3rd party review of the Natural Supports Survey

I asked some interested folks to read and give their thoughts about the entire survey.  Here is one.  We are awaiting others.  Would you like to contribute your survey review for anonymous publication here?  If so please send to dnvrfox@aol.com

• Natural supports include: school, daycare, elderly parents and grandparents (this appears to be the most used, most reliable "natural source" but dwindling due to age and death), siblings (rare and in limited time frames), neighbors (rare and mostly for emergency situations), churchs (very rarely), fellow parents/caregivers of PWD.

• Natural supports are intermitent, unreliable, are not for long term needs, are not trained for complex care (medical, emotional), are mostly available when the children are young, have their own lives/jobs/families/concerns, could evolve into feelings that the PWD is a burden or they continue helping begrudingly, are for a limited time period (usually only for a brief break or a few hours - not for overnights, vacations, etc.), live far away, lack commitment.

• Many are tired and exhausted.

• Several responses also address "systemic" issues of: that current paid "system" supports require frequent re-determinations (and could result in reduced/eliminated supports), the "end" of paid supports (age out of school) or lack of professionals,  that if the State would pay reasonable "wages", then the family would quit their jobs to care for their family member, many cannot find paid supports, not enough resources (professionals or funding) to adequately care for this population.

• Those in positions of authority (legislatures, state agencies, schools) do not completely understand the complexity, time-commitment, resources, and funding required to care for PWDs.

• Those in the "systems" do not walk-the-talk; they preach, they sympathize, but they are only willing to help if they are paid.

• By the nature of having a family member with disabilities, this creates isolation and makes it difficult (if not impossible) to identify, connect with, train, and continue developing relationships with the "natural supports."

• There are a few who have created their own "natural supports", though it takes a lot of work and effort to create and maintain, and this work well for them.