We asked our readers three questions about the notion of dignity and their involvement with Dignity Alliance.
What does “dignity” mean to me?
Jerry Halberstadt, Stop Bullying Coalition:
Treating all humans with respect and decency
Dignity is the ability to make your own choices and determine the course of your own life. Achieving dignity requires having the necessary supports to make those choices real.
Colin Killick, Disability Policy Consortium:
Dignity is the ability to make your own choices and determine the course of your own life. Achieving dignity requires having the necessary supports to make those choices real.
Why the advocacy promoted by Dignity Alliance Massachusetts is important to transform long-term care in facilities and in the community.
Sandy Alissa Novack, MBA, MSW, LICSW, ACSW, CSW-G
My name is Sandy Alissa Novack, and I have been a contributor to Dignity Digest since the first issue. I grew up in a family of readers with relatives who regularly kept up-to-date with the news and liked sharing information. My mom used to draw me pictures and also clip interesting scenes from magazines or stories and put them in my Peanuts lunchbox along with my packed lunch as a child, and in college my parents would mail me all kinds of interesting articles they had read they either thought would be useful for me, make me chuckle, or be inspirational. I grew up liking to do the same thing for others; in Dignity Alliance’s case, sharing articles of importance on aging and disability, long-term care, and community living, and of course the pandemic. I draw on the practical, inspirational and the items that tug at the heart. One of my “finds” you may have already listened to, but I feel it has more depth the more I listen to it; it is country singer Brett Eldredge’s song called Raymond, about a man working in a long-term care facility where an elder with dementia mistakes him for her son, and he gladly takes it upon himself to fill in as lovingly as if he were her son. At the intersection of aging, disability, military service, family and caregiving, the song moves me every time I listen to it (https://tinyurl.com/RaymondByBrettEldridge).
By the way, everyone is invited to share articles, webinar registration information, and more for the weekly Dignity Digest. If something interests you, you can bet it may interest many of the hundreds of other readers of the Dignity Digest, so send it along to us to consider, as space allows, for publication to paul.lanzikos@gmail.com.
Margaret Morganroth Gullette, Ph.D. The writer is the author of Ending Ageism, or How Not to Shoot Old People:
Since March 2020, I have been writing a book titled American Eldercide, about the tragic and unnecessary deaths in the nursing homes. The “Eldercide” came about because of the abandonment of the 1.4 million residents (as of 2019) living in the 15,400 facilities, a failure of the federal government under Trump but also of state governments that had never taken seriously their part of the responsibility to provide safety, health, and dignity to some of the most vulnerable older adults in the nation. All too many died, and they deserve a monument that signals our regret for the losses. Many survived: in 437 facilities, no one died in 2020. The 150,000+ could have been protected. Others of us in the general population will need to join the survivors or will want similar services that can be provided best in their local communities. No one could doubt in the COVID Era that reforms are needed. . The stories of malfeasance and ageist ableism I discovered and reveal in this book might well have led me to despair of reform. And then I watched in horror as a federal government under a new administration proposed a valuable and targeted package of reforms that then was stymied by people in Congress who also, again, did not care enough. And then I discovered Dignity Alliance MA, dedicated advocates from all walks of life, who collectively know more about conditions and causes and needed improvements than any group in the Commonwealth. They have been tireless and efficient in the two years of the operation. They have wisely and gently guided the legislators on Beacon Hill–some of them also concerned and knowledgeable–toward ameliorating the causes of suffering and improving life for those, most of them in later life, who find themselves in the “care” of bureaucracies. By the time the 100th issue of Dignity Digest is published, the Legislature may or may not have proved itself worthy of this sacred trust.
Jerry Halberstadt, Stop Bullying Coalition:
The Commonwealth fails to adequately fund the services and to oversee and hold caregivers accountable, and no one else is trying to do what DAM is doing. Terrible things happen to vulnerable people and I applaud the efforts of DAM to advocate for remedies.
Colin Killick, Disability Policy Consortium:
Nursing homes as traditionally constituted deprive people of both dignity and safety based on disability and age. They are the largest remaining vestige of the system of institutionalization that used to segregate people with disabilities away from the rest of society and deprive them of agency. DAM’s work represents major progress in moving away from that archaic model.
Judi Fonsh MSW
I had the pleasure of having members of Dignity Alliance support me ( a retired Director of Social Work at the facility)and several others who were very concerned, in trying to prevent the closure of Farren Care Center. Farren, a non profit nursing home where the specialty care was for those who suffered from a persistent mental illness as well as medical illness and ADL needs or neurological issues and were rejected by at least 5 other nursing homes due to their care needs. The mission of caring was truly the focus at Farren. Many Alliance members met weekly and sometimes twice a week as we worked to at least prevent tragedies from occurring during the transfer. The plan that unfortunately came to fruition was that a for profit nursing home company took over the care and in the process many things changed and sadly the transition led to many residents dying. I was so impressed with the knowledge and skills the members of Dignity brought to the work!!
Jim Wessler, Alzheimer’s Association, Massachusetts/New Hampshire Chapter
I wanted to thank you and the Dignity Alliance for your support of the successful budget amendment that provided initial funding for expansion of our Dementia Care Coordination (DCC) program. This will enable us to expand access to this successful program that links family caregivers to immediate support, via their health care providers. You have been an important partner and we do appreciate it.
This is my vision for the future of services, support, and care for older adults and persons with disabilities.
