Connections

By Noelle Borst, EI Program Teacher, Oakland County Middle School

I’d like to start by saying thank you from the bottom of my heart to Lois Shulman, the editor of Connections, for giving me the opportunity to write this article. While I am, by no means a writer, I am very passionate about mental health and discipline policies/procedures in schools, and I promise to speak from my heart.

After 18 years of working with students in therapeutic classrooms (traditionally known as classrooms for students with emotional impairments) I was shocked and humbled to receive the award for Oakland Schools Middle School Teacher of the Year.

I started my career with a Bachelor of Social Work from Western Michigan University. My first job out of college was in the foster care system. I am embarrassed to say I only made it in that field for under one year. The low pay and long hours made the job difficult. However, the hardest part for me was the inability to spend time daily with the kids who needed the most support. I have the utmost respect for the people who take on the hard jobs in foster care and Child Protective Services, but I found that the high number of kids on my caseload made it nearly impossible to see kids more than two times per month. A few months into the job I was doing a “check in” with a student at his school. When I asked the teacher to speak with him the teacher said, “I don’t know why you waste your time with him – it’s a lost cause.” Nineteen years later I still remember that moment and it is the reason I went back to school to become a teacher. No child is a waste of time.

I enrolled at New York University several months after that encounter where I obtained a master’s in education and special education, focusing on mental health. It was the best move I could have made, as it allowed me to spend six hours/day with students who were in need of intense supports in the school setting. By working closely with my students and their families, we, as a team, have been able to get the right services in place to support the child. Services can range from weekly therapy, to providing reports for medication reviews and even helping inpatient facilities to write treatment plans for students who were in need of emergency hospitalization. The main thing I have learned over seventeen years in the classroom is that every child can succeed with the right support and someone willing to advocate for them.

I’d like you to read one of my favorite quotes, “Kids do well if they can.” – Dr. Ross Greene. Dr. Greene is a clinical psychologist who has been working with children and families for over 30 years. He is the New York Times bestselling author of The Explosive Child, Lost at School, Lost and Found, and most recently, Raising Human Beings. He is the founder of Collaborative & Proactive Solutions (CPS) and it is this method that I have based the last 15 years of teaching on. If you visit Greene’s websites (https://drrossgreene.com or https://livesinthebalance.org) you will find that he has reduced the number of seclusion and restraints in schools and juvenile facilities all over the world. He teaches a method (Collaborative and Proactive Solutions – CPS) in which the value of the child’s view is involved with teaching the child skills. This becomes the focus of the intervention. We currently live in a world of Functional Behavior Analysis and Positive Behavior Support Plans. While this is by no means a bad thing, it also assumes that a child is able to make better choices and control their behavior as long as they receive the right reward or consequence. Greene’s approach does not focus on reward and consequences, rather a systematic approach to getting to the root of the issues. It involves the child every step of the way and interventions are done WITH them instead of TO them. If you have not read his books or visited his website and are dealing with a defiant or challenging child, I highly suggest you look him up.

This mindset has changed the way I run my classroom (and my life). As a graduate student at NYU, I studied “Level Systems” as a way to address controlling students with significant behavior issues. Level systems are an organizational framework for managing student behavior where “students access greater independence and more privileges as they demonstrate increased behavior control.” (Heward, p. 241, 2009) Students earn specific rewards, privileges, and negative consequences that are linked to specific expectations in the classroom. A point system is typically used in which a child must have a certain number of points each day to move up a level. Additionally, a low number of points moves the child down a step. The criteria for moving up and down the level system is the same for all students utilizing the system.

I used a level system for my first 5 years of teaching. While yes, it gave me control of the self-contained classroom I taught, I continuously noticed the students were never able to transfer the behavior they exhibited with me to other classrooms or to their home environment. I had students who were very successful with me, in my room, where I controlled everything.

However, when it came time for them to go to a general education classroom where things were not structured the same, they had the same behaviors that they originally displayed when referred to my room. Over time I realized that power and control (reward/punishment and Level systems) were only a temporary fix for much bigger issues. They did not teach kid skills or provide INTRINSIC motivation to learn.

After 5 years of utilizing a level system in my classroom, and after reading, “The Explosive Child”, by Dr. Ross Greene and “Teaching with Poverty in Mind”, by Eric Jensen, I eliminated the level system in my classroom and began to approach all behaviors with a collaborative approach. While eliminating a level system presented its challenges (adults no longer could control students with threats to lose a level or to offer a reward) it led to more real conversations that had the potential to change a child’s lifelong term. Afterall, what kid tells the truth to the person who is going to give them a consequence for being honest? I realized that if I was going to make a long-standing change, I needed to listen to the kid’s perspective before offering an intervention. I also had to model the problem-solving skills for them.

I have become a huge advocate for the education of the whole child. While this term is a “buzz word” especially in the wake of COVID, it truly means something to me. Our students with mental health issues need to be taught the “why” behind their behavior. They need to understand how their own life trauma affects the development of their executive functioning skills. They need to know how their medication and environmental circumstances make them feel. They need to learn to track their own moods, actions, and how other people react to them based on their actions. They NEED to be able to reflect on these things without fear of punishment (suspension/expulsion/restraint/seclusion).

I will share with you the story of one student from my long ago past. This student struggled with physical aggression (threats towards other students, property damage and aggression towards me and colleagues). I found that the more I developed a relationship with this child the harder she/he pushed back. While they would seek out my attention, they would only share minimal bits of information and then shut down or resist. I started walking him/her home each day, as they lived across the street from the school. While we had great conversations when we walked and I felt as if I was making progress, his/her behavior worsened at school. Staff members began to say I was babying them, that I had to have firmer limits, that I was crossing teacher/student boundaries. People suggested that my time with them should only be given as a reward for positive behavior throughout the day. My gut (and review of brain research) told me that using time with a child as a reward was not right. But after a year working with this particular student and no decline in behaviors, I began to question myself.

