Transition to adult services can be a stressful time in the lives of people with intellectual disabilities, including autism and their families. The days of a close knit school community and entitlement services come to an end. Families and their young adults are faced with a world that can be hard to maneuver, difficult to access and where a whole new language is spoken. What can families and students due to prepare?
Start Early! Transition services begin at age 14 in Massachusetts and planning is conducted with the school system. Transition planning starts with a vision of the student and family on what will occur after they leave school. From here, a plan can be outlined on how this vision may be achieved. This plan is easily incorporated into the IEP for many goals including independent living, career readiness and employment, recreation and leisure academics and more!
Team Process The most successful plans I have seen is where all IEP team members take responsibility- including students, family members and educational professionals. Here are some ideas that you may want to begin in the home:
Think about first jobs- helping a neighbor with pet care or gardening or perhaps visiting an elder and taking out their trash.
Completing chores and learning about different types of jobs when visiting businesses in the local community.
Participating in community and school events with peers.
Setting an alarm clock to wake for school, making school lunches, food shopping and preparing simple meals.
Teaching skills that develop as much independence as possible for personal care needs.
Teach Disability Awareness and Decision Making Adolescence can be an emotional time with the many physical and emotional changes going on. These roller-coaster years are probably are not the best time to begin discussing their disabilities or differences. Begin early on!
A student I worked with was interested in attending a community college after graduation. As part of his IEP he practiced disclosing his strengths and challenges and would ask his teachers for specific modifications to meet his needs. By rehearsing this he was better prepared to access support through this college disability services and his professors. Students should not only attend their IEP meeting but be prepared to be an active participant. Using power point presentations, portfolios or introducing their team members help to teach that they have a voice in creating plans that will support their futures. Look at incorporating a person centered approach at the start of the meeting-
What is their vision?
What does the student do well?
What is important to them? What are their preferences?
What are the challenges?
What strategies support the student? How do they learn best? Who can help?
Students with medical needs will need to learn the vocabulary and procedures that are needed to keep them healthy. Consider technology for communication to access medication lists, schedules and procedures. Have them be part of the interview process for aides who will be providing personal care. Talk about their personal and professional networks. Discuss who can be accessed to help them when various needs arise. Remember that your sons and daughters reach the age of majority at 18. You are no longer your child’s voice unless alternative arrangements have been made. Have family conversations and discussions that include their participation, input and ideas.
Utilize Assessments and Evaluations Most public schools begin helping students explore their skills and interests in the 8th grade. Waiting until transition students turn 18 to venture into the world of internships or first jobs does not give adequate time for exploring career interests or their participation. Assessments and evaluations conducted by schools and outside professionals can help lead the students down a path that can be suited to their needs. These assessments and evaluations are part of transition planning and can be included in the IEP.
Access State Benefits and Resources There are many state resources that your sons and daughters may benefit from. Learn about:
Chapter 688 (Planning for adult services at age 18 or 2 years before graduation)
Career development and employment through Massachusetts Rehabilitation Commission which may begin at age 16
Adult services from The Department of Developmental Services including services for adults with intellectual disabilities, adult autism, Prader-Willi Syndrome and Smith Magenis Syndrome and Acquired Brain Injury
Mass Health – Pays for many services including day habilitation, transportation, medical care, Personal Care Assistance and Adult Family Care. Look into Premium Assistance Programs from Mass Health. Use a navigator for support
If you have a son or daughter with Autism contact the Autism Insurance Resource Center
Apply for Social Security benefits- be sure to have no more than 2,000 in their name
Look into ABLE Accounts
Prepare for the Age of Majority! At age 18, your sons and daughter are viewed as legally competent to make their own decisions and apply for benefits. Investigate ways to support their independent decision making
Supported Decision making
Appointment of advocate
Power of Attorney
Investigate guardianship if necessary. Guardianship is not a parent decision. It is based on a clinical team report and a court hearing.
Meet with State Service Agencies If your son or daughter is eligible for state services invite your representative to the IEP. Invite them to come to your home and meet your sons and daughters or schedule a meeting in their office. Remember to give your young adult a voice as much as possible. Share your vision and have your son or daughter share theirs. (It may not always be the same!) Ask for literature on available services and programs in your area. Start visiting programs.
Lessons Learned or Advice from Students and Families
Don’t Assume! Adult services are not an entitlement and you may not be given adequate or any funding for services
Applying for SSI, and investigating guardianship and applying for state services is only one step of the transition process
Attend workshops, webinars and conferences on transition topics. Mark your calendars for The Arc of Massachusetts Transition Conference on November 4, 2017 at the College of Holy Cross, Worcester.
The more you know what is needed the more successful your transition can be. Learn about all the options
Consider a person centered plan. Strive to have a balance of paid support, family and community supports
You will need to learn a new language – but it was kind of like the college process and can be done.
Network with other families – what was their experience. What would they do differently?
Re-energize and be prepared to advocate! Our kid’s services depend on the state dollars. Join with other advocacy groups!
Be patent most of the time communication is slow. There are lots of layers and people can’t always get back to you quickly. It doesn’t mean they don’t care or they are not doing their job
Take care of yourself. Write a journal and share your story
Listen to your sons and daughter’s vision and wishes remember it is their future. It is ok to make mistakes and change direction
Find a Chapter of The Arc in your area