by Harriet Cooper
Our family story is about us, as a blended family, with a diversity of personal and professional experiences across the spectrum of disabilities: We are parents, step-parents, grandparents and caregivers of aging parents; also, mental health professionals and educators who were once colleagues. We raised five children to adulthood, two with unrelated intellectual disabilities, and have a grandchild, now age 19, who is on the autism spectrum. One of our children gave us a window into the world of NIH and international medical research. She had a rare genetic disorder and sadly died at age 49. My brother, never diagnosed, and bullied by teachers and peers in the New York public school system, before the time of services, moved here to live with us at age 25. Richard grew up with an adult uncle, who once released from the Lapeer State Home, struggled with the trauma of post institutionalization for the rest of his life.
Our Personal Lives in a Nutshell: Divorce, Remarriage, Relocation,
My first husband William Rosenberg (Bill) and I, were New York transplants to Detroit in the early 1960s, courtesy of the Honigman, Miller, Schwartz, and Cohn Law firm. We eventually moved to Lansing when he went to work for Governor Milliken as head of the Michigan State Housing Development Authority (MSHDA). He then went on to Washington DC to work for then President George Herbert Bush, where he became a stage setter in the Environmental Protection Agency, as one of the authors of the Clean Air Act. When we divorced and remarried, we stayed true to our firm promise to remain close friends and work together on behalf of our respective families.
Richard Cooper and I were colleagues in the Mental Health field for many years and throughout this story. After working separately and together in the field for some time, life happened, and we eventually married. His leadership role as CEO of the Tri County Community Mental Health Board in Lansing and then Oakland County is evident throughout this story, as is the impact of his work as a change agent. The positive relationship between Bill and me has been and still is the gift that keeps giving, as Richard and Bill worked together from their respective positions of influence to affect needed change on behalf of those with intellectual disabilities.
Themes Our Story, which spans fifty some years, fits well with the title of this newsletter. It’s about Caring, Connections, Community, Courage, Collaboration, Core Services, Colleagues from all disciplines, Creating new opportunities, Colorful possibilities and Collective energies, talents, and skills. It includes people of all ages, professions and walks of life. The story starts, stops and starts again, flows like a river over mountains and valleys, at times with the heaviness of backpacks too heavy to carry, with hiking boots that don’t fit, or, with fireworks blazing; and then sometimes, it’s smooth sailing down the river where the pictures come together perfectly. Events are either crystal clear or as elusive as the clouds, and walking backwards is an excellent way of remembering when we were inspired, how much we struggled, learned, fought, celebrated and changed for the better, with reminders of how little we still know and how much more there is to do.
I hope our story will highlight how grateful we are for the services we have and the milestones reached on behalf of our own and others, and how one moment, one act of kindness, and one person can make a difference. There is no doubt that collective advocacy, powered by grit, determination and thinking outside the box, is responsible for much of our success, no matter what the issue, time or place. We also want to shed some light on how much there is yet to do, and why it is so important that the work continue collectively as professionals, families, lay volunteers and community.
It helped that life events often drove us to become “experts” in uncharted waters. Caring for aging parents led to my license as a nursing home administrator; then to the development of hospice programs in Michigan, the field of rehabilitation; innovation for ventilator dependent patients and a position as the head of physical medicine at the University of Michigan Medical Center, giving me a window into hospital administration. Classroom teaching for Richard and me led to school administration for me, vocational rehabilitation administration for Richard and his MBA. Between us we worked in executive positions with government, nonprofits and the private sector. In retirement, Richard, who had been a corpsman in the Navy, returned to his love of medicine and became a paramedic, quite an achievement for a retiree. He not only worked the ambulance for a few years, but as consultants we helped to develop the Burnstein Community Health Clinic in Pontiac, now the largest free medical clinic in Michigan. It provides services to uninsured individuals, including many who are homeless. In the process, we became writers, researchers, innovators, community organizers, political activists and advocates for those who were vulnerable across a broad spectrum. During our journey, regardless of position time or place, we often found ourselves smack in the center of the “hot zone” of community action and change.
Our story is extraordinary: Events from over the past 50+ years have aligned themselves around the mental health issues and challenges of the current day and our personal lives. At the time, it seemed that events just happened when they did…. looking back, there was a pattern sustained by deep love of family, our vulnerable family members, others with similar challenges, acts of kindness, gratitude for progress, even if not always satisfied, relationships, the determination to “get it right” at all levels and at all costs, to never give up, to always champion the weak, to always reach for higher ground, to think outside the box”, all of which was so often rebuffed, and unwelcomed or turned down.
