Support for Transitioning Adults with Autism Spectrum Disorder

Background

Autism Spectrum Disorder (ASD) is a developmental disability that can result in significant social, communication, and behavioral challenges (CDC, 2016). Currently, the rate of ASD diagnoses is 1 in 68 according to the Centers for Disease Control and Prevention (2016). This rate has increased since 2002, resulting in a large population of people with ASD in need of support for successful lives. One such area where people with ASD have significant challenges is the transition from high school to adulthood (Depoy & Werrbach 1996; Wagner et al. 2005; Maslow et al., 2011).

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For people with ASD the employment rate is only 55%, and while not only being noticeably low compared to typical adults, is also low when compared to other adults with disabilities (Shattuck et al., 2012). Additionally, youth with ASD in this transitional period are at the highest risk (35%) of being entirely disconnected from any kind of employment or postsecondary education compared to peers with other developmental disabilities (Shattuck et al., 2012). In 2009, The National Longitudinal Transition Study 2 (NLTS2) reported that young adults with ASD were earning and average of $8.10 per hour (NLTS2, 2009). This rate of pay is lower than average wages for groups with emotional disturbance, learning disability, speech/language impairment, and intellectual disability (NLTS2,2009).

Weaver (2015) asserts that for people with ASD, support through intervention is required for the facilitation of skill acquisition and success with Activities of Daily Living (ADL), Instrumental Activities of Daily Living (IADL), education, work, and sleep. Working to facilitate success in these areas is undoubtedly the primary goal of Occupational Therapy (Drysdale, Casey, & Porter-Armstrong, 2008). It is further highlighted through various studies that when people with ASD experience success in ADL and work performance, they can achieve higher quality of life and independence (Drysdale et al., 2008, Dunn, Cox, Foster, Mische-Lawson, & Tanquary, 2012; Gentry, Lau, Molinelli, Fallen, & Kriner, 2012; Taylor et al., 2012).

When many think of the terms ‘functional skills’ the first thoughts are usually directed towards tangible abilities such as handwriting, cooking, dressing, self-feeding and so on. What can sometimes be forgotten as function skill is social performance and communication.  For people with ASD, communication deficits can inhibit one’s ability to experience social inclusion. Formal services through speech and occupational therapy can support people with ASD to enhance their social skills. Eaves and Ho (2008) surveyed parents of adults with ASD and found that 75% reported unmet social needs. A similar study by Renty and Roeyers (2008) found that the number of unmet formal support needs negatively correlated with Quality of Life, a classification that includes the domains of interpersonal relationships and community inclusion (Schalock, 2004).

Competency in skills relating to ADLs and IADLs sets up people for success in work environments (Weaver, 2015) and successful employment associates with socioeconomic security, health, and quality of life (Butterworth et al., 2013; Eggleton, Robertson, Ryan, & Kober, 1999; Petrovski & Gleeson, 1997). Quality of Life for people with ASD is partially determined by the availability of formal supports to meet social needs (Mehling & Tassé, 2014) as well. The development of programs to target these areas for transitioning young adults with ASD could lead to better quality of life and independence.

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One of the key programs developed to support individuals with ASD as well as other disabilities are transition programs developed through guidelines as explained by the Individuals with Disabilities Education Act (IDEA) of 2004. These programs begin for youth with disabilities at the age of 16 and follow these guidelines and definitions:

“(a) Transition services means a coordinated set of activities for a student with a disability that-

(1) Is designed within an outcome-oriented process, that promotes movement from school to post-school activities, including post-secondary education, vocational training, integrated employment (including supported employment), continuing and adult education, adult services, independent living, or community participation;

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(2) Is based on the individual student’s needs, taking into account the student’s preferences and interests; and

(3) Includes-

(i) Instruction; (ii) Related services; (iii) Community experiences; (iv) The development of employment and other post-school adult living objectives; and (v) If appropriate, acquisition of daily living skills and functional vocational evaluation.

(b) Transition services for students with disabilities may be special education, if provided as specially designed instruction, or related services, if required to assist a student with a disability to benefit from special education. (IDEA, 2004)”

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Typically, these programs provide a basis of support that result in increased independence, vocational skills and potentially end with participants finding gainful employment. In all states but two in the United States, students receiving special education and transition services can remain at their school until they reach the age of 21. This provides youth with disabilities a 5 years to prepare and gain skills to find meaningful employment through therapeutic supports, job coaching, vocational exploration, and community engagement. Through transition programs, youth with ASD can gain prevocational skills for employment which is associated with one’s socioeconomic security, welfare, and quality of life (Butterworth et al., 2013; Eggleton, Robertson, Ryan, & Kober, 1999; Petrovski & Gleeson, 1997).

