By: Candice Colón-Kwedor, PhD, BCBA-D, LABA
This year marks the twelfth annual World Autism Awareness Day (April 2, 2019). But of course, many families and advocates were working tirelessly to promote awareness long before this day was created, and they continue to do so today. The Merriam -Webster dictionary states that awareness is the “knowledge and understanding that something is happening or exists.” Knowledge of Autism Spectrum Disorder (ASD) is important but the true part of awareness that should be focused on is understanding, which may only be brought about via experience and education.
When I first started off in the field of applied behavior analysis (ABA) working with children diagnosed with ASD, the services provided to families in the state of Massachusetts were either school-funded or privately paid by the family. I still remember the many families who reached out in despair and one family’s story in particular, will always remind me of just how far we have come. I remember the mother who would recount her experiences of trying to teach her young daughter basic communication skills. For instance, I can remember the time this mother recalled sitting on her kitchen floor for what seemed like forever until her daughter finally made one simple request and at the end both her and her daughter sat in tears. No doubt these were tears of frustration, but ultimately tears of joy over a victory of progress that they both experienced. This was a mother dedicated to teaching her daughter, but not naïve to the fact that substantial progress would require a team of qualified professionals to help support her daughter. A mother who knew that the parent support she received from the school was good, but it wasn’t good enough, as she needed additional in-home support to provide her daughter with additional learning opportunities tailored to her daughters’ individual needs in their home and community. This same mother would tell stories of long arduous telephone calls with the insurance company trying to get them to fund in-home services for her daughter. The answer she received time and time again was “No”, that at most she could receive outpatient services once a week for one to two hours at a time, and that “ASD was categorized like depression or bipolar” and those were the services she could expect. She would sit on the other end of the phone trying to explain her child’s actual needs; she needed skill building exercises, assistance with her challenging behavior and most of all parent training and collaboration in her home so that she could also help to support her daughter. Unfortunately, these explanations always resulted in no change on the part of insurance company representatives.
As a young professional in the field of ABA and as someone who knew just how much support was needed to make meaningful progress, my heart was heavy when I heard this mother and others tell of their struggles. I wished I could do more for these families to help them receive additional services. Fortunately, over the last decade, education and advocacy has improved health insurance coverage for medically necessary treatments such as ABA. These advocacy efforts have not only resulted in a trend towards appropriate funding for insurance-based ABA services across the United States but also assisted in awareness regarding the prevalence of ASD and the unique service needs associated with the diagnosis. For instance, An Act Relative to Insurance Coverage for Autism (ARICA), was a law passed in 2010, requiring private health insurers in Massachusetts to provide coverage for the diagnosis and treatment of ASD. More recently, Current Procedural Terminology codes or CPT codes for ABA, which are codes maintained by the American Medical Association and used by medical providers to bill insurance companies for services, have transitioned from temporary (experimental, but effective treatments) to permanent (treatments proven effective via scientifically supported evidence) as of January 1, 2019. This change generally requires insurance companies to reimburse for ABA services as medically necessary treatments for those who need services.
Due to such efforts, today the child I mentioned above has had several years of access to insurance-based services in addition to school-based services and the impact has been remarkable for her progress. However, as fruitful as these changes have been, it is important to remember that there are still opponents to insurance based funding who argue that services for those diagnosed with ASD are the responsibility of parents and school systems and continue to raise concerns that mandating coverage for ASD significantly increases insurance premiums. Therefore, I am sure that maintaining funding and, in some states, establishing funding will continue to be a battle in many capacities. Therefore, we must remain dedicated to educating people about the wide range of effects ASD presents and continue to raise awareness and financial support for programs that make the lives of those diagnosed with ASD and their families happier, healthier and safer.
In addition, there must be a focus on education for the general public in order to reach an ultimate understanding of this vast spectrum of needs so that each person affected by ASD can receive acceptance, support and the necessary action to obtain continual improvements and progress. As I reflect on the changes over the course of my career, I am inspired by those who fought tirelessly to advocate for insurance-based services, but I also know that there is still much to be achieved. For instance, we still have much work to do in the area of the general public’s understanding regarding the diversity of those diagnosed with ASD and the varied level of support that each individual may actually require. No two people diagnosed with ASD are alike and in turn either are the level of services they require. For instance, the 14-year-old boy who needs to be accompanied by his mother or a one-to-one aide in the rest room of the local target isn’t a spectacle to be stared at nor is he a child who should be scolded for being in the women’s restroom. He simply needs the support of an adult to supervise him at all times. The parents of the child engaging in a tantrum in the middle of the mall don’t need to be chastised or labeled as bad parents, they are simply parents who are likely working through a skill with their child or perhaps they are in despair because they are in need of additional services. And, then there is the child who you probably don’t see out in public very often, the one who is still working on safety skills, the one who has to wear protective equipment such as a helmet or arm limiters due to his severe self-injurious behavior, this child isn’t to be forgotten because he too is diagnosed on the autism spectrum (even though you may not be aware of him) and he too is deserving of support and understanding from his community members. Therefore, I encourage each member of the community to remain open-minded, challenge their judgments, and seek a genuine understanding of ASD via education inclusive of listening to the experiences of those directly affected by this disorder so that awareness can be fully achieved.