The CdLS National (USA) Conference Workshop “Collaboration for Continuing Care” featured presentations by three mildly affected adults with CdLS and three parents of more involved individuals. Each shared their experiences with transitioning into adult life and described services used to facilitate the changes.

A variety of living arrangements were described, including adults in their own apartments (with support services ranging from minimal assistance a few hours per week to 24/7 staff), living with parents or living in a state residential center with one-on-one care. The panel illustrated the diversity of abilities and needs of individuals with CdLS and taught that even more severely affected individuals (including those with behavioral issues) can, with appropriate support, successfully live and work in the community.

Accomplishments of the three mildly affected adult panelists included successfully advocating to strike the word “retarded” from the name of the state agency serving the developmentally disabled in Massachusetts, traveling with friends to states as far as Alaska and Hawaii, working at meaningful jobs for pay and as volunteering in service to others, attending college and working with the Foundation as an Awareness Coordinator and Family Services Committee Member.

Also discussed at the workshop were results from the Foundation’s 2010 survey about transition and adult services issues.

Highlights included:

  • The transition to adult life is emotionally difficult for many individuals with CdLS, especially initially, with some facing increased behavioral challenges, anxiety, low mood or depression.
  • Transition is also emotionally difficult for many parents, other family members or caregivers.
  • Parents reported stress because of concern about financial issues, guilt about placing the individuals with CdLS and lack of appropriate services and guidance.
  • Life transitions happen and can be challenging. Many families report that family connections, information from the Foundation and community support can make a world of difference.
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