Friday, April 10, 2015

Groundbreaking Survey of Families of Adults with DD

“….Dispels myths, shows institutional homes are part of our communities”

I’m not often quoted in press releases, but this has to do with a committee that I chair for VOR. We conducted a survey that gathered perspectives of families of individuals with profound disabilities who receive care in Medicaid Intermediate Care Facilities (ICFs) or in home and community-based settings.

VOR is a national nonprofit organization that advocates for individuals with intellectual and developmental disabilities, including autism. We are the only national organization that advocates for a full range of residential and service options for people with intellectual and developmental disabilities, including own home, community-based, and larger settings, such as licensed Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID).

Here is the press release for the survey report.

VOR represents a large number of families whose family members have severe to profound disabilities that are complicated by the presence of multiple disabilities, medical fragility, or severe behavioral challenges. Many, but not all, live in institutional settings, and have needs that are often overwhelming for families and smaller community settings such as group homes. We were able to gather responses from families and guardians in thirty states, representing 117 Intermediate Care Facilities (ICF/IID) and compare them with responses from families and guardians of people who lived in smaller community homes. 

Individuals who live in Medicaid-funded ICFs/IDD receive an institutional level of care. As a bundled service program, Medicaid ICF settings provide a set of services according to a standardized set of guidelines across the nation. The “Social Security Act created this benefit to fund ‘institutions’ (4 or more residents) for individuals with intellectual disabilities, and specifies that these institutions must provide ‘active treatment,’ as defined by the Secretary” [Centers for Medicare & Medicaid Services(CMS)].

The conclusions we reached from the survey results were:

  • 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. 
  • Non-ICF respondents expressed general satisfaction in measures relating to integration, access to services, staff competency, and vocational opportunities but were evenly divided over whether their individuals would do poorly or well in an ICF as an alternative setting. ICF respondents by a strong majority believed that their individual would do poorly in a non-ICF community setting. 
  • Most respondents for both surveys were informed about alternatives to their individuals’ current placements based on their own evaluations of different settings and, in some cases, the individuals’ prior placements in other settings. 
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). 

About VOR

from the Nonprofit Quarterly, July 2014:  "People as Pendulums: Deinstitutionalization and People with Intellectual and Developmental Disabilities" by Tamie Hopp, VOR Director of Government Relations & Advocacy

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