Our story is also ordinary and the story of every family: We faced the same struggles, cried the same tears, faced and fought the same frustrations, disillusionment, disappointments and heartache… of being, undervalued or, ignored…; when a teacher or group home staff or the system was unresponsive or discounted us because we were “just the parent or sibling”; or they were threatened by what we knew and refused to give us the time of day; or because someone in charge was too busy to listen to our most burning issue; or we saw someone’s rights violated and worried about the apparent lack of meaningful recourse when the protection system was unclear or unresponsive; and then there were those times when the provider was not held accountable by their bosses from within or regulators from the outside… We are all in this together.
When it all began… 1960’s and 1970’s
Harriet Moves to Michigan with husband William Rosenberg (Bill)
New York transplants, Bill and I moved to Detroit in 1960’s where he joined the prominent law firm of Honigman, Miller, Schwartz, and Cohn. I liked Detroit immediately, rare for a New Yorker, I am told, and taught French at Kingswood/Cranbrook, after having studied at the Sorbonne in Paris. Colleges wouldn’t hire me because at age 21, “I looked too young.” No one paid much attention to age discrimination back then.
I was in perfect health, played a mean game of tennis well into my ninth month of pregnancy and then our first child was born with Down Syndrome. Despite having grown up with a brother who had undiagnosed intellectual disabilities, for whom I had advocated all my life, I knew nothing about Down Syndrome. I will never forget the young nurse with flaming red hair, some 50+ years ago who showed me pictures bedside of her adorable three-year-old with down syndrome in a school play group. That photo flipped a switch for me, from a flood of tears to hope and believing that anything was possible. I credit that moment with launching my career path in the field of special needs. After several inquiries we enrolled our son, age 2 weeks, in a new research program at Children’s Hospital Washington DC. Weekly airline commutes, followed by a two month stay, were my early introduction to medical research and disabilities. I become a parent of a young child with special needs and a medical/paraprofessional overnight. Looking back, I realize that as I coped with this difficult emotional challenge, it also helped position me for an intense future of advocacy, innovation, leadership, and making the world a better place for individuals with disabilities and their families.
Life in Lansing: Changes on Many Tracks
Early Intervention Programs; Group Homes; Michigan State Housing Development Authority (MSHDA); the ARC
A few years later Bill accepted an appointment from Governor Milliken to be Director of MSHDA and we moved to Lansing. Here, Bill devoted his energy to re-engineering MSHDA, I became president of the field’s main advocacy organization – the Lansing ARC – and simultaneously obtained my second Masters, this time in Special Education. As the ARC president, with my new Masters, and my degree in “motherhood” of a young child with Down Syndrome, plus, two other young children, and some experience with research in the field, I had credibility, respectability, a platform and a voice.
It allowed me to help develop the first programs in the state for Early Infant/Early Childhood Education for those with developmental disabilities (broadly defined), housed at the Beekman Center. As President of the ARC, I also worked with the local Tri County Community Mental Health Board (Clinton, Eaton, Ingham), Director, Richard Cooper, and representatives of the Tri County School Districts. Both had some office space at the Beekman Center. After pleading, I too was given space making it easier to work together.
It was the era of deinstitutionalization: Michigan Department of Mental Health decided to close 2000 bed institutions and downsize to 600 bed facilities. Individuals leaving the institution had multiple disabilities and were severely impaired. Gaps in state planning for community placement and the scarcity of any group homes for those returning to the community meant they were often homeless or in jail. At the time, there were a few random small homes run by individual providers, for those with mild disabilities, but nothing for this new population.
Advocates, among them Richard Cooper and his colleagues, were opposed to these “smaller 600 bed institutions” and advocated for smaller community-based group homes. The tension between state and county played out in the form of professional double talk, misunderstood promises, paperwork delays, and bureaucratic confusion.
