5 ASD and Transition to Adulthood

As individuals with ASD approach and reach transition age, a range of planning steps, decisions and considerations are enacted across school and healthcare settings. Transition aged youth are generally considered those between 16-24 years of age. While there are hallmark considerations in transition, the steps taken, ages for which activities must occur, and agencies involved in transition planning will be dependent on the services currently being accessed as well as those that the individual is eligible for based on factors including but not limited to the following:

• the level of care needed to support the individual with respect to his/her daily functioning;
• the impact of the individual’s disability upon his/her educational performance as it pertains to academic achievement and/or functional performance;
• any associated healthcare diagnoses or needs;
• and the network of caregiver support surrounding the individual.

For students eligible for special education services, transition services are guided by both federal and state legislation (IDEA, 2004; IDOE-Title 511-Article 7, 2010). Federally, students must have “a coordinated set of activities” in place that “(A) is designed to be a results-oriented process, that is focused on improving the academic and functional achievement of the individual with a disability to facilitate the individual’s movement from school to post-school activities, including post-secondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living, or community participation; [and] (B) is based on the individual individual’s needs, taking into account the individual’s strengths, preferences, and interests” (IDEA 2004). Within Indiana, Article 7 specifies the need to have a “Transition IEP” in place as a student enters 9th grade or becomes 14 years of age, whichever occurs first, with further specification that this may occur earlier if “determined appropriate by the Case Conference Committee (CCC)” (IDOE-Title 511-Article 7, 2010).

Transition planning should begin early, be strengths-focused and data-driven, and be implemented successively across teaching and naturalistic, community settings. Active engagement by the individual as well as their team (e.g., family and caregivers, healthcare professionals, community providers, case managers, etc.) in the transition process can provide opportunity for ongoing planning and any necessary updates informed by the individual and others on their team over time. Integration of key elements in transition planning such as person-centered planning, family involvement, and interagency collaboration helps foster constructive conversations around transition goals while maximizing opportunities for skills teaching and generalization or sustained skill use in activities that promote improved post-school outcomes (Kohler, 1996). Transition planning should consider and include (at minimum) assessment, activities, and supports related to:

• Employment (e.g., full-time, part-time, volunteer, competitive, supported, etc.),
• Education and training (e.g., 4-year college, 2-year college, specialty school, industry credential, etc.),
• Community participation (e.g., sports, extracurricular, leisure, volunteer, etc.), and
• Independent living (e.g., apartment, with family, group home, etc.).

Beginning early within transition planning and particularly as the individual approaches 18 years of age, families and caregivers are faced with decisions related to guardianship.  Discussions around this topic should further shape the above noted goal areas with exploration of less restrictive options as a first step. To guide this discussion, it is helpful to consider what the future looks like for the individual and steps that can be taken to support any areas of concern at the time of discussion and as they age and mature. Potential areas that may influence determinations related to an individual’s decision-making capacity may include but not be limited to the following:

• Finances – paying bills, making small purchases, managing a bank account
• Relationships – understanding personal space, using self-advocacy skills, recognizing abuse and knowing how to speak up if it is occurring
• Education and training – understanding accommodations, giving input on IEP or service plans
• Employment – applying or interviewing for a job, communicating what he/she does or does not want in a job
• Health – scheduling, medication administration (what and when to take medications), communicating with healthcare professionals
• Home and community – emergency plans, transportation, basic cooking and cleaning

Exploration of these areas as well as potential, trusted persons that could be consulted with to supplement or build on the support provided by parents and caregivers is an important step in building a network to support the individual that is centered on his/her needs, desires and goals.

Health care transition preparation, or the planned process for transfer of care and integration into an adult model of healthcare, helps foster improved skill in the individual’s management of their own health and effective use of healthcare services to the best of their abilities. Healthier aging is an important social determinant that can enhance an individual’s ability to work, live independently, or navigate within the community. Assessment of an individual’s health care transition readiness can further inform the above noted goal areas (Health People, 2020).

Resources

• www.supporteddecisionmaking.org
• Gottransition.org