At the end of that year, I moved from the elementary building to the middle school building to re-open a therapeutic classroom at the middle school level. That particular student had two more years of elementary remaining. I did not see them for over two years.

Two years later, I was still at the middle school level when they started attending. He/she would not come and talk to me but would “lurk” around my door. If I tried to talk to them, they would walk away. Over a couple months’ time I learned from his/her school social worker that they were having significant issues with work completion/attendance/behavior/self-harm.

One day, by complete chance, I happened to be walking down the hallway and overheard a conversation with this student and another staff member. He/she was refusing to take a math test. I stepped in and said I would take the test and make sure he/she took it. Three hours later we were sitting with the local police department and their mother as he/she reported the sexual abuse that had been occurring in the home since 3rd grade (at no fault of his/her mother who was completely unaware).

The road from there was not an easy one. It was full of medication reviews, therapy, and even hospitalization. But he/she made it. I received a bouquet of flowers from his/her mother with a card stating, “You are my daughters/sons guardian angel.” I have the card to this day. I keep it in what is called my “Smile File” where I keep all my reminders of why I do what I do. I am also happy to say that he/she recently welcomed his/her own first child into the world last month.

In another instance, separate school, separate district entirely, I had a similar (yet totally different experience).

I was working with a student with extreme anxiety issues. He was so emotionally heightened on a daily basis that any interaction caused him to have a fight or flight response. He would act out physically when given a simple direction such as “Please sit down.” This child was moved into my classroom due to the high number of physical restraints that were happening with him and for the level of physical aggression he was exhibiting towards himself and others. Over time I noticed that this student pulled his hood up whenever he was anxious. We began to use it as a cue. “Hood up = give time and space without talking.” The school I worked for at that time had a strict no hood policy. I told other staff members that if this student was feeling internal dysregulation, putting his hood up was the only way he could communicate that he had to be left alone. Over time this student opened up to me. While he was a child with selective mutism, he would use an “alpha smart” (the old school version of a computer) to type what he was feeling. I noticed that if I allowed him to run out of the classroom instead of stopping him, he always went to the same locations to hide. If I allowed him to hide, he would eventually type what the issue was. We would type back and forth until it eventually led to talking and then he would return to class without the use of physical intervention. I faced a lot of pushback from staff at this school. They felt that I was not in compliance with their level system. They felt I needed more discipline and consequences for him (not knowing he was being disciplined with a belt at home each time he had a bad report).

I worked with this student (with varying levels of success) for about six months before I went on maternity leave. Before leaving I attempted to enforce that when this particular kid had his hood up, he should be left alone. When I returned from my maternity leave (the following fall) I learned that a teacher who disagreed with allowing him to wear a hood was part of a team that used physical restraint to gain compliance and he ended up biting this teacher. He bit her so hard she needed physical therapy to get full use of her wrist. My heart went out to this teacher. She was a great person who believed in the school’s discipline policies. However, those policies did not change the student behavior. This confirmed in my mind that physical intervention to gain compliance is never the answer.

Flash forward 6 months. I returned to the classroom the following fall. I learned what had happened. I continued working with this student in my room. After multiple attempts of getting parents to have psychiatric assessments and obtain mental health services with no luck I filed a well-documented claim with Child Protective Services (CPS) citing physical abuse but also mental health abuse for repeatedly not getting support for the child. At one point his father showed up at the school yelling threats to harm me. After an extensive investigation the CPS caseworker mandated mental health services. In addition to being prescribed an anti-psychotic and anxiety medication, the student began to receive weekly support with therapy. By the end of that year, he had eliminated his physical aggression, reduced the times he eloped from the room from daily to monthly and he was working with another staff member in my room to design and make jewelry for others. He wrote me a card (that I still have in my smile file) saying, “Thank you for help with my medicine. It saved me”.

At the end of that school year this student’s father called me and asked me to come meet him at their house. I met with the student, his mom and his dad and we walked to Dairy Queen where his dad bought me an ice cream, shook my hand, and thanked me for helping his son.

The point of these stories is NOT that I was right or wrong. The takeaway is that punishments, rewards, restraints/seclusion, and Level Systems are not what makes a difference in a child’s life. Trusting relationships are the most important thing. Once a child trusts you, you can work with them to identify concerns and address the problems together. You can develop collaborative agreed upon plans and enforce limits in a calm and predetermined way. You can be trusted to develop consistent communication between their school and their outside support teams (psychiatrists, therapists, social workers). It is only through trusting relationships you can openly talk to parents about sensitive topics. Relationship is the bridge to success.

I leave you with my favorite quote, “They may forget what you said but they will never forget how you made them feel.”

By George Kinsella, Hiawatha Behavioral Health Board Member

My sister, Ardith, was born in 1939. I didn’t come around until 1945 so I really didn’t understand or learn about her first few years of life. I was told by my aunt that because she was born in a blizzard at the only local hospital, there was no doctor present. Because of this, nurses were told to delay her birth as long as possible. The methods they used caused her to be born blue and brain damaged.

The doctor’s assessment and advice to my mother was to give her up and let the Regional Mental hospital take care of her. My mother would not do that and opted instead to keep her, love her, and raise her along with my older sister and later me.