Advocacy and the Press:
Press Conference to expose unwanted bureaucratic delays;
Group home opening: potential disaster becomes a last-minute celebration;
A new beginning for group homes in Michigan;
Richard accepted a challenge from the state to show, that despite “limited dollars”, it was still possible to develop a quality run “smaller home” of 12 individuals, selected by the state, with severe disabilities, as an alternative to the 600-bed institutional type facility. This would be the first such group home in Michigan, to be located in the renovated Governor’s mansion. Just imagine the scope of this project, now complete and ready to go. Despite having state approvals in hand, staff ready, many volunteers on hand, and residents approved and waiting, there seemed to be endless last minute “technical glitches” and confusion. Most important, after many delays, the actual license, expected earlier that day was suddenly missing. This all threatened the opening. It was right down to wire, one hour before the opening ceremony, when Cooper notified the state that he had called a press conference. Within 30 minutes of the scheduled opening, the “technical problem” was miraculously solved, a state representative arrived with the final license in hand, and the press conference became a happy celebration. This was followed by news articles praising Michigan Department of Mental Health (DMH) and Tri County Community Mental Health (CMH) for innovation. It shows that the high stakes move, carefully thought out, was worth the risk.
This was a new beginning for adults with disabilities. It was the beginning of the broader establishment of group homes as the preferred community placement alternative. This movement eventually led to the establishment of the Macomb Oakland Regional Center (MORC) by the Department of Mental Health, which was initially established to develop small group homes for adults with developmental disabilities. Its first site was an office building in Macomb County with a small number of “training homes” on location, that set the stage and foundation for the six-bed group home model we have today.
Deinstitutionalization and MSHDA; Advocacy and Changing the Law
Section 8 Housing Laws are amended to include adults with intellectual disabilities, expanding the landscape for the broad spectrum of group home development.
Bill, Director of MSHDA, was in the business of building and regulating housing for seniors and other groups who were considered vulnerable and economically disadvantaged. In that regard he worked with the federally funded Section 8 Housing Program. He soon discovered that this program covered individuals with physical disabilities but not intellectual disabilities. Thanks to Bill and others under his influence, Governor Milliken became the first governor in the country to allocate significant state dollars for housing for adults with intellectual disabilities, while Bill and I shuttled back and forth to Washington DC to change the federal law. The amended law broadened section 8 housing to accommodate individuals with the full range of disabilities, opening up new housing opportunities for those suited for supported and independent living.
MSHDA funding was also used to pioneer building newly constructed group homes for 12-14 residents These homes existed in the community alongside of other smaller group homes, all supported by mental health and social service funding. They were new, modern, a first, and in sharp contrast to the more typical. sometimes run-down older homes. They served an important purpose for some time. As the thinking in the field evolved, experts thought them “too large” to “feel like family”, eventually giving way to the smaller six-person home or smaller, which is the standard of today.
Work Continues: 1970’s and 1980’s
Richard becomes director of Oakland County Community Mental Health (OCCMH).
Child Abuse and Neglect: Major Initiative and New Child Protection Laws
First Office of Recipient Rights opens in Detroit
Richard was recruited to become the Director of Programs for individuals with developmental disabilities, commuted from Lansing to Oakland County, and eventually became CEO of Oakland County Community Mental Health (OCCMH), bringing it into “Full Management” as an Authority (OCCMHA). The family eventually moved to the Detroit Area.
Harriet was committed to her innovative grant funded position with Catholic Social Services in Lansing, to tackle the problem of child abuse and neglect. With the mindset of innovation, collaboration, connection and community, powered by advocacy, the initiative resulted in the first Council for the Prevention and Treatment of Child Abuse/Neglect in the State. A first, this was a collaborative of education, mental health agencies and the medical school at Michigan State University, that brought about a network of new direct services for families and children, who were victims of, or struggling with, the cycle and destruction of this terrible problem.
Within the first two years of this initiative, which included major public education campaigns and targeted efforts to educate legislators, the Child Protection Laws of Michigan were drafted around our kitchen table, and eventually written into law. This was followed by the creation of the Michigan Children’s Trust Fund, which introduced a small optional check off on the state tax return to support the effort. When the agency initiative was well established, I ended my commute from Detroit to Lansing and joined the family back in Detroit.
The high-profile activities of the Child Abuse/Neglect Council Collaborative of agencies, the child protections laws, and the related education and public awareness campaigns, along with many new services for families and children, led to the creation of the first Office of Recipient Rights (ORR) in downtown Detroit. I was recruited to work with its first director, Janet Coye, to help build the foundation for this office and the very important work it does today. Today, I am honored and pleased to serve on the Recipient Rights Advisory Council where I continue to contribute.
