HEALTH; Impact of Disability on Families in Ohio
Project Description:
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.
These impacts are not limited to the parents of children with disabilities but also affect the typically developing siblings of children and adults with disabilities. Indeed, these siblings grow up competing for attention with a sibling who has high needs from parents who are overwhelmed and exhausted. As adults, siblings often bear the burden of assuming care giving responsibilities as their parents? grow older, become increasingly frail, and are unable to provide care themselves. One goal of this project is to further explore the impact of disability on these typically developing siblings.
In year two of the project, we conducted two focus groups at the Nisonger Center on OSU campus. Siblings of children and adults with disabilities were recruited to participate in the focus group. Adolescents (ages 12-18) comprised one focus group; participants in the other focus group were adults. Focus groups were structured to capture the impact of the disability on family life and on the sibling specifically. The economic, social, and emotional impacts of the disability were explored as well as the impact of any actual or perceived expectation of assuming responsibility for the sibling with the disability.
In addition to focus groups, we conducted a state-wide survey of families of children and adults with disabilities. The primary objective of this survey was to identify what services are most effective and helpful to families. We conducted a mail survey of 500 Ohio parents who have a child with a disability. Caseworkers from participating county boards of developmental disabilities distributed the survey to family members during a regular face-to-face visit with the family. Included in the project packet was a letter explaining the purpose of the project and providing a telephone number to contact project investigators for more information or for help completing the survey. The survey itself was anonymous and only basic demographic information was requested
Summarized reports were made available on the GRC website and were disseminated to the County Boards of Developmental Disabilities. The Ohio Developmental Disability Council plans to use the family perspectives provided in the family survey to educate the public and policymakers and find opportunities for improvement to systems and services for families.
Keyword(s):
people with disabilities, impact, quality of life, education, healthcare
Core Function(s):
Performing Research or Evaluation
Area of Emphasis
Health-Related Activities, Quality of Life
Target Audience:
Legislators/Policy Makers
Unserved or Under-served Populations:
Other
Primary Target Audience Geographic Descriptor:
State
COVID-19 Related Data:
N/A
