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Dying at Home Should Be A Civil Right

26 Sep

A recent report by the Institute of Medicine titled “Dying in America” examines end of life care and highly criticizes how the system handles cases of dying individuals.  It calls for a complete overhaul of the country’s end of life care.   While we have known the consequences of longevity for over a century the system has failed to react and change the way we care for seniors in this country.

Over twenty years ago I was fighting the nursing home lobby here in Florida so that we could shift funding away from nursing homes to community care.  It was a nasty and long fight that many predicted I was going to lose.  The strong arm of the nursing home lobby and their contributions to political campaigns made it very difficult for me to convince legislators that it was not only fiscally responsible to keep aging individuals in their communities,  but the humane way to go.  We are still in the midst of this fight, despite the fact that most state Medicaid and Medicare budgets are bursting.  Still our representatives are hesitant to act.  There are still some states where the only option individuals have as to where they can die are a nursing home or hospital.  The cost savings to taxpayers of keeping an individual away from institutions have been amply proven.  Yet for most of our states, 70% of funding goes to nursing homes instead of community services.  The end result is not only an unnecessary expensive end of life care but the unnecessary suffering of human beings that would rather die at home.

The New York Times recently published the story of Joseph Andrey and the efforts his daughter went through to bring him home. Joseph Andrey died three weeks before turning 92 but not at home but in a hospital.  He was covered with deep pressure ulcers after being strapped to a bed in a nursing home.  His care costs millions of dollars leaving his daughter broken with guilty feelings of not having been able to fulfill his constant requests to die at home.    Today 48 times as many people are reaching age 85 than 10 years ago, triple the number who turn 65 and the likely course of death is long and unpredictable.  Yet our system has not been set to take account of this phenomenon.  We have frail, old people moving into the medical-industrial complex that is driven by profit margins and cost billions of dollars every year.

Dying at home is like sailing against the wind.  That was certainly Joseph’s daughter’s experience.  For years she tried to find care at home but to no avail.  Home care agencies kept dropping him because he was unprofitable to care for.  Hospice care was limited to six months. Reimbursement to these entities is often based on their needs and not the individuals.

While the system is changing slowly, it will take a major crisis and a lot of public outrage to change it to a way individuals like Joseph may have wished.

Another program to help you in helping your Mother

12 Nov

As promised, today I will discuss another program that is available to very low income individuals. The Medicaid Diversion program is available to very low income individuals who are eligible for supplementation to their social security check and to those with a small pension. This is a match funding program, meaning the federal government contributes some funds as well as the state. You have to be eligible financially as well as physically. Here are some of the requirements that must be met in order to be eligible.

Diversion – Long Term Care

(State and Federal Program)

Department of Elder Affairs 1-800-963-5337

Florida: www.elderaffairs.state.fl.us 1-850-414-2000

  • Must be 65 years old.
  • Must have a diagnosis of dementia plus need at least 3 out of 5 ADL’s (activities of daily living);
  • or require assistance with 4 ADL’s plus medication management;
  • or require assistance with 5 or more ADL’s.
  • Activities of daily living include: bathing, dressing grooming, ambulation and toileting.
  • State CARES unit will come to assess the client to see if they meet the program’s criteria.
  • Can also need IADL’s (Instrumental ADL’s which are: housekeeping, shopping, cooking, transportation.
  • A physician must complete a 3008 form for the State.
  • A physician must complete an 1823 form for admission to an ALF.
  • Must have income less than $2,130 for an individual, $4,260 for a couple. (These are 2013 limits)
  • Total asset limit is $2,000 for an individual or $3,000 for a couple.
  • Facilities are paid per contract; families are responsible for monthly room and board rate to the facility. Facilities may charge COLA increase annually according to a lease agreement.
  • Incontinency is a covered benefit.
  • medications are covered through Medicare Part D or the individual’s personal insurance.
  • PT (Physical Therapy), OT (Occupational Therapy), ST (Speech Therapy), Labs, Physician Visits, Hospital Coverage, Dental, Hearing and Vision will be covered if not otherwise covered by Medicare or personal HMO Insurance. Diversion will also cover any and all non-covered services, co-pays and deductibles.
  • The contracted Diversion company becomes the secondary insurance to Medicare.
  • Transportation is not a covered benefit. Medicaid should cover under Logistic Care.
  • There is a hospital bed hold up to 21 days. if the client is out more than 21 days the facility will not be paid and the family will be responsible for the difference.
  • Clients do not have to be on SSI or OSS to qualify for this program.
  • Client may NOT receive HOSPICE benefits while on a Medicaid Diversion program.

