The Honorable Bob Graham
Senator, State of Florida
524 Hart  Building 
Washington, DC

Dear Senator Graham: 

The horrific but true plight of the nearly 2 million Americans in our country’s nursing homes has now been so clearly identified before our Congress that it is totally unconscionable to stand by and do nothing to  remedy this terrible injustice.

From GAO reports over the last approximately 18 months,  and personal testimony before Congress, it appears clear that more than one-half of the nation’s nursing homes are so understaffed as to place residents in danger,  that nine out of ten do not provide adequate care, and that neglect and abuse (mental, physical and sexual) are rampant without accountability.

As my family’s “designated caregiver” for nearly 20 years, I have had personal experience with numerous nursing homes in this area.  In addition, I visit in nursing homes wherever I go.   I have personally seen, heard, smelled, tasted, and felt  pretty much every long term care circumstance  which  your mind  can conceive, and many which cannot be conceived and are totally unthinkable.  The GAO reports and testimony were no surprise to me, but served to confirm my own conclusions.

Although all of my disabled family members  have now died, the terrible images which remain in my mind have caused me to pursue, to the best of my ability,  the issue of improving the quality of care and quality  of  life  of  those who remain  trapped  in  our  nursing homes for the remainder of their lives,  and those who will be there in future years, when there is no other alternative.

In my personal opinion, many people who are now in nursing homes could have been better taken care of at home, if home health or community based services were reasonably available;   I fully concur with a moratorium on nursing home beds, and a shift to home and community based care.  However, in the present absence of sufficient home and community based care, it is vital that those who have no other option but nursing home placement receive at least reasonably adequate care.

In saying that, I don’t mean plush carpets, lovely curtains, and oak furniture --  I do mean the right medicine for their condition at the right time, nourishing food and reasonable hydration (being given a drink of water), being kept safe, clean and dry, with appropriate interventions to minimize preventable illnesses, falls, and bed sores. 

Surely we all have the responsibility to see that nursing home residents  receive adequate care.   A nursing home is their home -- where they live, every day.  This is America – not a 3rd world country.  For the most part these people have already worked their lives, paid their dues to society, and now are so disabled and vulnerable that it is incumbent on those who are able to do so,  to see that they are not deliberately left in the deplorable and dangerous conditions which have now been clearly identified in Washington.

Following the first of the GAO reports detailing the effect of insufficient staffing on nursing home residents,   I began working on a state-wide campaign to increase the number of staff in Florida – working with anyone and everyone with the same goal, including partnering with the Florida AARP toward that end, urging them to seize that moment in time to “make it happen.”

On May 15, 2001, following a turmoil-ridden legislative session, Governor Bush signed SB 1202, which among other things, increased nursing home staff  and provided numerous quality of care provisions, which were direly needed and for which I am very grateful and thankful.  (In Florida, licensed staff is now set at 1.0 hpd, with CNA staffing set at 2.3 hpd effective January ’02, increasing to  2.6 effective January ’03, and 2.9 effective January ’04.)  

Much has happened since then.  Even more neglect, and sadly, much more downright abuse, mental, physical and sexual,  has been identified by the GAO to be happening to  nursing home residents  everywhere in America, with literally no accountability.

With this information fresh in hand, and, I am sure, confident in the knowledge that the most  important first step in remedying this shameful situation is to mandate staffing in appropriate numbers,  Rep. Henry Waxman (D-CA) has  introduced HR 4715, calling for minimum staffing of 4.1 hpd, with 1.7 hpd of this number to be from licensed nurses.  This would be a huge step forward.

You may be aware that following the GAO report on abuse in early February, the NY Times printed an extensive story outlining the critical problems which envelop nursing home residents.  The story contained a small amount of  information I had documented and provided to the author, and identified me as a resident of  Tampa, Florida.  The story was picked up by the Associated Press, and went all over the country.  

Subsequently the AARP published an issue of its Bulletin which contained a special section detailing these issues and its concerns over the poor care which nursing home residents were receiving;  it also identified me as a caretaker  from Tampa, Florida.

Following each of those distributions, with the simple identification of my name and Tampa,    I received numerous calls and e mails – some from Floridians, but many   more   from individuals from other states,  incensed over the terrible incidents which had occurred with respect to their own loved ones, and those reported in the publications,   and asking what they could do to help.   One couple in their 80’s from California contacted me to see if they could march on Washington with me! There were numerous calls from CNA’s who wanted to do a good job, but found that  it was impossible for anyone to handle  the large numbers of residents that they were required to care for every day.    

