sigh, maybe I was reading it wrong.  Damn it- I really liked lala land.  And then, the manager comes on the phone and asks ME if I can fax HER a copy of this policy.  Hell to the yes!!!  So I did.  I haven’t heard back from her yet. 

But I did hear back from John- the HR rep was not aware of this policy change either- but she looked it up and…..it’s true!!!!  I called the boys’ OT right away to let her know- she wanted to see the document too- she said they had only ever had one other client who had a habilitative services benefit and they had to submit a special application, yada yada.  So I emailed it to her.  She instructed me to get letters for the boys from their pediatrician stating that they have been diagnosed with autism spectrum disorder, so that they can bill under this service from now on.  Did you hear that???  The insurance company is going to cover something BECAUSE my kids have autism.  We don’t have to say “developmental delay” anymore.  So I called for the letters…and now, we should be all set.

But I was curious.  Why this wonderful, amazing, life changing shift???  So I did some research and found out the why.

http://www.autismspeaks.org/advocacy/advocacy-news/autism-speaks-weighs-maryland-insurance-reform-plan

http://www.pathfindersforautism.org/resources/understanding-insurance/autism-insurance-in-maryland

Autism Insurance in Maryland

Maryland has a Habilitative Services mandate. Habilitative Services include, but are not limited to, Physical Therapy, Occupational Therapy, and Speech for the treatment of a child with a congenital or genetic birth defect (including Autism Spectrum Disorder).  When the mandate was written in the late 1990s, it was the intent that services, such as Applied Behavior Analysis (ABA), would be covered by the language …but not limited to…that was included in the law. In practice, this has not been the case. Legislation was passed by the General Assembly in 2012 to clarify what services are covered and to address service access issues with the mandate. The legislation called for the creation of two workgroups: an Autism Technical Advisory Group (ATAG) and the Habilitative Services Workgroup (HSW).

The ATAG was composed of individuals with expertise in the treatment of Autism Spectrum Disorders (ASD) and was charged with determining the medically necessary and appropriate use of habilitative services for the treatment of Autism. The ATAG submitted their recommendations in April 2013. The recommendations are now entering the regulatory process with the HOPE that come November 1, 2013, ABA will be covered under the mandate. Read ATAG recommendations.

The HSW is charged with determining: if children who are entitled to habilitative services are receiving these benefits; if those children are not receiving the services, the reasons why; ways to promote optimum use of these services; and the costs and benefits associated with expanding habilitative services coverage to individuals under the age of 26 years. Their work is still underway. Read HSW Interim report. 

Only plans subject to Maryland Law are subject to the Maryland Habilitative Services mandate. About one third of Maryland residents’ health plans are regulated by Maryland law. However, residents covered by plans sold in other states or self-funded plans may offer coverage for Habilitative Services and/or Autism treatment.
Habilitative Services information from the Maryland Insurance Administration

So the regulation has been there it appears- but now it’s being enforced.  And God willing expanded upon come November 1^st! 

http://www.mdinsurance.state.md.us/sa/docs/documents/news-center/legislative-information/042513_atag_recommendations_final.pdf

I wanted to make sure I posted about this and quickly.  Because it’s open enrollment season.  Because everyone in Maryland who is effected by autism needs to ask this question before enrolling in a new plan or even staying with the same one.  This benefit was never an option for us in the past and suddenly my husband’s employer is providing it with all of the health plans they offer.  It can happen to you too!  Do a little research!  What awesome news!!! 

Autism, Insurance, and Maryland

I bring a pretty unique perspective to the world of autism and insurance.  For those who don’t know, I am a nurse- not only a nurse, but a nurse coordinator for an insurance company.  Back when I was a nurse in a hospital I had the “typical” view of insurance companies- you know, they’re evil.  They deny everything.  They are MEAN.  I would find out that one of my patient’s admissions was being delayed because the insurance company had not yet approved it and I would be all up in arms about it.  What’s wrong with them?  What’s to approve?

See now I know that maybe 30-40% of the time I was right to blame the insurance.  Unfortunately, what I didn’t understand is that it goes both ways.  Much of the time it was an issue of the hospital NOT CALLING for authorization until you know, the day before.  And it was a bone marrow transplant- several hundreds of thousands of dollars.  That type of determination deserves serious consideration.  I know that first hand- I make those determinations every day now.  Half the time that the pharmacy tells you that the insurance “hasn’t approved” your medication- guess what?  Yes, the insurance is requiring a prior authorization for either a very expensive or unusual drug- that is their role.  We pay them (or the government pays them depending) a certain amount and they use those funds to responsibly deliver services.  And they are cost cutters for sure.  Do I always agree with it?  No.  But that’s how it goes right now.  The point is that 9 times out of 10 when one of my patients calls me with this complaint- the problem is that the physician never called the authorization request in.  The pharmacy notifies them, and because they are busy, or forget or whatever, they neglect to make the call.  But the insurance takes the fall. 

I am not claiming that the insurance company is above reproach by any means.  Believe me, there are days when I feel like the bad guy for sure.  And there are days that I would like to reach through the phone and wring the neck of whatever representative of my insurance company is telling me that one of my sons is not covered for a service. 

We all know that with autism it is unbelievably difficult to get your child what they need.  I can’t even count how many times I have complained about that in my blog.  Even for the services that are covered, most of the time you can’t even use the diagnosis of autism.  It has to be developmental delay or something similar.  Otherwise it will be denied. 

Today I attended a very interesting conference call for work that was about insurance coverage and autism.  A very interesting and disturbing map was shown at one point.  I knew that Maryland has not participated in the widespread insurance reform that is ongoing to include therapy for autism as one of their mandated services.  What I did not know is that Maryland is one of only 8 states that have chosen not to participate.  Now all of the states that participate have not done so in a thorough or effective manner, but at least there have been steps.  Maryland- nothing.

A few months ago I posted about autism case management services that were offered to me through CIGNA, our insurance company.  I was so mad that they told me that an autism case manager could make me aware of extra services available for my children, and then when I spoke with one they told me that basically, my plan specifically offered nothing. 

http://jackandnatesmom.blogspot.com/2013/04/added-benefits-really.html

At the time I had read about the lack of mandate for ABA and related services in the state of Maryland.  I guess I was under the impression that because I have private insurance, it didn’t have to be state mandated in order to be provided.  I was wrong.  It does.  And it’s not CIGNA’s decision, it’s the employer’s.  And employers as a whole are going to take the least expensive route correct?  So they are going to provide the services that the particular state says they have to provide.  And the particular insurance company?  Well they really have no say in the matter.  They are administering the benefits that their client authorizes them to provide.  In Maryland, this does not include any services for autism.  So basically, we are screwed.

I feel a little bad- I have been mad at Cigna.  Blaming the wrong entity.  Now I am mad at the state of Maryland. To all of my Maryland readers- this is CRAP and it needs to be changed a.s.a.p.   Consult the information below, contact your state representative.  I know that I am going to.  How many of us have children who are missing opportunities, regressing, because we can’t obtain coverage for ABA therapy?  Private ABA therapy, while very effective, is also very expensive.  For parents with neurotypical kiddos, take a gander:

http://www.tacanow.org/family-resources/start-an-in-home-therapy-program/

ABA programs can be costly anywhere from $15,000-$80,000 each year and beyond

What parent do you know that could afford this tab?  Other than you know a real housewife of New Jersey or former MTV VJ?  Let’s get real. 

Just another example of why it is so important to do your research and stay informed.