Most of the disabled individuals represented by VOR families and friends require an institutional level of care, whether the care is provided in an actual institution for those with the highest needs or in a community setting often funded by Home and Community-Based Services (HCBS) Medicaid Waivers.
VOR supports choice from a full array of high quality options based on individual need. Many influential advocacy organizations, such as the ARC, promote “Community for All” and the elimination of institutional and other congregate settings, despite evidence of systemic problems and underfunding of community care. The results of poor quality community care lead to abuse, neglect, exploitation, and isolation, the very characteristics that have arbitrarily been assigned to institutions, regardless of the quality of care and the appropriateness of the setting to meet individual needs.
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On Language: The "R" Word, the "I" Word, and the Subtext of Discrimination
by Hugo Dwyer
11/9/18
While attending the meeting of the President’s Committee for People with Intellectual Disabilities (PCPID) in Washington D. C. last month, I heard a number of participants mention their strong dislike of the “R” word. The general consensus was that the "R" word is hurtful, that it had been used to insult and marginalize people with intellectual disabilities. One speaker compared using the "R" word to using the "N" word.
We can all agree that the "N" word has always been a term associated with ignorance, racism, and hate. We can all pretty much agree that the "R" word has deviated from its original clinical usage to describe an intellectual condition, mental retardation, to become a derogatory, insulting, and disenfranchising term. As a result, we have stopped using the "R" word.
What struck me was the fact that most of the participants freely used the "I" word, Institution, as a demeaning term, without ever seeing the irony of their using this term in a manner that is hurtful, and disenfranchising to those who believe that Intermediate Care Facilities (ICFs) are the best solutions for a minority of individuals with intellectual and developmental disabilities, complex medical problems, and behavioral disorders.
ICFs are a legitimate, valuable component of our full continuum of care. They deliver a higher level of service for people with higher levels of need. ICFs are certified by CMS, and are thereby held to a much more stringent set of guidelines than HCBS waiver settings.
When members of the I/DD community derogatorily refer to ICFs as "institutions", their intent is often to invoke memories of the past, where people with I/DD were cruelly warehoused without treatment in places like New York's infamous Willowbrook State School or Pennsylvania’s Pennhurst State School and Asylum. Modern day ICF's bear no resemblance to those institutions. The use of the "I" word is just as hurtful, just as demeaning and marginalizing to our families as the use of the "R" word might be to theirs.
The families of people with severe and profound disabilities support the goals of inclusion and competitive employment for those who have the ability to participate in these environments. But we cannot help but feel marginalized and discriminated against by others in our own community, when we hear the word "institutions" used in a demeaning manner, when we are told that equivalent services are available in "the community",. Families who support these choices are often told that we are uninformed, afraid of risk, or that we just don't care enough for our loved ones to put them into waiver settings. That is hurtful. That is demeaning. That marginalizes us.
It's time for us all to acknowledge the breadth of the disability community, and work to support one another in our individual goals of making better lives. Please don't allow others to use the "I" word to demean and marginalize those who make this choice.
We can all agree that the "N" word has always been a term associated with ignorance, racism, and hate. We can all pretty much agree that the "R" word has deviated from its original clinical usage to describe an intellectual condition, mental retardation, to become a derogatory, insulting, and disenfranchising term. As a result, we have stopped using the "R" word.
What struck me was the fact that most of the participants freely used the "I" word, Institution, as a demeaning term, without ever seeing the irony of their using this term in a manner that is hurtful, and disenfranchising to those who believe that Intermediate Care Facilities (ICFs) are the best solutions for a minority of individuals with intellectual and developmental disabilities, complex medical problems, and behavioral disorders.
ICFs are a legitimate, valuable component of our full continuum of care. They deliver a higher level of service for people with higher levels of need. ICFs are certified by CMS, and are thereby held to a much more stringent set of guidelines than HCBS waiver settings.
When members of the I/DD community derogatorily refer to ICFs as "institutions", their intent is often to invoke memories of the past, where people with I/DD were cruelly warehoused without treatment in places like New York's infamous Willowbrook State School or Pennsylvania’s Pennhurst State School and Asylum. Modern day ICF's bear no resemblance to those institutions. The use of the "I" word is just as hurtful, just as demeaning and marginalizing to our families as the use of the "R" word might be to theirs.
The families of people with severe and profound disabilities support the goals of inclusion and competitive employment for those who have the ability to participate in these environments. But we cannot help but feel marginalized and discriminated against by others in our own community, when we hear the word "institutions" used in a demeaning manner, when we are told that equivalent services are available in "the community",. Families who support these choices are often told that we are uninformed, afraid of risk, or that we just don't care enough for our loved ones to put them into waiver settings. That is hurtful. That is demeaning. That marginalizes us.
It's time for us all to acknowledge the breadth of the disability community, and work to support one another in our individual goals of making better lives. Please don't allow others to use the "I" word to demean and marginalize those who make this choice.
