The Centers for Disease Control noted that from 1994 to 2005, the number of children ages 6–21 years receiving services for autism increased from 22,664 to 193,637 nationally. This explosive increase in the number of children identified with an autism spectrum disorder sounds a warning for the dire need to implement effective services for transitions to adulthood that will successfully bridge school-based and adult services. Pennsylvania, alone, projects 73,593 adults living with autism by 2030 (Shea, 2014).
Much of the success of adulthood programming will be dependent upon the delivery of quality transition programming for adolescents and young adults. Individuals entering adult systems with increased independence in communication, social, community, and living skills will achieve greater overall independence and lifelong success, allowing adult systems to focus on employment-related performance instead of basic skill development.
The key to success in programming for transitions to adulthood is a strong parent/professional partnership that empowers parents and guardians with the skills and knowledge to be lifetime assets and advocates for their family member with autism (McDonnell and Nelson, 2010). Effective parent/professional partnerships that extend beyond the annually required transition IEP meeting and are focused on person-centered futures planning, coordinated team education activities, and shared ownership of teaching critical skills across school, home, and community settings can result in improved adult outcomes and more effective use of adult programming.
Person-Centered Futures Planning
The philosophy of person-centered futures planning places the individual at the center of all decision making; treats family members as equal partners in the journey; and capitalizes on the individuals’ strengths, skills and aspirations while developing a plan for broad community engagement. This is a change from the previous “services led” way of thinking.
Upon completion of the initial futures plan document, teams typically meet annually to update the plan. However, the plan is a living document, so additional meetings in response to emerging issues should be an accepted part of the parent/professional partnership. Optimally, the planning process begins as early as when an individual is 12 years old, allowing more time to work collaboratively to develop a plan designed to fully prepare an individual and their family for adult life.
Key considerations throughout this process include discussions of post-21 employment and/or education options, levels and types of desired community and social inclusion, and strengths and needs related to independent living (Polychronis and McDonnell, 2010). Depending upon the type of process used, the outcomes may vary, but those in our own process include:
- A personal profile on the individual, including preferences related to social interactions and relationships, employment, and community inclusion;
- The individual’s and family’s vision for post-21 employment and where the individual will live;
- Supports required for successful employment, community, and independent living activities (including behavioral, medical and physical supports; staffing supports; and environmental considerations);
- Ideas for goals and objectives for employment preparation; and
- A detailed action plan for the upcoming year that identifies items that the individual, the family, and the school staff are all responsible for completing (such as exploring available funding streams, investigating and visiting adult program options, arranging community-based employment experiences, and identification of additional skills that need to be targeted to support the shared team vision of post-21 living).
Additional information on person centered futures planning can be found in The PATH & MAPS Handbook: Person-Centered Ways to Build Community (O’Brien, Pearpoint, and Kahn, 2010) or at: http://pcp.sonoranucedd.fcm.arizona.edu/resources/person-centered-planning-tools?destination=node/170.
Team Education Activities
A recent survey of over 200 families revealed that many families lack adequate knowledge regarding post-21 employment, residential, and adult programming/college options (Harris, El-Attar, Albertson, and Bonn, 2010). Results also indicated that many families (61%) were unaware that mandated services end upon graduation. Moreover, many families had limited knowledge on how to access possible funding streams as well as what supports for adults with autism were available in their area.
Given this reality, it is crucial that school teams and families begin planning for post-21, life no later than when a student is 14 years old. Key information gathered include what funding streams are available for an individual and how the family can begin the process of applying for these funded services; what type of appropriate services are available in the area and who are the providers; how to set up tours of potential programs; and how to collect information on other important considerations (such as issues related to guardianship, SSI and medical assistance, selective service, and so on).
A timeline that may be helpful for organizing this planning can be found in the online Autism Transition Handbook (www.autismhandbook.org). Another helpful tool is the Autism Speaks Transition Toolkit (www.autismspeaks.org).
Unfortunately, many adults with autism face long waiting lists for services funding, which can be further compounded by strict eligibility criteria, leaving them without needed supports and services for multiple years upon graduation. By linking to funding streams and adult providers at or before the age of 14 years, families can increase the likelihood that they will have access to the planned services in adulthood.
Shared Ownership of Teaching Critical Skills
Too often individuals learn skills at school, but without collaboration with families, these skills infrequently generalize to home and community settings and/or are often not maintained into adulthood. Therefore, teaching critical skills for transitions to adulthood and achieving generalization to other settings requires a shared responsibility among families, school staff and other professionals.
As part of a person-centered futures planning process, the team can identify which communication, social, community, and living skills need to be targeted to help an individual achieve their goals into adulthood (note: this would not necessarily be all skills identified within the IEP, but rather key skills that have been selected as most important for successful transitions to adulthood). Within each domain, the team must select which specific skills need to be initially targeted based upon assessment data. For example, Bondy (2011) has identified the most critical communication targets that serve as a foundation for effectively communicating across home, community or employment settings. Among these skills are requesting preferred items, asking for help, asking for a break, following directions and following a schedule. There are multiple resources and assessments available to teams to help identify what skills should be addressed in other domains as well, such as Skillstreaming the Adolescent (McGinnis, Sprafkin, Gershaw, and Klein, 2012) for social skills and the Syracuse Community-Referenced Curriculum Guide (Ford, Schnorr, Meyer, Davern, Black, and Dempsey, 2010) that can assist in assessing employment, community, independent living, and recreational skills.
