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The Mean Disease
Written by Alan Johnson, NAMI Ohio
Mental illness is a mean disease.
It can come unexpectedly, hide in plain sight, and cause unbearable grief.
Kristin Jonsson knows that grief first-hand. She has suffered every day of the two years since Kristine, her smart, kind, artistic, sensitive and beautiful daughter, took her own life at the age of 16.
Katherine, Kristine’s younger sister, knows the mean disease, too. “When I first found out, I was in shock,” she said. “I didn’t fully understand what had happened.”
That’s where the story ends for too many people who have lost a loved one to suicide. They simply go on grieving.
But not this story. Not for Kristin and Steinn, her husband, or for Katherine and her brother, Daniel. Not for a family determined to make Kristine’s life stand for something beyond how it ended,
“I don’t want other families to go through the pain my family is living through,” said Katherine, now 12. “I want people to know that it’s ok to not be okay, and that it’s important to reach out for help.”
With Katherine taking the lead, the family participated in the annual NAMI Walk sponsored by NAMI Franklin County. Katherine raised $2,223 as part of Team Kristine which raised $4,573. Both figures were tops in the Franklin County event which collectively brought in $68,043.
Katherine and her family were honored with awards at the NAMI Franklin County annual meeting on Oct. 5th at the Wells Barn at the Franklin Park Conservatory. Katherine received the Youth Advocate of the Year Award, and the family was recognized for being the top walk fundraisers.
The Jonssons received not one but two standing ovations.
Two Years Ago
It was just two years ago, in the midst of the isolation of the COVID19 epidemic, that Kristine shocked her family by ending her life.
“We weren’t remotely prepared,” said the girl’s mother. “None of this was on our radar. To outside appearance, she was happy and doing better. We know now that she clearly had depression, but it wasn’t the stereotype that people think of. We were blindsided.”
Kristine did not threaten suicide, but she left her family letters to be read after she was gone explaining her struggle with depression and anxiety. “She knew she could have asked for help, but she didn’t. Mental health in our family wasn’t a stigma. I have a history of depression and anxiety and she knew that,” Kristin said. “I don’t know why she felt she had to hide it. I don’t know if it was because of the pressure from the outside and the society we live in that does not treat people with mental illness well.”
Meeting of Two Worlds
Kristin met her future husband, Steinn (friends call him Stan because his name in Icelandic is too hard to pronounce) when they were both working in California. After they married, and with Kristine, their first-born on the way, they moved to Ohio, where Kristin is from. Stan is from Iceland. The couple and their two children, Kristine and Daniel, lived in Iceland for three years before returning to Columbus. It was there, in the land of fire and ice, that Katherine was born. She has dual citizenship in the U.S. and Iceland.
The couple noticed that Kristine, their first child, was struggling.
Kristine was a “cuddly and sweet baby,” but “was never good at sleeping” and had a difficult time when separated from her family members. “We noticed when she was three and we put her in pre-school for the first time, she cried and cried,” Kristin said. “That’s normal at first but she never got past it.”
By age 6, Kristine had been diagnosed with both separation anxiety and sensory integration disorder, which made her extremely sensitive to being touched and wearing certain kinds of clothes. Coupled with the sleep disorder, the young girl was dealing with “a trifecta of issues,” her mother said, made more difficult by the upheaval of the family’s move to Iceland and back to Ohio three years later.
To appease Kristine when they returned to Columbus, her parents got her a cockatiel which the family named Rainbow. The bird was special to Kristine, her baby. She trained Rainbow to wear a leash so she could take him on walks perched on her shoulder. She enthusiastically introduced him to people she met.
Smiling Depression
The Jonssons sought help for their daughter, getting her counseling, occupational therapy, and medication. It all seemed to help. By the time Kristine was 12, she was doing well academically in school, had made many friends, and was liked by her teachers. She was a talented artist, producing dozens of drawings and paintings.
“After 12, what we think happened is she started to hide it,” her mother said. “We thought she was doing better. She wasn’t crying anymore. She had all these friends. She took these advanced classes because she wanted to. We didn’t push her…. We thought she was a teenager forming her own identity.”
But inside, things were different.
“There was this disconnect between how she appeared on the outside to everyone, including us, and what was going on the inside.”
“We do everything to make our home as welcoming and gentle and kind and loving as we possibly can, but we still live in society,” Kristin said. “We can’t control those outside influences. I know kids in high school joke about suicide. They joke about mental illness. Inside my heart, I wonder if she didn’t reach out for help because she heard it from other people.”
The Little Sister
There was a six-year age difference between Kristine and Katherine, but they enjoyed being together, drawing, doing arts and crafts, listening to music, or reading side by side. Kristine introduced her sister to some of her favorite books, including Harry Potter and the Wings of Fire series.
