For many families and people with intellectual and developmental disabilities the excitement of graduation, promotion or certification is tempered by fear or anxiety of the transition to adult services. As we enter June many “kids” with IDD are becoming adults with IDD just by the mere fact that are exiting special education. According to the law transition planning must start at age 16 and it can be done as part of an individual education plan (IEP) or it can be a separate process known as an individual transition plan (ITP). A transition plan typically has two parts that include the persons goals and a coordinated set of activities that are designed to assist the person in meeting their goals. Families frequently report that transition planning for many students with IDD is inadequate, however, assuming satisfaction with the transition plan and process it is just as important to plan for the social emotional transition that the individual and their family goes through that first year (sometimes longer) after high school as they transition to adult life and services. Some of the fears and anxieties that individuals and families report include things like adjusting to new routines and people, lack of appropriate services, “temporary” waitlists and having to transition to more than one program or service, staff turnover, safety and concern that the new environment might not be a good fit.
So, how do you plan for something that may or may not happen? The truth is there is no easy answer to that question. However, suggestions we have heard from families who have gone through the transition from school to adult services include:
Join a support group for families that have adult children or siblings with IDD – the State Council on Developmental Disabilities (SCDD) is a great resource for finding local or regional support groups
Assist your son, daughter or family member in connecting with a Self-Advocacy Network. There are several ways to connect with a self-advocacy group in your region or at the state level, the SCDD is a great resource as well as the Consumer Advisory Committee through the Department of Developmental Services (DDS)
Develop a transition “toolkit”. Think about other transitions in your son, daughter or family members life and what helped and what didn’t help. For example, one family had an “anxiety plan” in which they reminded their son every day (for the first few months) what to do when he started to feel anxious at his new program. He kept gum and a small notebook in his pocket with different messages from his family so he could chew gum and read the messages whenever “he felt his heart go fast”.
Plan for some rough days. By all means “rough day” is a relative term and for some it may be just planning for a few extra minutes or steps getting out the door in the morning while for others it could mean near crisis level interventions. Obviously, the plan for those days are as individual as the person and the rough days always seem to happen during the least convenient time. One comment we heard was “while those days are not easy having a plan does help” and this particular family had a plan, a back-up plan and a back-up, back-up plan that included everyone in the family.
While those are just a few of the suggestions we heard we know that individuals and families across the state are tremendous resources for each other. Best of luck to all the students and their families who are moving into new adventures. To learn more about resources for support and self-advocacy in your area visit the State Council on Developmental Disabilities at: https://scdd.ca.gov
Teresa Anderson, Policy Director, The Arc & UCP Collaboration