Tuesday, February 19, 2013

How Natural are Natural Supports?

Natural Supports
"Natural Supports" is the name given to unpaid care giving provided by a disabled person's family and friends. Unpaid caregivers should be supported and encouraged for all they do voluntarily for their disabled family members and friends. They should also be acknowledged for their important contribution to the overall support system for people with disabilities. But let's not glorify the virtues of Natural Supports as a way to avoid facing gaps in the system of care and the lack of paid services and residential options for people with developmental disabilities. 
VOR, a national organization that supports a full array of residential and service options for people with intellectual and developmental disabilities, addresses these issues in its November 16, 2012  newsletter in an article called "The Growing Burden on Caregivers: A Focus on Natural Supports".

According to the article: 

"In this difficult economy, policymakers are quite tempted to support and expand free natural supports. Some advocates leverage this temptation and oversell the virtues of natural supports while also seeking closure of specialized residential (large and small), supported employment, and other services…However, how “natural” is it for a middle aged person to be living with, and supported by, elderly parents? There are an unprecedented number of families in exactly that situation, arguably due to aggressive efforts over the years to dismantle specialized services and unreasonable pressure by advocates and states on families to take on caregiving ("natural support") duties in the family home…."

VOR concludes:

"..if a family has access to adequate natural supports and chooses this arrangement over specialized supports, VOR supports it. However, consistent with our mission in support of high quality care and human rights for all people with intellectual and developmental disabilities, natural supports should not be imposed on families when doing so creates an impossible burden on too few people to the detriment the individual’s and the family’s mental, physical and financial health, and indeed, risks separating the family unit itself."

The VOR newsletter gives some perspective on this issue and links to other articles and more information. This is a good place to begin examining an approach to serving people with DD that has many families wondering why public agencies that are supposed to be helping them are so intent on handing over more and more care giving responsibilities to the family."

A report on natural supports called "Building a National Agenda for Supporting Families with a Member with Intellectual and Developmental Disabilities" came out of the Wingspread Family Support Summit, 3/6/11-3/8/11, in Racine, Wisconsin. Professional advocates, mostly from programs funded by the federal Developmental Disabilities Act, put their heads together and figured out how to get more funding for their organizations by enhancing the capacity of parents and other family members to be more accepting of their fate as caregivers and the prospect of making do with less for the foreseeable future. More about this later.

What do families really think about "Natural Supports"? A family group in Colorado surveyed 500 family members to find out. The results are here

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