Currently, one of the two states that does not support students with disabilities through special education until the age of 21 is Montana. In Montana, students with disabilities can attend high school until the age of 19, where they are then required to exit special education services unless they file for an exception (Goldin, 2016). This places students with disabilities, including students with ASD with only three years to build necessary skills for gainful employment. Youth with ASD in the state of Montana who are in the process of transitioning to adulthood are thus placed at a stark disadvantage compared to students across the country.

Looking at this current disadvantage that emerging adults with ASD age 19-24 are faced with in the state of Montana, it is the hope of this program to supplement the deficit in transition services to develop skills for social engagement and personal independence in order to place these young adults with ASD at a more advantageous position for increased quality of life.

The Life Skills program is designed to support individuals age 19-24 with ASD by meeting these needs through a three-part intervention program different than any other available program in Montana. The program consists of a 6-week intervention that takes place in individual home and community settings, and in a group setting with other peers with ASD enrolled in the program. By taking this approach, each participant can receive directed intervention to build IADL and ADL skills at home and increase community engagement and decision-making skills in public settings with one-on-one support. And finally, each biweekly group meeting will allow for group discussion and collaboration to develop communication and coping strategies in directed group interventions with a focus on developing vocational interests for future employment pursuits.

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As this program seeks to support individuals with ASD with skill development for increased independence in home and community environments while also developing prevocational skills, the program is built upon the foundation of the Person Environment Occupation Model (PEO) developed by Mary Law and colleagues (1996). This model follows the concept that human behavior and occupational performance cannot be separated from the contextual environment and that occupational performance is the end result of the interaction of the person, environment, and selected occupation (Weeks, 2016). As these emerging adults with ASD find themselves transitioning out of school, they will be introduced to new environments and contexts including new work and social environments that will require functional skills for success.

In order to apply the concepts outlined in the PEO model, the aquisitional frame of reference will be used to teach social, ADL, and IADL concepts both in a group and individual setting. This frame of reference focuses on the acquisition of specific skills that support one with success in their environment (Luebben & Brasic Royeen, 2010). By working with these individuals to train skills necessary for success in work, social, and home environments, their occupational performance will improve resulting in elevated independence and higher quality of life.

Program Description

Mission

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The Mission of the Life Skills program is to support people with Autism Spectrum Disorder to develop increased independence. Participants served through this program will be met with respect and support to facilitate confidence, competence, and happiness. Practitioners are rooted in Benedictine and professional occupational therapy values to provide a foundation from which therapeutic use of self, respect for others, ethical decision-making, and service attitudes are formed and practiced for the benefit of all clients seeking the service and support of this program.

Goal

The goal of this program is to support individuals with Autism Spectrum Disorder age 19-24 with developing skills related to communication, social engagement, and activities of daily living in order to increase independence in work, social, and home environments through group and individual interventions.

Objectives

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• 80% of participants will demonstrate Moderately High performance levels in socialization domains as rated by the Vineland 3.
• 80% of participants will demonstrate Moderately High performance levels in communication as rated by the Vineland 3.
• 80% of participants will demonstrate Moderately High performance levels in Daily Living skills as rated by the Vineland 3.
• 80% of clients will identify a vocational setting of interest by the end of the program for future employment pursuits.

Values

• Client choice – Every person has a right to express their opinion and selection of occupations through which they find meaning.
• Independence – Every person has the right to access their environment with the least restriction and make their own choices to the best of their ability.
• Service and Empowerment – We believe that as therapists, we provide a service designed to benefit clients, not to restrict, harm, or impede success or independence.
• People as People – We believe that everyone we serve are to be seen as a person first with needs, goals, and opinions specific to themselves and that by seeing people as people first we can meet them on level ground and build each other up for success and independence in life.

Implementation Plan

Target Population

The Life Skills program will enroll 10 participants over a 6 week intervention period followed by a one week follow-up assessment. The 10 participants will be divided into two groups of 5 participants. This division is designed to keep participant to therapist ratio low. The inclusion criteria for The Life Skills program is as follows: ages 19-24, currently living in either group home or with family, ASD diagnosis, able to understand and speak English, and currently living in Yellowstone County. Referrals are accepted from teachers, social workers, occupational therapists, psychologists, speech language pathologists, and physicians. Potential participants will be screened prior to acceptance using the Vineland Adaptive Behavior Scales, Third Edition (Vineland-3). Acceptance will be granted for participants who demonstrate scores that register in the Adequate level for at least 2 areas in the four domains of communication, daily living skills, socialization, and motor skills. Skill level requirements are selected in order to establish similarities between group members in order to promote group and individual improvement.

