Duane Thompson was at his wit’s end with his daughter, whose chronic behavioral health problems culminated when she came at him with a knife.
“It makes you feel angry at times,” the Cincinnati father said. “Sometimes I go to work and sit there and tear up. And say “Why?”
Diane Thompson of East Liverpool, OH., was running out of options in taking care of her two grandchildren, including Leon, 18, who suffered a tumor on his optic nerve that cost him the sight in one eye.
“I was treading water” she said. “The government and Social Security won’t tell you about benefits and how to work with the system. If you don’t know how to do it, nobody tells you how.”
Sharon M. was having trouble getting Cincinnati school personnel to understand how her 11-year-old son’s attention deficit disorder and speech impediment were hampering his education.
“I realized I needed someone who knew the laws. Since I’ve been speaking about the laws, there’s a different respect at the table.”
These three different parent dilemmas have a common denominator – all have been helped by the Parent Advocacy Connection Program (PAC) operated by the National Alliance on Mental Illness Ohio. As part of the program, parents who have lived experience provide training and support to assist families involved in the child-serving systems of care in Ohio. PAC advocates use their experience with their own children to support families with what they need to help their children get services and support so that they can grow and thrive into adulthood. In addition to aiding parents in connecting their children to services, they guide them so they can move forward to advocate for themselves. Having a PAC advocate at the table with a family can help create a cultural shift as families are humanized and seen as capable and able to be there for their children. PAC advocates problem solve, collaborate and support. Most importantly, they listen, guide and support so that families they serve can become meaningful decision makers in their child’s life.
Duane Thompson and his wife, Flametta, have been dealing with their daughter Rodnetta’s issues since she was diagnosed as a child with autism spectrum and cognitive issues, bi-polar disorder, and aggressive behavior. “It’s a constant thing,” he said. Her aggressive behavior comes and goes, but occasionally she must be restrained, Duane said, relating when his daughter threatened him with a knife. It scared him and made him sad at the same time.
The light at the end of the tunnel showed when Duane’s brother referred him to NAMI Ohio. “We were having such a hard time getting her services, but my parent advocate helped me with connections,” he said. “If I have a question or I’m not real comfortable, she would help me with advice. She is the reason my daughter is getting help.”
With the help of a local agency, Duane’s daughter is how receiving medication, counseling, help with social skills, and may soon move into her own apartment.
“Meeting after meeting, NAMI was there,” Duane said. “They let you know the things you should know. I won’t have a meeting about my daughter without them.”
Diane Goodwin, at 52, finds herself in the position of many grandparents these days in raising her two grandchildren, Leon Daughtery II, 18, and Laila Powell, 6. They lives in Columbia County, a part of Ohio where there are limited services for people with health and mental health issues.
Diane began taking care of Leon and Laila because of the drug addiction of their mother, who has since passed away. “I want my kids to stay within the family,” she said.
“I want to know in my heart that they are safe and grow up right. I had to step up to the plate.”
But the job was much harder, and far more costly, than Diane anticipated, especially when Leon developed a tumor on his optic nerve that eventually cost him the sight of one eye and tunnel vision in the other. At one point, his condition was so serious he was given four months to live.
But Diane’s NAMI parent advocate helped her navigate the Social Security disability system and other programs to get Leon the help he needed, including multiple surgeries. Now, he’s hopeful of going to college to study engineering at West Virginia University.
Diane has used her new-found knowledge of help systems to get Chromebook computers for Laila’s school, she said proudly. “The word is out there, but nobody knows about it.”
“NAMI was great,” she said. “I wish people could see it first-hand.”
Sharon’s son has autistism and has struggled academically, especially with the advent of home learning that came with the COVID-19 pandemic. While he had an Individualized Education Program and a classroom attendant in Cincinnati Public Schools, that fell by the wayside when the pandemic forced schools to close. She has been working hard to make sure her son has what he needs to be successful in the academic setting.
