Demand Growing for Data-Driven Autism Services

Social service agencies seeking to expand their mission of whole-person care should consider services specifically geared to those with autism. Emerging research and experience conclude the autistic population is underserved and at risk with regard to the Social Determinants of Health (SDoH), especially co-morbid diseases and homelessness. The good news is that recent legislation allocated $1.8 billion over the next five years to help people on the autism spectrum, presenting an opportunity for new services and programs. 

According to the National Autism Association, autism is a bio-neurological development disability. People with autism experience unusual sensory perception, which can cause them to be inflexible and/or agitated. It impacts the healthy development of the brain in the areas of social interaction, communication skills, and cognitive function. Individuals with autism typically have difficulties communicating and social interactions—they can even be nonverbal. Autism spectrum disorder (ASD) diagnosis tops the list of diagnosed developmental disability in the U.S. with one in 40 children between the ages of three to 17 diagnosed annually. It’s an expensive disorder, with spending on treatment expected to total $2.23 billion by 2022.

People with autism also have many co-morbid medical conditions. These range from epilepsy, attention deficit disorders, and sleep disturbance to gastrointestinal problems and feeding issues. Approximately 90 percent of children diagnosed with autism receive school-based speech therapy. However, a 2012 study showed that, in general, school-based services for children with autism begin to fall off by the age of six years old. Researchers describe that as “worrisome,” as “[these services are] not fully being replaced by therapies outside of school.” Indeed, the share of children receiving no services at all increased from 10 percent at the outset of the study to 32 percent three years later.

Autism puts young adults at SDoH risk, especially for homelessness

Teens with autism transitioning into adulthood are at a high risk of experiencing deficiencies in the social determinants of Health (SDoH), including economic, social, and housing challenges, according to several sources. In particular, it’s not unusual for adults with autism to experience long-term homelessness. A 2019 British study found that while only about one percent of the population is autistic, the rate is 12.3 percent among the homeless people. Zelalem Tiruneh Rejie, an intake counselor experienced working with the homeless in the U.S., wrote in a November 2017 article on the Autism Housing Network that social service professionals need to think differently about autism and homelessness. He cited five main points based on over 500 intake interviews/screenings, including:

1: Front-line emergency shelter staff may misconstrue autism as a mental illness: Mental illness is very different from developmental disability, but without training, it can be hard to distinguish them. It’s not unusual for adults with autism to be misdiagnosed with schizophrenia.

2: Front-line emergency shelter staff do not have adequate identification and sensitivity training: Everyone from security officers to shelter monitors to case managers need the training to tell the difference between autism and mental illness. Rejie said he received no such training on the job. He learned that because people on the autism spectrum may experience sensory overload from a loved one’s touch; for example, they will likely not tolerate being handled by a security guard.

3: It may be difficult for a person with autism to self-advocate in an emergency shelter situation: They are often hampered by low education, unemployment, poor health, and an inability to access needed services due to their disability.

There is a growing realization that the autistic homeless require different social services solutions. Case in point: The British study cited the case of a 46-year-old homeless man with autism who, after years living on the street with several unsuccessful intervention attempts to provide housing, was placed in a small hostel environment.  The hostel had fewer people and less noise. Also, there were no requirements that he attends extended meetings or assessments that would cause sensory overload. Under these changed circumstances, the client was able to remain off the streets.

New federal autism funding supports data solutions

Rejie added that there was, as of 2017, no data available specifically on people with autism in homeless shelters. A 2017 study published in Applied Clinical Informatics found that health records can be configured to recognize medical utilization patterns associated with pediatric (ages 2-18) autism, and social services and medical platforms are better positioned to take on the challenge.

The effort to better serve people with autism got a boost this past October with the passage of the Autism Collaboration, Accountability, Research, Education, and Support (CARES) Act. The federal legislation earmarks $1.8 billion in support of the autism.

This opens the opportunity for new and expanded programs aimed at addressing the needs to individuals with autism, but how best to get started? Heather Grimshaw of Open Minds offers some guidance to those considering launching an autism services program, highlighting three questions that can help maximize the effectiveness of such a program:

1: What are the underserved segments of the market for autism services? In addition to co-morbid disease and whole-person care management, this includes SDoH case management for adults, guardianship, housing/shared living, and vocational training and support.

2: What are the constraints to entering the market? The most common barriers to successful market entry are a lack of understanding about autism, awareness of ASD-specific consumer needs among team members, and funding challenges. Also, staff issues are frequently cited as a barrier, although industry data show that the number of board-certified behavior analysts is keeping pace with demand.

3: What are health plans looking for that would make a new market entrant a success? Health plans, of course, are looking for more collaborative partnerships with provider organizations that ensure a holistic, customized approach to care using metrics that prove how care influences outcomes.

Of course, all these goals will need to be measurable with a data measurement solution. Social service providers who position themselves with workable data platforms will be well-positioned to receive the new CARE autism funding and achieve better outcomes for their community.

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