As part of our support for individuals with developmental disabilities, SUS is deepening its focus on serving individuals with Autism, particularly adults, who have traditionally received less attention in research and treatment. During the month of April, as part of Autism Awareness Month, SUS joined other advocates in educating the public about adults with Autism and challenges faced by the Autism community.
Autism Spectrum Disorder (ASD), a disorder of brain development, has become more widespread in the last four decades. In 2012, the Center for Disease Control and Prevention estimated that one in 88 children is diagnosed with ASD, while other sources report one in 50 children – a ten-fold increase since the 1970s. It emerges early, usually between the ages of two and three, and significantly affects individuals’ social, communicational, intellectual and behavioral capacities throughout their journey to adulthood.
While the prevalence increases, few people realize that adults with ASD need as much care as their younger counterparts. Services for adults with Autism exist, but unlike special education services during K-12 school years, they are not mandated and there are fewer of them.
Although some people with ASD do overcome Autism as they get older, most face challenges throughout their lives in securing employment and adopting activities of daily living (ADL) skills. In severe cases, ASD may also be comorbid with other medical conditions, such as physical disabilities, intellectual deficiencies or mental illness. Many of these individuals are unable to live independently and need full-time residential care for life.
When individuals with ASD graduate from high school, their biggest challenge is in successfully transitioning to adulthood. Therapies are used in special education when caring for children with Autism at schools, such as applied behavior analysis (ABA), to improve functional independence. Unfortunately, it is rare to see rigorous ABA being applied to adults with ASD.
This, coupled with a shrinking government budget for developmental disabilities services, creates daunting challenges in the ASD field. The field is now in a transitional phase, with more pressure from government agencies to provide care with limited resources. Last month, the New York State Assembly passed the state budget for 2013-2014, which cut $90 million in funding for people with developmental disabilities. The cuts challenge organizations like SUS to spread human and financial resources thin.
“Not only do we have to face great challenges to be more creative, but we also need to think about survival of the organization from day to day,” says Louis Cavaliere, Senior Vice President of Developmental Disabilities Services at SUS. “These cuts hurt organizations like SUS, but most importantly, those vulnerable individuals who need our help.”
Despite this rocky period of limited funding, opportunities remain for SUS to influence the developmental disabilities industry. In the past year, Dr. Brian Iwata, one of the foremost researchers in the world of ABA, has worked with SUS to align our work in behavior management with best practices. A key component of this work uses functional behavioral assessments (FBA) to identify the purpose of problem behaviors among adults with Autism. The better staff can help individuals with Autism develop stronger communication skills, the more independent they will become. As this area of our work develops, it will help to inform SUS staff in developing effective, customized intervention plans for our adult residents with Autism.
This ongoing project is still at the data-collecting stage, but both Dr. Iwata and SUS are optimistic about its future. It is SUS’ hope that implementing a rigorous, adult-focused approach to ABA will benefit the individuals we serve and encourage other human service organizations to adopt a similar urgency to serving adults with Autism.
Our work in this new space is also a great opportunity for SUS’ health care workers to learn and put in practice the most up-to-date research from known experts and to use this knowledge to develop their future careers in the field. While this project can be time consuming and costly, it will maximize the rewards for people with ASD, their families, and those who care for them.
Today, over two million individuals in the United States are affected by ASD, and this number continues to increase. As children grow up, more focus should be paid to adults with Autism, especially to those who also experience other medical conditions. A reliable, evidence-based, data-driven practice for this population will eventually be a solution to reduce health care costs.
We hope this project creates a window for the general public to gain a better understanding about ASD, and creates a healthier atmosphere for the individuals we serve with Autism. SUS’ leadership in the field—particularly through the Interagency Council of Developmental Disabilities Agencies, on which SUS CEO Donna Colonna will assume the position of President effective June 2013—gives us opportunities to influence other human service agencies to adopt individualized and flexible person-centered services. Educating the public on the challenges individuals with developmental disabilities face helps to remove barriers that hold them back from maximizing their potential.