Instructional procedures utilized to teach these identified critical skills must also be evidence-based (i.e., interventions that have strong research support and thus, are more likely to be effective). In the field of autism, interventions based on the principles of applied behavior analysis have been clearly documented as most effective and should be incorporated accordingly in teaching each of the critical skills outlined by the team (Wilczynski, Green, Ricciardi, Boyd, Hume, Ladd, & Rue, H. 2009). Most teaching plans should therefore include descriptions on how to best utilize reinforcement systems, visual supports, prompting procedures; how to arrange lessons in natural contexts using an established lesson format; how to program for generalization and maintenance; and a description of progress monitoring and evaluation systems (McNellis and Harris, 2014).
Once critical skills and intervention plans have been developed, the team must also discuss the specific settings where instruction should occur and who will provide the instruction. This issue is critical for nontraditional student instructional settings such as the home, employment and community settings. One effective approach is assigning educational staff responsibility for achieving initial skills acquisition in the school, employment, and community settings. Once skill mastery has been achieved, then the family receives support so it can assist in facilitating generalization to community settings as well as the home.
To support families in their role as “co-instructors,” educators should initially share and review the lesson plan summary with family members. It is also helpful to provide the opportunity for families to see professionals teaching the skills using the strategies outlined in the lesson plan summary. While necessary, these initial steps alone are often insufficient in helping families to implement instructional procedures consistently in home and community settings. However, when families are provided with additional in-situ coaching and feedback, they can quickly learn how to consistently implement these strategies (Harris, Peterson, Filliben, Glassberg, and Favell, 1998). Therefore, family coaching and feedback in the home and in community settings during their initial teaching attempts is important in achieving success. Eventually, support can be faded as the family becomes more fluent in using the teaching strategies.
Conclusions
Research has conclusively shown that family involvement in each student’s education leads to better outcomes as the individual transitions from school-based services to adulthood (McDonnell and Nelson, 2010). The use of person-centered futures planning to guide team education activities and shared ownership of teaching among families and professionals enhances the benefits of parent/professional partnerships and help families meet goals that result in a successful transition to adulthood services.
Todd Harris, PhD, is Autism Director and National Autism Consultant, Devereux. Richard Allen, PsyD, BCBA-D, NCSP, is Clinical Director, Devereux’s Community Services. Lois Trusler, BSW, is Transition and Employment Coordinator, Devereux CARES. Kate Langston, MEd, BCBA, is Clinical Coordinator, and Amanda Duffy, MEd, BCBA, Program Director, at Devereux CAAPP.
For any additional information about the content of this article or about Devereux’s Autism Services, please feel free to contact Dr. Todd Harris at Todd.harris@devereux.org or 610-873-4930 or visit devereux.org.
References
Bondy, A. (2011). The pyramid approach to education: A Functional guide to ABA. Pyramid Educational Products.
Centers for Disease Control and Prevention (2007). Prevalence of Autism Spectrum Disorders in Multiple Areas of the United States, 2000 and 2002. Autism Developmental Disabilities Monitoring Network. Retrieved from www.cdc.gov/ncbddd/autism/documents/AutismCommunityReport.pdf
Ford, A., Schnorr, R., Meyer, L., Davern, L., Black, J., & Dempsey, P. (2010). The Syracuse community-referenced curriculum guide. Baltimore, MD: Paul H. Brookes Publishing Co.
Harris, T.A., El-Attar, B.L., Albertson, C.M. & Bonn, W. (2010, August). Supporting families through the transition years. Workshop presented at the National Autism Conference, State College, PA.
Harris, T. A., Peterson, S. L., Filliben, T., Glassberg, M., & Favell, J. E. (1998). Evaluating a more cost-efficient alternative to providing in-home feedback to parents: The use of spousal feedback. Journal of Applied Behavior Analysis, 31(1).
McDonnell, A. P. & Nelson, C (2010). Parent and family involvement. In J. McDonnell & M.L. Hardman (Eds.), Successful transition programs (pp. 115-145). Los Angeles, California: Sage Publications, Inc.
McGinnis,E., Sprafkin, R.P.,Gershaw, N.J., & Klein (2012). Skillstreaming the adolescent. Champaign IL: Research Press.
McNellis, C.A. & Harris, T.A. (2014). Residential Treatment of Serious Behavioral Disturbance in ASD/ID. Child and Adolescent Psychiatric Clinics of North America, 23 (1), 111-124.
O’Brien, John, Pearpoint, Jack & Kahn, Linda (2010): The PATH & MAPS Handbook Person-Centered Ways to Build Community. Toronto: Inclusion Press.
Polychronis, S. & McDonnell, J (2010). Developing IEPS/transition plans. In J. McDonnell & M.L. Hardman (Eds.), Successful transition programs (pp. 81-100). Los Angeles, California: Sage Publications, Inc.
Shea, L. (2014). Pennsylvania Autism Census Update. Study funded by the Bureau of Autism Services, Pennsylvania Department of Public Welfare. Retrieved from www.paautism.org/census.
Wilczynski, S., Green, G., Ricciardi, J., Boyd, B., Hume, A., Ladd, M., & Rue, H. (2009). National standards report: Addressing the need for evidence-based practice guidelines for autism spectrum disorders. Randolph, MA: The National Autism Center.
