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.
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.
These Task Force members include:
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.
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 Transitions Center also offers the following features: