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November 2012: National Family Caregivers Month
Nov 6th, 2012 by | No Comments Yet“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!
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October is Breast Cancer Awareness Month
Oct 30th, 2012 by | No Comments YetRecent studies in the Journal of Advanced Nursing and Intellectual and Developmental Disabilities showed that women with intellectual disabilities possessed limited knowledge of breast cancer, including risks, symptoms and preventative factors. Breast Cancer Awareness Month is an opportunity to examine the NCI data on mammograms and raise awareness of breast cancer and diagnostic testing within the ID/DD community.
According to the 2010-2011 Adult Consumer Survey data, 79% of female respondents over the age of 40 had had a mammogram in the past two years. Statehealthfacts.org (of the Kaiser Family Foundation) shows that in 2010, 75.4% of women over age 40 in the country had received a mammogram in the past two years. The data seem to show that the NCI respondents, on average, receive mammograms at a higher rate than the non ID/DD population. However, the data on mammograms become even more compelling when examined by residence type.
According to the 2010-2011 NCI data, 95% of female respondents over age 40 and living in institutional settings received mammograms within the past two years. Comparatively, 87% of those living in a community-based setting, and 82% of those living in individual homes reported having received a mammogram in the past two years. However, a mere 59% of respondents living in a parent’s home reported having received a mammogram in the past 2 years. These data may indicate that individuals living in a parents’ home, and parents housing a person with DD/ID need to be targeted in breast cancer awareness-building endeavors.
Women with ID/DD are as likely to get breast cancer as women in the general population but are less likely to obtain mammograms. It is critical that women with ID/DD and their families/caretakers are made aware of the risk of Breast Cancer, and how to detect it.
For more data on mammogram usage in the ID/DD population and other indicators, see the ‘Reports” page at http://www.nationalcoreindicators.org/resources/. And, as always, we would love to see what you are doing with NCI data. Let us know by sending an email to dhiersteiner@hsri.org.
Sources:
Parish, S., Swaine, J., Luken, K, Rose, R., Dababnah, S. (2012) Cervical and breast cancer-screening knowledge of women with developmental disabilities. Intellectual and Developmental Disabilities. 50(2):79-91.
Truesdale-Kennedy, M., Taggart, L., & Mcilfatrick, S. (2011) Breast cancer knowledge among women with intellectual disabilities and their experiences of receiving breast mammography. Journal of Advanced Nursing 67(6), 1294–1304.
http://www.cdc.gov/Features/dsMammograms/
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NCI Data: Rights/Respect
Oct 11th, 2012 by | No Comments YetThe NCI sub-domain entitled “Rights/Respect” was designed based on the idea that the protection and affirmation of an individual’s rights is a critical gauge of service quality. The NCI Adult Consumer Survey uses several questions to ascertain whether the respondent receives the same respect and protections as others in the community.
The rights/respect section of NCI identifies:
1. The proportion of people whose basic rights are not respected by others, including (a) having one’s mail opened without permission, (b) having restrictions on being alone with others, (c) having restrictions on using the phone, and having people enter their (d) home and (e) bedroom without permission.
2. The proportion of people who have participated in a self-advocacy group meeting, conference, or event.
3. The proportion of people who report satisfaction with the amount of privacy they have.
4. The proportion of people indicating that most (a) day, (b) work, and (c) home support staff treat them with respect.
Here is a selection of national results from the 2010-2011 Adult Consumer Survey:
Indicator
N
Overall
In Institution
In Community Based
In Individual Home
In Parent's Home
Home is entered without permission
5675
10%
10%
13%
8%
7%
Bedroom is entered without permission
5642
15%
8%
16%
11%
18%
Mail is opened without permission
7266
12%
6%
11%
10%
15%
Can be alone with visitors at home
7463
83%
89%
84%
91%
81%
Allowed to use phone/internet when desired
6749
91%
86%
89%
97%
90%
Have participated in a self-advocacy event
6541
31%
28%
33%
39%
23%
Have enough privacy at home
5372
91%
86%
87%
94%
93%
Staff at home is nice and polite.
3985
94%
89%
93%
94%
96%
Staff at work is nice and polite
967
96%
n/a
95%
90%
97%
Staff at day program is nice and polite
3721
95%
94%
95%
94%
96%
Interestingly, many of the results seem to be affected by the residential situation of the respondent. For example, 86% of respondents living in an institutional setting say that they are allowed to use the phone/internet when they want, compared with 90% of those who live in their parent’s home. Fifteen percent of respondents living in their parent’s home claim that their mail is opened without permission, while only 6% of respondents living in institutional settings assert that their mail is opened without permission. 23% of respondents living in their parent’s home have participated in a self-advocacy event, compared with the national average of 31%. Eighty-six percent of respondents living in an institutional setting assert that they have enough privacy at home, compared to the national average of 91%.
States can use national and state-specific data on rights and respect towards many ends. Results on this sub-domain can be used as an outcome measure in assessments of service quality. For example, The Massachusetts Department of Developmental Services (DDS) compiled a Quality Assurance Brief (QAB) entitled “Protection and Affirmation of Rights.” (http://www.mass.gov./eohhs/docs/dmr/qa-assurance-brief-v1i3.pdf). Mass. DDS has established a set of outcomes that form a basis for assessing service quality. This QAB uses NCI data and data gathered from licensure and certification reviews to evaluate whether the state is fulfilling the outcome of protecting and affirming the rights of those receiving services. At the end of the QAB, Massachusetts DDS has identified ways in which it will follow up and implement quality improvement initiatives and activities.
For more data on rights/respect and other indicators, see the ‘Reports” page at http://www.nationalcoreindicators.org/resources/. And, as always, we would love to see what you are doing with NCI data. Let us know by sending an email to dhiersteiner@hsri.org.