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By Sarah C. Threnhauser, MPA

Last year, a Centers for Disease Control and Prevention (CDC) analysis reported that one in every 68 children are diagnosed with an autism spectrum disorder (ASD) and that spending on services and support services for consumers with ASD has risen to meet that demand (see Finding The Opportunities In Serving The 1 In 68). A recent report from the International Society for Autism Research shows that the need for these supports and services doesn’t end in childhood.

The researchers assessed social functioning outcomes in adults with ASD in terms of employment, independent living, and use of social services—and found that 80% continue to require support and supervision and have difficulty with social functioning (see Autism-Related Challenges Persist Into Adulthood; 80% Require Support & Supervision). Of this group, 46% require high-levels of support (including residential care and hospital services), and 34% require support and supervision, but don’t need specialist residential services.

What else do we know about this population’s comorbidities and expenditures? For starters, this population has a high occurrence of co-occurring conditions. Approximately 95% of children with ASD (or roughly 65 of every 68) have at least one common co-occurring condition (see 95% Of Children With Autism Have At Least One Common Co-Occurring Condition)—with the mean number of co-occurring conditions or symptoms was 4.9 per child among 8-year-olds, and 3.8 per child among 4-year-olds. And the list of conditions is long (researchers noted 23 different conditions), including adaptive developmental disability, attention-deficit/hyperactivity disorder (ADHD), cognitive disability, and oppositional defiant disorder; 48.6% of consumers diagnosed with autism have experienced a depressive disorder at some point in their lives, and 25.9% meet criteria for a current depressive disorder (see Almost Half Of People With Autism Report Depression); 28.5% had a lifetime history of depression, and 15.3% had current depression during the study.

And over the next 10 years, half a million children with autism spectrum disorder (ASD) will enter adulthood. About 53% will have attention deficit disorder (ADD), 51% will have anxiety, and 25% will have depression (see 500,000 Youth With Autism Will Enter Adulthood By 2025). Of these, at least 60% had two comorbid conditions such as sleep disorders, seizure disorders, intellectual disability, and gastrointestinal disorders.

The data shows that ASD rarely exists without complications, and autism-related challenges extend to include complex conditions that last over a lifetime. And since the prevalence of ASD has remained stable in recent years at 2.47% of children between ages three and 17 (see Prevalence Of Autism Spectrum Disorder In U.S. Stable In Recent Years), there is a stable (and growing) population of adults who need access to not only ASD services, but also services for a whole host of social functioning assistance.

For health plan executives, these stats present a growing challenge—and an opportunity for entrepreneurial provider organizations. The opportunity for provider organizations? Health plans are looking for organizations that can deliver the mandated services, but can also keep the costs down. This means an increased focus on specialized care coordination programs, home- and community-based services, and specialized integrated service delivery models that combine primary and behavioral health treatment with social supports (see Living In The Community-The Landscape For Adults With I/DD and Finding The Opportunities In Serving The 1 In 68).

Lora Perry
Lora Perry

For a view from the field, I reached out to OPEN MINDS Subject Matter Expert, Lora Perry, who noted:

While the increase in the prevalence of autism over the last twenty years is alarming, these statistics provide an opportunity to both serve unmet needs and to pioneer some very disruptive innovation. Treatment and services for children and their families are currently the most mature and better met sectors of the market, but provider organizations who can provide services at lower cost will have a distinct edge. For example, the majority of treatment for children with ASD is currently delivered 1:1. This is in part because treatment is highly individualized. However, it is possible to create innovative ABA-based treatment models that retain this individualization while effectively teaching children new skills in group settings. Initial staff training to do so will require an investment; but the subsequent savings to payer organizations have the potential to be significant.

Another opportunity lies in the fact that 50,000 individuals with autism become adults each year in the US (see Mounting Evidence of Critical Need for Adult Transition Support). Many adults with autism require services that simply do not yet exist, such as cognitive behavioral therapy adapted to the sometimes very specific and perseverative thought patterns of an individual on the autism spectrum, or issues in sexuality and healthy relationships. Some individuals with autism will present with behavioral health conditions as adults that are less typical of individuals with intellectual disabilities, and more typical of individuals with mental health and psychiatric needs. The challenge—and the opportunity—is that there are few psychiatrists, psychologists and counselors prepared to address these needs specific and relevant to how individuals with autism think and feel.

Finally, many adult individuals with autism are likely to come into contact with law enforcement. There is a growing need for alternative sentencing models in the judicial system that include education of individuals with autism, as well as ASD-informed probation officers, and ASD-informed mental health workers in the corrections system.

There are unique and unmet needs of adults with ASD—and the population needing these services will only continue to grow. This is an emerging opportunity for the provider organization executive team ready to rise to the challenge.

For more on how to build a new service line, join us on June 5 at The 2018 OPEN MINDS Strategy & Innovation Institute for the session, “How To Develop A New Service Line: Building A Diversification Strategy & Conducting A Feasibility Analysis,” featuring OPEN MINDS Senior Associate Joseph P. Naughton-Travers; Eleanor Castillo Sumi, Ph.D., BCBA-D, Vice President of Research and Program Development, Uplift Family Services; and Teri Herrmann, MA, Chief Executive Officer, SPARC Services and Programs.

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