Returning to Richard and Bill as partners for the greater good:
Strategic planning on a restaurant place mat, driven by collaboration and thinking outside the box, leads to 6 new group homes in Oakland County.
Although MSHDA homes were still operating, it was a time when six bed group homes had become the preferred alternative for adults with disabilities. Neighborhood acceptance had grown, and agencies were working together. The Oakland County Community Mental Health Authority (OCCMHA), and the Macomb Oakland Regional Center (MORC) had defined roles, but as always, money was tight and group homes were in short supply. At this time, Bill still worked for the State of Michigan in a position of political influence, and Richard headed mental health initiatives as CEO of OCCMHA. The two leaders met at a truck stop and devised a strategic plan, mapped out on a large paper place mat, for 6 new group homes in Oakland County, to be opened over an 18-month period, and made it happen.
Where are We Today?
We are Professionals and Lay Leaders:
Richard, Bill, and I have all played a significant role in the development and support of provider agencies and their networks to improve services for those with intellectual disabilities and other vulnerable populations. We were among the early founders and funders of JARC and Community Living Centers, Inc., agencies that provide residential services. One or all of us has served on those agency boards and the boards of Rose Hill, Jewish Family Services and JVS. Between us we have experienced the full range of providers, serving infants to aging, and from community-based nonprofits to hospital-based programs, to the private sector. We understand the complexity of systems, and the challenges of bureaucracies and politics. It is a rough and complicated world out there but the more we know and understand it, the better off we are and the more we can change it for the better.
We are Recipients of Services
During the period of the 1970’s my brother moved into a MSHDA home in Farmington, Michigan and began attending a sheltered workshop. He subsequently lived in a few smaller six person homes. At age 25, it was the first time he ever received services suited to his situation. He blossomed and continues to do so. He performs at a higher level than my son, but received a much later start in receiving badly needed services. By contrast, my son with Down Syndrome, entered the system early, as a participant in infant education at the Beekman Center (Lansing), then benefited from our school district’s full service special education programs and moved into his first six-person group home at age 18. Having grown up around his uncle and parents who lived and breathed the mental health system, he was more than ready to “leave home”. He continued with his school-based services and eventually attended a sheltered workshop where he works today. He learned to ski, play tennis, and was active in the Michigan Special Olympics as a runner. What a difference early intervention makes.
Over the Past 35 Years
Despite the 21-year age difference, my son and brother have always been close and now it’s a gift that they can enjoy living in the same group home in Southfield, with a wonderful manager who knows them well. It has always been clear to us that a quality, well trained, experienced manager, who really cares, is the key to a well-run group home and today we are blessed. Both men continue to share family, friends, a social life, and the same workplace. They enjoy similar recreational activities and have traveled the country together to see family and friends. We are especially blessed with our Atlanta family (daughter, husband and two college age granddaughters), who, despite distance, are part of their lives. This family has the magic of love, kindness and reaching out to others that lights up the world in our family and in their community. Aging is a challenge for all of us. It is so much more challenging for those with intellectual disabilities and we see it up close. Now it is further complicated by the pandemic. However, despite the challenges of today, we are enormously grateful for their current status.
For the most part we have been blessed with very positive experiences. We are certain that these results can be largely attributed to (1) agency competency, when tied to clear, measurable, agency and staff performance standards; leadership and adequate oversight; all of which seems to come and go in phases; (2) caring and well-trained staff, which is tied to all of the above, plus training, supervision, compassion, a good work ethic and the skill of the home manager; and (3) our special efforts to always express appreciation to staff, who are often undervalued and certainly underpaid. We built our own careers from the bottom up and understand how hard direct care staff work and how difficult their jobs can be. Our family involvement and advocacy has been steady and essential to everyone’s well-being, even when unwelcomed.
Returning to the beginning of this story, there is no substitute for the collective power of relationships: the caring, connections and a community working together; or for hard work of advocacy, reaching for higher ground and thinking outside the box to get there. There is also no substitute for working to be sure that provider agencies are in compliance with CMHA’s System Integrity and Design Principles. I am sure this includes compliance with licensing standards, provider standards, respecting and protecting everyone’s rights as outlined in the mental health code (ORR), and following the Individual Plan of Service (IPOS) based on person-centered planning, However, I strongly suggest modifying the Design Principles to include a statement about the importance of accountability. It’s a critical piece of measuring success.