She was always considered “special” or “slow”. As a young child, Ardith was plagued with poor vision along with physical and muscular difficulties that slowed her development and kept her from normal play.

Education wise, she entered kindergarten at a normal age and her teachers were patient and tolerant until about 3rd grade when she was placed in special-ed classes about 20 miles from our home with no bus service available. My parents as well as extended family members drove her to school and/or picked her up to bring her home. She advanced to a 4th grade level and was able to express herself fairly well when writing letters or notes although struggling with sentence structure and punctuation.

In her later life, she outgrew most of her physical difficulties. She even learned to ride a bicycle around town. Her mental age was determined to be 8 to 10 years old. She never progressed mentally any further.

The greatest thing about living the bulk of my life with a sibling who was blessed to have these disabilities was the lessons I/we learned. Patience, tolerance, unconditional love, and respect. I remember that it took us all more than 25 years to teach her to tell time with a little clock that had movable hands. As a graduating senior in high school, my friends all gave me pictures with writing on the back. She took those pictures and cut out the faces and glued them on a sheet of paper, thinking she helped me to be able to put them all in one frame. Yes, I did learn patience and tolerance.

She was incredibly perceptive. Often, I would bring a girl home to meet my family only to find that Ardith did not like her. History would prove that she was right more than I was.

Now that she has been gone for more than 10 years, I not only miss her but I realize that she was much more important for my life than I was for hers.

By Lloyd Austin, M.D.O.C. Kinross Facility

When the scruffy orange cat showed up in the prison yard, I was one of the first to go out there and pet it. I hadn’t touched a cat or dog in years. I spent at least twenty minutes crouched down by the dumpster behind the kitchen as the cat rolled around and luxuriated beneath my attention. What he was expressing outwardly I was feeling inwardly. It was an amazing bit of grace to feel him under my hand and know that I was enriching the life of another creature with something so simple as my care. I believe that caring for something or someone in need is what make us human. Over the next few days, I watched as other prisoners responded to the cat.

Every yard period a group of prisoners would gather there. They would stand around talking and taking turns petting the cat. These were guys you wouldn’t usually find talking to each other. Several times I saw an officer standing in the group. Not chasing people away, but just watching and seeming to enjoy it along with the prisoners. Bowls of water appeared along with bread placed wisely under the edge of the dumpster to keep the seagulls from getting it. The cat was obviously a stray and in bad shape. One of the prisoners brought out his small, blunt nosed scissors and trimmed burrs and matted fur off him.

People said, “That cat sure came to the right place, he’s being treated link a king!”  This was true, but as I watched I was thinking about what the cat was doing for us.  There’s a lot of talk about what’s wrong with prisons in America. We need more programs; we need more psychologists or treatments of various kinds. Some even talk about making prisons more kind, but I think what we really need is a chance to practice kindness ourselves. Not receive it but give it.

After many years here I know that kindness is not a value that’s encouraged. For me to survive here I’ve had to learn to mind my own business, keep my head down and never let myself be vulnerable. For a few days a raggedy orange cat disrupted the code of our prison culture. They’ve taken him away now, hopefully to a decent home. It did my heart good to see the effect he had on me and the men here. He didn’t have a PhD; wasn’t a criminologist nor a psychologist. But by simply saying, “I need help here” he did something for us that none of the experts seem capable of doing. He needed us, and we needed to be needed. I believe we all do!

By Linda VanWormer, Services to Enhance Potential

In An Introduction to Supported Decision-Making, Martinis (2023a) states, “every day, parents of people with disabilities across Michigan are told by friends, family members, and professionals that they must get guardianship over their children. And, every day, parents follow this advice and spend time and money on lawyers, doctors, and court hearings because they think guardianship is their only option. Sometimes it is. A lot of times it isn’t.”

Supported Decision-Making (SDM) is a way for adults with disabilities to make their own decisions with the help of trusted friends or family members. It is used and recognized as an alternative to Guardianship across the United States.

What would you do if you were told you had no rights? If suddenly someone else was given the right to choose for you where and how you live your life?

My name is Linda VanWormer and I became the first Michigander to be authorized by a court to use Supported Decision-Making instead of being put in guardianship.

I am a lifelong resident of Michigan. I have intellectual and other disabilities. After I escaped an abusive relationship, my sister Amy Peckinpaugh helped me put my life back together. Because I had difficulty arranging my life, my sister became my partial guardian. This was done to protect me in staying out of the abusive relationship and promote my recovery.

My sister worked with me to increase decision making experiences and help me learn how to direct my own life. After 10 years in partial guardianship, my sister and I realized that I had been using decision-making with help of family, friends, and professionals who I trust. I found out this is called Supported Decision-Making (SDM).

We decided that I did not need a guardian anymore. My sister, Amy, told the Court that I no longer needed a partial guardian. I had a network of people I worked with – friends, family members, and professionals – who were dedicated to helping me use SDM to understand, make, and communicate my own decisions about my life, like where to live, what to do, who to spend time with, and how to budget and spend my money.

However, due to a paperwork error, my case wound up back before the Court, where the judge was skeptical that I could make my own decisions. My court appointed attorney also expressed doubts.  My sister and I then worked with Annette Downey of Community Living Services, Inc. to hire Jonathan Martinis, a national expert in SDM, to help show the Court that I do not need a guardian. Mr. Martinis interviewed me, my sister, several others in my life and gave a report  (My Report from Jonathan Martinis) to my attorney and the Court. After reading the report, my attorney supported my request to use SDM instead of a guardianship (Martinis, 2023b).

