Transition services are supports and resources that assist youth with disabilities as they prepare for adulthood, and develop life skills necessary for becoming successful, contributing members of society. For youth with neuromuscular disease, preparing for adulthood means planning as early as possible for the transition from high school to postsecondary education or employment, as well as transitioning from pediatric to adult medical care.

MDA's Transitional Services Task Force

Thanks to incredible strides in clinical care and aggressive management of symptoms related to neuromuscular disease, individuals with pediatric neuromuscular disorders are now living well into adulthood. Now more than ever, adults living with pediatric neuromuscular diseases are pursuing higher education, careers, romantic relationships, independent living and parenthood.

In recognition of this, in September 2008, MDA assembled an elite group of medical professionals and individuals with neuromuscular disease to serve on the Association’s Transitional Services Task Force.

The group is charged with providing guidance to MDA on the creation of resources and services for teens and young adults as they prepare for and transition into adulthood.

Early on, the Task Force identified the need to help facilitate smoother transitions from pediatric services to adult services through long-range planning and increased dialogue between parents and their child affected by neuromuscular disease, their medical team, and professionals within the community who specialize in resource allocation and related supports. As a result, the Task Force developed MDA’s Road Map to Independence.

MDA's Transitions Center for young adults  

Navigating the transition from childhood to adulthood can be complicated. Young people confront numerous important changes at this time, including going off to college, moving away from home, starting a career, establishing friendships and falling in love.

Young adults with disabilities may find it particularly challenging to find and utilize all available resources to help manage and coordinate these changes.

In response to this need, and as an expansion of MDA’s National Transitions Initiative, MDA has launched the Transitions Center.

With input from experts, community leaders and young adults with neuromuscular diseases, the online resource center is designed to raise awareness of the challenges faced by young people with disabilities as they head into adulthood and provide a caring community for these young adults, and to smooth their path to maturity by connecting them with important resources and supports. The Transitions Center site is designed to help guide and advise young people with neuromuscular diseases by offering information and opportunities related to transitioning to adulthood.

The Transitions Center contains a variety of resource links — some disability-specific, some not — on the following topics:

• The Career Center contains information on how to find a job and develop a career path.
• The Education section contains resources about scholarships, financial aid and college planning for students with disabilities.
• The Independence section contains resources related to living independently, housing and home modifications, personal assistants, transportation, relationships and recreation.
• The Get Involved section invites community members to connect with one another, and provides ideas for becoming more actively involved in the MDA community.

The Transitions Center also offers the following features:

• Accessible Spaces Gallery provides a gallery of photos for young adults and their families to share how they have customized their living spaces.
• Collaborative Wiki Project is a collaborative forum in which our community experts — you — can contribute to a monthly resource project. Each month your combined efforts will result in a new resource for the MDA Transitions community.
• Educational Webinars feature topics important to young people and their families as they make the transition to adulthood and independent living. All webinars are recorded and past webinars are available for your viewing.
• Featured blog of the week highlights the firsthand experiences of seven young adults with neuromuscular disease who share their hopes, dreams, successes and challenges.
• The MDA Transitional Services Survey allows readers to characterize their daily living, working and caregiving situations; rank their satisfaction with various aspects of their lives; and describe both their goals for the future and the hurdles and challenges they face.