ABA’s Urban/Rural Divide

Parenting a child with autism has its challenges. Washington Autism Alliance & Advocacy recognizes that families residing outside of metropolitan centers face additional access challenges due to their location. Rural areas of Washington state have significantly less access to medical infrastructure, transportation, and employment. Applied behavior analysis (ABA) services are no different. Beyond the major population centers of Washington, ABA clinics are rare. Due to a lack of ABA providers many children go years without services. Rural parents are frequently faced with an impossible choice: travel a hundred miles for service, leave their child untreated, or pull up roots and move. WAAA member Jessica Van Epps moved her family twice to get her son services, and his improvement was life-changing. Then that program closed, and she’s now facing a three hour drive to the closest clinic. She laments, “Maybe I’ll move again. Go to Seattle, and get a studio for the two of us.”

 

Rural/urban health care divide

Rural areas have significant economic and geographic challenges, leading to significant resource disparities. Furthermore, rural populations pay a higher percentage of their income on out-of-pocket healthcare costs. Primary care is generally less available in rural areas, but the disparity is even more significant with regards to specialized, highly sophisticated, or high-intensity healthcare. Residents of rural areas are less likely to have employer-sponsored health insurance, and more likely to be on Medicaid.

Darker areas have more patients trying to see fewer providers.
Source: CMS market saturation and utilization data tool

 

Beyond the healthcare infrastructure, there are significant additional burdens borne by rural populations. Rural populations are more likely to be low income or unemployed. Rural residents are more reliant on public transportation, but transportation options are much lower: only 60% of rural counties nationwide have public transportation. Each of these issues has an effect on rural populations’ health outcomes, so residents  experience higher rates of preventable conditions like obesity, diabetes, and cancer.

 

Rural/urban divide in applied behavior analysis

 

As a specialized health care service, applied behavior analysis can be difficult to come by in rural areas. Roughly one-third of Washington’s counties have no ABA providers – shown in white on the map below. One-third have a bare handful of BCBAs (light blues), and one-third have a significant number of BCBAs. On the other hand, King County, home to 30% of Washington’s population, has more ABA providers than the rest of the state combined.

 

ABA Providers by County

 

A primary complaint among Medicaid ABA providers is low reimbursement: For example, supervisors are required observe 5 percent of training, and while private insurance pays for the supervisor’s time, Medicaid pays $0. Where Medicaid does pay, rates are as low as 33 cents on the dollar compared to private insurance. Thus, even the largest insurance network in Washington has only 35 ABA clinics. As a result, at any given time almost 1,900 children with Medicaid are waiting for an opening to receive treatment.

In areas with denser populations, clinics can tailor their payor mix, accepting patients with high-paying private insurance and using those higher rates to offset losses associated with low Medicaid rates. However, if the service costs more to provide because Behavior Therapists spend more time driving, or there are fewer people with higher reimbursement, a clinic can afford to only accept a smaller percentage of Medicaid patients. When working with low-income families, some BCBAs try to provide enriching toys and educational materials to kids in need, but doing so adds another expense to the provider’s cost of services.

One proposed method of improving rural BCBA representation is expanding the University of Washington’s BCBA training program to their Spokane campus. Graduates frequently stay where they went to school, so an eastern Washington BCBA program should produce BCBAs who are more likely to practice east of the Cascades. Locally grown providers have other benefits, since they are familiar with the resources and needs of the area. Lastly, given the demand for BCBAs, there’s an economic benefit to easing the path to that area of employment for locals.

 

Takeaway


In urban areas, a child with private insurance might wait a month to receive ABA services, and a child with Medicaid will wait six to nine months. Rurally, the waitlists extend years, if services are available at all. Compounded by complex transportation issues, care is frequently placed completely out of reach. WAAA is working to improve the availability of ABA both rurally and for Medicaid patients. If this article resonates and you need assistance or to share your story, please reach out to WAAA via email or call the office at 425-894-7231.

