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An Open Letter to President-Elect Obama about Homecare, Jobs, and a Reason to Live

by Nancy Becker Kennedy --


Anyone who knows me knows how I wept with tears of joy when I heard you give the keynote speak at the Democratic convention. I said “This man is the balm for our wounds." And I appreciate how you always mention people at disabilities in all your speeches. I've been waiting to hear that for a long time. I've had an Obama 2008 sticker plastered to the back of my wheelchair for almost two years now. I've met the nicest people that way, but this is not the reason I'm writing to you.

I need to tell you about how we could save billions in healthcare dollars while creating millions of jobs for workers who might otherwise be dependent on Public Assistance. I helped to found and have served for 11 years as a member, and most recently as the vice chair, of the Los Angeles County’s Personal Assistance Services Council (PASC), the largest public authority in the United States.

Our PASC oversees the In-Home Supportive Services program in Los Angeles County serving 168,000 seniors and persons with disabilities partnered with the SIEU’s home care workers Union to give seniors and people with disabilities dignity and empowerment in their own homes at less than a third of the cost of warehousing us in nursing homes. Our public authority employs 139,000 home care workers. In our program, here in California, which could serve as a model for the nation, we save very substantial sums. The cost of the average person receiving assistance on the IHSS program in California is approximately $12,400 while the annual cost of maintaining such a person is a skilled nursing facility is over $57,000.

Nationally, this program could employ millions of workers. You've spoken many times of the need for jobs, as well as the need for service. I can think of little that could be this effective to promote both these causes. And while promoting service and empowerment, we could at the same time eliminate a great evil. By that I’m referring to the waste of human talent and cutting short the lives of millions of people inappropriately placed in nursing homes.

Nursing home abuse and neglect ranges from unconscionable to horrific. Older people are left to get bedsores and lie in their own excrement, while nursing homes cut costs, and the patient ratios are terrible. When I visited with four women in a nursing home for a year, I’ll never forget waiting with one woman crying, who was holding her bladder for close to two hours until one of the nurses aides, who was responsible for eight other patients came in to put her on the toilet. Young people in nursing homes are robbed of the vital life they could have and are not even made aware of their options. Instead, some states are now offering them assisted suicide. The prejudice against and marginalization of people with disabilities is so pervasive that we are viewed as people whose lives are not worth living.

For young people and seniors who don’t require skilled nursing, being warehoused in an institution is to live a life akin to a political prisoner -- with no real civil rights or rights to even move about the community. I broke my neck at age 20, and had I been sent to a nursing home, I swear to G-d that I would have been dead decades ago, from cross-contamination because of my indwelling catheter, but more importantly, I would have withered away from a life without hope or purpose.

My mother and I had a suicide pact. Tomorrow I will be 57 years old, and having had a life of purpose, energy, adventure, service, marriage and even visiting England and France, I shudder to think that I could have made that decision. I didn’t make that decision because the Rehabilitation Institute of Chicago expected too much of me, the University of Illinois gave me a wheelchair accessible campus to return to, and most importantly in-home care gave me the passport I needed to return home to an independent life in the community. Had I not had these gifts, I might have asked for that lethal injection. The wrong public policy kills -- not only physically, but it kills people's spirits, and the cherry on top is that it cost taxpayers over three times the money to do it.

With homecare I was able to return to college to earn a master's degree, become a news and public affairs producer for public television and later become a comedian and always an activist for people with disabilities. And now, thanks in large part to Senator Kennedy, Jim Jeffords, and my very dear friend, John Podesta, who is heading up your transition team, I work as a therapist at the Hollywood Sunset Free Clinic because of the Work Incentives Improvement Act. But I had the best of everything.

My fate was so much different than the young people who have my same injury today. Now HMOs send newly injured young people to nursing homes -- nursing homes that hire a physical therapist to come in once a month and then euphemistically refer to themselves as "rehabilitation centers." As someone who received her rehabilitation from the Rehabilitation Institute of Chicago and later worked with newly injured people at the Rancho Los Amigos National Rehabilitation Center, I know what real rehabilitation is.

When my mother suffered from a fall last year, and she could not return to her assisted living for several days, the acute care hospital told me they were transferring her to a "rehabilitation center." They promised me that in the three days my mother would stay there, they would give her physical therapy twice a day, and I wanted that because she was falling and we didn't know why.

When I arrived the next day to this "rehabilitation center” with no telephone for me to reach my mother, there was no physical therapist there. Instead, my mother had been lying in bed for 10 hours, been drugged, put in diapers, and looked like she was not even alive --while a large slice of French bread pizza was the only item on her dinner plate. My mother takes insulin for diabetes.