The Court ruled that I do not need a guardian “based on [my] ability to use SDM to make decisions about my life, and the support and care I receive from my family and caregivers.” With those words, I became the first Michigander to be authorized by a court to use Supported Decision-Making instead of being put in guardianship.

Today, I have my rights back. Now, I call the shots! I make decisions.

Here’s a link to my story that aired on Friday, March 17, 2023: Local woman makes history in guardianship case, advocates for different option (wxyz.com)

Here is an excerpt from the 6-page legal opinion by Wayne County Probate Court issued in March 2023.

“Based on Linda’s ability to use SDM to make decisions about her life, and the support and care she receives from her family and caregivers, Linda possesses the capacity to care for herself and her estate.

CONCLUSION

Petitioner’s request for guardianship is DENIED.

The National Guardianship Association (NGA) has a Position Statement on Guardianship, Surrogate Decision Making, and Supported Decision-Making. NGA states supported decision- making should be considered for the person before guardianship, and the supported decision-making process should be incorporated as a part of the guardianship if guardianship is necessary. Link to the NGA position statement is here: SDM-Position-Statement-9-20-17.pdf (nvpep.org)

There are 23 states in the United States, plus the District of Columbia (D.C.), that have passed laws about Supported Decision-Making (SDM). My sister and I are looking to get legislation in Michigan and become the 24^th state to have a Supported Decision-Making statute!

By Betsy Wiehl, Retired from RWC Advocacy 

It’s been the privilege of RWC Advocacy, and my personal privilege, to work with the Community Mental Health Association for many years. Lois has invited me to offer a few thoughts about advocacy and the critical role that “non-professionals” play in shaping public policy in Michigan.It’s the job of professional lobbyists to be in touch with the mechanics, substance, and politics of what is happening in Lansing. We are here every day fostering relationships with policy makers, educating them, and helping move their decisions in directions that best serve our clients. Lobbyists get a bad rap, but I say without irony that we play a valuable and necessary role! Legislators and other policy makers are often overwhelmed by the volume and magnitude of the decisions they face every day. And they are humans. They cannot know everything, let alone analyze and make decisions, about every issue that comes before them. (And of course, that’s been amplified since Michigan adopted term limits.) Lobbyists fill those gaps of experience and knowledge.

That said, and with respect to my lobbyist colleagues, there is absolutely no substitute for the advocacy of constituents. Yes, that advocacy must be properly timed with legislative and policy processes. Yes, that advocacy must be strategically communicated. Yes, that advocacy is even more powerful when coordinated with the efforts of like-minded others. That’s where CMHA and other professionals can provide insight and expertise. But actual consumers and actual providers who take the time to talk with policy makers about their lived experience have, quite simply, a unique and profound impact.

Your advocacy can be exhausting and frustrating. It can seem like you’re not being heard. It can seem like change happens too slowly. It can seem like you’re having the same discussions and fighting the same fights. It can seem like just as a powerful champion emerges, he or she leaves their job or elected office. These things are true. Yet it’s equally true that your personal experience and your guidance – your advocacy – is essential to those who may want to do the right thing but not know what that is or how to achieve it. You practice patience and persistence in your lives every single day, and that goes for advocacy too.

I am in awe of the passion, wisdom, and commitment of all you advocates! Please know that your efforts DO make a difference and ARE making the needs of Michigan’s public behavioral system known, understood, and valued by those in the Capitol and in Lansing.

I have now moved into a new stage of my life (a/k/a retirement!). I’m grateful that my career found me and gifted me with the opportunity to meet, represent, and work alongside so many wonderful individuals. I thank you. I know you will, in partnership with this association, continue your passionate and successful advocacy on behalf of the behavioral health community. Be well!

By Betty S. Ruoss, Advocate, Author and Member of Easterseals Michigan

I first experienced symptoms of schizophrenia in 1976 when I was employed with a Fortune 500 Company. I had just been promoted from my administrative assistant job to a marketing position. I had to move my entire household along with my two dogs, from New York to Michigan to take this job in just one months’ time.

When I arrived in Michigan it was difficult to find an apartment that would take my two Samoyed dogs. Also, I had to train for my new job, learn a new town and people all during the same time I was trying to get settled. Much of my training was on location, but I also had to travel out of state. I stayed stressed out all the time and I wasn’t getting the proper rest. My personality began to change. I became paranoid and also began hearing faint sounds of voices in my head. I didn’t know what was happening to me, because mental illness is something that had never crossed my mind, plus I had never heard of schizophrenia, and I was not treated for it until two years later.
I eventually found a place for me and my two dogs to live, but things didn’t get any better with my life, and my mental state got worse. As time went by the voices, I heard in my head became clearer and louder. I became more paranoid. I began to think my co-workers were whispering behind my back. I thought they were judging to see how well I did my job. I felt they could hear my thoughts by reading my mind. I also felt that I could read their minds. The voices continued talking to me and telling me what things the people were saying about me. I wasn’t myself at all. My manager noticed my peculiar behavior and recommended that I take a few days off from work. I did take time off, but it didn’t help at all.

I continued to be delusional and have hallucination symptoms for two years before seeing a psychiatrist. When I began receiving treatment from Dr. Chapman in 1978 his diagnosis was paranoid schizophrenia. I spent two weeks in the hospital on the psychiatric ward. This was my first hospitalization. While there I was prescribed Valium which was not effective. I was released from the hospital still hearing voices and feeling paranoid. My psychiatrist then prescribed Thorazine, an antipsychotic medication which didn’t help either. He finally tried Stelazine, another antipsychotic medication which also didn’t relieve my symptoms. Back then (1978) there weren’t many psychotropic medications to take. I continued to take the Thorazine for a while, but later discontinued it on my own because of the side effects from it.

