Families of Teens and Adults

On the federal level, the Individuals with Disabilities Education Act (IDEA) is the statutory driver for protecting the educational rights of students with disabilities. Among other mandates, IDEA guarantees that every child with a disability receive appropriate transition services. IDEA defines transition as “a coordinated set of activities” that does the following:

• Uses a results-oriented process focused on improving the academic and functional achievement of the child.
• Facilitates the child’s movement from school to post-school activities, whether postsecondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living, or community participation.
• Is based on the individual child’s needs, taking into account the child’s strengths, preferences, and interests
• Includes instruction, community experiences, development of employment and other post-school adult living objectives, and if appropriate, acquisition of daily living skills and provision of a functional vocational evaluation.

According to IDEA, transition planning takes place as part of developing a student’s Individualized Education Program (IEP), the so-called road map for public school education for students with disabilities. It is the IEP team – made up of the student, parents, teachers, administrators and other service providers and supports – that is responsible for developing, reviewing and revising the IEP, including the transition plan.

We are fortunate in Massachusetts that state and federal law have conspired to require that transition planning for people with disabilities begin early and be managed in a way that helps them and their families effectively navigate this exciting, though challenging, process.

In August 2008, Governor Deval Patrick signed important legislation that lowers the age in Massachusetts at which transition services must begin. While federal law only requires that it begin at age 16, students with disabilities and their families must begin getting these services starting at 14. We thank the Legislature and governor for recognizing how critical those two years are to helping students with disabilities make this transition successfully.

Please check out The Massachusetts Department of Elementary and Secondary Education for more information on the process of transition from school to adult life for students in Massachusetts.

In Massachusetts and throughout the country, young adults with intellectual disabilities are becoming increasingly more successful as they transition from school to work. They are finding new pathways to careers and maintaining gainful employment throughout their adult working years. Although employment outcomes for individuals with disabilities still lag behind those of persons without disabilities, it is clear that enormous barriers to employment are falling.

The stage for successful employment is set during a child’s school years, and family advocacy is critical during this time.

Families can support the route to employment by:

• Setting expectations that their young adult can work, can contribute, and can find great satisfaction from working
• Understanding the roles of state and employment service agencies who can help make the employment connection
• Learning about the accommodations that help make employment successful
• Becoming familiar with how employment affects benefits that the young adult might receive and the work incentive programs that can play a role.

Many teens with Down syndrome want the same post-high school experience as their peers. Continuing education and opportunities to participate in campus life support the transition to inclusive adult life and employment.

In Massachusetts, the Massachusetts Inclusive Concurrent Enrollment Initiative (MAICEI) allows students with intellectual disabilities ages 18 to 22 to enroll in college while continuing to receive special education services through their school district.

Advocate – We have seen first-hand the positive impact MAICEI has had on participating individuals. The percentage of individuals who can access this opportunity, however, is limited by school-district participation as well as the geographical location of the participating institutions. Help us pass our “Higher Education Bill”, legislation that will expand access to higher education for individuals with intellectual disabilities in Massachusetts.

Thinking ahead to transitions in care is difficult. You might feel overwhelmed, anxious and unprepared. Though you don’t know what the future will bring, there are things you can do to prepare for the continued well-being of your loved one with Down syndrome.

Adult siblings or other family members who want to jumpstart conversations about becoming more involved in the life of their brother/sister/family member with Down syndrome might find this Adult Sibling Toolkit from the National Down Syndrome Congress (NDSC) helpful. The toolkit helps to create a full picture of the person with Down syndrome’s life, imparting knowledge from current primary caregivers to future caregivers.

Similarly, a life story can be used to document the interests, experiences and preferences of your loved one with Down syndrome. While the life story provides a ‘snap-shot’ of the individual for those who may not know them well, it can also serve as a celebration and reminder to the individual of all they have done. There are life story templates you can make your own.

The NTG-EDSD is a screening tool that allows families and others who know the adult with Down syndrome well to record observations in function. By starting early, at age 40 (some recommend age 35), you can develop a baseline picture of the individual’s health from which changes can be identified and addressed.