When I protested that a diabetic should not be given only a large piece of French bread pizza filled with starch, they said "Our diabetic care is calorie controlled," another euphemism for not giving a damn about what they feed people with medical conditions as long as it's cheap. When I asked why she hadn’t been gotten out of bed for 10 hours, they said "She didn’t want to," another euphemism for not feeling energetic because you are being dosed with Vicodin four times a day at 85-years old.

My mother was lucky. She had me to advocate for her and to take her back to the decency of her assisted living, but other people are not so fortunate. People are dying from these euphemisms.

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Whenever I visit my doctor, I try to always go up to the rehab floor to visit with the newly injured patients. In the last two years, you could shoot cannon through these real rehabilitation centers. Where I used to visit 40 patients, there are now two, as HMOs send young people to nursing homes. It is a quiet genocide that robs them of their spirit and their futures. It kills their body through cross-contamination and neglect, but worst of all, the eclipse of hope sends them to an early death.

I have always been in the right place at the right time, but it shouldn't be a crapshoot, whether you live or die in hope or despair. It isn’t fair that paraplegics living in one state should die an early death in a nursing home because they don't have homecare or because when they were able-bodied, they didn’t have the medical sophistication to know what their HMO would do and how to keep themselves out of nursing homes when trauma strikes.

People don’t know what they can have. They die of despair, without adequate services, and the time is long overdue to rectify this evil. Making in-home supportive services a national choice would not only give the gift of dignity and efficacy of millions of seniors and people with disabilities, but it would employ millions of home care workers as well.

When I visited those women in the nursing home, there was one worker for eight women. Three home care workers are employed taking care of me. That means that people who might otherwise be on public assistance could have jobs, and we have the opportunity to go out into the world and make a difference. President Obama, you talk about the need to look for wasteful programs and replace them with good ones. For people inappropriately placed in nursing homes, this is one the finest changes you could possibly make.

One of the greatest days of my life when I sat by my friend John Podesta’s side on a freezing day in Washington, in front of the Franklin Roosevelt monument (the real one where he was sitting down In a wheelchair) after Senator Kennedy’s and Jim Jeffords’ bipartisan bill, the “Work Incentives Improvement Act” was signed as the last piece of legislation the 20th century.

That "Ticket to Work" was a start to remove the barriers that forced millions of people with disabilities into idleness with the threat of losing their health care and in-home supportive services if they tried to work. We need to go further, because many of us are still on a very short leash and cannot escape poverty by only being permitted to earn $900 a month, or save because we cannot have more than $2,000 in our bank accounts. But it was a grand beginning.

There are still many rivers to cross for people with disabilities, but I firmly believe that the time is now to release seniors and people with disabilities who don't belong in skilled nursing facilities, from imprisonment and despair, and back to their rightful place in the American life with its promise of liberty and pursuit of happiness. Perhaps what we crave even more is the opportunity to contribute our gifts to this world and put meaning in to our lives.

We need to make it possible for every young person in every state to have the gift of in-home supportive services. It saves money, it saves lives, it creates jobs, and it unleashes vast stores of human enterprise among seniors and people with disabilities who still have work to do and people to love. Some may say this is too ambitious, but I believe that you, President-elect Obama will understand best of all, that this is a bold request born out of the "audacity of hope."

This is respectfully submitted on behalf of all of us who have been “wheeling on air” for the last two days!


Most Sincerely!

Nancy Becker Kennedy

PS Robert Kuttner, journalist, economist, and author of the book "Obama's Challenge: a Transformative Opportunity." was on NPR’s "Fresh Air" tonight. Kuttner has previously been a columnist for Business Week as well as the Chief Investigator of the US Senate Banking Committee. In the interview he talks about the expansion of jobs to fix the infrastructure and emphasizes expansion of service job like those of caregivers as a strategy to create jobs as FDR did to infuse the economy to end the Great Depression. I am including the link here. Click here: NPR Media Player

Nancy Becker Kennedy is a nationally recognized expert, who has been featured in and contributed to Ms. Magazine, The New York Times, The Washington Post, and The New Republic. She is also a contributing editor of the award winning national magazine, Spinal Network’s New Mobility. She has been seen on Sixty Minutes, Nightwatch with Charlie Rose, and A Closer Look with Faith Daniels. She is the first person to address the American Congress of Rehabilitation Medicine and edited the first consumer section of the Western Journal of Medicine. More here.

Photo shows a moment from I Had to Break My Neck to Get Herestarring Nancy Becker Kennedy, an actress, activist and comic. Adapted for the stage from Nancy's diaries, the one-woman show is told with humor, but deals with everything from self-image issues to quadriplegia and battling breast cancer.