*Note: It’s been a busy couple of years. There is only one LinkedIn article that’s been (partially) revised. I plan on making my way through the rest soon. Thank you.
Are we Behaviorologists or Psychics? “Think”… FAST!
The field of applied behavior analysis is in dire straits. It requires improved coordination and collaboration among its state agencies and insurance/service providers. Our current, ill-equipped, insurance-funded autism-service-provider model is broken, because it was neither developed nor designed to effectively manage the hundreds of thousands to millions of families recently approved for insurance-funded Applied Behavior Analysis services. Desperate parents are so unsuccessful in finding appropriate services that Autism Behavioral Services (ABS), which only operates out of Massachusetts, has received multiple requests from nearly every other state for assistance in finding services or locating service providers without a minimum 6-month waiting list. This state of affairs is not improving. In fact, private insurers are trending toward reducing allotted hours and requiring advanced projections for complete termination of behavior services, on occasion from the start of services. Are we behavior analysts or psychics? We are definitely not psychics. The following information will make that clear.
State insurers are attempting to discourage Behaviorologists from creating social-skill and community-based programs. Exactly how does this uphold the comprehensive ABA services mandated by state law? Who is monitoring these imposed limitations to services that were formulated to save insurance providers money?
Many individuals in the Massachusetts autism community know professionals who have taken it upon themselves to ensure that legislation under ARICA is upheld. These individuals not only conceived Massachusetts’ autism reform laws but also created a commission approved, 35-member team to address the long-term needs of individuals with autism. Even with the tireless efforts of individuals such as Amy Weinstock and Maureen Buckley to safeguard against complicated disarray, Behaviorologists still find our field in dire straits.
The individuals in Massachusetts referenced above and others who have played significant roles in our field’s advancement toward obtaining insurance-funded ABA services for every MA family affected by autism had the persistence and determination needed to create the most comprehensive autism insurance reform law in the United States. No other state can rival Massachusetts’ Act Relative to Insurance Coverage for Autism (ARICA).
Shouldn’t these same teams of individuals, creating commissions and controls to ensure the comprehensive needs of individuals/families impacted by autism are met, be expected, or better yet, required to exist in every state? Would this not benefit each state adopting this approach, given that Massachusetts has the best autism reform law in the country? Would not many of our concerns regarding the lack of service availability for families living with autism be ameliorated if states adopted stronger insurance legislation reform with the help of educated and driven professionals supported by commissions established to ensure appropriate access and availability of services needed and deserved?
Unfortunately, the answer is no.
It may not be a popular answer, and not all will agree, but that does not change the fact that even individuals motivated and driven to a point capable of creating the best autism insurance reform law in the land would under no circumstance be capable of addressing the concerns our field faces at this point in time. The predicament our field is in is extremely tricky, puzzling, and problematic. It cannot be fixed by commissions with objectives to create long-term plans to ensure that needs of individuals/families impacted by autism are met. Although, I sincerely applaud those who have led us to this point. Without their initiatives, we would not be attempting to address the lesser of two evils, or are we? Again, the situation we face is tricky, puzzling, and problematic. Would we rather have more covered families unable to access services than families who are unable to access services in the first place due to a lack of coverage?
Considering that families affected by autism are moving to Massachusetts for its unrivaled insurance reform law, how is it possible that Massachusetts is not much better off with regard to readily obtaining services than any of the other 42 states with autism insurance reform laws? The answer is as simple as it is sad. The fact is I do not believe that any number of people assigned to a commission nor any comprehensive autism insurance reform law will facilitate nor support the lack of services available to families struggling to obtain them. It is not the tireless efforts of strong-willed individuals that will make the difference we need. This notion circles back to the initial statement that our current ill-equipped insurance funded autism service provider model is broken as it was not developed nor designed to effectively manage the hundreds of thousands to millions of families recently approved for insurance funded ABA services. In fact, one state has transitioned from no age or reimbursement cap to restrictions on monthly or yearly allowances, which only compounds the discouraging state of affairs most practitioners and families have yet to recognize exist.
Helpless families continued to contact ABS over the phone, through our website www.absaba.com , email addresses, social media pages, so frequently from every state imaginable; ethically, we could no longer sit idly by while little to no action was taken to support or provide families in desperate need with additional assistance. Therefore, we created two free autism resource sites on Facebook, granting us the ability to provide information that points families in the right direction, while attempting to keep them aware of the field’s imminent demise should action not be taken immediately. The sites are as follows:
- Under construction.
We encourage all our resource page members to first seek support from other members in the group, which in turn has had an extremely positive effect on those providing support. We offer positive reinforcement in the form of thank-you posts and attached pictures, along with the names of those we see jumping in and providing other members with support. It may not be much, but it is certainly better than doing nothing.
As mentioned earlier, vulnerable families unable to obtain the only scientifically proven behavioral method effective for autism, applied behavior analysis, are so desperate and distressed that many are packing up and moving to other states, including Massachusetts, where obtaining services is not guaranteed but possibly simpler. Even Massachusetts, with its unparalleled autism insurance reform law in relation to the other 42 states’ laws, is still plagued with waiting lists for a minimum of four to eight months per provider. The average waiting list for a neuropsychological assessment to obtain a diagnosis can easily exceed one year. Just a couple of months ago, parents who were stuck on waiting lists received bittersweet news, which broke on March 1, 2016: An additional 8.2 million federally insured individuals were approved for insurance-funded ABA services. This was by far the largest autism insurance reform law to date and will take effect in fewer than six months.
