VOR's Ongoing Document:
Updated October 3, 2019
This document provides a bibliography of investigative media series, state audits and peer-reviewed research in more than half the states that detail systemic concerns with regard to quality of care in community-based settings for persons with developmental disabilities. Tragedies range from physical, emotional, and financial abuse, neglect and even death. Many of these outcomes are associated with a zest to move to a "community for all" vision people with developmental disabilities without adequately considering the ramifications of separating vulnerable people from specialized care and then doing away with a critical safety net (a/k/a deinstitutionalization). The lessons learned from more than 25 states should cause policymakers and lawmakers to take pause and recognize that a range of needs requires a range of service options.
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Class action lawsuits have closed many ICFs/IID and reduced options for those who need fulltime care
Federally-funded attorney groups have pursued at least 30 class action lawsuits against ICFs/IID, driven primarily by a bias against ICF/IID care. In fact, since 1996, every federally-funded lawsuit against an ICF/IID has been for the primary purpose of removing residents from their ICF/IID home (“community integration”); the condition of care at the targeted ICFs/IID was not at issue in any of these cases.
Fifteen of these cases have led to the closure of ICFs/IID, affecting thousands of individuals with intellectual disabilities.
Despite the fact that ICFs/IID are a residential option created by federal law and funded and monitored by HHS, most of these lawsuits are filed under the Protection & Advocacy (P&A) program, whose lawyers are also funded by HHS. Because one program authorized by HHS is suing another program authorized by HHS, these suits could be labelled HHS v. HHS.
Download case documentation here
Right To Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID)
Individuals who qualify for Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID)* under Medicaid have a legal right to such facilities for as long as they remain eligible and choose to do so. Despite a deinstitutionalization effort by those opposed to congregate care, the ICF/IID program remains a legally enforceable federal entitlement under Medicaid. States which have included ICF/IID in their Medicaid State Plans, but instead offer only Waiver services, are in violation of federal Medicaid law.
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.
