Humanize Long-Term Care: Dignity and Community

Humanize Long-Term Care (LTC)

Update: Here are supporters that filed witness slips in support.  


As America ages, and more of us will be living with disability, a growing network of consumer and worker advocates wants Illinois to be a national leader in Humanizing Long Term Care. People with disabilities and seniors deserve dignity in facilities, and viable alternatives to institutions - integrated into community life.

HB3716 (fact sheet here) developed by current/former nursing facility residents does two things:

a) Creates a 'New Directions Task Force' including consumer, labor, industry and government, to develop a plan that enables those needing long term care to have a viable choice between community and institution. Without a plan, we cannot create the system that enables care at home or in a less restrictive community environment, provides living wages and better working conditions.

b) Establishes a new enforcement mechanism to deter facilities from punishing residents and staff that stand up for their rights, and advocate for themselves and others. On paper, people in facilities have many rights and protections, but without freedom to speak up, those rights are easily denied.

Though some nursing facilities have no opposition to these measures, lobbyists for the for-profit industry is fighting to maintain their power over residents and staff.  

Please use this form to take action!

People with disabilities (PWDs) and elders deserve better.


Stay tuned: the New Directions Task Force and anti-retaliation are most pressing, but IRRC members and allies are continuing to work to secure funding and other policy changes that

* triple the Personal Needs Allowance (PNA, currently the same $30/mo federal minimum set in 1986)

* creates an emergency/on-call home support program so people that don't need a 24/7 facility to avoid being institutionalized (e.g. the hospital-to-nursing-home pipeline, or when a PA doesn't show)

* strengthen facility ombudsman programs, with more staff, greater powers to help residents

* end Medicaid's institutional bias (see here)

* strengthen policies that will save lives in declared disasters


COVID deaths in long term congregate (LTC) facilities (nursing homes et al.) brought new urgency to the long-standing goal of a person-centered long-term care system that prioritizes what's best for each person, and enables people with disabilities (PWDs) and elders to live with maximum dignity and autonomy - with viable community alternatives to being in an institution.

Disability-led groups across Illinois and across the country are calling for a new direction for long term care, away from institutions and toward home and community-based services (HCBS). Any such transformation requires a plan that is concrete, can work, treats workers and other stakeholders fairly, and has a step-by-step process of developing the programs, models and policies that enable persons the viable option to be in or stay in home and community-based settings.