I saw Dr. Chapman for psychotherapy visits until he retired and closed his practice in 1983. He recommended other psychiatrists for me to see, but I never contacted any of them. I thought I would be fine without further treatment. I wasn’t on any psychotropic medications for years from then on until 1995. My life wasn’t easy. It was in complete shambles. I began to isolate myself from others. I didn’t answer the phone when it rang, and I didn’t open my door for visitors. I just wanted to be alone. I could no longer hold my job, lost land and property, had three evictions, was homeless three times and was incarcerated once.

Because of my illness I’ve had many losses. The biggest loss was in 1995. I was still not taking any meds which resulted in a severe psychotic episode involving a police officer and a gun. The police officer shot at me striking me in the left eye and blinding me. After the shooting the officer drove me to the hospital for treatment for my eye. After being admitted there for two weeks, I was taken to jail where I was incarcerated for two months. The Court found me not guilty by reason of insanity (NGRI), but I was sentenced to a psychiatric facility. I spent a total of five consecutive years (1995-2000) between Clinton Valley Psychiatric Hospital, Northville Psychiatric Hospital, and the Forensic Center. While in these hospitals I was placed on Haldol, Seroquel, and Zyprexa antipsychotic medications. None of these medications helped my paranoia, delusional thinking or stopped me from hearing voices. Plus, I experienced side effects from them. Seroquel kept me sedated and like a zombie. Haldol kept me anxious, and Zyprexa caused me to be borderline diabetic, but I continued on the Seroquel after being released.

In 2000, I was discharged from Northville Psychiatric Hospital and moved to a group home. This is when I became aware of Easterseals. An Easterseals case manager was at the home to meet me as soon as I arrived there. Easterseals has been a great help to me.

I have had four other hospitalizations after leaving the Group Home in 2002 while living independently again. These hospital stays were from two weeks to two months. I was released from these hospitals but with no positive results. I was still hearing voices, paranoid, delusional, depressed and still experiencing side effects from my medications.

Medication has been a journey for me, I have been prescribed many different kinds of psychotropic meds including Geodon, Depakene and Olazapine, but it was never the right kind, and they didn’t work.

It wasn’t until a 2010 hospitalization that doctors were finally able to help me. I was diagnosed with paranoid schizophrenia and chronic depression. I was placed on a combination of Venlafaxine, Risperdal and Trazodone which were effective and produced no side effects.

Today as a result, I have no paranoid thinking, no hallucinations, and no delusional thoughts. I feel better than ever before. By the grace of God, and the right kinds of psychotropic medications and therapy my condition is now in remission.

I’d like to offer some advice. If you are reading this and struggle with schizophrenia, remember it can be treated just like any other disease. Always take you meds. Medication is getting better and more specific now, but medication can take time to work. Be patient. If you have any side effects, tell your doctor so that he can change your meds or make an adjustment.

Since my recovery, I have gained an interest in mental health and devote much of my time to advocating for the disabled. I communicate with our elected officials, namely the Governor, Senators and State Representatives on issues related to mental health. I was an Oakland County Constituent at the Tri-County Public Mental Health Legislative Luncheon in Lansing April 2019, where I told my story. I am a member of several workgroups and committees through Oakland Community Health Network (OCHN). In 2017 I was presented the Dan Moran Award for Inclusion and Advocacy by OCHN, I have attended the yearly State Recipient Rights Conference since 2015 and was one of the presenters in the OCHN Go Rights Conference in 2019. I’ve also attended the 11th Annual Anti-Stigma Conference in Lansing 2019; and attended many Walk-A-Mile in My Shoes rallies at the State Capitol. In the 2018 rally I helped to carry the Oakland County Flag and was part of the Program held there. I am also a long-time member of Easterseals Dreams Unlimited Clubhouse.

In June 2018, I wrote an article entitled, From Failing Meds to the Ones That Worked by Betty S. Ruoss for the Schizophrenia Bulletin. This article is on the website www.schizophreniabulletin.com, under First Person Account 2018. The article was republished March 2019 in The Journal of Psychoses and Related Disorders Volume 45, by the University of Maryland School of Medicine, Maryland Psychiatric Research Center and will be used in research to help in educating and understanding the disorder of schizophrenia and depression.

My book, Betty’s Battle, A True Story of Schizophrenia and Depression by B. S. Ruoss was published in October 2018. I recently published my second book (March 2020) titled, The Subject of Schizophrenia, All You Want to Know About the Illness by B. S. Ruoss. The website is http://www.thesubjectofschizophrenia.com. Both books, Betty’s Battle and The Subject of Schizophrenia, are on most bookstore websites, also on amazon.com, ebay.com and e-book.

By Robert B. Dillaber

During times of extreme trauma, such as we are now experiencing in America, we often find ourselves fearful, bewildered, disoriented, and depressed about our future. As I write this article, I am bouncing around among all of those feelings.

Often, I’m feeling helpless to do anything about it – as if there’s nothing I can do to make anything better. Almost daily, it feels like I’m struggling just to survive. I know I’m not alone here either because so many of those I know and care about have described the same feelings to me. Glance up again at the title, CREATE A MOMENT TO THRIVE… You may well be thinking, “How can I possibly thrive if I’m struggling just to survive?” That’s a question I’ve had to ask myself over and over – not just today but for decades.

Why? Because as a person long ago diagnosed with a mental illness, I’ve often had to fight my way through a morass of traumatic and sometime life-threating situations. There were times I gave up and only sheer luck or the intervention of others kept me around to write these words.

