VOR Survey: Giving a Voice to Families and Guardians of Individuals with Intellectual and Developmental Disabilities in Various Residential Settings
Policy favoring deinstitutionalization has had a major adverse effect on many individuals, with a shift in funding priorities from Medicaid Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID) and other specialized facilities, to smaller service options, such as Medicaid Home and Community-Based Services (HCBS) settings.
VOR has sought to tell the rest of the story.
Through a short survey, we asked to what extent families and legal guardians believe that their individuals are best served in their current setting, either in an ICF/IID or SNF (“ICF”) or a home and community-based setting (“Non-ICF”). The survey questions related to demographics, satisfaction, community integration, access to services, staff competency and vocational opportunities.
The responses to the ICF survey revealed a sharp contrast between common misperceptions of “institutions” as segregating and isolating environments and the perceptions of family members and guardians of individuals living in these settings. Based on their own experiences, ICF respondents indicated a high level of satisfaction with their individuals’ ICF homes, staff competency, access to services and community integration.
Especially revealing were the personal examples and responses provided by respondents, primarily families, in response to this question:
“What would you like our government to know about the current move to de-institutionalize ICF residents in favor of small community-based facilities?”
What mattered most to families of those receiving care in both ICF and Non-ICF settings was that their family members with I/DD received the care they needed and that their right to individual choice was respected. As so aptly stated by one respondent –
“Good public policies should be based on experience, common sense and humanity. There should be deference and respect for the positions of families who have first-hand experience in the care and treatment of persons with life-long disabilities” (ICF Survey respondent).
Read and download the press release for this survey