News and Knowledge

Autism Speaks has estimated that over 50,000 individuals with autism spectrum disorder (ASD) turn 18 each year. This is more than double the numbers from 15 to 20 years ago. Navigating the complex maze of the service delivery system after young people with ASD graduate is a daunting task for those young people and their families.

In fact, many adults with ASD receive no services at all after graduation. Sadly, accessing supports and services in the future may only get more challenging. The two primary issues affecting access going forward are available funding at both the federal and local level as well as states’ interpretation of the Centers for Medicaid and Medicare Services’ (CMS) “final rule.” The final rule is a 1,425-page document that is intended to guide the delivery of health care for tens of millions of children and adults. The rule addresses issues of coverage, access, quality, efficiency, and value.

The future of Medicaid funding is quite uncertain. Currently, it has been estimated that changes in funding methodology as well as reductions to spending in Medicaid could result in cuts of over $800 billion over the next decade. The belief is that states will take over more of the share of the costs. Unfortunately, there are already states in this country where services are very limited for individuals with ASD, and these cuts could have a devastating effect on services.

The final rule issued by the CMS in 2014 is already having an impact on access to services. Although in theory, the rule does not restrict the type of employment or residential options for individuals with developmental disabilities, as the states begin to interpret these regulations, this does not seem to be true. In fact, a number of states have proposed policies that in essence ban residential development of homes greater than four individuals. It is their belief that homes greater than four are “institutional,” despite being in the community.

These ideological changes have the effect of limiting access, particularly to those with severe behavior challenges who require 24-hour support. A 2013 Autism Speaks survey found that one-third of individuals on the spectrum requires 24-hour supports. While it is theoretically possible to develop community homes for one or two individuals with ASD that include individuals without ASD, it is extremely challenging financially. Furthermore, in some cases, individuals with ASD simply prefer living with their peers. Another target of the CMS regulations has been the development or ongoing funding of farmsteads (a working farm where people with autism both live and work) or specifically designated communities. Sadly, for many individuals on the spectrum, these communities offer an integrated and safe environment with a high quality of living.

I am all in favor of the most integrated opportunities possible for all individuals with ASD, regardless of their challenges. I am also in favor of choice and a range of options for individuals. Individuals in the general population have a great deal of freedom to choose where they live, often clustering themselves in “like” communities or choosing to live in gated communities. The interpretation of the CMS regulations by some states seems to be denying that right to individuals with ASD.

It is more important than ever to begin to plan for adulthood as early as possible.  It will be essential to learn about how your individual state is addressing the CMS final rule and what this might mean for your son or daughter.  Reach out to your elected officials to remind them of how important Medicaid funding is for people with disabilities.

Joanne Gerenser, Ph.D., is the executive director of the Eden II Programs in Staten Island, N.Y., and a member of the faculty of the Penn State Professional Development Certificate Program in Autism. She is a member of OAR’s Scientific Council and is currently the president of the Board for the Interagency Council for Developmental Disabilities in New York City as well as the board president of the Council of Autism Service Providers.  She is co-author of the interactive CD-ROM entitled “Behavioral Programming for Children with Autism,” and has authored several book chapters and articles on autism and developmental disabilities.