 

Lessons a Dad Learned Dealing with Insurance and Autism

“She sure is pushing this medical care grant thing”. This thought kept running through my mind while I listened to the nurse at Seattle Children’s Hospital on a cold and rainy January morning.  I heard her say our son was diagnosed as autistic. That message was hard to miss. I also heard her stress we needed to start therapy as soon as possible. But those thoughts were pushed to the back of my mind; instead I kept thinking, “Why is she pushing medical care grants? Our insurance will surely cover whatever therapy our son needs”.  I was certain being a federal employee with the much-maligned “Cadillac Healthcare” meant I had nothing to worry about in terms of paying for my son’s therapy.  Unfortunately, I couldn’t have been more wrong.

My wife and I felt run over by a truck when our son was diagnosed with Autism Spectrum Disorder (ASD).  In reality, only I felt run over; my wife’s motherly instincts had suspected it for a while, as I did everything I could to explain away my son’s lack of development.  Regardless of how we felt, we quickly resolved to follow the medical experts’ recommendation and get our son into therapy as soon as possible.  Not so easy a task without the right kind of health insurance, as it turned out.

I look back at it now and laugh at the phone call with our health insurance company:  “Hi there, ah…my son was just diagnosed with Autism, and I was told by Seattle Children’s that he needs to start Applied Behavioral Analysis (ABA) ASAP, so I’m calling to see which providers are in network.”  The agent replied, “Unfortunately sir, ABA is excluded from this particular coverage. However, we do support you pursuing therapy for your son, but you must pay for the expenses out of pocket.” Flabbergasted, I replied “OK, I’ll read the policy again. I really think you’re making a mistake, there’s no way your company doesn’t cover ABA”.  Pretty funny right, me thinking a health insurance company doesn’t know EXACTLY what it does and does not cover.

I read our policy, and sure enough, there it was in bold font: “ABA Therapy is excluded from coverage”.  OK, I thought, there are about twenty other plans I can choose from under Federal Employee Healthcare Benefits (FEHB), and since my wife is pregnant, we can just use that as a qualifying life event to switch to one that will cover ABA.  Except there wasn’t one that would cover ABA, not a single one…in the entire State of Washington.  There were FEHB plans in about half the country that would cover ABA, but those in the other half were out of luck (people like us).  “I’ll deal with FEHB later” I thought, “right now I have to find another way to get insurance to get my son into therapy”.

Besides being a Federal Employee, I’m also a pilot in the Air Force Reserves.  Military Reservists are usually eligible for military healthcare called TRICARE Reserve Select (TRS), which does covers ABA.  But, there was a catch: Current Federal Law states if you are eligible for FEHB then you are ineligible for TRS (still waiting for someone in Washington D.C. to explain why some Reservists like me are denied a standard military benefit).  Now the military reservist healthcare option was out.  We looked at buying our son his own healthcare through the Affordable Care Act, but we missed the open season. We looked at the grants mentioned by the nurse, but we didn’t qualify based on income.  We were left with one last choice if we were to get our son into therapy right away; I would have to deploy overseas in support of contingency operations to get “temporary” military healthcare (very complicated, we could talk for hours).  I made some phone calls.  I begged and made ridiculous promises I could never keep, and I had my orders to deploy in the summertime.  While it wasn’t my first choice to leave my wife alone for a few months with a special needs toddler and a newborn, it did mean we could get our son into therapy right away, and we were extremely blessed to have absolutely amazing family members and friends volunteer to help in my absence.  Lesson One: “There are lots of healthcare options out there, and while they might initially sound out of the question, in the end, they might be better than nothing.”

So we solved the first problem of getting our son into therapy, but like I mentioned, it was only a temporary solution since the military healthcare would end six months after my return.  The much larger fight was how does an individual get a federal program like FEHB to change their policy?  The short answer is an individual can’t do it alone; it takes a lot of help.

Like most parents who recently learn their child is autistic, you log on and start to devour the advocacy websites.  Both Autism Speaks and Washington Autism Advocacy and Alliance (WAAA) were a wealth of knowledge. These groups not only provided the facts, but they do an excellent job of distilling the information into the basics so those new to the advocacy efforts could jump into the race with both feet running.  I was a man on a mission. I didn’t want to spend the rest of my life deploying to get the same benefits as other Federal Employees and Military Reservists, and I was willing to work night and day to get my son the healthcare he needed.  I read all the articles. I read the federal and state laws. I called my friends who worked in Washington D.C.  OK, I might have been a tad overzealous cold calling the Vice President of Autism Speaks, but I’m sure she has forgiven me.  Lesson Two: “Find established advocacy groups to further your cause and avoid reinventing the wheel.”