Sharon met with NAMI and school personnel to work out special programming for him. “Parent advocates are very important,” she said. “Having an advocate who knows the laws and the changes makes them take you seriously. You are a parent who is aware.” Sharon said she was painfully aware that African-American males face additional pressures and problems in school. “At the end of the day, I realized I needed someone who knew the laws. Now there’s a different respect at the table” when she meets with educators.
“If you don’t know the law,” Sharon said, “you don’t win for your child. My child’s future is important. NAMI is definitely needed who those who value their child’s future.”
NAMI Ohio has about 40 parent advocates around the state, but is seeking more to meet the needs of parents and children. For those interested, and who have experience in the child-caring system, NAMI will provide free training and access to all necessary materials. PAC parents receive a financial stipend for their work with individual families. Additional compensation is offered to those who wish to advance to be regional PAC coordinators.
For more information on PAC, email Dana Berryman at email@example.com, Jody Demo-Hodgins at firstname.lastname@example.org, or call NAMI Ohio at 614 224-2700.
Jerrone’s Story Video
Jerrone Darnell McAdoo prayed he would live to the age of 21, knowing that African-American males with sickle cell anemia often don’t make it that long.
He made it six years past his goal.
Jerrone’s inspiration radiated beyond his years, like cleansing sunshine reflected on dozens of young and older adults in Ohio who admired, respected and loved the strength and resiliency of a young man who packed a hard lifetime of living into 27 too-short years. He was that rare person whose influence goes on long past his life.
Jerrone, a founder of the YouthMOVE State Youth Council, advocate for youth in foster care and champion for the National Alliance on Mental Illness Ohio, died June 4, just a few weeks after his 27th birthday. He left behind a new wife, Chantelle, and Jeremiah, a five-year-old son from a prior relationship.
“Despite all his challenges and a multitude of barriers, Jerrone never complained. He was always grateful and put God first. He was a dad, husband, advocate, and inspiration to all who knew him,” said Angela Lariviere, director of YouthMOVE for NAMI Ohio. “We cannot forget that he taught us all to be strong, grateful and most of all RESILIENT. As we grieve for now, we will persevere and carry on his legacy knowing that we and the world are better because of him! Our hearts are broken but we know he is finally at peace and without pain. We are comforted knowing he has taken his well-earned spot among the Angels watching over us.”
Chantelle McAdoo, who is 24, is still grieving the loss of the man whom she met at Christmas time just three years ago. She was introduced by Doris Pickett, who worked at daycare where Chantelle was employed and Jerrone’s nephew attended. Jerrone and Chantelle immediately had something in common since both had been in foster care.
“I thought he was very attractive, very funny, and he was good with kids,” she said. They started talking, then began dating, and married Nov. 23, 2019.
Chantelle said it was a tough decision to marry Jerrone – not that she didn’t love him, but that she knew he was seriously ill. “I was hoping and believing a miracle. Finally, I knew I couldn’t spend another day without him.”
The short marriage was bittersweet.
“Jerrone lived life to the fullest,” Chantelle said. “He was so giving. He would give the shirt off his back. He was ‘captain save the world.’ There was so much he wanted to do and there was so little time. He was a hero and inspiration to us all. He saw the light in other people.”
Jerrone was able to put his journey into words in a short video he did for the Resiliency Ohio project at Case Western University.
“I was tired of just going in a circle, feeling let down. I just said, ‘I’m gonna make it and be somebody.’ I didn’t want to be a statistic.”
Going into foster care at four years old, he matured quickly, Jerrone said. “I told myself I’m not going to let this hold me down, let foster care hold me down. Believe in something. Have a dream. And just stay focused on something “
Jerrone was born in Pontiac, Michigan, but grew up bouncing between the homes of relatives and foster care. Along the way, he dealt with abuse, mental health issues, homelessness and the disease that would eventual steal his life. Through it all, he persevered, and was a shoulder for others to lean upon.
Nashawn Lariviere, 25, first met Jerrone at a youth leadership camp about a dozen years ago. “Jerrone was the kind of person that if you just him it was like you had known him for years.”
