Learn about the organization, NCAAS, working to protect Autism services.
If you have turned on the news in the last six months, scrolled through your Facebook feed or watched any late night show, you have probably heard that the Trump Administration is attempting to repeal the Affordable Care Act (ACA) and replace it with the American Health Care Act (AHCA) or the Better Care Reconciliation Act (BCRA). Both the AHCA and BCRA are presented as budget reconciliation bills that are part of the 2017 federal budget process, but many are concerned about what these budget cuts would really mean for their families. Though you may have read about this already, there are few who are focused on how this will specifically affect the autism community.
Families who are affected by autism have reason to be particularly interested in what possible changes in health care policies could mean for them. The Affordable Care Act did two things for the autism community. The first was to eliminate the fear of not qualifying for health insurance because of “pre-existing conditions.” Prior to the ACA, pre-existing conditions, including autism spectrum disorder, could raise the price of premiums quite substantially or even disqualify someone from a plan altogether. The second way the ACA protected those with autism is through the Essential Health Benefits which require the many health plans to cover important mental health benefits, including applied behavior analysis (ABA). ABA is the only empirically validated method to address behaviors and deficits commonly associated with an autism diagnosis. However, it’s intensive and thus expensive which makes insurance coverage of the service extremely important. (A third important feature of ACA was the expansion of Medicaid funding, but we can leave that for another day).
While concern is understandable, there are organizations that are fighting to protect access to these services, including Autism Society of America and Autism Speaks. Another such organization is the National Coalition for Access to Autism Services (NCASS). NCASS is one of the only groups focused specifically on protecting access to autism services.
NCAAS was founded by prominent leaders in the autism community - consisting of organizations like Autism Business Association, Autism Spectrum Therapies, Center for Autism and Related Disorders and Butterfly Effects. These leaders realize that providers of autism services need a voice in order to protect access to quality autism services for all families in need. While NCAAS membership is primarily comprised of providers, its mission is to ensure access to the services needed by the autism community.
It was important for these leaders to join forces rather than advocate in Washington on their own.
“This is an extremely fragmented market made up of many small providers which makes it hard for our voices to be heard on a national level. Many of the leaders in the industry felt it was important to join together and protect the community we serve by ensuring access to evidence-based treatment,” said Justin Funches, a vice president at Autism Spectrum Therapies. Justin explained that together, there is a better chance we will be able to protect these critical services.
Providers must have a sustainable model in order to keep their organizations afloat. If it’s not a sustainable business, then the public either ends up with low quality services or quality services reserved for the extremely wealthy (1%) who are able to pay out of pocket. The ACA, its Essential Health Benefits, and state autism mandates allow more individuals with autism to access intensive and medically necessary services, including ABA. NCASS is fighting to ensure that access to these critical services will continue to be available for all families living in the U.S.
When the Trump Administration first announced its ideas for the American Health Care Act, autism providers in many states became concerned about their ability to preserve access to high-quality care. “While there is much work to be done, NCAAS has brought me optimism that these essential services can be saved,” Justin Funches said. NCAAS is making noise, and some in Washington are listening. “No one wants to take things away from kids, especially our most vulnerable children.”
Funches explained that he has been pleasantly surprised with the receptiveness on both sides of the political spectrum. “There is genuine concern for the families affected by autism and the providers who serve them,” he said. “This shows us at a federal level, that in some way shape or form, we are going to be able to protect access to autism services.”
There are many avenues through which to protect autism services, and NCASS is working specifically to ensure that insurers cannot discriminate against individuals with autism and that federal Medicaid funding can be maintained for individuals with autism in the event that the Medicaid funding formula changes. NCASS is fighting specifically for children with autism - honing in on this population. “We talk a lot about Medicaid funding and pre-existing conditions, but we aren’t talking enough about access to autism services. Right now, even with the ACA, most people who receive autism services are relying on private insurance that are required by state mandates to cover ABA services. The other route is Medicaid, and we were on a trend toward greater access,” said Funches.
During my conversation with Funches about NCASS, I learned a few important things that are very critical for the autism community. Medicaid cuts would be particularly devastating for children with disabilities, including individuals with autism. NCAAS is endeavoring to ensure that legislators understand the long-term societal costs of not providing early intervention services. One law that is on their side is the Paul Wellstone and Pete Domenici Mental Health Parity and Addiction Equity Act (MHPAEA), which says insurers cannot treat mental health care differently than medical care. If Congress passes legislation that eliminates Essential Health Benefits, then health policy experts predict that we are likely to see the return of lifetime and annual caps on services. If enough medical services are limited, then limits on mental health services, including ABA, will not violate MHPAEA.
Funches also dived deeper into what is known as the Essential Health Benefits. Many of the current legislative proposals would allow states to decide if something is an essential benefit (such as autism coverage). NCAAS is obviously trying to protect Essential Health Benefits to prevent the return of the lifetime and annual caps that would be so devastating to the autism community. According to Healthcare.gov, Essential Health Benefits are 10 categories of health care that insurance plans must cover. NCAAS’s goal is to ensure that every health plan in America is required to cover autism services, ensuring that families who need the service would have access to affordable, meaningful treatment. According to Funches, the sentiment in Washington is to allow states to control many of these access issues. If that were to happen, NCAAS is prepared to rally the autism community to influence policy at a state level.
NCAAS is working to protect a lot - Mental Health Parity, Essential Health Benefits and Medicaid funding. The members of NCAAS are bringing these categories together to ensure that children and adults with autism can continue to receiving the high-quality services they deserve to fulfill their potential.