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“This month and throughout the year, let the quiet perseverance of our family caregivers remind us of the decency and kindness to which we can all aspire.”

President Barack Obama, 2011’s National Family Caregiver Proclamation.

Since 1997, every United States President has issued an annual proclamation expressing appreciation of family caregivers. President Barack Obama recently issued his yearly proclamation and named November, 2012 as National Family Caregivers Month. This designation provides us with an opportunity to recognize and thank those who care for loved ones who may not be able to care for themselves.

In examining our survey data, we at NCI are constantly reminded of the dedication and devotion demonstrated by family members who care for adults and children with developmental disabilities. The following statistics from the Adult Family Survey are based on our data from 2010-2011.

The Adult Family Survey (AFS) is given to the families of adults with an intellectual and/or developmental disability (ID/DD) who are aged 18 and older and live at home. Not all respondents to this survey are caregivers. Of those who were, over half (53%) were between the ages of 55 and 74.  85% were the parent of the family member with the disability. Almost 30% described their own health as “fair,” and five percent described their own health as “poor.” In addition, 11% of caregivers stated that more than one person with DD was living in their household.

Almost 75% of caregivers stated that their household income fell below $50,000 a year, while 26% percent reported that their household income fell below $15,000 per year. Twenty-seven percent of all caregivers claim to have spent between $1001 and $10,000 out-of-pocket for care of their family member in the past year. Of those whose household income fell below $15,000 per year, 33% claim to have spent between $101 and $1000 out-of-pocket for the care of their family member in the past year.

Our surveys provide space for write-in comments from respondents. From these comments, we at NCI are made further aware of the trials and obstacles faced by many caregivers. For example, a caregiver in 2010-2011 wrote: “We’re very grateful for the choice of keeping our son at home instead of putting him in an institution. It is difficult to have a life with a person that has [a disability], but we are grateful for help.” In the comments sections many caregivers expressed concerns about cuts to respite and other in-home services. In addition, some caregivers articulated apprehension about their own increasing age and deteriorating health, and the future for their family member. These comments demonstrate the commitment and devotion of caretakers across the country.

Overall, 98% of caretakers stated that their family member had a good quality of life. This is no doubt a result of the hard work, long hours, love and dedication demonstrated many caretakers in the care and support of their family member. Our admiration and recognition goes out to them all!