Much like Chadwick Boseman, the star of Black Panther made movies for five years while dealing with cancer, Jerrone never let his illness stop him from living his life and helping others. “He could be in a lot of pain, participate and go lay on a heating pad for a couple hours, then come right back out,” Nashawn said. “You would never know he had that sickness.”
As an orphan himself, Nashawn said he felt like Jerrone was his brother.
“Imagine looking for your road that you need to go home. It’s a long, dark street. There’s a light, one street light. And you see it and you see the street and say, ‘Oh, I’m not lost.’ That’s what it was like knowing Jerrone.”
Despite an insurmountable amount of adversity and challenges, Jerrone never lost his faith or compassion for others. He joined the COHHIO Youth Empowerment Program at age 14 and developed a strong passion and voice for advocating for others.
Jerrone was a founding member of the NAMI Ohio YouthMOVE chapter and became a strong advocate for mental health as well as homelessness and improving the foster care systems. While he struggled with his own challenges related to depression and PTSD, he never let anything keep him from participating in advocacy. He was a featured speaker at the YouthMOVE Resiliency Ring and many state and regional conferences.
Jerrone was a fierce supporter of the work of NAMI Ohio and was particularly interested in helping break stereotypes and stigma regarding mental health in the African-American community. He often shared his personal story to help inspire resiliency and was a peer supporter and mentor to many new advocates.
John Dellick, 26, another friend of Jerrone’s who is a senior at Cleveland
State University, met Jerrone through YouthMOVE. He often picked up Jerrone in Akron for trips to YouthMOVE meetings in Columbus. Jerrone never complained about his illness or the pain he was in, Dellick said. “He was definitely a soldier. He was constantly in and out of the hospital. But he didn’t let it overflow onto other people.”
“Talking to Jerrone always inspired me,” John said. “I believe every life has a purpose. Although Jerrone’s life was not as long as I would have hoped or he would have hoped, he never wasted a second of it.”
Family care homes for Ohio’s severely mentally ill have faced enormous challenges because of COVID-19 and NAMI Greater Cleveland recognized the need with a helping hand.
The NAMI affiliate partnered with the ADAMHS Board of Cuyahoga County to identify support for home operators who had been working hard to try to educate their residents, but said they felt like ‘broken records’ with the information.
NAMI reached out to home operators with phone calls, several rounds of email, and a mailing. The affiliate also scheduled education events, facilitated activities to encourage residents to stay home, and even provided a free meal for residents and staff participating in the event.
NAMI Ohio will match any donation dollar-for-dollar up to $5,000. Mental Health disparities disproportionately affect the African American community. With stigma and suicide rates on the rise, Central State University (CSU), a historically black college in southern Ohio, commits itself to reducing barriers to mental health care for its students. NAMI on Campus, a student led mental health program, is one major way CSU engages students, faculty, and staff in their commitment to reducing barriers, increasing access, and raising awareness of the need for mental health care for all.
CSU NAMI on Campus Virtual Walk Flyer
NAMI Ohio, “the state’s voice on mental illness” is governed by a 28-member board of directors. There are six members from four different regions of the state; three At-Large members and a Consumer Council representative. This is a very diverse group of members consisting of various genders, race, social-economic backgrounds, people living with mental illness and family members.
In May 2020, NAMI Ohio recognized that there is disparity in healthcare, especially mental health care. There is a giant gap in care as it relates to African Americans.
Over the past two and a half months, a number of meetings have been held and quite frankly, some of those meetings were uncomfortable. The board members discussed issues and how each of our lives are so different. NAMI Ohio is proud to present our Social Justice Statement that not only identifies our position but, more importantly, will guide our commitment to enhance our advocacy, education, and support in these under-served communities.
As you will see in this statement, we are asking all Ohioans to join us to eliminate public policy and societal practices which perpetuate prejudice, stereotypes, and discrimination resulting in inequities and mental health disparities.
This statement was approved at the NAMI Ohio board meeting held Saturday, August 22nd. Today, we start our journey on this extremely important issue. We are excited that we have an opportunity to make change.