Take the following into consideration: In 2011, Massachusetts passed ARICA, allowing insurance-funded coverage of ABA services for 75,000 families. Approved in April 2010 (8 months before ARICA would take effect on January 1st, 2011), the Massachusetts Special Commission Relative to Autism discerned the vital adjustments required to ensure that these 75,000 families would receive access to suitable and effective services. Although attempting to manage and coordinate streamlined services alongside the authorized insurance reform law for the next 35 months, it was concluded in March 2013 by the Special Commission appointed by the Honorable Deval L. Patrick, Governor of Massachusetts; the Honorable Therese Murray, Senate President; and the Honorable Robert A. DeLeo, Speaker of the House, who directed the Special Commission in saying “we need to determine the current status of available services and supports, to identify gaps and to make recommendations to better serve individuals on the Autism Spectrum,” in the “Letter from the Chair” authored by Barbara A. L’Italien, Chairperson, Massachusetts Autism Commission.
This portion of the “Letter from the Chair,” which makes up the first few pages of the 174-page Special Commission Report, is followed by additional troublesome information. The letter called for
bipartisan members of the MA State Legislature to work in collaboration with relevant state agency representatives, leading medical practitioners, educators, advocates and parents. In addition, we expanded our ranks with input from four hard working subcommittees, which provided in-depth study and evaluation of the issues that individuals with Autism encounter throughout their lifespan.
However, the Special Commission nevertheless found the following:
Despite all of these efforts, the Autism Commission has determined that tremendous gaps in services and supports still persist and that there is a critical need to develop a comprehensive statewide approach that will respond to the needs of this burgeoning population.
In addition, the Special Commission declared, “The Commission has created a ten-year roadmap to achieve our goal of developing comprehensive supports and services for our children and adults with Autism”. However, this was initiated 3 years ago.
Furthermore, L’Italien went on to communicate the following information to the Special Commission:
Beyond this, three critical needs were identified: individuals with Autism of all ages need a single entity to provide comprehensive information and referral support, mental health services are difficult to access and need to be widely available and tailored to the unique needs of this population, and eligibility for adult services needs to be based on functional ability rather than IQ. In addition, many adults need housing, job coaching to obtain and retain employment, and case management to assist in realizing their potential.
While relentlessly searching for the suggested method or plan of action that would imply that Massachusetts has the capability of suitably servicing 75,000 families in need of services for families affected by autism, I could not help but feel an overwhelming sense of impending doom, which I will explain in the following.
As the “Letter from the Chair” came to a close, one could not ignore the signs that continued to plague the entire introduction of the Massachusetts Special Commission Relative to Autism Report to Governor Patrick and his team. Finally, L’Italien concluded unenthusiastically:
Given that Autism prevalence is increasing at an alarming rate, the Commonwealth must move forward with a plan to better manage services and supports for people on the Autism Spectrum so that they can realize their potential and participate fully in the community. The Commission is committed to continuing its work in partnership with the Governor, the Legislature and state agencies in order to accomplish these goals.
Massachusetts could not have been aware in 2011, when ARICA was implemented, that on October 1, 2015, Mass Health, MA’s state insurance provider, also would be required to cover Applied Behavior Analysis for individuals impacted by autism. Reliable or consistent numbers of Mass Health families currently seeking services or affected by autism in Massachusetts hasn’t been determined by reliable sources. However, Mass Health families shall certainly exceed the 75,000 approved by ARICA in 2011, many of whom are still on waiting lists all over the state. The available resources for families with Mass Health after October 1, 2015 are so scarce that many families are unaware that their Mass Health state insurance now covers ABA, as evidenced by the number of times frustrated parents e-mail or write on our Facebook sites that Mass Health should cover ABA.
As if matters could not get worse, most unsuspecting families with private and/or state insurance who are counting down the days, minutes, and seconds left before obtaining their own ABA services have no idea that 8.2 million federal employees will be eligible for their own mandatory benefit of ABA services come this January 1st, 2017, which will be nowhere to be found. In my estimation, service providers will begin cherry picking families who have insurance carriers with the highest reimbursement rates from never-ending waiting lists, and who is to stop them?
As an autism community, we need to acknowledge that we are not equipped to service the number of existing approved families, let alone the number of additional families that will be incorporated into our ill-prepared service-provider model in fewer than six months. Families, advocates, politicians, and countless others fought so long and hard to obtain the insurance-funded ABA services so many deserve and ultimately need. What are we doing to ensure that families receive services, besides passing laws making them eligible for service coverage while in fact making them even more ineligible?
Waiting lists continue to plaque this industry in every state across the United States, yet politicians and lawmakers do not seem to be aware that our system, which was not designed to treat even existing approved families, is in dire straits and has been for some time now. What are an additional 8.2 million families going to do to a weak, ill-prepared service-provider model when 1 out of 68 individuals continues to be diagnosed with autism?
Behaviorologists may not be psychic, however we don’t need to be to see the predicament around the corner that many seem to be avoiding or unaware of. Someone needs to do something.
What are we going to do? Please stay tuned.
(Sneak Peak 6.28.2018)