Your role is crucial in the development of a full and meaningful life for your loved one. From adolescence to adulthood to aging, your job as parent or adult sibling may change, but you remain a vital member of your loved one’s team.
As you and your teen or adult family member go through the successes and challenges of life, know that the MDSC is here to support you through information and resources, programs and conferences, and connections to other families who understand where you are at.
The Transition Years
In today’s society, leaving high school to enter “the real world” is a daunting prospect for all teens or young adults, not least of which is people with Down syndrome. Successfully transitioning from school to adulthood requires thoughtful and deliberate advance planning, especially for people with disabilities and their families. Below you will find more information about transition planning, including the educational rights of your student, and how we at the MDSC support families during the transition years.
For further transition information and resources, please visit our Resource Library. Additionally, the MDSC’s Annual Conference and Educators Forum provide up to date, accurate information to educators and families of students with Down syndrome.
Know Your Rights:
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.
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.
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.
Adult Life and Aging
As you and your family member carve out a meaningful adult life, there will be many other transitions along the way. One of the greatest strengths of the MDSC community is our connection to one another. When you and your loved one need support- be it emotional, practical, or anything in between- please reach out to us. Together, we can meet life’s challenges and work towards giving our loved one’s with Down syndrome the life they deserve.
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.
The transition years involve a tremendous amount of change. You start with a young teen and end with a young adult, and in those years experience a roller coaster of hormonal, social, educational, and life changes! To support families on this journey, the MDSC offers the Advocates in Motion (AIM) Program for transition-age youth with Down syndrome and their families.
In addition to monthly inclusive and interactive events for youth, ages 13 to 22, AIM hosts a monthly group for parents/caregivers of transition-age youth. AIM Parent Sessions are held once per month. These sessions provide an opportunity for parents/caregivers to develop a supportive network and also learn about a wide array of transition-related topics, including:
transition from school to adult life
special needs planning and more.
MDSC’s Your Next Star began as a public awareness campaign to open the eyes of employers in Massachusetts to the power of people with Down syndrome in the workforce, and help them find the qualified candidates they need. As Your Next Star has evolved, it has also become a program to support adults with Down syndrome in preparing for and securing their place in the working world.
Is your teen or adult struggling with mental health challenges? Please know you are not alone. The MDSC offers a support group for parents/caregivers of teens and adults with Down syndrome who also have a mental health diagnosis of depression, anxiety, obsessive-compulsive disorder, bipolar disorder, etc. Meetings are held every other month and are facilitated by a licensed counselor. Learn more and view resources the group has compiled.