NAMI Ohio Social Justice Statement
NAMI Ohio is the voice for all Ohioans with mental illness regardless of age, gender, race or ethnicity, national origin, religion, disability, language, socio-economic status, sexual orientation, or gender identity. The impacts of structural and systemic racism on the mental health needs of Ohioans who are Black, indigenous, and people of color are real and devastating. The emotional, psychological, and physical manifestation of trauma negatively impact mental health and lead to mental health disparities. We believe that all individuals including communities of color and people with mental illness must be treated with respect and dignity and receive equitable health outcomes and full inclusion. NAMI Ohio denounces racism and racial discrimination in all its forms. As Ohio’s voice for mental illness, we will take action to make change through word and deed. We ask all Ohioans to join us to eliminate public policy and societal practices which perpetuate prejudice, stereotypes, and discrimination resulting in inequities and mental health disparities.
Mental illness and racism have been unwelcome visitors to Etta M. Almon’s 80 years of life. Hard times may have bent Etta but they have not broken her. She is a retired nurse, parent, boxer, and a dedicated board member of the National Alliance on Mental Illness of Ohio (NAMI Ohio).
As with many members of the NAMI family, Almon’s connection to NAMI, the nation’s largest volunteer mental health advocacy organization, is personal. Her son, brother, sister, and uncle have struggled with mental illness over the years.
As an African American, Etta said she realizes there is a “lack of trust and not enough people to provide mental health care in the African American community. We need more education on both sides.” Etta is working to involve minority churches, African American sororities, and medical organizations to improve mental health care in the community.
Etta now lives in Columbus but was born in Georgia where racial inequality was an everyday fact of life. When she was seven years old, she had the terrifying experience of seeing a cross burned in her neighbor’s yard just across the street from her own home. Additionally, stories circulated of black people being lynched, she said. Compounding her fear, Etta’s father was away at the time in Cincinnati where he had gone to find work in a factory.
“We eventually moved to Cincinnati because we were afraid. They said, ‘The next time we’ll kill you.’ The family made the move to Ohio in 1947. Etta still remembers her uncle taking the family to the train station in a horse-drawn wagon.
While things were better in Cincinnati, Etta was unable to escape racism entirely. “There were certain areas in Cincinnati where we weren’t allowed to go unless you worked there. I remember they took us to a park when I was in junior high school and some people started shooting at us.”
While battling racism and inequality, a new battle began. Mental illness began rearing its head in Etta’s family. Her son, Leroy, began showing symptoms when he was in his late 20’s, she said. While he was living in Dayton, her son traveled to Columbus where he was involved in an automobile accident that was seemingly his fault. He arrested because of a conflict with the police, likely due to his mental illness, Etta said. “They beat him severely. He had never been arrested before, didn’t have a record, and had never got in trouble. It was very traumatic for him and for me.”
The trauma of the arrest affected Leroy so severely that he began speaking less and less, and eventually stopped talking altogether. He now lives with her, and only communicates by writing.
Etta also lost her uncle, Ivory Wansley, as a result of untreated mental illness in his 40’s. She said her uncle was taken to jail after having a mental breakdown – and never returned home. He died in jail, apparently as a result of being beaten, she said.
Etta worked 15 years as a nurse in the traumatic head injury department at Ohio State University hospitals. Retired now, she remains active by playing tennis, weightlifting and boxing, an unusual form of exercise she took up at the recommendation of her neurologist. “It helps your balance and helps your mind by how they tell you to follow along.” She is the only woman boxer at TITLE Box Club in Grandview.
Etta said minorities have made strides in civil rights and mental health awareness. “We’ve made some progress, but we’ve got a long way to go.
There’s still a lot of work to be done, but now at least we’re having a discussion about it which is a good thing.”
Etta continues her fight against stigma and inequality in her capacity as a board member of NAMI Ohio. NAMI Ohio is blessed to have Etta help us create change that is so desperately needed. Thank you, Etta!