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Changes Made to Policy to Affect Thousands of Children with ASD

October 4, 2021

Valuable changes to U.S. policy have recently been made at the federal level over the past couple of months, potentially affecting thousands of children diagnosed with autism spectrum disorder. These changes will essentially help those people denied coverage and give them access to appropriate autism treatment.

In July, Medicare & Medicaid Services declared that comprehensive autism services must be covered for children under all state Medicaid and Children’s Health Insurance Program plans. This new language will affect thousands of children previously denied coverage.

On August 8th, President Obama signed the Autism CARES Act of 2014 into law, setting aside $1.3 billion in federal funding for autism over the next five years. Introduced by Sens. Menendez (D-NJ) and Enzi (R-WY) and Reps. Chris Smith (R-NJ) and Mike Doyle (D-PA), Autism CARES reauthorizes the 2006 Combating Autism Act for another five years at an annual funding level of $260 million. It will allow for continued research as well as aid in developing early detection procedures.

Autism Parenting Magazine asked Executive Director at Autism Continuum Therapies Susan E. Tirella, M.Ed., BCBA, to provide some insight on the latest changes in policy language as it will affect most U.S. families.

Medicaid to Cover Autism Services
Just recently, federal officials ordered Medicaid to cover autism services – can you tell us a little about how this might impact the autism community?
The autism community will greatly be impacted by this new language. Many empirically validated treatments for individuals with autism, such as Applied Behavior Analysis (ABA), were not consistently provided to individuals with Medicaid and claims were often denied. These guidelines will require that anyone under the age of 21 has access to appropriate autism treatment. This means that thousands of children that had previously been denied coverage will receive better and more effective services.

Please explain the new coverage guidelines
While previously, Medicaid covered a variety of treatment for individuals with autism, it was not required to cover ABA services. It was up to each state plan to determine what was covered. Now, based on the federal regulations, under the Early and Periodic Screening, Diagnosis and Treatment (EPSDT) provision, ABA along with other autism related services will be covered for individuals under the age of 21 receiving Medicaid benefits across the country.

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Now, each state will still need to interpret the law and may enforce their own guidelines. However, this new language gives families the opportunity to more strongly advocate for ABA coverage along with other treatment such as Physical, Speech and Occupational Therapies under the EPSDT provision.

How does this new coverage affect people with autism and their families?
This new coverage can mean the world of difference to an individual with autism and their family. Without appropriate intervention, children with autism may not reach their full potential and can, instead, learn inappropriate ways to get their needs met through problem behaviors. In addition, their social and communication skills are impacted so they have a difficult time developing meaningful friendships or navigating basic social situations. However, though interventions like ABA, dramatic progress can be made and through early intervention lives can be changed. This new coverage can mean the difference between someone with autism growing up to live in a group home verses having a job, living on their and being a contributing member of society.
Autism CARES Act of 2014 Signed into Law
What exactly is the Autism CARES Act and what does in entail?
The Autism CARES Act, basically, reauthorizes funding for research, surveillance and educational activities related to autism spectrum disorders. It will allow for us to continue to seek out a cause, provide families with much needed ongoing educational support and will also allow for the appointment of an individual to oversee spending so that we are not duplicating our efforts.

While the federal government had previously allocated resources to this cause, we are far from uncovering all of the answers and families are still struggling. This Act will continue to provide not only resources in the amount of $1.3 billion over a span of 4 years, but acknowledges that we still have a long way to go.

How does this new law affect people with autism and their families?
This law is a huge nod to the families of individuals with autism. It will allow for continued research so that we can not only get closer to finding the cause but also develop early detection procedures. In addition, the resources this bill provides will allow families to continue to receive educational support in the school and community. This allows individuals and families to access services like ABA which is empirically supported in treating the symptoms of autism.

Why are bills like this important to the autism community?
A decade ago, when you mentioned the word autism, a fraction of people would be familiar with the diagnosis and of those, even less would be affected by it directly. Now, it is rare to find an individual who has not in some way been touched by this disorder. This bill is important because it continues to shine a light on the need for more research and better education, along with the monitoring of services and funding. Families need to know that they are supported by their community and by their government and that we are fighting right alongside them to get them the services they need.

Susan E. Tirella, M.Ed., BCBA, is the Executive Director at Autism Continuum Therapies (a Pacific Child and Family Associates company) and is a Board Certified Behavior Analyst.

Ms. Tirella received her Bachelor of Arts in Psychology and Master’s Degree in Special Education from George Mason University in Fairfax, VA and has been working in the field of Applied Behavior Analysis since early 2000. Her professional experience includes direct teaching and consultation through her private practice, staff support and training in public school and home settings, and the oversight of an interdisciplinary pediatric clinic.

Ms. Tirella has worked with individuals with autism and other developmental disabilities ranging in ages from birth to 30 years. She is passionate about advocating for parent support and training and developing meaningful, functional programming for individuals that lead to long term success. Susan’s specialties include the application of Verbal Behavior to treatment as well as using Video Modeling to increase pretend play and other skills. She has presented her research on the latter topic at state and national level conferences.

For more information on the new changes to Medicaid coverage for autism services or the recently-passed Autism CARES Act of 2014:

Autism CARES Act of 2014

This article was featured in Issue 24 – Autism: A Family Perspective

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