Next time I will speak about ACS – Assistive Care Services and VA (Veteran’s Affairs) Benefits.

Stay Tuned!

 

 

Replication – An uphill battle?

27 Jun

Replication becomes a moral imperative for social entrepreneurs. Once we find out that we are making a difference in our communities we have this undying desire to replicate our idea. Most, if not all, social issues are global, and a good solution can travel anywhere, with some caveats. We know through experience that global aging is posing challenges to all developed countries. In places like Japan & Italy the growing senior population comprises over 30% of the population. This aging wave affects may aspects of society: work, retirement and healthcare among others. So why not introduce our idea to them? While it makes common sense, for an idea to travel many factors must be in place. Capital, connection, understanding of regulations, the culture and language are critical if we are going to be successful. These were the issues we confronted when we tried to bring our program to Japan last year. While both parties agreed that it could be transplanted and we were both eager to do it, several obstacles had to be overcome.

Last year, through the Ashoka network, we discussed introducing our model to a very prominent woman that started a large nursing home business in Japan. She was interested in bringing about a less institutional model like ours. There were few if any regulations in Japan that would prevent implementing such a program, no competition exists and the government could reimburse for services through their healthcare/pension plans. However, for our program to work, we needed to overcome some major barriers like language and raising the capital to establish relationships in such a close knit culture. Overcoming the language problem (only 3% of Japanese converse in English) required the hiring of a full-time interpreter. We also needed to employ an agent so we would have a direct presence there. Trying to raise capital in Japan became difficult as there are today very few foreign investors. The initial investment proved to be too onerous for us.

Raising capital for our social ventures is an arduous job, absorbing a big chunk of our time. We knew that when we started and that was the main reason we decided to create a for profit company. We were also in a hurry and could not wait the time it takes to create a non-profit entity. Our first contract was the most difficult. Once you have created a successful and replicable model, it becomes easier to sell to others. There are no blueprints and no road maps with a new idea and a lot of non-believers. We took three steps, first: change individual behavior, second: create a successful program and third: change national policy so we can replicate with ease. We never wasted the opportunities that this global crisis offered us. From the onset we knew what we wanted to achieve and what outputs we needed to derive (number of people served, cost efficiencies, operating margins) and the impact we wanted to effect (change the way we care for low income seniors). From day one we established clear outcomes and collected data to measure progress. Performance management became our principle. When you provide data to mission driven people, the results are profound and these measurable results are essential if we are going to obtain capital needed to scale.

Connections and collaborations were a turning point to our small firm. We have never acted alone, but we realized that we needed to be connected to a larger network if we were going to make a difference. These connections are not easily made; it takes a lot of time and effort to achieve. Becoming an Ashoka Fellow in 2010 opened a multitude of doors and connections that have propelled our mission inside and outside the U.S. We formed a Board comprised of private investors and successful business owners that have guided our steps, re-engineered our firm and paved our way to the corporate world.

My years of working in government made it possible for our firm to change national policy. I understood how it works as well as their reluctance to deal with social issues. My approach in understanding regulations, culture and language has always been to understand before asking to be understood, respect and a sensible approach has served us well so far. We would have thrown out many babies with the bathwater if we were not able to work with the government as an ally.

Every single day for the past sixteen years I wake up in the morning and ask myself a simple question, if not now, when? 