“She was kind and funny and could be sarcastic, too,” Katherine said. “We were very close.”
When she lost her sister, Katherine was overwhelmed with emotion, sad and confused, but also somehow feeling guilty that she should have known Kristine was so troubled. “I know that I couldn’t have done something. But I feel like I should have.”
Finding NAMI
Finding NAMI broke through the gloom of grief and sadness for the Jonsson family. Kristin read about the NAMI, the largest grassroots group in the nation dedicated to help those with mental illness and their families, and decided to investigate.
“NAMI has a wealth of information,” Kristin said. “It’s accurate and it’s helpful. They are trying to make a difference in the world in a way that hardly anyone is trying to make a difference. It’s cool to raise money for cancer. But raising money for mental illness is just as important.”
“I thought it was awesome that there are people that can form an organization and make things better about mental illness,” Katherine added.
Kristin embraced NAMI’s mission of ending stigma about mental illness, something she felt acutely when she lost her daughter.
“People treated her passing differently than they treat it when someone dies like in a car accident, for example. There was some blame and some stigma and an unwillingness to even acknowledge that she existed. It was very hard for me.”
Asked how she thought her big sister would feel about the fundraising and work she’s done to raise awareness about mental illness, Katherine paused and said through tears, “I think she would be a little shocked, but she would be impressed and proud of me.”
Katherine says the ordeal has inspired her to think about becoming a teacher and help future generations of kids overcome the stigma that may have contributed to losing her sister.
Kristin likewise thinks her oldest child “would be very proud of Katherine. She would look down and give her a big hug.”
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2024 Training Dates
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Parent Advocacy Connection Informational Session RFA Opportunity
The Parent Advocacy Connection (PAC) Program is seeking organizations for SFY2023 (July 1,2022-June 30, 2023) to host PAC Parent Advocates and implement the PAC Program within an assigned region.
Please join us on May 3rd at 10:00 AM (ET) on Zoom to learn more about PAC, the purpose of the program, the goals of the program, and the funding opportunity. Please note that attendance (from someone at your organization) at the Informational Session is required to access applications.
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What is PAC?
Parent Advocacy Connection (PAC) is a grassroots organization of trained parent advocates who reflect the cultural and ethnic make-up of the families they serve. When children require services from multiple sources (i.e., mental health, schools, juvenile courts, developmental disabilities, and alcohol/drug addiction services agencies), it can be difficult for parents to navigate their way through these various service systems. Families may become overwhelmed and have difficulty expressing their concerns and the needs of their child(ren). Ohio’s service coordination process recognizes this challenge and has made support for families available through the Parent Advocacy Connection (PAC).
This program is overseen by NAMI Ohio and is funded by the Ohio Departments of Mental Health and Addiction Services, Job and Family Services/Ohio Family Children First, and the Ohio Department of Youth Services.
Pandemic focuses funding on mental health, but advocates say more is needed: Coping through COVID
CLEVELAND, Ohio – Ohio Gov. Mike DeWine’s budget recommendations increase funding for mental health and addiction treatment services that have been vital throughout the COVID-19 pandemic.
The proposals have garnered the support of organizations addressing the challenges created by the pandemic. But do they go far enough to address the potential mental-health fallout of the crisis, which experts say could last even longer than the pandemic itself?
Advocates said the budget recommendations are a significant step. They’re grateful to see an increase amid the crisis, though they say more investments could be needed to create long-term stability for services that have traditionally gone underfunded.
Investing in mental health and behavioral health is critical for Ohio’s “return to normal” after the pandemic, said Scott Osiecki, the CEO of the Alcohol, Drug Abuse and Mental Health Services Board of Cuyahoga County. Issues like anxiety, depression, stress and grief could linger well after the coronavirus vaccine is widely available.
“It’s a basic need, like housing,” Osiecki said. “Behavioral health is really important to the overall health of the community.”
The cleveland.com series “Coping Through COVID” aims to help Northeast Ohio residents manage the stress of COVID-19 by examining by examining the mental health aspects of the pandemic. The series tells individuals’ stories and explores various challenges and coping strategies with experts.
DeWine’s budget recommendations include a 10.9% increase in funding for the Ohio Department of Mental Health and Addiction Services in fiscal year 2021, and another 1.9% increase in FY 2022. The state legislature could alter any of the recommendations before approving a final budget.
Terry Russell, the executive director of the National Alliance on Mental Illness (NAMI) for Ohio, said he is “cautiously optimistic” the legislature will adopt the DeWine’s recommendations. But he cautioned that reducing the proposed level of funding could leave Ohio scrambling to address the fallout from the pandemic.
“Any reduction of that would be a disaster,” he said. “It would literally put the mental health system in crisis.”