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Program Activities

The Life Skills program is designed to support individuals with ASD with developing communication, socialization, and ADL performance in order to increase independence in home and community settings and develop prevocational skills for future employment opportunities. In order to meet these needs, participants will be seen in three environments over a six-week program. By seeing participants in multiple environments, the theory base of the PEO model (Law et al., 1996) can be exercised.

The first area is in a group setting with other participants. Groups will take place twice per week for 1 hour per session. In each group session, participants will work on developing communication skills via group intervention through the acquisitional frame of reference (Luebben & Brasic Royeen, 2010). Different established curricula will be sourced for interventions including, Think Social (Winner, 2008), Thinking About You Thinking About Me (Winner 2002), Thinksheets (Winner, 2014), Zones of Regulation (Kuypers,2011), The Hidden Curriculum Revised and Extended Edition (Smith Myles, Trautman, & Schlevan, 2014) and The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment: a Guide for Individuals with Autism Spectrum and Other Social-cognitive Challenges (Myles, Endow, & Mayfield, 2013). While many of these curricula are designed for a younger audience the principles are still supportive for young adults. The group sessions will address communication skills, group dynamics, stress management, and vocational interest through vocational survey and group discussion. A detailed program schedule is provided in Appendix A. An example for one group intervention is supplied in Appendix B.

The second environment will take place in the home of each client on an individual basis. Clients will complete ADL tasks as selected through the Vineland-3 (Sparrow, Cicchetti, & Saulnier, 2016). This will allow each participant to have optimal 1:1 support to increase ADL skills and increase home independence and develop prevocational skills. These interventions will take place once per week for 1 hour.

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The Third environment will take place in a community or social environment of the client’s choosing. The rationale for this environment is to support client choice in community engagement and to provide each client an individual opportunity to exercise social skills learned during group sessions and to support development of communication and socialization skills in areas of need as assessed through the Vineland-3. This intervention will also occur at a 1:1 ratio and will take place once per week for one hour. Each participant will have a budget of $100.00 over the course of the program to use during community outings to promote money management skills and to provide access to different community events and settings.

Policies and Procedures

Both intervention team members and program participants are required to adhere to the policies and procedures of the Life Skills program. Policies and procedures are listed below while a sample explanation of a policy and procedure can be found in Appendix C.

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Team Members

The Life Skills program will employ two full-time staff members to implement activities related to the program.  One full-time Occupational Therapist (OT) will be hired to direct the Life Skills program. This position will involve developing referral sources, completing participant intake assessments, assessing outcomes, and marketing the Life Skills program. A full-time Certified Occupational Therapy Assistant (COTA) will also be hired to assist in implementing interventions in the life skills program under the supervision of the OT in accordance to state requirements for OT/COTA supervision and collaboration while also completing therapy sessions on an outpatient basis. Both positions will involve driving to and from each group member’s home and chosen community setting. Because therapists are meeting clients in these settings, a great amount of functional autonomy is expected. Productivity for each position is 65-75% due to reduced number of clients seen per day and administrative tasks required to market, plan, and assess the Life Skills program. To reach productivity standards, both the OT and COTA are expected to also develop a caseload of outpatient clients to see each week. Job descriptions and work schedules are provided in Appendix D.

Marketing

The marketing plan for the Life Skills program will involve two major processes. An initial marketing plan will be developed to establish referral sources and a secondary plan will be used to further develop referral sources and provide information based on group outcomes and satisfaction surveys to promote additional enrollment for future program sessions.

The initial marketing plan will begin two months prior to the start of the first program and will occur during April and May 2018 with an expected program start date in June 2018. Once positions are filled, brochures and flyers will be developed to be sent to schools, therapy clinics, vocational rehabilitation centers, and medical centers throughout Yellowstone county. The OT will then meet with Special Education professionals and other referral sources to provide follow up through brief presentations on the program outline. Once referral sources are established the OT will provide screenings through the Vineland-3 to assess ability levels of each participant for admittance. The program is provided 2 months to allow for adequate time to establish referral sources, make necessary presentations, and assess potential participants. The only cost related to marketing is related to printing flyers and brochures for presentations and are included in the budget on Appendix F.

