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.
In the beginning we felt a moral obligation to change the way we care for those less fortunate in our society, the poor elderly and disabled. We soon realized that by changing living conditions, we were improving the health of those individuals, cutting healthcare costs, reducing Medicaid spending, creating new jobs and economic activity, revitalizing neighborhoods and increasing the affordable housing stock. This was the argument we used in convincing government to invest in our project.
Global aging is a historical phenomenon impacting all segments of our society, work, retirement, entitlement programs and healthcare among others. The demographic tsunami of the baby boomer generation will only compound this crisis. Tackling the challenges of global aging must be a priority of all countries. We need to keep seniors healthier, away from institutions, working and engaged because our society drives when everyone in it does. Yet we continue to segregate the elderly, not to be seen or heard. We know so little about them, no wonder our younger generation does not see them as role models.
However, it is going to be hard to continue to ignore seniors in this country. Those of us who belong to the “boomer generation” will be demanding changes. After all we are known for our activism, a trait that has not diminished as we age. We have not given up on changing the world, we are more adamant than ever that we can.
I am alarmed to hear of the number of Alzheimer’s clients that are projected in the next decade and thereafter. Even more alarmed when I see the complete disregard our current long term care system has for those afflicted with the disease. It is almost like we want to keep this as a secret, which does not help very much when advocating for change.
In 1995 the State of Florida was putting together the assisted living waiver and establishing who would have priority for this new funding. My thought immediately was – those who are suffering with Alzheimer’s in the hope that it would incentivize assisted living providers to take care of them. The provision was added to the waiver eligibility requirements but it did not move those private providers to open their doors. One of their reasons was that it costs more to care for an Alzheimer’s client as they require more staff to avoid elopement. Florida is one of a dozen states that pays a fixed rate for the care of an individual in an assisted living facility no matter how much service they require. This leads to a lot of what we call “cherry picking” and who in their right mind will pick the Alzheimer’s clients.
But cost is not the only reason. In a study conducted in 1996 it was found that half of the states had admission and discharge criteria that prevented the admission and retention of people with cognitive impairments (Alzheimer’s). Later studies continued to reveal a reluctance of assisted living providers to admit/retain residents with the type of behavioral symptoms brought about by the disease. The Alzheimer’s Association supports the ability of residents to age in place, however, the fact remains that the few that do offer dementia specific units to Alzheimer’s clients do so at the detriment of the residents. There are cases of residents being neglected and ostracized and care needs are very high. This is a reason why most of the nursing home residents are in fact Alzheimer’s clients; individuals who do not need medical attention but basic supervision. However, they end up there because no one else would take them. According to a 2006 study, over 40% of discharges from assisted living facilities to nursing homes were because of cognitive impairments.
How dementia friendly are those brave assisted living facilities that cater to Alzheimer’s clients? Universally all dementia units use methods of exit control and clients are served in separate areas of the buildings – not to be seen or heard. At the first facility we opened here in Miami we welcomed Alzheimer’s clients and half of the population was in fact afflicted with the disease. Morally opposed to any type of segregation, our dementia clients were interspersed through the eight (8) floor facility. They ate their meals with everyone else and partook of the activities with the rest of the community. There were complaints from those who were able and fit, particularly during dinner hours. But, the complaints did not persist when they were asked if they too would like to be locked up if ever afflicted with the disease. After one year of this experiment, Florida International University performed an evaluation of our program and found, to everyone’s surprise, that our clients’ cognitive health had drastically improved because they were allowed to be part of the entire community. What a novel idea!
I am a 67-year-old woman and always found it incongruent how I was supposed to feel at this stage of my life. I only realize that I am this age when I look at myself in the mirror; otherwise I feel exactly the same as I did when I was twenty years younger. Labels like: my brain doesn’t work well anymore, I don’t enjoy sex as much, my social life is down the toilet, unhappiness is the way of life or there is no way I can learn anything new, somehow do not fit me.