For examples, experts point to domestic violence programs. They say the pandemic has created a “perfect storm” of risk factors for domestic violence, and more than half of Ohio’s domestic violence programs have reported an increase in the number of people seeking shelter or requesting services.
DeWine’s budget includes $1 million per fiscal year for domestic violence programs, but the Ohio Domestic Violence Network is lobbying for an increase to $5 million per year, the organization’s executive director Mary O’Doherty said.
Domestic violence programs have been hurt by recent cuts to grants from the Victims of Crime Act, the federal program that provides money for therapy and other services. Ohio’s domestic violence programs lost $7.7 million for the next fiscal year, and have seen budget reductions of nearly 40% over the past two years, O’Doherty said. The network is asking the state to provide more money to make up for those losses.
“We are a pretty critical part of the social safety net, and we just need to do a better job of funding these programs,” O’Doherty said.
Addressing the issues exacerbated by the pandemic
Advocates have long argued that mental health, addiction treatment and domestic violence programs have been underfunded in the U.S., resulting in limited access to treatment in many communities. The problem has been exacerbated by the pandemic because many providers were forced to limit in-person services and switch to telehealth.
Some of DeWine’s budget recommendations target the issues that have been a focus during the pandemic. For example, the recommendations include $2.25 million per year to help parents, pediatricians and teachers identify signs of mental health conditions. Experts say that could be critical, because it’s unclear how children will be affected by taking classes from home for a full year.
The recommendations maintain funding in several key areas for the ADAMHS Board, Osiecki said. The Northeast Ohio collaborative – which includes the ADAMHS Boards in Cuyahoga, Lorain, Lake, Geauga, Summit and Medina counties – could get $7.5 million for withdrawal management and crisis stabilization funding.
The recommendations also increase the state’s continuum of care budget from $76 million to $82 million; the line item pays for services like suicide prevention, crisis response and treatment and recovery services, Osiecki said. The ADAMHS Board is hoping the final budget approved by the legislature includes an increase of closer to $15 million instead of just $6 million, he said.
The recommendations also begin to address some of the state’s long-term needs, advocates said. NAMI Ohio has been advocating for years for funding for people with a debilitating mental illness who often wind up in jail or a homeless shelter.
The budget also provides funding to help people living with debilitating mental illness. That group, which Russell estimated to include 50,000 people living in Ohio, have often lacked the community support they need. The result has either been an increased burden on their families or homelessness or jail time, he said. The governor’s recommendations include $5.5 million per year to help various systems coordinate to meet their needs, and $6 million per year to improve residential facilities for adults with a serious mental illness.
Domestic violence services struggle for funding
Advocates acknowledged that money is tight during the pandemic, but there are certain areas where they’d like to see more investment.
Domestic violence services have already seen budget cuts of roughly 40% over the past two years and are expecting another 30% cut in VOCA funds next fiscal year, O’Doherty said. The result is that many shelters have been forced to lay off staff, reducing the number of workers and counselors who are available to assist women and children in crisis.
Domestic violence programs could use additional funding to hire more staff, O’Doherty said. Staffing limitations are causing many programs to struggle to meet the needs of women in crisis who are seeking help.
“Right now, our programs turn away people every day,” O’Doherty said. “It would help us meet the need.”
O’Doherty said part of the issue with funding domestic violence could be that it often goes underreported, so it’s difficult to pinpoint how prevalent it is. But a U.S. Centers for Disease Control and Prevention survey from 2015 found one in five women experience severe physical violence from an intimate partner during their lifetime.
During the pandemic, many advocates have worried that women being isolated at home with an abuser led to a decrease in calls to domestic violence hotlines early in the crisis. O’Doherty is hopeful that attention to the issue could persuade some lawmakers to increase support.
“It’s a significant social issue that families live with day in and day out. It’s just like substance abuse or mental health, or any other kind of social issue society deals with,” she said.
Moving forward
To meet the state’s long-term mental health needs, NAMI Ohio is primarily focused on changing the way the money is used, Russell said. He believes services should take an individualized approach to care, rather than a one-size-fits all approach to mental illness.
“We need to be looking at the individual with the mental illness, and not the system,” he said.
Advocates are also focused on the employees and counselors who provide services, because the strain on the workforce isn’t unique to domestic violence programs. Agencies that provide mental health and addiction treatment services have also seen significant turnover during the pandemic.
Investing in a pipeline to train and retain workers could be critical for the long term, advocates said. That would help reduce turnover and help agencies provide better services.
“The workforce was struggling even before this,” Osiecki said. “There’s not enough people to provide services. And this is throughout the whole state. Actually, the whole country.”
Are you, a family member or a friend in crisis? or do you need mental health or substance use services? Here’s a list of agencies that can help.