Challenges: I challenge us as families, regulators, advocates, and payors to take another look at how we can best be true to the purpose of these CMHA principles and protections and the individuals served, many of whom are our family members. Let’s take a fresh look: Do the words of the “rules and regs” say enough? Require enough? Are results monitored enough? What does the word accountability really mean in providing services? And who is responsible for what? In the world of Mental Health, what does it mean to say…the “Buck Stops Here”? What needs improvement, modifications, and a complete overhaul? I suggest a review of current practices for efficiency and effectiveness.
The Bottom-up Approach
Ask the right people the right questions and don’t leave anyone behind.
Our experience is that programs are often designed, and rules crafted by well-intentioned professionals. However, those on the front lines are often forgotten or bypassed in the process. Ask the providers, the group home managers, the direct care workers, the families – all the players, what they need to improve services and the process, Take the IPOS as an example: I can think of several ways to streamline the process, preserve its integrity, add substance, and save money… and I trust that others can add to the list. Based on our experience and our story, anything is possible!!
Going Forward: The Importance of Provider Accountability
Our experience is that provider accountability is weak. It is usually unclear if board members of nonprofit agencies know that they have a legal obligation to the “Duty of Care” and all that it entails. There is all too often a large gap of activity, knowledge, and understanding between the top, middle management, and “boots on the ground”. Upper management often pays lip service to needed change but, in the end, there is no change. IPOS’s are often not followed, especially in critical areas. The process is cumbersome, staff are not adequately trained, often set up to fail, and supervision is minimal or absent. The agency execs “talk the talk”, while board members generally have no idea of what is really happening on the ground. The public and board members, who are often community leaders in their own right, are impressed with fine sounding presentations and public relations campaigns, give and receive awards with pride, while regulators all have their own rules and limitations and usually don’t see the whole picture. Oversight functions have been diluted and complicated by the pandemic and our experience is that during these times, creativity has been in short supply. We can, and should, do better and stop using the pandemic as a reason to dilute services. I suggest that funding agencies review their requirements for contracts with providers and consider if what they require, adequately addresses accountability in a meaningful way. I think there is much room for improvement. I also suggest a review of the phrase “the buck stops here”. What does this mean? How can it be used to improve agency performance and strengthen accountability? If we look at how far we have come in this field, we know that one good idea leads to others; one improvement at a time, just like one kindness at a time makes a difference. One day/step at a time is all we have to work with. Let’s make each one count to make things better.
Gaps in Services – Adults with Intellectual Disabilities – Just a Sample:
The educational and mental health system has made great strides to provide a continuum of services from education to vocational to job coaching to employment to job training/placement to a full spectrum of supported and independent residential opportunities for adults with intellectual disabilities.
An aging population (adults with intellectual disabilities) with a predictable increase in dementia requires modification of services, staffing, staff training and funding.
Integrated Services Model for the following groups: Mental Health, Public Health, Social Services, Education, Substance Abuse. Nonprofits: free medical clinics; food pantry; domestic violence; clothing; personal care; e.g., haircuts.
Mental Illness: Services are needed for those who don’t fall into the category of “severely and persistently mentally ill”. These individuals are often lost to the system and are without services or underserved.
Individuals who are Homeless often suffer from a variety of mental disorders that don’t fit the designated categories for access to services. They need “street smart” staff to help them.
In the last two categories, I suggest we revisit definitions that currently don’t fit for these populations that desperately need mental health services and consider modifying the definitions or crafting new ones. The status quo is equivalent to standing still.
Increase pay for direct care workers who have historically been severely underpaid. This has been a problem since the 1970’s. Now it is worse. The population is aging, declining, and in need of more care. And we are competing with $15@hr wages at MacDonald’s, Target and Starbucks. How can we educate lawmakers to really understand what it means to be a direct care worker for our people? We need to make it personal in order to move them to action.
Conclusion: Our family has been blessed with enormous amounts of positive energy, collective brain power, and resources, that were discovered through our personal circumstances of challenge upon challenge. Looking back, we became the change we wanted to see and despite many days that weren’t good, we found something good in every day. Finally, I came across this quote (author unknown to me) that captures the spirit of our journey so well. It also captures our ongoing commitment to continue our work in support of the mission of CMHA.
“If you think you can, you can, and if you think you can’t, you are right.”