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The secondary marketing plan will take place after three 6-week program periods have concluded. The gap in marketing plans is in place to allow for outcome statistics to be used that consist of 30 participants. Marketing flyers and brochures will be updated to include statistical outcome information and participant and parent quotes related to experiences in the program. This phase will involve updating brochures and flyers and resending them to established referral sources while also sending them to new locations for further referral source development. With the expected statistical support from program outcome evaluations, presentations will be made to third party payer sources to lobby for financial support for participant members. This would also support future income development for the Life Skills program.

Timeline

The program implementation timeline will begin in March 2018 with an expected start time of June 2018 for the first cohort. A timeline regarding program marketing and implementation can be found in Appendix E.

Budget

The starting budget for the Life Skills program is $200,000. The direct cost of the program is $133,000. The direct costs consist of personnel salaries and benefits cost, equipment, supplies, and mileage reimbursement. The OT is given a total salary of $65,500.00 with a benefits package consisting of 30% of the annual salary or $19,650.00 while the COTA will receive a salary of $45,317.99 and a benefits package consisting of 30% of the annual salary or $13,595.40. Remaining direct costs total $22,182.01. Indirect costs consist of $67,000.00 and involve annual rent at the Speech and Language Ability Center at $66,000.00 where the program will be implemented and unrelated clinical therapy sessions will be completed and orientation training for documentation expectations and policies and procedures for staff costing $1,000.00. A comprehensive budget with explanations for capital expenses can be found in Appendix F.

Evaluation

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Participants of the Life Skills program will be evaluated on two levels. The first is a qualitative survey using a five point Likert scale to address participant experience of the program. Questions will be designed to find areas of the program that were preferred and areas of the program that were not enjoyed or provided any felt benefit to participants. One survey will be given to participants to complete and an additional survey will be given to caregivers to provide additional feedback on home and community skill development. Each question will also provide areas for additional comments to be made.

The second tool that will be used is the Vineland-3 (Sparrow, Cicchetti, & Saulnier, 2016). This will be used in a pre and post-test fashion to assess progress after completing the six week program and to determine if participants meet the following outcomes. At the end of Life Skills program the following outcomes are expected to be met:

• 80% of participants will demonstrate Moderately High performance levels in socialization domains as rated by the Vineland 3.
• 80% of participants will demonstrate Moderately High performance levels in communication as rated by the Vineland 3.
• 80% of participants will demonstrate Moderately High performance levels in Daily Living skills as rated by the Vineland 3.
• 80% of clients will identify a vocational setting of interest by the end of the program.

The evaluation data will be kept and used to compare cohort progress, support the program with an evidence-base of success, and to determine which areas of the program need to be altered to provide participants with the best available support to meet their needs.

References

Becker, R. (2000). AAMD-Becker reading-free vocational interest inventory: Second edition. Columbus, OH: Elbern Publications.

Butterworth, J., Smith, F. A., Hall, A. C., Migliore, A., Winsor, J., & Domin, D. (2013). State data: The national report on employment services and outcomes, 2012. Boston: University of Massachusetts Boston, Institute for Community Inclusion.

Center for Disease Control and Prevention. (2016). Autism and developmental disabilities
monitoring (ADM) network. Retrieved October 20, 2017, from https://www.cdc.gov/ncbddd/autism/addm.html

DePoy, E., & Werrbach, G. (1996). Successful living placement for adults with disabilities: Considerations for social work practice. Social work in health care, 23(4), 21-34.

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Drysdale, J., Casey, J., & Porter-Armstrong, A. (2008). Effectiveness of training on the community skills of children with intellectual disabilities. Scandinavian Journal of Occupational Therapy, 15(4), 247-255.

Dunn, W., Cox, J., Foster, L., Mische-Lawson, L., & Tanquary, J. (2012). Impact of a contextual intervention on child participation and parent competence among children with autism spectrum disorders: A pretest–posttest repeated-measures design. American Journal of Occupational Therapy, 66(5), 520-528.

Eaves, L. C., & Ho, H. H. (2008). Young adult outcome of autism spectrum disorders. Journal of autism and developmental disorders, 38(4), 739-747.

