Passing the baton.

                          Brett and his partner, Ryan

I am certainly not going to act like I have all the answers on this journey, but I am pleased to have a son, Brett and his partner, Ryan who are making plans for Barry to eventually transition into their lives.   How exciting for Barry to be included into their lives on a transitional basis, and to know he always has a home.  Besides - who wouldn't want to live with two fun guys versus staying home and watching the old folks eat tapioca?

Even though I am fortunate to have this plan in place, perpetual parents experience some exceptional challenges.  Experts predict that the number of people age 60 and older with developmental disabilities, cerebral palsy and autism will double to 1.07 million by the year 2030.  Some 80 per cent of these adults are currently living with relatives or their parents.  Parents at this stage of their lives are already facing the challenges of:

•   health-related problems and emotional worries that are derived from the cumulative stress of care giving demands.   
• effects of care giving can negatively impact the parent's own health at a time when perpetual parents are beginning to experience their own age-related declines.
• as families attempt to save money for retirement, perpetual parents also struggle to retire with the additional expenses of a child with disabilities (medication, equipment, special clothing)
•   in coming years greater numbers of older parents will require not only assistance for their adult children but also for themselves.  Services that support families are ever shrinking with long waiting lists.
  
  

  Where can I begin to get informed?

  Let's start in your own community with local service providers for adults with disabilities.   With their support visit all options that exist in your hometown and also in neighboring towns as well.
  
  
   Is it important:
  
  
  • that your child live in the same town as you?
  • that your child seek employment?
  • that your child have his/her own room and private space?
  • that your child is able to go into the community and select activities that interest him?
  • how often will you visit, how often can your child visit you?
  • what transportation options do they have?
  • how often could you child come home for extended stays?
  • what would your role look like?
  • what is the agency's vision and mission statement?

   Is it time to bring everyone to the kitchen table to begin a dialogue around a "proactive plan vs. a reactive plan?"   

  

  Next mini topic:  What if I don't want an agency involved in the care of my child?