After educating myself with the help of advocacy groups, I decided it was the right time to call my Congressmen and Senators.  My Congressman Denny Heck’s staff was great, meeting with me almost immediately. I even got the opportunity to meet with Congressman Heck personally.  You would have to ask Congressman Heck, but I got the distinct impression by the expression on his face that he thought “not giving this guy the same benefits as other Federal Employee and Military members is the dumbest thing I have ever heard”.  With the help of Autism Speaks and WAAA, I was also able to meet with staff members of both Washington State Senators.  Despite these meetings, no laws were changed, and as far as I know, Congressman Heck was the only one who wrote a letter on my behalf inquiring why ABA Therapy was not mandated for FEHB plans.  Lesson Three: “Even though Government Representatives may be sympathetic to your cause, it involves a long process (measured in years, not months) with no guarantees of success”.

Finally, in attempt fix the lack of benefits under FEHB, I turned to social media.  Initially, my efforts were haphazard, as I sent out a barrage emails to friends, posts on Facebook and tweets on Twitter.  This effort got me nowhere, and it took my son’s Godmother, Lori, to show me how to leverage social media.  Lori excellently wrote an emotional blog; one that not only described my family’s situation, but more importantly put a human face on this issue (you can read it here).  By sharing Lori’s blog with others, I was eventually contacted by a journalist who wrote an article about our family’s plight, published in USA Today.  Lesson Four: “Learn how to tell your story in way resonates with those unfamiliar with the issue”.

It has been a long ten months of advocating for my son.  There have been way too many dead ends and disappointments along the way.  But finally, I received an email last week from a FEHB provider saying that they will begin covering ABA Therapy!  I don’t know if all my efforts had any real effect in changing the policy, but I do know that the combined efforts of all the parents like us made a huge impact.  The fifth lesson I took away from this experience was “Never give up fighting for your children”.

Speaking about huge impacts, my son has been in ABA Therapy for eight months. He’s gone from being almost completely non-verbal to saying “Daddy, can I have apple juice please” and “I love you Mama”. My deployment was an emotional one for my family, but upon my return, my son said, “Daddy, I missed you” to me, and could do all his ABCs, things we were told he may never do.  There’s no way my son would have made this kind of progress without ABA; and while the cost might be high (upwards of $60,000 a year), Insurance companies should see it as small price to pay for helping ASD children in becoming functional adults. Therefore, the last lesson I took away is “ABA works!”

 

Neurodevelopmental and Behavioral therapies’ exclusions in the Self-Funded plans

WAAA-LOGOIf your child or children are:

  • insured through a large employer that is self-insured (i.e. coverage through private (for-profit or nonprofit) employer including cities or counties), and
  • they have been denied medically necessary neurodevelopmental therapies (i.e. Speech Therapy, Occupational Therapy) or behavioral therapy (i.e. Applied Behavior Analysis)

WAAA would like to hear from you at your earliest convenience, please call 425.894.7231 with the following information:

  • your employer’s name
  • the type of treatment that is prescribed, but denied or unreasonably capped
  • name of the insurance company that manages your benefits

Please forward this note to any parent whose children may be in a similar situation.

Thank you for your consideration.

 

Mira Posner
Attorney
Washington Autism Alliance & Advocacy
16225 NE 87th St. Ste. A-9
Redmond, WA 98052
Phone: 425-894-7231
Fax: 206-299-3661

Court Certifies National Class Action for all CIGNA Insureds

PHILADELPHIA, Aug. 22, 2012 –/PRNewswire/ — A federal court in Philadelphia yesterday granted class action status to a lawsuit brought by the parents of an autistic child against CIGNA Corporation and related CIGNA entities for their policy of denying insurance coverage for an autism treatment known as Applied Behavior Analysis (ABA) therapy.  In their lawsuit, the plaintiff, Kristopher Churchill and Luis Rolando, allege that the CIGNA companies have a nationwide policy of classifying ABA as experimental, and therefore they do not provide insurance coverage for this therapy.  The plaintiffs claim that the classification of ABA as experimental and the denial of insurance coverage for ABA violates federal laws governing insurance plans. The court’s order today means that the case will proceed as a nationwide class action on behalf of all families having children with autism who were denied coverage by CIGNA for ABA therapy.