Eggleton, I., Robertson, S., Ryan, J., & Kober, R. (1999). The impact of employment on the quality of life of people with an intellectual disability. Journal of Vocational Rehabilitation, 13(2), 95-107

Gentry, T., Lau, S., Molinelli, A., Fallen, A., & Kriner, R. (2012). The Apple iPod Touch as a vocational support aid for adults with autism: Three case studies. Journal of Vocational Rehabilitation, 37(2), 75-85.

Goldin, T. (2016). Student Rights: A Handbook to the Educational Rights of Students with Disabilities in Montana. Helena, MT: Disability Rights Montana.

Individuals with Disabilities Education Act of 2004, 34 USC § 300.43.

Kuypers, L. M., & Winner, M. G. (2011). The zones of regulation: A curriculum designed to foster self-regulation and emotional control. San Jose, CA: Think Social Publishing.

Law, M., Cooper, B., Strong, S., Stewart, D., Rigby, P., & Letts, L. (1996). The Person-Environment-Occupation model: A transactive approach to occupational performance. Canadian Journal of Occupational Therapy, 63, 9–23.

Luebben, A. J. & Brasic Royeen, C. (2010). Chapter 14: An acquisitional frame of reference. In Frames of reference for pediatric occupational therapy (3rd ed., pp. 461–488). Philadelphia, PN: Lippincott Williams & Wilkins.

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Maslow, G. R., Haydon, A., McRee, A. L., Ford, C. A., & Halpern, C. T. (2011). Growing up with a chronic illness: Social success, educational/vocational distress. Journal of Adolescent Health, 49(2), 206-212.

Mehling, M. H., & Tassé, M. J. (2015). Impact of choice on social outcomes of adults with ASD. Journal of autism and developmental disorders, 45(6), 1588-1602.

Myles, B. S., Endow, J., & Mayfield, M. (2013). The Hidden Curriculum of Getting and Keeping a Job: Navigating the Social Landscape of Employment: A guide for Individuals with Autism Spectrum and Other Social-cognitive Challenges. Shawnee, KS: AAPC Publishing.

Myles, B. S., Trautman, M. L., & Schelvan, R. L. (2004). The hidden curriculum: Practical solutions for understanding unstated rules in social situations. Shawnee, KS: AAPC Publishing.

National longitudinal transition study 2 wave 5 parent/young adult survey: employment of young adult. (2009). Retrieved from: https://nlts2.sri.com/data_tables/tables/14/np5T1c_A4cfrm.html

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Petrovski, P., & Gleeson, G. (1997). The relationship between job satisfaction and psychological health in people with an intellectual disability in competitive employment. Journal of Intellectual and Developmental Disability, 22(3), 199-211.

Renty, J. O., & Roeyers, H. (2006). Quality of life in high-functioning adults with autism spectrum disorder: The predictive value of disability and support characteristics. Autism, 10(5), 511-524.

Shattuck, P. T., Narendorf, S. C., Cooper, B., Sterzing, P. R., Wagner, M., & Taylor, J. L. (2012). Postsecondary education and employment among youth with an autism spectrum disorder. Pediatrics, peds-2011.

Sparrow, S. S., Cicchetti, D. V., & Saulnier, C. A. (2016). Vineland-3: Vineland adaptive behavior scales. Bloomington, MN: PsychCorp.

Taylor, J. L., McPheeters, M. L., Sathe, N. A., Dove, D., Veenstra-VanderWeele, J., & Warren, Z. (2012). A systematic review of vocational interventions for young adults with autism spectrum disorders. Pediatrics, peds-2012.

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Wagner, M., Newman, L., Cameto, R., & Levine, P. (2005). Changes over time in the early postschool outcomes of youth with disabilities. A report of findings from the National Longitudinal Transition Study (NLTS) and the National Longitudinal Transition Study-2 (NLTS2). Online Submission.

Weaver, L. L. (2015). Effectiveness of work, activities of daily living, education, and sleep interventions for people with autism spectrum disorder: A systematic review. American Journal of Occupational Therapy, 69(5), 6905180020p1-6905180020p11.

Weeks, A. (2016). Integration of theory into assessment and treatment: The person-environment-occupation model in the intensive care unit. SIS Quarterly Practice Connections. 1(3), 22–24.

Winner, M. G. (2007). Thinking about you thinking about me. San Jose, CA: Social Thinking Publishing.

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Winner, M. (2006). Think social: A social thinking curriculum for school-age students. San Jose, CA: Social Thinking Publishing.

Winner, M. G. (2011). Thinksheets for tweens and teens: Learning to read in between the social lines. San Jose, CA: Social Thinking Publishing.

Appendix A

Schedule of Program activities