Developed by current and former nursing facility residents and allies, and supported by a wide range of disability, senior, and labor groups, this proposal does two things:
1) creates a ‘New Directions Task Force‘ to transform Illinois long term care (LTC) system, so people with disabilities and elders have a viable option to live in their own homes in the community – rather than an institution. The task force of consumers and officials, industry and labor, and will create a plan for a New Direction.
2) establishes a new mechanism to deter retaliation by facilities against residents or staff that advocate for themselves or others, that speak up for their rights.
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On paper, facility residents have many rights and protections, including the civil right to get the care they need in home and community-based settings. In practice, 1) facilities have so much control over residents and staff that abuse, neglect, and retaliation against those that speak up is widespread, 2) Institutional bias traps tens of thousands of people in institutions that have no reasonable need to be there.
“Institutional bias” is what policy advocates call the wide range of legal, financial, political, and administrative forces, combined with ableist prejudice, that reinforce institutionalization (e.g. Medicaid automatically paying nursing facilities as an entitlement, while at-home care requires special waivers, limits how many can qualify, or hospitals pushing people into nursing homes, instead of their own homes, without a need for 24/7 facility.)
Some facilities accept that these measures are needed. But many owners of for-profit nursing facilities have a long history or putting profits before people, and have millions of dollars for lobbying and campaign contributions, to maintain the control they have, reduce the voice of residents and staff, and prevent Illinois from creating home and community based alternatives to their lucrative businesses.
Illinois can do better, as a leader in Humanizing Long Term Care.
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Institutional Rescue and Recovery Coalition (IRRC) 