According to the lawsuit, ABA is a well recognized and scientifically valid form of autism treatment for children.  Numerous authorities and organizations have supported using ABA to treat autism.  For example, the use of ABA for treating autism has been endorsed by the U.S. Surgeon Generaland the National Institute of Mental Health. The American Academy of Pediatrics has said that the effectiveness of ABA “has been well documented through 5 decades of research.”  Currently, 31 states mandate insurance coverage for ABA-type autism treatments.

In the Court’s Order entered yesterday, Judge Juan R. Sanchez held that the following subclass shall be certified pursuant to FRCP 23(b)(3):

All individuals who, on or after November 24, 2006, (1) were enrolled in a plan administered by a CIGNA Defendant, or insured under health insurance coverage offered by CIGNA Defendant in connection with a plan, and (2) are currently enrolled in a CIGNA-affiliated plan, and (3) who, on or after November 24, 2006, made a claim or make a claim for Applied Behavior Analysis and/or Early Intensive behavioral Treatment for Autism Spectrum Disorder which was denied on the grounds that such treatment is deemed by a CIGNA Defendant to be investigative or experimental.

Churchill and Rolando are represented by Gerard Mantese, Brian Saxe, and John J. Conway of Michigan.  Mantese and Conway are counsel in several cases seeking insurance coverage for ABA therapy.  In 2010,  Mantese and Conway obtained final approval of a class action against Blue Cross Blue Shield of Michigan requiring payment of $1 million in claims for ABA.  They are also currently counsel for several military beneficiaries seeking coverage of ABA from the military’s Tricare insurer.  On July 26, 2012, a federal court in Washington D.C. granted summary judgment ordering that ABA Therapy be provided to military beneficiaries in that case.

Contact information for Churchill’s attorneys follows:

Gerard Mantese, Esq. Brian Saxe, Esq. Mantese Honigman Rossman and Williamson, P.C. 1361 E. Big Beaver Road Troy, Michigan 48083 248-457-9200 Office 248-515-6419 Cell

John J. Conway, Esq. John J. Conway, P.C. 26622 Woodward Avenue, Suite 225 Royal Oak, MI 48067 313-961-6525   Office 313-574-2148   Cell

SOURCE Mantese Honigman Rossman and Williamson

“Essential Health Benefits” Bulletin – Good news for autism! Will Washington state go green?

Late last week U.S. Department of Health and Human Services (HHS) indicated they will be permitting states to maintain coverage for autism behavior therapies, such as Applied Behavior Analysis (ABA), as part of their essential health benefits package when provisions of the new federal health care law take effect in 2014.
“HHS has committed to giving states flexibility in determining benefits,” said Lorri Unumb, Esq., vice president for state government affairs. “Entering 2012, 29 states representing 70 percent of the U.S. population have already made that decision and it is to require coverage of autism benefits. Today’s guidance gives states the freedom to maintain the coverage they have designed for their citizens without having to defray costs for ‘excess’ benefits.”

Under the Patient Protection and Affordable Care Act of 2010, the HHS was directed to determine an essential_health_benefits_bulletin package that would be offered in the individual and small group markets, both inside and outside of the Affordable Insurance Exchanges created under the law that begin operation in 2014. HHS, in its decision on Friday, gave the states the flexibility to choose from four types of health plans in establishing a benchmark for what services should be covered.

“Autism Speaks is optimistic this will enable states to continue to provide comprehensive autism therapies, such as ABA, as part of their essential health benefits package,” Unumb said. In the 29 states which have enacted autism insurance reform, Unumb said, most of the four plans would cover behavioral health treatments, such as ABA.

Here in Washington state however the disparity continues despite herculean efforts by advocates, multiple lawsuits testing one of the most comprehensive Mental Health Parity Laws in the nation.  As we ring in the new year, thousands of families are cautiously optimistic that Washington State Health Care Purchasing Agencies will catch up to the rest of the nation to provide our children, adolescents and adults with ASD’s basic health care benefits for treatment of autism.

Going for Green in 2012!!!

Peacefully,

Arzu Forough