Medicaid Coverage of ABA: A Progress Report
July 21, 2021
“I’m enrolled in Medicaid and my child was just diagnosed with autism. How can I get treatment for them?”
If you called our 800.4.AUTISM Helpline with that question two years ago, the answer would be different than today.
Thankfully, coverage for medically necessary Applied Behavior Analysis (ABA) treatment for children with autism enrolled in Medicaid/NJ FamilyCare became a possibility in April 2020. That’s when the Department of Human Services’ (DHS) Division of Medical Assistance and Health Services (DMAHS) launched its ABA benefit.
Prior to April 2020, hundreds of parents called our helpline seeking Medicaid-funded treatment. We talked them through their limited options and empathized with their plight. We recognized the systemic inequity. Since 2010, insurance coverage for autism was available in the commercial market, yet inaccessible for families of low-income. Removing this systemic barrier has been a longstanding Autism New Jersey public policy priority. Autism New Jersey played a pivotal role in advocating for this benefit since the federal government required its inclusion in 2014.
With more than a year since the benefit became available, we reflect on the progress and challenges and discuss the role that Autism New Jersey will play moving forward.
Where we stand
Accessing the benefit
Within the first three months of launching on April 1, 2020, an estimated 500 children were participating in this benefit, approximately half of whom were under a pilot program administered by the Children’s System of Care (CSOC). For these youth, responsibility for their treatment was transferred from CSOC to DMAHS and one of its five Managed Care Organizations (MCO) that administer the benefit to NJ FamilyCare beneficiaries. Over the following 9 months, 700 more children have accessed this benefit for a total of 1,200.
It is heartening to see the growth in the number of Medicaid-eligible children with autism who are now participating in treatment. Yet, with approximately 12,000 Medicaid-eligible children with autism, that figure represents only 10% who are accessing ABA treatment.
Over the same period of time, while the number of providers has increased, it has not kept pace with the number of children accessing the benefit. Thus, families continue to experience long wait times. We remain concerned that the number of both individual providers and provider agencies does not currently nor is it likely to meet the treatment needs of the Medicaid-eligible autism community. Network adequacy must be improved.
Autism NJ Resources
Over the past year, we have received calls to our 800.4.AUTISM Helpline from parents inquiring about how to access the benefit and from providers exploring how to become an approved provider. We created guides that walk parents and providers through these processes and have provided assistance to both as they navigated real-world challenges. Through our helpline, we continue to capture families’ and providers’ experiences with this benefit and use this information to make recommendations for systemic improvement to our colleagues at DMAHS.
Launching During a Pandemic
As is the case with any new program, there are bound to be hurdles and challenges along the way. The most obvious challenge for the launch of this benefit was the unfortunate timing.
With years of preparation leading up to the launch, no one could have ever imagined that we would have been in lock-down due to a pandemic when this benefit went live. With everyone’s attention on COVID, the launch of the benefit did not get the media attention that it deserved, which ultimately led to a lack of awareness by many families. Many simply did not know that the benefit was available.
Social distancing and work-from-home requirements led to an overall hesitancy from families and behavior analysts to move forward with in-person services and, for many of the children, telehealth was not an effective medium for treatment.
In addition to pandemic-related challenges, families and providers experienced other obstacles, too.
Families’ major challenge was finding an appropriate provider and, if they did, many were placed on wait lists for extended periods of time. Providers reported long wait times to become credentialed, billing and authorization issues, and concerns that the reimbursement rates do not cover the cost of providing the service. These issues have been preventing many ABA provider agencies from enrolling to become Medicaid-approved providers and leading some approved providers to disenroll.
Without a growing network of providers, the demand for ABA services is outpacing the supply, leaving more and more children without the treatment.
Autism New Jersey praises DMAHS for its commitment to launching this benefit despite a pandemic and working every day to administer this benefit with integrity, transparency, collaboration, and an unwavering commitment to children with autism. We have partnered with our colleagues at DMAHS to provide support to families and providers in an effort to ensure as many children as possible could access treatment throughout the last year. We are proud of our progress to date and humbled by the work that remains.
Our public policy team continues to advocate for strategic improvements to the benefit.
The most pressing concern is the inadequate number of providers. To directly address this critical issue, we are working closely with DMAHS and have provided specific recommendations to the existing rate structure to ensure an adequate network of providers to deliver this benefit.
As our advocacy efforts continue, we will also intensify our efforts to provide support to families and providers as they navigate all aspects of this benefit. A recent $10,000 grant from the State Bar Foundation will lay the groundwork for this enhanced information via our 800.4.AUTISM Helpline.
In partnership with DMAHS, families, and providers, we are hopeful that our efforts will continue to advance this benefit and increase access to treatment for all Medicaid-eligible children with autism.
Experience Our Power of Connection
Do you have questions about or experiences with this benefit you’d like to share? Autism New Jersey recognizes and has expertise in the complexities of Medicaid and this ABA benefit. Call our 800.4.AUTISM Helpline, email firstname.lastname@example.org, or use the chat/messaging feature at the bottom of your screen.