Project Description:
1. Need
Families with children with disabilities face particular challenges beyond the emotional stress of coping with the disability. Educational opportunities, health care utilization, and time spent care-giving are very different for families with and without children with disabilities. Care differences between these two types of families are significant and measurable. Families with disability generally have a higher cost of living associated with the greater need for paid care-giving assistance and in meeting the additional health care needs of the child. One review of the disability literature put the net additional cost to families who care for children with disabilities in a range between $10 to $8742 a year. 1 The Child Policy Research Center at Cincinnati Children?s Hospital Medical Center calculated that the out of pocket medical costs alone (not including outside care-giving costs) were on average for families of children with special health care needs $592 annually compared to $192 for families without children with special healthcare needs.2 In fact, 1 in 6 of these families had out of pocket medical expenditures greater than $1,000 3.
The real costs incurred by the family, however, is considerably more than just a function of added health care and formal care-giving costs. The most significant part of the economic cost equation results from time personally providing care to their child with a disability and the opportunity costs associated with that care-giving. The amount of time spent by families just in coordinating health care is considerable. Approximately 1 in 10 families spend more than 11 hours a week in coordinating care for their special needs child 4 Opportunity cost is measured primarily in terms of decreased earnings potential. Decreased earnings, in turn, translates to greater difficulty for families in providing basic necessities. A recent study showed that families caring for children with disabilities are much more likely to cut back on meals, or receive emergency food regardless of income strata 5. Almost 1 in 5 families have a care giver who stops working or who has cut back work hours to provide care. 6 The added economic burden on these families means that these households are often poorer with fewer options for upward mobility. A 2005 study reported that 40% of families of children with special health care needs experience a financial burden due to their child?s condition 7.
In addition to the economic hardships related to personal care giving, there are many stresses on the family facing disability that are more difficult to measure. Families caring for a child with a disability are more likely to face increases in divorce rates, depression8, and employment strain. This project will demonstrate the direct and indirect social, economic, and emotional impact of a child with disabilities as it relates to the immediate family.
Overall goals and objectives:
We will conduct two focus groups: one in an urban area (OSU campus) and another in a rural location (Hocking County). We anticipate that different issues and concerns may emerge from families in rural vs. urban areas. Parents, grandparents, and siblings of children and adults with disabilities will be recruited to participate in focus groups. Focus groups will be structured to capture the impact of the disability on family life. The economic, social, and emotional impact of the disability will be explored as well as the impact of navigating the social services system, waiting for services, and functioning without needed supports and services (see attached focus group script and list of questions). Focus group members will be recruited who can speak to the unique challenges that are presented in early childhood, school-age, transition age, and adulthood with a disability. A total of 8-10 family members will participate in each focus group. Focus groups will be 2-hours in duration and will be video-taped. Focus group video tapes will be edited and shared with our funder, the Ohio Developmental Disabilities Council. Focus group participants will be informed that groups will be video-taped, given a description of the topics to be discussed, and given the goals of the project when they are recruited. Informed consent will be obtained prior to the focus group.
3. Unusual features:
Information and perspectives from the focus groups will be integrated with survey findings from the National Survey of Children with Special Health Care Needs, the National Survey on Children's Health, and the Ohio Family Health Survey. We believe that converging information in this way will be more compelling.
4. Expected benefits:
The Ohio Developmental Disability Council plans to use the family perspectives provided in the focus groups to educate the public and policymakers and find opportunities for improvement to systems and services for families that would result in greater socio-economic good.
Unserved or Under-served Populations:
Geographic Areas, Rural/Remote
