Disability Issues, Spring 2023 Vol.43 No. 2 By Sandy Alissa Novak
I recently had the privilege of interviewing Arlene Germain, co-founder of Dignity Alliance Massachusetts. The following interview has been edited to fit in Disability Issues.
Sandy Novack: Arlene, please tell us your first introduction to concerns about disability and aging.
Arlene Germain: I always had an affinity for older folks, mostly because of my relationship with my grandmother. When I was about 8 years old, my grandmother moved in with my parents and me after my grandfather died, and I shared a bedroom with her for several years. Sadly, my grandmother developed dementia, but we continued to have a close relationship, even when she eventually withdrew. Both my parents had strokes later in their lives. My mother’s stroke destroyed her short-term memory, so she could not be left alone. My father took care of her for years until he died suddenly. I was able to keep my mother in her home with caregivers for a few years, but eventually I moved her to a nearby non-profit nursing home. I visited her several times a week, mostly late at night since I often worked overtime, plus my mother and I were always night owls. What I witnessed during late night visits and when I stayed overnight when my mother was dying was an eye opener.
Over the past 20 years, seven of my family and friends have lived in nursing homes. Sadly, I have witnessed poor care and many injustices, not only to my loved ones, but to other nursing home residents. My loved ones suffered dehydration, malnutrition, over-drugging, aggression by another resident not addressed by the facility, intimidation by staff, bed sores, and many unnoticed health needs. They suffered inadequate care despite the efforts of many dedicated certified nursing assistants (CNAs). No matter how hard the CNAs tried to provide good care it was impossible because they were constantly under-staffed. Witnessing the suffering and injustices my loved ones endured, and so many more residents still endure, is the reason behind my advocacy work. Advocacy is not easy. It is emotional, requires strength, and it takes years. But there are a lot of people behind you, so never give up!
SN: Can you tell our readers more about your advocacy work and how you got started?
AG: Because I saw many injustices, I called AARP to ask who was advocating for nursing home residents. They put me in touch with the National Consumer Voice for Quality Long-Term Care in D.C. I attended their annual conference and learned about Family and Resident Councils, which advocate for residents nursing homes. I started a family council at my mother’s nursing home. Over the years, I served several terms on the Consumer Voice Board. In 2000, Greater Boston Legal Services attorney, Kathy Fitzgerald, was visiting family councils around the state to educate them about a bill to increase CNA wages. She noticed that the councils didn’t know about one another, so it was her idea to link them up which was the beginning of the Massachusetts Advocates for Nursing Home Reform (MANHR). Kathy and her supervisor, Attorney Wynn Gerhard, ran MANHR and I was one of several co-founders. MANHR’s goal was to advocate for improvements in the care, dignity, and quality of life for Massachusetts nursing home residents, including supporting family-run councils. In those early years, we assisted nearly 30 family councils. MANHR’s first initiative was supporting family council legislation. In 2004, Massachusetts became the third state in the country to enact family council law (MA General Law Chapter 111 Section 72Z, Circular Letter).
When Kathy moved out of state in 2004, I assumed a leadership position for the duration of MANHR’s existence. MANHR achieved 501C-3 non-profit status in 2006 and was an all-volunteer organization until MANHR received a grant in its last two years of operation to hire an Executive Director, Alison Weingartner. For more than 20 years, MANHR represented Massachusetts nursing home residents and families as the only long-term care consumer advocacy organization in the Commonwealth. MANHR had a seat on nearly 20 statewide coalitions/committees and was sought after by local, national, and international media for advocacy comments.
In 2022, as part of my legacy before retiring, MANHR merged with Dignity Alliance Massachusetts as an educational branch. MANHR’s website continues to be available as a resource.
SN: Arlene, can you say more about what Dignity Alliance focused on when the organization was first formed and what your roles were? (Full disclosure, I am a member of Dignity Alliance Massachusetts.)
AG: Dignity Alliance’s first initiative involved protecting nursing home residents from being forcibly moved to other facilities to make room for COVID patients who were being moved out of overcrowded hospitals. To stop this unjust practice and find another solution to hospital overcrowding, Dignity Alliance wrote letters to Governor Baker and other officials, and published a letter to the editor in the Boston Globe.
We were successful and other venues were found to care for COVID hospital patients. Throughout the pandemic and as its ongoing mission, Dignity Alliance strives to help elders and people with disabilities in the community and in long-term care facilities. I am a co-founder of Dignity Alliance, a Board member, and Coordinating Committee member. I also lead the Nursing Home Facilities Work Group, which addresses nursing home issues. I have to say it is hard to retire. I want to support Dignity Alliance through some of the current legislative issues. We are at an important juncture with nursing home finances. Advocates have been working for decades to increase transparency on how nursing homes spend the billions of Medicare and Medicaid dollars, and now real progress is possible with potential national and state transparency ownership requirements.
SN: Has your attitude about aging and disability changed as you contemplate retiring?
AG: All my life I have valued relationships. Life is precious and it is important to live the way one wants to. Aging definitely gives us a wider perspective on life.
SN: When you look back at your life, can you tell our readers what being devoted to advocacy for elders and people with disabilities has meant to you?
AG: I have cared for many relatives and friends in nursing homes. I feel that my efforts honor them and, hopefully, have made an impact to enhance the lives of all nursing home residents. I feel good about turning over a body of advocacy work to Dignity Alliance to strengthen their efforts. Advocacy is definitely a journey, and I am glad MANHR’s journey continues through Dignity Alliance.
SN: What advice do you have for elders, younger people with disabilities, their families, friends, and caregivers going forward? What words of mission, hope, and inspiration do you want to pass on to our readers?
AG: Advocacy is not easy. It is emotional, requires strength, and it takes years. But there are a lot of people behind you, so never give up! My partner, Ellery Schempp, is a physicist and an advocate. He started advocating when he was 16. He lived in Pennsylvania and protested mandated Bible reading in public schools, because he thought it wasn’t right that his classmates and friends of different religions were forced to read one Bible chosen by the state. His protest turned into a 1963 landmark Supreme Court decision responsible for eradicating Bible reading in public schools. We are both advocates, and we understand about standing up for what matters.