The Journey Begins

25 Jun

On November 12, 1995, an event occurred that completely changed the course of my life. While serving as Florida Secretary for Aging Services I was summoned to a public housing building in Fort Lauderdale, Florida where a fire had killed 12 of the residents. For the first time I came face to face with the squalid and precarious conditions in which low-income seniors in this country subsist. The image of that day never left me and I made a promise to myself that I was going to make it better. Charged with this moral obligation and strength I was able to secure a deteriorating public housing building in downtown Miami with the promise of turning it around and creating something new. With my political ties in Tallahassee still fresh I secured $1.2 million to retrofit and license that building. In six months it was full with a long waiting list, had become the model for the nation and had won four national awards. Some may say it was luck, I believe it was stubbornness and commitment that made it happen. I had fulfilled my promise. To the 104 seniors living at Helen Sawyer this was the beginning of the best time of their lives. End of story. I never had the intention of doing this over and over in twenty-three states. But it was no longer up to me; the notoriety that this little program gained made it impossible for me to turn the page. And so it began, my journey in replicating this common sense approach to providing 24 hour services to low-income seniors where they live so they will never be forced into a nursing home.

There is no doubt that good publicity helps in creating an innovation, but that alone is not enough. I knew that innovation is almost always built on rejection. There were so many obstacles that had to be overcome. The worst was the mind set of policymakers and public officials reluctant to change the way we care for the poor elderly. They seem to have a spiritual blindside that prevents them from seeing the human side of the dilemma. If I was going to replicate this program in other counties and states, government funding was critical. My experience in government was important in understanding government, what moves them; how to obtain their collaboration. We needed to gather some ammunition to win them over. How about doing more with less? With the funds they spent for each individual forced into a nursing home, I was going to care for four. How about if we could prove to them that our care involved changing lifestyles and improving health? We started gathering data that proved that we were avoiding hospitalizations, emergency admissions, reducing the number of prescription drugs and 911 calls. That certainly caught their attention and in 2010 our little company was able to change national policy. Funding this type of program instead of nursing home care became a priority. The Community First Option program was started in collaboration with two large federal agencies: Health and Human Services and the U.S. Department of Housing. The program was initially funded with $46 million. Until now, they did not talk with each other, and now they were cooperating in making it possible for low-income seniors to live with dignity in the comfort of their homes. What a novel idea!

Now, I said, we can concentrate in avoiding other obstacles in scaling our program. What would it take to convince private investors to provide the capital to purchase distressed properties and hire us to provide the services to this exponentially growing and long neglected population? A good return on their investment perhaps? Although corporate America needs to be seen as having a social impact, what they are truly interested in is good returns. Conquering corporate America became a major goal for us. We never forgot, however, that our social mission had to be safeguarded.

Do I want to live forever?

30 Aug

I’m not alone when I say that I would like to live long enough to see my grandchildren become young adults, but only if I am in good health. There are many in my generation that feel the same way. Much has been written about the potential longevity of the baby boomer generation and the effects it will have on entitlement programs like social security and Medicare. However, recent studies present a different picture. According to a University of Illinois study baby boomers will not live longer than their parents have despite the healthcare improvements, new drugs and the long 20th century experience of ever-rising life expectations; the culprit – factors like elevated rates of obesity, cancer and suicide.

Another study by Rice University claims that it would be a mistake to project longevity gains of the last century throughout this one. Health status of the baby boom versus the preceding generation reveals that they are in worse shape. There is a higher propensity to suicide particularly for those in their 40’s, a time when those rates typically head down. And then there is the ‘Big C’. The post war generation has a higher rate of cancer at younger ages than the previous generation. Women of this generation are the heaviest smoking cohort in U.S. history and they are now suffering its effects.

Obesity among boomers is linked to rising disability and serious health problems like diabetes and heart disease. However, the true impact on longevity that obesity has cannot be seen until we get older. Socioeconomic factors will also significantly impact longevity. It is a well-known fact that rich people live longer than poor people do. We know that the gap between rich and poor keeps widening in this country and that the impoverishment of individuals keeps creeping up. The most at risk, of course, are Latinos and Blacks who swell the ranks of those living under the poverty level. They will see drastic declines in health status over the years.

The moral of the story is that in order to live longer we must have been blessed with good genes and the absence of major health problems, a socioeconomic position that allowed us to have access to preventive healthcare and live healthier lives, otherwise it makes no sense to live forever.