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October 20, 2004

October 20, 2004

Closing Remarks of Barbara Hengstebeck, President
National Citizen’s Coalition For Nursing Home Reform

at the
29th NCCNHR Annual Meeting, October 17-20, 2004
“Spotlight on Quality – Focus on Residents”


I am delighted and humbled to have been elected to serve as NCCNHR’s President for the next two years.  For those of you who don’t know me, I became an advocate for residents after working for seven years as a nursing home activities director.  I was Florida ’s State Ombudsman from 1989 until 1994, and worked in the State Medicaid office for two years after that.  Since 1996, I have been the director of the Coalition to Protect America ’s Elders – a citizen advocacy group in Tallahassee Florida -- and I am the caregiver for my husband’s parents who live with us in our home. 

As I think about long-term care, I am overwhelmed by the challenges we face as advocates.  Long-term care is changing so fast it’s difficult to keep up.   Nursing homes continue to be part of the long-term care continuum, but assisted living facilities seem to be springing up on every corner as seniors opt for less institutional and more home-like care – not knowing that there are no federal regulations in place to protect them.  Advocates who have lived through the horrors of poor care, fraud and abuse in nursing homes know that the lack of federal regulations and weak state regulations is bad news for residents.  Medicaid reforms being considered in many states threaten a senior’s ability to pay for needed care—both in the community and in long-term care facilities.  As tort reforms are passed in state after state, it is becoming difficult if not impossible for residents who are harmed to seek just compensation through the courts.  Mandatory arbitration clauses in admission contracts are further eroding resident’s rights and closing off access to the courts.  State budget cuts are affecting Ombudsman programs’ abilities to investigate and resolve resident complaints; and lack of independence for many ombudsman programs silences their advocacy voice.   State survey agencies are also affected by these budget cuts, weakening enforcement of state and federal regulations.

We must all work together as we face these challenges.  There is no single way to effect needed change.  We need empowered residents and families, strong resident councils and family councils.  We need strong, independent ombudsman programs, NASOP, and NALLTCO.  We need citizen advocacy groups.  We need help from attorneys, especially our friends in ATLA and NAELA.  We need to educate the public, and keep long-term care issues in the forefront by writing op-eds and submitting letters to the editor of our local papers.   We need researchers like Charlene Harrington , David Zimmerman, Eric Carlson and Catherine Hawes to continue to provide us with accurate data.   We need the continued presence of the GAO documenting and validating what we as advocates experience in facilities every day.  We need our friends at the Department of Justice and the Administration on Aging.  We need deep culture change in nursing homes and more pioneering providers.  We need committed doctors like Dr. Laura Mosqueda who spoke at our opening plenary session about her work establishing ABUSE teams, and Dr. Anita Westafer from Pensacola Florida – the winner of this year’s Cernoria John son Award. We need strong regulations, strong enforcement and strong remedies – including state survey agencies that apply them in a consistent manner.  We need to be able to depend on CMS and the QIOs to make that happen.   We need educated Legislators to pass needed changes in the laws that protect residents.  We need STAFFING, STAFFING, STAFFING – not just the piecemeal state-by-state approach, but a federal minimum staffing requirement.  We need to use the new technology that’s available for the benefit of residents – including surveillance cameras if the resident chooses.  We need ABUSE teams, and Adult Protective Services.  Residents and families must have the ability to use the court system when residents are harmed, and as tort reform is passed and the ability to seek justice through the civil courts is stripped away, we need to seek justice through the criminal courts.  

We need each and every one of NCCNHR’s members – and thousands more just like you, continuing the work that you do every day on behalf of residents.  And we need NCCNHR to continue to bring us all together – helping us communicate with each other, providing us with information and resources and empowering us to carry on this important work.

Thanks to each and every one of you for attending this year’s conference and thank you for the work that you do every day on behalf of nursing home residents.  See you next year!



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