At the same time, the National Citizens Coalition for Nursing Home Reform, based in Washington, has received and delivered to Congress more than 100,000 petitions from voters all over the country, requesting Federally mandated staffing in adequate numbers.  

So, it has become clear that this is definitely a national problem –  more specifically, a national shame. 

In keeping with the monitoring program which I am trying to maintain  here in Florida, I have encouraged everyone who contacted me to try to serve as a volunteer ombudsman in their own area, and also to make sure their Congressmen know that Federal legislation must be enacted to establish sufficient staff as a vital step to securing adequate care for all nursing home residents.  

Rep. Waxman’s bill now has numerous co-sponsors; however, there is no companion bill in the Senate at this time.  

Because I believe Florida should be the national leader in correcting the terrible injustice which exists, I respectfully   ask you  to file the requisite companion bill and to ask our entire Florida delegation to strongly support the bill.

In addition, because all care in a nursing home is driven by the number of staff on hand to take care of residents, I urge you to support an amendment to require CMS to develop a Quality Indicator for staffing, require facilities to report quarterly the staffing information they post in the facility, and require states to audit the accuracy of the information.

As always, money is a big issue to be confronted.  I am well aware, and concur,  that America’s  “war on terror” now requires huge assets to be allocated to that terrifying crisis.

But  I see the current plight of nearly three million nursing home residents   as an equally terrifying  “war”.  

Almost all nursing home residents will tell you that it is truly terrifying to be placed in a nursing home and know that you will wake up there every day for the remainder of your life.  I can tell you, and I believe most other caregivers everywhere feel that it is equally  terrifying to have to place someone you love in a nursing home,   and be unable to work during the day or sleep during the night, fearful of what was happening there -- fears now clearly known to be fully justified.    

So, while  huge amounts  of America’s assets must be allocated to the ”big” war, some assets must also be assigned to this different but equally critical  war.  

It would appear to me that there are several sources of potential funding which could be used to provide the staffing necessary to safeguard nursing home residents throughout the country. 

These include:

extensive use of the “tobacco money” which was computed to a large extent on the projected cost of long term care for individuals with smoke-related diseases (but which many seem to want to use everywhere but there – as evidenced by the sampling 
reflected in the  newspaper article which appeared in USA Today on Tuesday, July 2nd);

full recovery and  collection (rather than compromising down) of all funds identified by the Department of Justice to have been fraudulently claimed  and received by the nursing home industry: and full collection (again, rather than compromising down) of all of the deficiency fines asserted against the nursing home industry.  

Additionally, the multi-millions of dollars being spent on the current pilot program in 6 states, including Florida,  to help individuals select a “good” nursing home  -- the one in ten that  we are told is  providing adequate care  -- the one in ten  which is said to be out there somewhere, but could well be located in another city or state  --  could instead be diverted to making the other  nine better.

Further, I believe the President’s mandate for corporate accountability must definitely include the nursing home industry, which has been identified by the GAO and the
Department of Justice to have been riddled with fraud over a long period of time.

In any event, I know from history, that if a sincere commitment is made to remedy this situation, then the money will be found.

Appropriate Federally mandated staffing is critically necessary, and surely the time is now. To stand by and do nothing to improve the lot of America’s nursing home residents, in 
light of the evidence presented over these last months,  seems totally  unconscionable to me.

Senator Graham,   I have been  hesitant to bring this issue to your attention, because  I know you are so heavily involved in other national  concerns which are also  critically important to our country.   Nevertheless I feel impelled to do so now because nursing home residents really  need your support, and I don’t think we can make this happen without you.

I respectfully urge you to seriously consider this issue – to seize this  particular  moment in time, while the evidence provided to Congress is still fresh in everyone’s mind, to remedy   the horrific
plight of America’s very vulnerable nursing home residents  by enacting Federally mandated staffing in adequate numbers.

These Americans really have no other recourse  but to seek redress through legislation. 

Very sincerely,

Anna M. Spinella

(by fax to Washington office, and hand delivery w/enclosures to Tampa office)

P.S.  As an aside, but really quite an important piece of the quality of care puzzle,  I frankly do not understand why there is not a clear declaration that nursing home residents have the right to use monitoring cameras without retaliation –  such a few little words that could make a huge difference in improving quality of care.