Dying at Home Should Be a Civil Right

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.​

Getting Too Much of a Good Thing

Stanford Business Center for Innovation recently published an article on how to avoid “Social Good Fatigue” and to be honest it rang a bell with me. While my work still motivates me more than anything else I do in my life, I still feel sometimes I must try something else.The article argues that social entrepreneurs live in a state of permanent emotional drain produced by dealing with people and problems all the time, selling hope and mobilizing others to create change. Creating change is never a straightforward event, we deal with complex issues requiring complex solutions. People prefer to stick with simple resolutions. The social entrepreneur is always dealing with urgent issues. In our case, we often deal with life and death issues, knowing that if we slow down some people are going to go without assistance that they often need to stay alive. This means that the rest of our lives get a back seat. My husband constantly argues that I do not have time for him or for the family. He is right. Because we concentrate so much on one issue, we often stop learning and growing, stop taking side roads, smelling flowers, enjoying the family, reading a good book. We are in a constant state of flux, that success often contains the seeds of failure. When I look at my journey, I see this so clearly, every success I have had has been followed by failure. I cannot forget that every single innovation has been met with failure to begin with. We get used to this, but it is consuming.The article spells out several remedies to this “burn-out” syndrome. Most of them I have followed during my 17 years of being a social entrepreneur. Particularly during the past four years I have made time to reach out to friends, particularly childhood friends. Our conversations have nothing in common and perhaps that is the beauty of it all. We talk about things of no consequence. I engage in a lot of physical activity. I get up at 4:00 a.m., do a half hour of yoga, and then put my scull on the water and row for two hours. I have been doing this for 10 years, and I find that rowing in the dark allows me to meditate, calm my mind, and re-arrange things. I hope I am never forced to give this up. I am also planning my trip to Nepal, something I have been trying to do for many years. I know that if I wait longer, I may not be able to physically do it. Whatever I want to do, I do today.I have told my daughter that I would like to retire in two years because I have a new idea that I want to develop before I leave this world. It is when you let go of things that you are truly creative and it is in this process of creation that I feel best. After all, like the article says, “You never conquer the mountain, you can only conquer yourself.”​

 Old Folks can be Distruptive as Well!​

Driving back from my daily rowing this morning I listened to an NPR report about how the age of the CEO of a company can affect the future of the organization. The argument is that, according to a recent study, the older the CEO the less likely he or she is to make drastic decisions and try something new. According to the report, older CEOs become intimately involved with the organization and maintain the status quo rather than risking the future of the organization. Young entrepreneurs, on the other hand, have more of an innovative spirit and turn around operations that may have become stale. The report does caution that this assumption may not work with all organizations. That the more stable and profitable the organization the less the need for the innovative spirit.My first reaction to the NPR report was that the assumption that older CEOs cannot be innovative does not fit me or the other 9 million older social innovators in the U.S. The main characteristics of these older innovators are what I call the three “D’s”. We are disruptive, disciplined and driven. That is certainly my case and the reason why I am no longer in the public sector. While it is true that it may take us longer to arrive at a final decision, once we do it is usually the right one as we have considered all implications and outcomes. As another of my fellow older entrepreneurs once said “You are old enough to see that something is not working and experienced enough to do something about it”.I hope most of those listening to the NPR report have the common sense to conclude that just because research was conducted it does not necessarily mean that we must take the findings as conclusive. Much is left out of these “so called” definitive reports. In this case the 9 million and the additional 30 more million older entrepreneurs that have proven to be even more disruptive than our younger counterparts!​

Making the Right Decision

When the time comes to move to an assisted living facility there are some questions you must ask. It is a difficult, traumatic and long term decision. You have to make sure that the move is pleasant and right. Below are a set of guidelines/questions that can help in making your decision.Is the residence licensed? Is it a good location to family/doctors? Is the entire facility wheel chair accessible? Is the décor attractive and home-like? Is there good natural and artificial lighting?do the residents socialize with each other? Do they appear happy and comfortable? Is the facility clean and odor-free?does the facility assist with self-administration of medications? What is their policy on medication storage? Do physicians visit patients on the premises?Is there 24-hour help available? Is the staff friendly & properly dressed? Does the staff know the residents by name?Are units private or shared? What safety features do they have in each apartment? Can residents bring their own furnishings? Is there a kitchen area in the unit?Is there an activities program? Is there a wheelchair-accessible van for transportation? Do residents have access to computers and the internet?Do they provide three meals daily? Do they provide snacks too? Are there set meal times? Are there special diets available?Are the rates all-inclusive or do you have to pay more for higher levels of care? Do they accept the Medicaid Waiver/Diversion programs? If so, is the family/resident expected to contribute financially to help cover the cost of care?Asking the right questions will help ensure that the decision made is the right one. ​

The Final Installment

Today I am going to wrap up our discussion by speaking about two additional programs that are available to help low-income seniors: Assistive Care Services and VA Aid and Attendance.Despite the number of low-income seniors needing long term care subsidies to remain at home, except for Mississippi, Florida has one of the lowest reimbursement rates for services. In order to entice private providers to accept clients into their assisted living facilities, the state decided to create the Assistive Care Service (ACS) funding program. This program is a matching fund. By taking some state funds and requesting the federal government to match it, the state was able to provide $9.28 per resident per day to help pay for services. Separate from the Medicaid program, Veterans are eligible to have services paid through the Aid and Attendance program. Unlike the Medicaid waiver program, this is an entitlement program, meaning if you are eligible, you receive it, no waiting lists. However, the time it takes for the VA to approve applications can be long, on average 6 months. Following are the requirements to apply for both the ACS and the VA Aid and Attendance programs.ACS-Assistive Care Services (State Program)Call DCF (Department of Children and Families)1-866-762-2237 Must be 65 years or older, or 18 years of age and blind or disabled.Must be a U.S. Citizen or qualified non-citizen.Must be a resident of Florida.Must have a social security number or have filed for one.Physician must complete the 1823 for the client to be admitted to the ALF.Client must be in an ALF.Total asset limit is $2,000 for an individual or $3,000 for a couple.The client will receive $9.28 per day to help offset the cost of living in an ALF. The program will not pay for any day the client is not at the ALF, i.e. days in the hospital or on vacation.If applying for ACS, the client can NOT be on the Medicaid Diversion program. VA Benefits – Veterans Aid and AttendanceCall the Department of Elderly and Veterans ServicesBroward County: 954-357-6622Must be eligible (served over a 90 day period, some of that time must be during wartime).Any age may apply. The program takes 3 – 6 months to process; residents are responsible for the full rent until approved.Program will pay retro-active from the date the application was submitted.Must meet the medical criteria. Must meet the financial requirements.Needs to be in an Assisted Living Facility to apply:Veterans are eligible for up to, approximately, $1,703/month (2013 rate)Widows are eligible for up to, approximately, $1,095/month (2013 rate)Married couples are eligible for up to, approximately, $2,020/month (2013 rate) Cannot exceed $80,000 in assets, not including a home.Residents can apply for Medicaid Diversion and VA benefits. If qualifications for both programs are met, may receive both benefits.I hope that I have helped to inform you of some of the programs and options that exist to help you care for your aging, low-income parents.


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