Today, as I look back on my 80 years of kicking around on this planet, I see that I learned something very important BECAUSE of that difficult journey. I learned how to create moments to thrive, even as I struggled just to survive. I share that next, for whatever it may be worth. It may be helpful, or it may not. We are all different. What works for one may not work for another. So here it goes.

Little by little I have learned that regardless of what I’m thinking, feeling, contemplating, or doing at any given time, my mind is always in one of three places.

ONE PLACE IS MY HURTFUL PAST – In this place my mind is reviewing and ruminating over my sometimes hurtful past, akin to replaying an old movie over and over. This place creates fear and avoidance.

ANOTHER PLACE IS MY UNPREDICTABLE FUTURE – In this place my mind repeatedly and compulsively tries to predict the future – to know the unknowable. This place creates confusion, frustration, and sometimes fear of not being good enough.

THE OTHER PLACE IS MY “NOW” – In this place my mind is observing and reacting to what is happening at this very moment, second by second. My Now creates opportunity.

WHY DOES THIS MATTER? Because when I’m in the midst of significant turmoil or trauma, my unconscious mind instantly takes me hostage and catapults me back and forth, at a dizzying pace, between my Hurtful Past and my Unpredictable Future. There is nowhere in these two places to thrive, only survive.

So how do I create a moment to thrive? By yanking my mind out of the other two places and landing it squarely in the NOW. Why? Because the moment I’m in the NOW I can ask myself, “What can I do this very moment that will make me feel good?” The answer to that question is exceedingly simple:

I will feel good when I do something I like to do. Something that makes me feel good inside.

 Doing something that makes me feel good helps when I’m just trying to survive. But if I want to create a moment where I can truly thrive, I must add a second element. One which includes other. Let me put it this way:

I create a moment to thrive when I do something that makes me feel good that also makes another person feel good.

Like what? you may ask. I’m not a rich philanthropist so I can’t give someone money to pay a bill or buy a needed used tire. In my case I try to create that moment each day by doing something that costs nothing. Here’s what I do.

I sit outside with my rescue puppy VISA as she does her business. I live in a trailer park where streets are fairly narrow, so cars drive by slowly. One of the things that always makes me feel good is to give a friendly acknowledgment and smile to others – whether I know them or not. So, I give a smile and a wave to those driving by. Some don’t respond but most smile and wave back. Every so often someone even stops to chat a bit.

We all like to be seen and acknowledged by others. So, for many of these people something as simple as a wave and a smile might make them feel good. Maybe it’s a younger or older person who worked all day behind a counter where they were treated badly by some customers. For this individual, a friendly smile and wave of hand might brighten the close of their day. Maybe not, but maybe.

I can only create this moment to thrive when my mind is in its NOW place. If it was in either of the other two places, I wouldn’t pay attention to passing cars. Also, the crabby or sad look on my face wouldn’t make anyone feel better. As I said earlier, this is just my particular way to create a moment to thrive. There a million other ways, depending on the person.

Finally, let me share something totally unexpected and downright amazing that has been happening since I began creating these moments to thrive. Often, after I have done so, another such moment seems to almost magically appear – all on its own.

The year 2020 brought a global pandemic and life-altering change for all of us. COVID-19 emergency measures in Michigan saw schools and businesses closed, employees furloughed, and directives to shelter in our homes to stay safe.

The stress of day-to-day living with the unknown and the threat of serious illness for ourselves and our loved ones is taking its toll. The feelings of exclusion, limitation and possibly loneliness forced upon us by the mitigation efforts are well known to a large swath of Americans. For many of us, though temporary, they feel interminable. However, for people with mental illness or intellectual and developmental disabilities, these feelings can, in fact, last a lifetime.

March, April and May are typically designated to celebrate the abilities and important contributions of our citizens with a mental illness or intellectual and developmental disability. These months are not to focus on their disabilities. Rather, the intent is to discover how they enrich our communities when they are fully included as we all work, play, worship, learn and grow together. Yet these are the very people who are excluded on a routine basis. In the State of Michigan, 1 in 5 people has a mental illness or developmental disability. What is important to know is that each is unique, as we all are, and each has important strengths as well.

Meet Josh. Josh is an example of a citizen with gifts, abilities and a strong desire to contribute—not to be excluded or limited. With the support of his family, friends, other community members, and his Community Mental Health Services Program, he has built a life of inclusion and giving, benefitting both himself and his community.

What might be noticeable is that Josh has a disability. What is not apparent from the outside is that Josh is a family member, a son, and a brother. Josh is a young adult. He is described as “incredibly sweet-tempered and displays his happiness for all to see with a big smile while humming his favorite tunes.” Josh is not verbal. His communication is through his actions. He can take extra time to learn a task but most importantly he then stays with it until it is done, no matter how long it takes. Josh has a diagnosis of Autism and does not easily understand social cues, but when Josh “gets a situation” and understands its importance, he tries his best to be helpful. For his mother, he always makes sure she has her phone when she leaves the house and the grocery list if they are going shopping. His mother shares that she was unable to find the cashews for their stir-fry dinner one evening. Josh was able to understand the situation and ran up to the “man cave” and got them. As a contributing member of the household, Josh has mastered many jobs around the house such as setting and clearing the table, filling and emptying the dishwasher, loading the washing machine and switching loads, vacuuming, washing windows, and putting groceries away. He also helps his father working in the yard, blowing leaves and stacking wood.

