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  • In a recent edition of the American Journal on Intellectual and Developmental Disabilities, Parish, et al. wrote about the financial status of single mothers with children with developmental disabilities (Parish, et al., 2012). This article prompted us to take a look at our data and see what they showed about the financial situations of single parents of children with ID/DD.

    We looked at the preliminary results from the NCI survey administration in 2011-2012. We examined the data from the Child Family Survey (CFS), which looks at families with children under the age of 22 with ID/DD living in the home. Most families surveyed for the CFS are receiving Medicare. We then filtered the results so that the data represented only those respondents who were the only parent living in the household (we do not ask the respondent’s gender, so we could not at this time assess whether the respondent was a mother or a father). 

    The sample size of single parents from the CFS was 205. Table 1 demonstrates the household income of these respondents.

    Table 1: Household income of single parents of children with ID/DD

    Household   Income


    Below $15,000








    Above $75,000


    Total (N=205)


     As is evident from Table 1, almost 61% of single parent respondents have a household income of less than $15,000 a year. Although shocking, this is not surprising as studies have shown that children with ID/DD often require lifelong care, therefore limiting a parent’s employment opportunities. In addition, families with children with ID/DD often face elevated costs of disability-related care (Parish & Cloud, 2006; Emerson, 2004; Parish, et al., 2004).

    Again looking at the single parent respondents to the CFS, we then examined the out-of-pocket expenses. It was very interesting to look at out-of-pocket expenses by household income (Table 2).

    Table 2: Out-of-pocket expenses by household income: Single parents of children with ID/DD

                                            Household Income
    Below $15,000 $15,001-$25,000 $25,001-$50,000 $50,001-$75,000 Above $75,000 Total
    Out-of-pocket   expenses            
    $0 41.1% 24.2% 9.7% 7.7% 0.0% 30.9%
    $1-$100 22.6% 18.2% 19.4% 7.7% 0.0% 20.1%
    $101-$1000 24.2% 48.5% 32.3% 46.2% 33.3% 30.9%
    $1001-$10,000 9.7% 9.1% 35.5% 38.5% 66.7% 16.2%
    Above $10,000 2.4% 0.0% 3.2% 0.0% 0.0% 2.0%
    Total (N=205) 100.0% 100.0% 100.0% 100.0% 100.0% 100.0%

    As can be seen in Table 2, almost 25% of single parents making below $15,000 per year spend $101-$1000 on out-of-pocket expenses related to their child with ID/DD. Also, almost 10% of single parents making below $15,000 per year spend between $1001 and $10,000 on out-of-pocket expenses related to their child with ID/DD.

    As is evident from these data, the financial situation of single parents of children with ID/DD is disheartening.  State directors and policy makers can use this data to develop more targeted measures to address the financial well-being of single parents.


    Emerson, E. (2004) Poverty and children with intellectual disabilities in the world’s richer countries. Journal of Intellectual and Developmental Disability, 29, 319-338

    Parish, S., Seltzer, M., Greenberg, J. & Floyd, F. (2004). Economic implications of caregiving at midlife: Comparing parents with and without children who have developmental disabilities. Mental Retardation, 42(6), 413-426

    Parish, S., & Cloud, J. (2006). Financial well-being of young children with disabilities. Social Work, 51 223-323

    Parish, S., Rose, R., Swaine, J., Dababnah, S., Mayra, E. (2012) Financial well-being of single, working-age mothers of children with developmental disabilities. American Journal on Intellectual and Developmental Disabilities: 117(5): 400-412. Retrieved from


    Please note: The 2011-12 data reports will be released and placed on the NCI website this Spring.  For more in depth analysis of previous year’s NCI consumer survey data, please see

  • Although many of the later life social concerns of older individuals with ID/DD may be similar to those of the overall ID/DD population, older individuals with ID/DD do have distinct and specialized needs.  Aging individuals with ID/DD may face additional exclusion from the community and from their friends and families.

    There is a lack of information about the social experience of aging individuals with intellectual and developmental disabilities (ID/DD). NCI data can be used to begin to address this dearth of data and provide insight into the social challenges faced by aging individuals with ID/DD.

    The following data comes from the 2009-10 National Core Indicators (NCI) Adult Consumer Survey. Approximately 7% of the total sample (833 people) were age 65 and older.

    As seen in Table 1 below, NCI data show that older adults with ID/DD were consistently less likely to take part in integrated community-based activities such going shopping, out for entertainment, or out to eat. In almost all of the community participation variables (excluding “Went to religious services in past month,”) the difference in percents between the ‘under 65 years’ cohort and the ‘65 years and older’ cohort are statistically significant. This means that the differences reflect a pattern and are not due to pure chance.

    Table 1. Community participation


    Under   65 yrs

    65   yrs and older

    Went   shopping in past month *



    Went   on errands in past month *



    Went   out for entertainment in past month *



    Went   out to eat in past month *



    Went   to religious services in past month



    Went   out for exercise/sports in past month *



    Went   on vacation in past year *



    * signifies statistically significant differences at α = 0.01; ** signifies statistically significant differences at α = 0.05;

    Additionally, NCI data show that individuals 65 and older were less likely to report having friends (68%), and less likely to be able to see their families when they wanted to (69%) than were younger individuals (74%, and 81%, respectively).

    NCI data suggest that older adults with ID/DD were less likely to participate in community life or to have friends or be able to see family than younger individuals with ID/DD.  This data can be used by states to reinforce the need to assist older adults with ID/DD to participate in community life. In addition this data can be used to encourage the education of support workers to help people stay active and connected to community and social networks.



    “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!