This is an article from the VOR Weekly Update:
Founded in 1983, VOR is a national 501(c)(3) organization governed by a volunteer board of directors and funded solely by dues and donations. VOR receives no government support.
Throughout its history, VOR has been the only national organization to advocate for a full range of quality residential options and services, including own home, family home, community-based service options, and licensed facilities. The organization supports the expansion of quality community-based service options and opposes the elimination of the ICFs/MR (institutional) option.
VOR represents primarily individuals with intellectual disabilities and their families/guardians. VOR advocates that the final determination of what is appropriate depends on the unique abilities and needs of the individual and desires of the family and guardians.
Many Adults With Disabilities Do Nothing All Day
A new study concludes that people with developmental disabilities who are inactive each day are also more likely to have severe disabilities, receive fewer resources, and have parents who were less able to provide care. In these cases, a large percentage of siblings also reported having poorer mental and physical health than other siblings as well as weak relationships with their brother or sister, calling into question their viability as long-term caregivers.
Unfortunately, the study’s findings did not consider the impact of residence on level of daily activity. The study included individuals in all settings with the majority (88.9%) living in family homes, group homes, and other small settings, and the remainder in licensed facilities (11.1%).
VOR feels that the detrimental impact on aging caregivers – parents or siblings – is predictable. People with severe developmental disabilities take more care, more time and energy and over time such caregiving takes its toll. Caregivers have less energy and motivation to search for more services, especially considering the many obstacles to finding services that are often in place. It is our experience that many local agencies do not tell families all that is available or families are discouraged from asking for services due to lack of funding and long waiting lists.
Many years ago, author Fern Kupfer addressed this very real concern:
“No politician is going to say he is against caring for the handicapped, but he can talk in sanctimonious terms about efforts to preserve the family unit, about families remaining independent and self-sufficient. Translated, this means, ‘You got your troubles, I got mine.’” (Kupfer, F., (December 8, 1997). My Turn: Home Is Not For Everyone. Newsweek).
In response to the "Do Nothing" study, one VOR Board Member remarked, “I hope this study is not interpreted as a need to better educate parents to become better caretakers, rather than actually providing services.”
Read related article here from the Website disabilityscoop.
The study by Julie Lounds Taylor and Robert M. Hodapp, "Doing Nothing: Adults With Disabilities With No Daily Activities and Their Siblings", is published in AMERICAN JOURNAL ON INTELLECTUAL AND DEVELOPMENTAL DISABILITIES 2012, Vol. 117, No. 1, 67–79