Communities thrive when their members invest in them by volunteering. Josh has contributed in this way as well by volunteering at the Manna Food Project as well as C. Kolfer Sporthorses. He sounds like an ideal family member and young adult to have as part of any community.

Josh has had strong family backing, friends, and now an employer and support staff to help him accomplish his goals of being productive and included in his community. Josh’s family reached out to North Country Community Mental Health, their local state-funded provider of behavioral health services, for service coordination and funding. They chose the Self-determination model for services which allows Josh and his family to manage a budget and hire and employ the staff needed for Josh’s chosen lifestyle. This allows his life to be self-determined and self-directed, something his parents have championed for him his whole life. If it were not for his strengths and their belief in him, Josh might have been one of those people with a disability languishing in loneliness and exclusion.

One of the goals Josh’s parents have always had for him was to be employed. They put a strong focus on this even during his school years and would not give up. He had summer job experiences working in a restaurant and last summer through Michigan Rehabilitation Services (MRS) as part of a work crew at Wilderness State Park assisting the Ranger sweeping sidewalks, raking the beach, painting picnic tables and other needed tasks. A job coach was able to assess his job skills and his mother worked with local agencies to find Josh a permanent job, but without results. Showing her typical resolve, she put his picture on Facebook with a post that said, “This young man needs a job!”

As with many young people seeking employment, it takes an employer willing to give them a chance. One of Josh’s mother’s colleagues, whose husband co-owns Beards Brewery in Petoskey, saw the post and spoke with her husband, who was willing to give Josh a try. With a job prospect in hand, the summer job coach’s assessment, and Josh’s own desire to work, the local MRS Counselor sought an agency to provide Josh job coaching.

From here there is magic, with people coming together who suspended judgment, practiced patience and understanding, and focused on Josh’s unique strengths, enabling a dedicated and valued employee to emerge. Josh’s Job Coach, Abby, assisted him to learn the job and navigate the social environment and to use his headphones to reduce distractions. More than that, Abby states that working with Josh keeps her grounded, lifts her spirits, and “puts her in a better mood.” She had to gain his trust initially and learn his triggers but now she knows how to reassure him, allowing him to regain his focus on work tasks. Josh does the dishes, loading them onto the rack and putting them away. He sweeps, mops, cleans chairs and tables, and will shovel snow when necessary. His favorite job is folding towels. He knows that Wednesday is “towel day,” 800 of them. He folds them all. He loves to come to work and he is “all out” when he is working. Abby believes you should never underestimate what people are able to do.

Ben Slocum, who owns Beards and hired Josh, thought, “It seemed like something we should do.” Josh had worked in another restaurant setting so he had experience. When Josh was hired, Ben held a staff meeting. His message was clear: This is the owners’ culture and they want to help their community and its members. Josh and his job coach became part of the team at work. His earphones became part of his work uniform. Ben states that Josh was task-focused and there was nothing he didn’t like to do. He worked at Beards from October 2019, until the Governor’s Executive Order required the business to shut down.

Ben wants good things for Josh. Ben believes the other employees are much more mindful with Josh than they are with each other which helps to temper their moods. Ben’s advice to other employers is to be pragmatic and make some adaptations if necessary. He goes on to state further that there is a pool of employees they might be overlooking: “Take a chance. Roll the dice. If it doesn’t work out, it doesn’t mean you shouldn’t try again. The risk is not as great as perceived. If we don’t try, we won’t move forward and make the world better.” This sense of community inclusion and focus on strengths, rather than the disability, is what keeps Josh from being excluded, as so many are.

During March, April and May, the months of awareness, we faced our own separation and what feels like exclusion that people with disabilities so often experience. We can imagine the loneliness and isolation that are lifelong for some, whereas for most of us this is a temporary state of affairs. Many of us have faced unemployment and financial difficulties like the 80% unemployment rate that people with disabilities live with on a regular basis.

As the State of Michigan opens back up, the hope is that we remember our feeling of imposed isolation, exclusion, and perhaps economic insecurity, and that we open up to a focus on the strengths and abilities of those with a mental health, intellectual or developmental disability. This will allow them the opportunity for a sense of productivity, appreciation, and belongingness that Josh and his team have fought so hard to gain for him.

By Clint Galloway, Board Member, The Right Door for Hope Recovery and Wellness (Ionia); Former Editor, Connections for Communities that Care

As of this writing, the pandemic is “officially” over. However, it feels like the ravages of the COVID-19 Pandemic have affected every dimension of our existence. The reports published by the World Health Organization are stark reminders of one dimension of this devastating plague; those who have become infected by the virus. You can check and see what today’s figures are. As of October 10, 618,521,620 people worldwide had succumbed to this disease with 6,534,725 deaths.   https://covid19.who.int/table   However, this is only one facet of the story, when you factor in the socio-economic impact, the devastation becomes universal, no one escapes unscathed. To make matters worse here in the United States, this is occurring within an acrimonious political environment that has jaundiced our outlook while impeding our collective response, it has been a tough year! Is there a silver lining? The words of Paul Harvey come to mind: “In times like these, it’s helpful to remember that there have always been times like these.”  (as quoted in: Wisdom for the Soul: Five Millennia of Prescriptions for Spiritual Healing by Larry Chang, p. 271.) However, I must confess that this sounds a little like an admonishment to “suck it up”. There seem to be a lot of people, including myself, that feel like we have reached our limit. I find it more helpful to find the space in which I can “let it go”. I don’t really need another statistical report of casualties. I simply need to acknowledge the stress. Its effects have been deeply etched in our minds and bodies; if we have not already, the time to take notice is now. That may well be what we are avoiding, fearing if we do, we’ll lose whatever comport we have mustered. It is time to remember that healing requires truthfulness; avoidance exacerbates and prolongs. So, how are you doing?