- Frontline Services: 24-hour crisis hotline 216-623-6888
- Suicide prevention hotline: 800-273-TALK or 800-SUICIDE
- Cuyahoga County suicide prevention, mental health/addiction crisis, information and referral hotline: available 24 hours at 216-623-6888
- National Alliance on Mental Illness (NAMI) Greater Cleveland: Non-crisis hotline 216-875-0266 (Monday through Friday, 10 a.m. to 4 p.m.)
- Alcohol, Drug Abuse and Mental Health Services (ADAMHS) Board of Cuyahoga County: Online new service finder tool
- Ohio Department of Mental Health and Addiction Services: Online resource for COVID-19 related information and services available amid the pandemic
- Ohio CareLine: Emotional support call service from the Ohio Department of Mental Health and Addiction Services. Toll-free at 1-800-720-9616
- Ohio Crisis Text Line: Text keyword “4HOPE” to 741 741
- Find Substance Use Disorder and Mental Health Treatment: https://findtreatment.gov
- Disaster Distress help line: available 24/7 at 1-800-985-5990 or TTY at 1-800-846-8517. Also available by texting “TalkWithUs” to 66746; Spanish-speakers can text “Hablanos” to 66746.
Governor DeWine has formed a “Homelessness Team”
FOR IMMEDIATE RELEASE:
March 30, 2020
(COLUMBUS, Ohio)—Ohio Governor Mike DeWine today announced that the Ohio Department of Health will extend its order to keep schools closed through the end of April.
Ohio’s previous order was set to expire on April 3, 2020. The new order will extend the closure through May 1, 2020.
“There is the real possibility that our schools could stay closed longer than this, but we want to give parents and teachers as much notice and flexibility as we can,” said Governor DeWine. “Schools should continue to do what they’re doing now — providing the best remote learning that they can, serving meals to students in new ways, and planning for what the rest of the year may look like.”
HOMELESSNESS TEAM:
Governor DeWine announced today that he has formed a “Homelessness Team” to help people who may rely on homeless shelters, domestic shelters, group homes, and recovery housing – all of which pose challenges for social distancing.
The Coalition on Housing and Homelessness in Ohio, the Ohio Chapter of the National Alliance on Mental Illness, and Ohio Recovery Housing are working as part of this team to provide localized guidelines for these shelters. They will also work to incorporate these populations into the state’s ongoing planning for access to healthcare through community health centers and planning for quarantine or isolation.
In addition, the Ohio Housing Financing Agency Board has approved $5 million in unrestricted Agency General Fund Reserves to be used for Homelessness Prevention and Rapid Rehousing funds and Emergency Rental Assistance that will be distributed through the state’s nine Continua of Care.
The Ohio Development Services Agency has also established a $1 million Emergency Shelter Gap Funding Program to support emergency shelter providers during the COVID-19 state of emergency. The Development Services Agency will reallocate Community Development Block Grant dollars to emergency shelter providers to meet immediate needs for homeless individuals and households.
Further, the Ohio Department of Mental Health and Addiction Services is directing some federal opioid response funding to help people living in recovery housing or engaged in treatment to maintain their current housing and prevent homelessness. Federal funds will be deployed to cover additional expenses that adult care facilities are taking on because of COVID-19.
The CDC guidelines and information about all of these funding opportunities are available on coronavirus.ohio.gov, and anyone with questions can email COVID19Housing@mha.ohio.gov
BUSINESS ADVISORY GROUP:
Governor DeWine also announced today that he will develop a business advisory group to convene over the phone to:
- Ensure businesses are doing everything they can to keep their employees safe;
- Provide recommendations (to the greatest extent possible) to mitigate the negative impact the COVID-19 crisis is having on our economy in Ohio;
- Provide recommendations on building a platform for economic recovery.
More details on this group will be released in the near future.
PRISONS AND PPE:
Due to the shortage of PPE in Ohio, the inmates incarcerated at Ohio Department of Rehabilitation and Correction prisons have begun making some of these necessary healthcare supplies.
So far, inmates have made 500 hospital gowns and will make 44,000 more when they get additional fabric. Inmates will also begin making cough masks – similar to surgical masks — and will be able to make 5,000 a day up to a total of 2 million. They will also make hand sanitizer. and face shields. Each prison with its own workshop will also make masks for the people in those prisons.
CURRENT OHIO DATA:
There are 1,933 confirmed cases of COVID-19 in Ohio and 39 deaths. A total of 475 people have been hospitalized, including 163 admissions to intensive care units. In-depth data can be accessed by visiting coronavirus.ohio.gov.
Video of today’s full update, including versions with foreign language closed captioning, can be viewed on the Ohio Channel’s YouTube page.
For more information on Ohio’s response to COVID-19, visit coronavirus.ohio.gov or call 1-833-4-ASK-ODH.