I am relieved to find that some of the most prominent researchers in the U.S. have once and for all shattered those stereotypes. The research conducted among a significantly large sample group found that there is a gap between chronological age and “felt” age. Senior moments, increasing isolation, inability to grow and change are largely proven to be wrong according to the results. Scientific America’s research found that a large percentage of seniors 75 years and older enjoyed sex and were sexually active. Respondents of a survey conducted by the Journal of economics reported being the happiest they have been all their lives. Level of happiness seems to dip around age 40 years and then goes up. An empty nest does not contribute to unhappiness, just the opposite. Respondents to a New York Times survey reported that now they had more time to work on their relationship and uninterrupted time contributed to their quality of life.
Seniors are better at sizing up people and understanding how relationships work and are more socially active. But the most important finding came out of research conducted by the American Psychological Association that dismissed the myth that our brain stops working after a certain age. A process called neuroplasticity, that basically changes the structure and function of the brain in response to experience, is responsible for a higher ability to handle verbal and math problems and the improvement in spatial and abstract reasoning. It may take us longer to solve a problem but the final product is so much better.
I remember arriving in Palo Alto, back in 2006, to receive the first Purpose Prize award. This award is given to individuals over the age of 60 that have made lasting and important contributions in resolving a critical social problem. In the room were over 200 individuals, average age 70 years, whose innovative power had revolutionized the way foster care works, adoption systems in China, drastically reduced carbon footprint by changing the design of buildings and so much more. My first reaction was that we must show the world that how they think about us is all wrong and we must work to remove the disconnect that exists between young and old. The conclusions made in these research reports will go a long way in achieving this. At last.
This has been our battle cry for over twenty years. The benefits of keeping seniors at home with needed services has proven to be cost-effective, beneficial to the health of these clients and responsive to seniors’ desires. And yet, change has come slowly particularly in southern states. Under the pressure of skyrocketing Medicaid budgets fueled by the increasing numbers of low-income seniors our policymakers have had to shift toward funding more community instead of institutional care (nursing homes), what is called in the industry: “rebalancing long-term care.”
One state that has been successful in doing so is Oregon that rebalanced their budget back in the early 1980’s. Many other states have followed, including Washington and Colorado. The number of people receiving Medicaid-funded nursing facility care in these states grew at a much slower rate than in the rest of the nation from the inception of Medicaid home and community-based waiver programs in the early 19080s to 1994. The number of people in nursing homes as a proportion of the population age 75 and above in these states decreased faster than the average for the rest of the nation. Total annual Medicaid spending on nursing facilities also increased at a slower rate in the study states than nationally after controlling for growth of the age 75-and-older population.
Today only a handful of states remain committed to forcing seniors into nursing homes when no longer able to live independently – Kentucky, Virginia, Alabama and West Virginia do not pay for assisted living services. Although an increasing number of states have created Medicaid waivers to pay for assisted living services, the funding always falls short of the need which creates long waiting lists. clients in need of assisted living services cannot wait the two or three years it takes to receive an allocation. So seniors and disabled adults are still forced into nursing homes and we continue to pay for poor quality and undesirable care.
In 2003 our firm started the conversation with the Department of Housing and Urban Development urging them to join forces with the Department of Health and Human Services (federal Medicaid program) to properly fund community care at least for those living in public/subsidized housing. Seven years later, it happened and both departments partnered to create the Community Living Initiative that funds housing and services for low-income disabled adults. Seniors, however, have to wait longer and as of today no initiatives have been taken to address the issues of the seniors.
Apparently financial crisis alone will not prompt the federal government to act. I firmly believe the issue of low-income seniors ending up in nursing homes prematurely must arouse public opinion. Those most affected, the seniors, the families, the advocates, need to demand this change. Rather than being remembered as the “silent minority” we must be remembered as the generation that changed the way we care for seniors in this country.