Keeley is a 23-year-old college graduate who was diagnosed with autism at age 8. To all those acquainted with her, Keeley appears to navigate the community and manage her life independently. Despite her independence, Keeley experiences much of her day with communication breakdowns between herself and others such as friends and co-workers. Keeley also struggles creating and maintaining organization such as planning her day, getting to work on time, and planning for enough food before the next trip to the grocery store. By the end of the day Keeley is exhausted. She finds that she needs time to be herself after a day of adapting to societal norms and finds relief flapping her arms and shaking her head. Keeley wants to live on her own, however she and her parents have been unsuccessful in orchestrating a plan for independent living that allows her to live on her own and receive needed supports.
Living independent of your parents is a milestone many look forward to, but for some it becomes nearly impossible due to a complex set of barriers. Adults with disabilities not only need to locate affordable housing, but also need to weigh out qualifications for support services and medical coverage. These complexities create a challenge for parents, educators, and self-advocates as they work to create the best individualized transition plan possible with the resources available. Parents can implement a systematic strategy to improve post-school outcomes for independent living.
Adults with autism without intellectual disability, sometimes referred to as “high functioning,” appear particularly vulnerable due to a gap in supports and the misconception that minimal help is needed (Alvares et al., 2020). Such classifications are not helpful when they do not accurately describe a person’s experiences and needs. An adult with autism may be considered “high functioning” because they do not have a diagnosed cognitive disability, but may experience significant needs for support to lead the independent lives they desire. Unfortunately, qualifications for support tend to be based on cognitive test results rather than a consideration of the whole person’s needs such as sensory, communicative, or self-advocacy discrepancies in the desired environment. Parents that plan ahead, explore available programs, and advocate work to overcome challenges and encouraging change with housing and support needs for adults with autism.
Parents can substantially increase positive outcomes for their child with a disability by actively engaging in the transition planning process during Individualized Education Plan meetings (Flowers et al., 2018). Discussing future career and independent living aspirations can guide the team on which assessments to give and determine which skills are needed to work towards these prioritized goals. Additionally, ensuring that the appropriate partners from future environments and services, such as vocational rehabilitation specialist, can promote positive post-secondary outcomes (Flowers et al., 2018).
Keeley will benefit from an IEP that addresses independent living skills while considering programs she likely qualifies for in adulthood.
Explore Programs and Services
Housing Support – Many people with disabilities live with family, in group settings, foster families, institutional settings, and in their own dwelling (Westling & Kelley, 2020). However, factors such as affordability, perceived safety concerns, and available supports narrow options. The Residential Information Systems Project (RISP) reports that about 60% of respondents that receive Long-term Support Services (LTSS) live with family with an increasing trend of moving from segregated settings to community-based settings. The survey further supports a trend of increasing number of adults with disabilities living with family (Larson, 2020). With approximately 1.3 million individuals with Intellectual and/or Developmental disabilities (I/DD) residing with parents 60 years of age or older (Braddock et al., 2017), parents must plan for independent living for their child beyond their lifetime.
The Department of Housing and Urban Development (HUD) have multiple programs to support supply and demand of affordable, sustainable housing for those with low incomes. One such program is the Housing Choice Voucher which allows a choice of any dwelling that meets the voucher requirements. Local public housing agencies are responsible for paying a subsidy to the property manager on behalf of the qualified applicant (Westling & Kelley, 2020).
Keeley is a good candidate for the voucher program if she is within the financial qualifications. She will need supports from a different source as HUD programs are not specifically designed for people with autism or I/DD.
Individual Supports – Home and Community-Based Service (HCBS) waivers are designed to provide LTSS for those qualified in the community. Every state has its own criteria and number of individuals served at a time and many states have waitlists. It is suggested that parents begin the application process early as the wait can be 10 years or more. Applicants who have assessed cognitive disabilities tend to qualify for HCBS waivers (Westling & Kelley, 2020).
Supports without a waiver include natural and technology-based supports (Westling & Kelley, 2020). Natural supports utilize people within the typical network of interactions experienced in daily life such as neighbors and co-workers; Technology can be used to encourage independence without relying on a person (Westling & Kelley, 2020). Parents and self-advocates can collaborate with organizations to develop an individualized technological support plan.
Keeley does not qualify for an HCBS waiver but could reside in her own dwelling if natural and technological supports are orchestrated.
Parents as Participatory Change Agents
Parents are a constant in a child’s life and therefore better understand the capabilities and strengths their child has. Parental involvement is vital to their child’s success and post-secondary out-comes despite a potential lack of educational expertise (Hsiao, 2018). Parents can also advocate in communities by serving as committee members, joining a local organization for advocacy, and participate in community meetings.
Keeley and her parents can advocate during IEP meetings and join local organizations that bring awareness on the barriers for adults with disabilities.
For many adults with disabilities, living independently is possible with the right resources. Despite the obstacles, families and self-advocates are encouraged to plan ahead and explore programing before it is needed. Skill building and being intentional on the plans about life beyond secondary school becomes vital, as support is no longer based on entitlement but on qualification. A parent that plans ahead, explores available resources, and advocates is a parent that brings about the best opportunity for positive outcomes.
www.simply-home.com – An organization focused on utilizing technology to support independence.
Celeste Lenae Michaud, MA, is currently a PhD student in the Leaders for Transition program at the University of Arkansas-Fayetteville. To contact author, email Celeste at email@example.com.
Alvares, G.A., Bebbington, K., Cleary, D., Evans, K., Glasson, E.J. (2020). The misnomer of ‘high functioning autism’: Intelligence is an imprecise predictor of functional abilities at diagnosis. Autism, 24(1), 221-232. http://journals.sagepub.com/doi/10.1177/1362361319852831
Braddock, D.L., Hemp, R.E., Tanis, E.S., Wu, J. & Haffer, L. (2017). The State of the States in Intellectual and Developmental Disabilities: 2017. Boulder, CO: University of Colorado, Coleman Institute for Cognitive Disabilities.
Flowers, C., Test, D.W., Povenmire-Kirk, T.C., Diegelmann, K.M., Bunch-Crump, K.R., Kemp-Inman, A., Goodnight, C.I. A demonstration model of interagency collaboration for students with disabilities: A multilevel approach. The Journal of Special Education, 51(4), 211-221. http://journals.sagepub.com/doi/10.1177/0022466917720764
Hsiao, Y., Higgins, K. (2018). Parent Empowerment: Respecting their voices. TEACHING Exceptional children, 51(1), 43-53. http://journals.sagepub.com/doi/10.1177/0040059918790240
Larson, S.A., Eschenbacher, H.J., Taylor, B., Pettingell, S., Sowers, M., & Bourne, M.L. (2020). In-home and residential long-term supports and services for persons with intellectual or developmental disabilities: Status and trends through 2017. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on Community Integration.
Westling, D.L., Kelley, K.R. (2020). Opportunities for persons with IDD to live in their own homes. Education and Training in Autism and Developmental disabilities, 55(4), 367-381. https://search.proquest.com/scholarly-journals/increasing-opportunities-persons-with-idd-live/docview/2463173613/se-2?accountid=8361