If you’re old enough to remember the radio broadcasts of Paul Harvey, “the most listened to man in the history of radio”, (I obviously am), his most famous line used repeatedly was: “And now for the rest of the story”. Once we “let it go”, we may discover an amazing sequel of the “rest of the story” coming into focus. It’s right under our noses! If you’re reading this, it’s because you are somehow connected to that vast community network that strives to improve the wellbeing of not only our individual lives, but also that of our families, friends, and neighbors. As one of our sister agencies states their mission, it is “to inspire hope, empower people, and strengthen communities” (OCHN). With our focus on the mission or purpose which we share, let me ask the same question again: How are you doing? If you are reading this thoughtfully, taking time to reflect as you go along, I suspect your answer is quite different this time around. Amazing, isn’t it! The first time I asked the question, I did so in the context of focusing on the suffering, what makes it a tough year; the latter question was asked in the context of what our mission is in our communities, in other words, what have we been doing about it! I suspect it has awakened countless memories of working with the new challenges. Stories of developing creative strategies, building new ways to communicate, engaging in collaborative efforts, learning new skills, bringing new voices into genuine dialogue, all to persevere in advancing the mission: promoting the wellbeing of our communities.  Some, perhaps many, of these stories may well have already concluded with a celebratory exclamation, “Yes! we did it!” Challenging times not only produce casualties, but they also produce the stories that are flush with meanings, revealing our true nature: at the bottom, we are One. What called us into this work shines the brightest when the pressure is the greatest. “And that is the rest of the story!”

By Lois Shulman, Editor, Connections for Communities that Care

I have discovered that I can create peacefulness within myself in the midst of chaos.

Whether I awaken to blue skies, stormy skies, good news or bad news, I have all I need to choose to create my desired peacefulness within.

I practice choosing to: awaken, before my feet hit the floor, stating my gratitude for life itself with all I need provided for me; read an inspirational passage; set my intention to cultivate a curiosity about life in all its forms and understanding; and nurture my mind, body and spirit. I incorporate all this to begin each day creating my peacefulness within.

Discovering and understanding your peacefulness within is unique to each of us. Upon refection, I recall a moment of discovering the beginning of this process for me.

On one particular sunny morning 12 years ago, I was overcome by the sadness of loss from my recent divorce. I struggled to get dressed, and headed to a neighborhood store. As I approached the door, a stranger walked out looking sad and appearing to be struggling. I instinctively rushed to hold the door open for him, saying: “Good Morning” with a forced smile. In that moment I wanted to gift him with what I wanted so desperately for myself—someone to see me and value me. This brief exchange proved to be powerful. The man immediately responded to my actions by saying how my act of rushing over to help him made him feel “special” and that was just what he needed.

I was overwhelmed with emotion. I genuinely smiled, without comment. I walked back to my car to sit with my tears. I felt something shift inside of me. I realized I wanted to experience this feeling again and again. Our interaction taught me that by helping another, I am helping myself. The peacefulness I felt within, from my action, was exhilarating and compelling.

I credit a story told to me by a friend, with my ability to achieve my peacefulness within. The message conveyed in the story was in the form of a prescription. The message prescribed that I must practice for seven days my created process for being peaceful within, in exactly the same way each day, for a powerful pathway to emerge as a useful, positive habit. I chose to follow the prescription, and that process is now a positive force in my life.

There is a story entitled, The Real Meaning of Peace (author unknown), that inspires my self thinking to achieve my peacefulness within: Long, long ago there was a king who held a contest to find the most beautiful painting of peace in his kingdom to hang in his castle. His people were astonished and perplexed by his choice. He explained that in the painting he chose, he not only saw ominous dark clouds and a raging waterfall, he saw behind the thundering waterfall a tiny nest of baby birds, being fed by their mother. This, to the king, was true peace. I interpret this story to mean that being able to find your peacefulness within, amidst chaos and turbulence, is true peace.

During the Covid 19 Pandemic to achieve and maintain my peacefulness within, I set my intention to stay connected in order to maintain my peacefulness within: by reaching out through my electronics to gather articles for our CMHA Connections; by accepting a permanent flex /substitute teaching position at an elementary school, (2020-2021), assigned a classroom of 5-7 year old’s, (2021-2022) placed wherever needed on campus; and by committing myself to attending meetings, via various virtual platforms, that I could not attend, if they were in person.

Through my teaching experience I have observed peacefulness within is meaningful to people of all ages. The movement teacher at our school uses an exercise, the creator of which is unknown. The exercise is used to help the children to refocus their energy, and to find peacefulness within . At the conclusion of the group exercise, there is a dramatic shift of activity in the room.

The teacher asks the children to close their eyes and begin to repeat: Peace begins with me. As they say the words they are encouraged to touch their thumb against one finger at a time. The first time I saw this exercise in action I was in awe of the children’s willingness to participate in the exercise and the peacefulness that flowed throughout the group.

On December 18, 2021 I was hit head-on by a car whose driver lost control on an icy road. I sustained an anterior depressed sternal (breast bone) fracture. At the moment of the accident, I realized I had all I needed. My habits, created by me, effortlessly were with me to support the healing process of my mind, body and spirit.

Peace does begin with you as you discover your peacefulness within. Whether you awaken to blue skies, stormy skies, good news or bad news, it will not matter.

Shared with love and gratitude.

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.

Needed Services:

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.

Legislative Advocacy:

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.”

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