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Community Engagement Through Integrated Community Living Options for Adults with Autism

With the increasing prevalence of autism documented in children over the past two decades, there is growing alarm about what will be needed for these children as they grow into adulthood (Anderson & Butt, 2018). Indeed, there are adults living with autism right now with unmet needs due to service waiting lists and the lack of appropriate funding and supports for the social service system. One of the greatest needs, particularly for individuals with autism who require significant support, is housing (IACC, 2019).

Patricia Wright, PhD, MPH

Patricia Wright, PhD, MPH

There is an ongoing debate about what is appropriate housing for people with autism who need significant levels of care (Mandell, 2017). Many adults with autism continue to live with their family members in adulthood (Anderson, Shattuck, Cooper, & Roux, 2013). As parents age, it can become increasingly difficult for them to provide appropriate supports. Eventually, adult children with autism will outlive their parents. Other adults with autism whose needs require close supervision and assistance, live outside of the home in supervised, residential settings (Lulinski, Jorwic, Tanis, & Braddock, 2018). These settings are typically organized with multiple adults with autism living in one residence with rotating shifts of staff. This shift work model results in the adults with autism often receiving support from more than a dozen different, direct-care professionals.

The challenges of developing and implementing 24-7 supervision to ensure a safe environment while simultaneously promoting a high-quality life are significant. Top among those challenges is securing and retaining qualified, direct support professionals (The Arc, 2014). The current turnover rate for direct service professionals is 45% annually (President’s Committee for People with Intellectual Disabilities, 2017). People with autism benefit from routine and consistency (Rydzewska, 2016). The lack of consistent staffing support is of concern. High staff turnover and shift changes decreases the consistency in programming.

One model that has improved staff consistency utilizes shared living (Strouse, Caroll-hernandez, Sherman & Sheldon, 2003). This model employs couples, individuals or families with children, to live in a shared environment with one or more adults with autism. The homes are located in integrated community environments (e.g. apartment buildings, homes in suburban neighborhoods) where people with and without disabilities reside together, building a quality life, together. Shared Living results in a staffing schedule with fewer professionals interacting with the adult with autism and increased programmatic consistency. It is often referred to as a Family Teaching Model.

In the Family Teaching Model one or more members of the Teaching Family are trained to take responsibility for providing direct programmatic support for their housemates with disabilities. Additional professionals may come in for work shifts, but the Teaching Family is in the same environment where those shift workers deliver programmatic support. The Family Teachers are a constant presence within the staffing structure and have a greater investment in the quality of supports in the home as it is where that family lives. The consistency of the Family Teachers is essential to programmatic success. Many adults with autism present with significant challenges in residential settings (Matson & Rivet, 2008). The Family Teaching Model can address behavioral challenges and has even resulted in decreasing aggression (De Wein & Miller, 2009).

Core to the Family Teaching Model is the belief that members of the household are equals. Although the Family Teachers may provide support and instruct, every adult in the household is of equal status. Decisions are made collectively, with the adults with autism participating to the greatest extent possible. Visual supports are provided to the adults with autism, and accommodations are made when necessary. This programmatic model can only be achieved with effective, consistent and invested supervision.

All Teaching Families go through a rigorous training process and receive ongoing observation with direct feedback measured against quality standards. This ensures programmatic integrity for both quality instruction and for the family philosophy inherent in this novel shared living experience. Brad Walker, a supervisor for Teaching Families for more than a decade, views the importance of quality supervision as imperative. “The training process within the Professional Family Teaching Model provides for monitoring of key performance indicators against which staff performance is evaluated. The data collected through this observation experience allows the team to focus directly on needed performance areas, dramatically improving their performance, consequently delivering high quality services,” says Walker.

This community-based, shared living model utilizes varied Medicaid funding models, often dependent upon the local region’s funding structures, and it has been shown to decrease costs (Strouse, Caroll-hernandez, Sherman & Sheldon, 2003). One of the primary reductions in costs is due to decreased turn-over of direct support workers Onboarding new professionals affects outcomes and is expensive. In the state of Kansas, where this model has been in operation for several decades, the current annual staff turnover is 3%.

Given the nationwide shortage of housing for adults with autism, and a commitment to innovative programming, NEXT for AUTISM is working with New York State to pilot this programmatic model and are hopeful this type of program will spread to other states as well since it holds great promise. NEXT for NEIGHBORS is in its early implementation phase in Westchester, New York, utilizing the Family Teaching Model as its staffing support structure and emphasizing community inclusion and engagement for clients. The Family Teaching Model can help to address this critical need for community living options for adults with autism, especially those with higher needs. It holds great promise not only in New York, but across the country.

Interested in learning more about the Teaching Family Model and/or NEXT for NEIGHBORS? Please contact Patricia Wright, Vice President of Program Services, at pwright@nextforautism.org or visit www.nextforautism.org.

References

Anderson, C., & Butt, C. (2018). Young Adults on the Autism Spectrum: The Struggle for Appropriate Services. Journal of Autism & Developmental Disorders, 48(11), 3912–3925.

Anderson, K. A., Shattuck, P. T., Cooper, B. P., Roux, A. M., & Wagner, M. (2014). Prevalence and correlates of postsecondary residential status among young adults with an autism spectrum disorder. Autism: The International Journal of Research & Practice, 18(5), 562–570.

De Wein M, Miller LK. (2009) The Teaching-Family Model. Journal of Positive Behavior Interventions,11(4), 235-251.

Interagency Autism Coordinating Committee, 2019. Retrieved from: https://iacc.hhs.gov/aboutiacc/working-groups/2019/

Lulinski, A., Jorwic, N.T., Tanis, E.S., & Braddock, D. (2018). Rebalancing of Long-Term Supports and Services for Individuals with Intellectual and Developmental Disabilities in the United States. Data Brief. University of Colorado, Boulder.

Mandell, D. S. (2017). A house is not a home: The great residential divide in autism care. Autism: The International Journal of Research & Practice, 21(7), 810–811.

Matson, J. L., & Rivet, T. T. (2008). Characteristics of challenging behaviours in adults with autistic disorder, PDD-NOS, and intellectual disability. Journal of Intellectual & Developmental Disability, 33(4), 323–329.

President’s Committee for People with Intellectual Disabilities. America’s Direct Support Workforce Crisis: Effects on People with Intellectual Disabilities, Families, Communities and the U.S. Economy (2017). Retrieved from: https://www.nadsp.org/wp-content/uploads/2018/02/PCPID-2017_-Americas-Direct-Support-Workforce-Crisis-low-res.pdf

Rydzewska, E. (2016). Unexpected changes of itinerary – adaptive functioning difficulties in daily transitions for adults with autism spectrum disorder. European Journal of Special Needs Education, 31(3), 330–343.

Strouse, M. C., Carroll-hernandez, T. A., Sherman, J. A., & Sheldon, J. B. (2003). Turning Over Turnover: The Evaluation of a Staff Scheduling System in a Community-Based Program for Adults with Developmental

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