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9 Getting Involved

How to Get Involved in Nursing Home Abuse and Neglect Issues

If you are concerned about the quality of care that nursing home residents receive in Illinois – especially your mother, father or other elderly loved one – you should get involved with efforts to improve the situation.

As history shows, you and others like you can make a difference.
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Grassroots efforts by nursing home residents, their families and advocacy organizations such as Illinois Citizens for Better Care actually led to the landmark Nursing Home Care Reform Act of 1979.

More recently, that same style of grassroots advocacy resulted in the Nursing Home Safety Act of 2010, which enacted several important reforms such as:

  • Increasing nursing home staff-to-resident ratios
  • Adding more statewide nursing home inspectors
  • Changing penalties for nursing home violations, including adding a new violation level, AA, for violations that lead to the death of a resident
  • Publishing a quarterly list of “distressed facilities”
  • Improving criminal background checks of residents
  • Giving protection to nursing home staff members who report suspected abuse, neglect or exploitation
  • Requiring a new protocol for getting informed consent from a resident or guardian to administer powerful antipsychotic medications.

Additionally, due to a push by patients and families – and Attorney General Lisa Madigan – another nursing home safety measure could be signed into law.

On the last day of the most recent Illinois General Assembly session, both the House and Senate passed a law that would make Illinois the fourth state in the country to allow families to install audio and video monitoring devices in their loved one’s nursing home room.

The bill, H.B. 2462, is aimed at deterring and catching abuse and neglect. Hopefully, knowing they could be caught on camera, nursing home staff members will refrain from mistreatment of residents. If they do engage in wrongful activity, the cameras can provide clear evidence in criminal investigations, administrative actions and civil lawsuits.

This bill provides a solid example of how your voice can be heard by lawmakers and lead to meaningful reforms that will ultimately benefit your loved one.

State and National Advocacy Organizations

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If you would like to become more involved with nursing home reform efforts, the following is a list of national and Illinois-based advocacy organizations:

  • Illinois Citizens for Better Care – Since 1978, this non-profit organization has been a leading advocate for nursing home residents in Illinois, pushing the Illinois General Assembly, Congress and state and federal agencies to improve the quality of care that residents receive.
  • Illinois Campaign for Better Healthcare – This organization was founded in 1989 “on the belief that accessible, affordable quality health care is a basic human right.” Today, it consists of 300-plus local and statewide organizations, making it the state’s largest health care coalition. Check out the “Action Alert” section to see if there is any pending legislation that could impact your loved one’s life in an Illinois nursing home.
  • Long Term Care Community Coalition – This organization started in the late 1970s in New York in response to growing concerns about long-term care facilities in that state. Today, the group serves as a national watchdog.
  • National Consumer Voice for Quality Long-Term Care – Formerly known as the National Citizen's Coalition for Nursing Home Reform, this organization was formed in 1975. The Consumer Voice strives to represent consumers in long-term care issues and to provide information to families, caregivers, advocates and ombudsmen.
  • LeadingAge – Formerly the American Association of Homes and Services for the Aging, this organization provides information and support “to help people make the most of the aging experience.” Its membership includes 6,000 non-profit organizations, 39 state partners and numerous foundations, consumer groups and research partners.

Staying Updated on Nursing Home Legislation

While issues such as placing cameras in nursing home residents’ rooms tend to garner a lot of media attention, there may be other important nursing home reform bills that are pending in the legislature that fly under the media radar.

If you would like to learn more legislation impacting nursing home residents in Illinois, go to the Illinois Department of Aging website and check out its legislation updates.

Another excellent source for information – on a national level – is the National Center on Elder Abuse (NCEA), which is actually a part of the Administration on Aging within the U.S. Department of Health and Human Services.

Of course, you can keep track of the latest bills impacting the lives of nursing home residents and their families in Illinois by simply going to the Illinois General Assembly website, which allows you to search for bills by keyword.

The ILGA website also features directories for House and Senate members. Look up your local representative and contact him or her if you want your voice to be heard on issues that concern you and your elderly loved one.

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