Planning for the Future

For many years, Rett syndrome was incorrectly thought to be a degenerative disorder.  We were told by experts to just “take her home and love her”.  We now understand the true natural course of Rett syndrome which promises a world of future opportunities.  It is not degenerative, and individuals with Rett syndrome can and do live well into adulthood.  With this in mind, we encourage all parents and caregivers to plan, think and prepare for the future.  These topics and more all require careful consideration:

  • education
  • residential
  • financial
  • legal
  • guardianship
  • health care
  • government benefits
  • employment
  • recreation


We strongly encourage you to reach out for professional advice to make sure your dreams and hopes for your adult child with Rett syndrome are secured.  Options and protections vary by state and country.  In the U.S., you may begin by contacting The Arc for a local referral to professionals who can help.  You can also tap into the time-tested wisdom and experiences of other parents through our trusted support networks. has had the gracious advice and support from our professional advisor Mary Anne Ehlert at Protected Tomorrows.  For an idea of the things you need to consider, please review this comprehensive presentation from Protected Tomorrows [PPT].

To appreciate the depth of just one important issue, Guardianship, please download and read this [PDF]