Timing of Transition Planning

Beginning in early childhood, providers, educators, and parents should start to include you in your health care and future planning. In many cases, aging into adulthood may require that you transition some – or all – of your medical providers. You and your family should start to consider plans for your health care transition (from paediatric to adult neuromuscular care) by age 12, with initiation of transition discussions and planning by age 13 to 14.

  • Your plan should include what services need to be provided, who will provide them, and how they will be financed
  • Your transition plan should be based on the needs, wants, and values that you and your family feel are important
  • Your plan should include the outcomes that you feel are important in four areas: employment/education (what do you want to do), independent living (where would you most like to live and with whom), health (based on your personal priorities), and social inclusion (how would you like to stay active with your friends and in your community)
  • Financial planning should include a long term financial plan
  • Legal planning for when you are over 18 years old, should be included. This may differ by country, and advice may be available from local advocacy groups