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Transition consists of steps taken to facilitate an individual with Down syndrome’s path to reach their potential level of independence. Gaining information, making plans and preparations can position everyone involved in this transition on a course where goals can be realized for the next stage of their life together.
As a parent of a child with Down syndrome it is never too soon to consider your child’s inevitable journey into adulthood. It is never too early to consider how you will help your child grow in independence, into a mature adult. Parents are the key to successful and appropriate transition – schools and service providers may help but intentional directions from the home will circumvent the shock that life after high school could have upon a family. The task of maximizing your child’s potential for independence begins with yearly recurrent observations, evaluations and readjustments of goals if needed.
Parents of school age children with Down syndrome can begin expressing their knowledge and expectation for transition accommodations through their child’s Individualized Education Plans (IEPs), and they can access transition information, education and services outside of the school and by consulting with other parents.
As individuals with Down syndrome transition from high school in their life after high school, comprehensive and coordinated services tend to be less available than when they were younger. In most areas there are programs and services available for adults with Down syndrome but waiting lists can be long, and there might be limited access to the support they really need. Parents and caregivers will have to coordinate and navigate through these agencies and service providers so familiarity and preparation will make this a less stressful endeavor.
Here are some steps to take on the road to transition:
- Inject transition strategies into your child’s IEP
- Identify the aspects of transition that can be incorporated into home life
- Develop your child’s functional living skills in the stages of Adolescence – Teen – Young Adulthood. Each age offers an opportunity to address hygiene, organizational ability, and pragmatic social skills.
- Use available transition resources. All schools are required by law to begin transition services when children are 14. Some government entities provide funding for transition programs that include eligibility screening and assistance accessing vocational and/or educational supports
- Search for local organizations that offer comprehensive lists of programs that support independent living, vocational assessments, educational programs, or housing assistance, as well information about how to access them.
- Contact professionals who can help you obtain services. Disability lawyers can help young people apply for Social Security Disability Insurance, financial professionals can set up special needs trusts, and case managers can help you navigate and access the maze of service agencies. Some nonprofits also provide case management services for families.
- Connect with parents in similar situations. Organizations, schools and online groups can be a great source of both information and support.
- Search for resources to transport your children to their activities. Take advantage of the transportation programs that are available in your area. Consider carpooling, which can help both you and your child to build social connections.
- Take advantage of opportunities to you to personally connect and connect your child with peers, mentors, and professional counselors. Discussion groups, recreational activities, and supervised social events where your child can socialize and where you can “chat” with other parents or caretakers. Mentors through programs such as “Best Buddies” or “People First” can help encourage and develop independence and navigate the adult world. Seek out recommended counselors and therapists whose experience can help cope with the transition to adulthood.
- Individual therapy and family therapy may be a helpful avenue during the transition process. Even given heroic efforts to maximize a child’s potential for independence and utilization all available resources, you still may to be confronted with unexpected emotions, behavior and circumstances. Therapy might help.