Sandy Alissa Novack, MBA, MSW, LICSW, ACSW, CSW-G
This is part of my vision for the future of services, support and care for older adults and people with disabilities:
In many cases, it will begin when a person needs hospital care for an acute situation. Instead of the too-automatic thought that a person needs to be discharged to a short-term rehabilitation unit or even immediately discharged from the hospital to a long-term care facility, discharge planners will first try to discharge patients back to their house, apartment, or other community-based setting. This includes the chronically homeless or acutely homeless; they may not have a home to return to, but hospitals will learn to work with community agencies to get these folks housed when they are discharged, too, so they don’t unnecessarily get discharged to long-term care.
Because many may need supportive services to be discharged home, I envision a more robust homecare and home health care network in Massachusetts, where many more types of care are funded to provide companionship if needed to settle back into one’s routine at home post-surgery, post-pneumonia, post-anything, and one’s own doctors come to check on you because our new, lifelong, guaranteed health insurance for every citizen in the country sees the value in the home visits, like doctors used to do decades ago, to continue those relationships with providers who know you best. Respite care will be more generous in coverage, so that family caregivers do not risk losing their own careers, income, and health, trying to take care of their loved one morning, noon and night.
Solo agers will be able to have their chosen family of friends get paid for providing them with needed help, and solo agers will not be left to age all alone nor be socially isolated. Indeed, ample houses will be available for chosen families to even live in a single-family home with the solo ager, to provide the loving family environment that allows the best in everyone to shine, and so most people with disabilities will not need to move, all alone, into a facility.
Houses for the future, for anyone, will come with ramps into the house if it is an older building, or new construction regulations will require flat entrances, so no one need move out of a house into a facility due to decrease in mobility or other health issues. Older houses and apartment buildings will be required to add in elevators if they don’t already have elevators that allow residents with the larger and heavier assistive devices to get in and out of them with ease. Bathrooms and kitchens will be universally designed as well, throughout the state and at all price points, to account for the fact that we all need support at some points in our lives, whether we break a leg on a ski slope and have a temporary disability, or we have a permanent disability but want to keep cooking our favorite dishes or just enter to smell the food others are cooking in the kitchen.
Those citizens who, due to lung, or other health care issues, would do well to live by the ocean/waterways to be away from pollution, allergens, smoke and the like, will be given first priority for housing near the ocean/waterways, housing that will cost the same for them near the ocean as it would any place else in the state.
No smoking, including tobacco, cigarettes, pipes, vaping, or otherwise will be allowed in housing arrangements of any kind, or within two miles of any housing or facilities, to protect the health of everyone, child, or adult, including the smoker, but especially children, elders, and people with disabilities.
There will be no haggling with insurance that your wheelchair needs repair or replacement. If your doctor orders you need a repair or replacement, insurance must pay for what you need. Same thing for walkers, scooters, and other medical supplies. Similarly, if you need a medicine, you will be able to have the medicine ordered by your doctor, and the pharmacy gets re-imbursed by a state-level pharmacy bureau–no more studying each and every year which Part D Medicare prescription program you should sign up for.
Because one’s hearing, eyesight, and teeth are essential to one’s health, my envisioned guaranteed lifelong health care coverage for every citizen will cover these too long neglected aspects of our health.
Long-term care insurance will no longer be only for those who can pay the hefty yearly premiums. Long-term care coverage will be part of your guaranteed pre-pregnancy to grave health coverage, for every human being to be treated equitably and with dignity, at every stage of life, and with no family going into financial debt due to medical debt. Long-term care insurance will be used in the community as well as in long-term care facilities if you cannot remain living in the community.
Starting someday soon, personal care assistants and certified nursing assistants should be paid double the yearly salary they make now, so they will not have to hold down multiple jobs to feed, house, and otherwise support themselves and family. They will get full benefits, such as sick days and vacation time. The money that will fund these essential workers (as they were certainly shown to be essential during the pandemic) is based on the reality that caregivers who make a difference for the lives they care for should get paid for that life-giving, quality of life they make possible, and could come from a similar reality check in the sports, casino, and liquor arenas, where, for example, people who do not contribute essential services as defined in the pandemic and do not contribute to anyone’s life other than recreationally, have gotten paid more than essential workers. I think the pandemic has shown us where essential workers are and they are not in baseball games. We should use our experience during the pandemic to re-calibrate the salaries of all kinds of jobs, making sure that those who lead the way in the care of loved ones get paid well and what they are worth, which should be way more than what someone, admittedly an athlete, but still someone who does not perform essential services, earns.
At the end of life, no birth family nor chosen family needs to be shamed that they have no funds to bury a loved one. For the dignity of everyone, there will be no more paupers’ graves, unless perhaps due to war or other disasters the identity of bodies is not possible. Otherwise, as part of the pre-pregnancy to grave health care coverage and prioritizing human dignity, everyone is entitled to a basic funeral service, a basic casket fitting your religious or secular beliefs, and a marker or gravestone. As the news kept showing us at the beginning of the pandemic, morgues were overflowing with the deceased, and many countries were digging mass graves. From such moments, our sense of what is dignity only grows, and we must keep honoring our loved ones and giving them the dignity they deserve, every chance we can at every stage of life, and that includes the end of life.
Jerry Halberstadt, Stop Bullying Coalition:
We will enable everyone to live in peace, security, and safety and to their full potential.
I would like to add:
Jerry Halberstadt, Stop Bullying Coalition:
I have great respect for all who participate in the work of DAM. While the current mission of DAM is focused on institutional settings and moving people into the community and/or keeping them in the community, many of the same issues apply to elderly and disabled persons living in public and subsidized housing, and even to market rate and condominium apartments. There are huge gaps in our legal and administrative systems so that oversight and access to justice are not available. So, either DAM expands our scope, or a new organization needs to be created. Getting relief through legislation is not easy, we have tried for a decade.