On Being Awarded the NAMI 2016 Outstanding Member

By Toni Hoy | Jul. 25, 2016

 

What do Patrick Kennedy, Rick Raemisch, and myself have in common? Each of us saw something that we felt was ethically and morally wrong. Each of us fought a big system to change it. Each of us succeeded.

Each of us is only one person.

At the 2016 NAMI National Convention, Patrick Kennedy spoke about his beloved Aunt Rosemary’s intellectual and mental illnesses and his own struggle with alcoholism and addiction. Kennedy marveled at how the average family could access treatment for physical health, but not have equal access to mental health treatment. Kennedy recognized the absurdity of the notion that a doctor would perform a medical exam and not do “a check-up from the neck up.” After all, the brain is the most powerful organ in the body and it controls every other part of the body. He also questioned why health coverage was so much easier to access for physical health compared to mental health. This concept bothered him at a fundamental level. So, he brought the Mental Health Parity Act to the U.S. Congress.  Imagine his surprise when some of his colleagues opposed the bill, arguing that the brain isn’t part of the body. To this day, Kennedy finds it hard to believe that Congress actually spent years arguing about whether the brain was actually part of the body and whether it should be given equal status as arms and legs.  

Rick Raemisch is the Executive Director of the Colorado Department of Corrections. During his acceptance speech, he spoke of how his partner was assassinated by a convict who was released into the community after a long stay in solitary confinement. While Raemisch grieved for his partner, he grappled with how anyone could expect a former inmate to be successfully released into the community when the individual had spent months or years secluded in a tiny cell, void of any of human contact. He decided to put himself in solitary confinement for 24 hours to assess the effects of solitary confinement on a person with a healthy brain—that experience led him to believe that placing anyone in solitary confinement was inhumane, especially for someone living with mental illness. This concept bothered him at a fundamental level. Raemish led a successful charge to ban solitary confinement for inmates living with mental health conditions in Colorado and has worked for solitary confinement alternatives.

I am known as an advocate to end the practice of trading custody of children in exchange for mental health treatment. Why? Because it happened to me. Like Rick Raemisch and Patrick Kennedy, this concept bothers me at a fundamental level. Like Patrick Kennedy, the fact that anyone could accept the practice, let alone encourage it, is unfathomable to me. I helped draft and pass the Custody Relinquishment Prevention Act because kids shouldn’t have to choose between being mentally healthy and being alone or being mentally unwell and remaining a part of their families. They deserve both! And it’s disturbing to me that anyone would think otherwise.

Advocates are born when an issue bothers them at a fundamental level. They fight when they can’t accept the status quo and when they believe others shouldn’t either.

I can’t say for sure where Rick Raemisch and Patrick Kennedy got their inspiration to fight, but I know where I got mine: NAMI Barrington President, Maryrose Peters. I was at the point of giving up on advocacy when she told me the story about how one person started the mental health courts in Illinois. One person! I really thought about that. And I thought about my oldest son, who’d just become a U.S. Marine and was on his way to Afghanistan. Marines are the first to go in and the last to come out. They don’t quit! I didn’t know if I could even make a dent in the system, but I felt a little more wind under my sails that day. As hard as it was, I didn’t quit. I couldn’t.

As I waited to receive my award in Denver, my mind wandered back to my first NAMI National Convention in Chicago in 2011, where I watched NAMI members from all over the country receive national awards. I remembered being in total awe of all that they accomplished. It feels surreal, and a little overwhelming, to know that I have joined their ranks. I’d like to share my acceptance speech with those of you who were not there in person:

No one comes to NAMI because things are going well. I joined at my lowest point, but I was quickly inspired when I learned that one person started the adult mental health courts in Illinois. One person! I left that meeting thinking, "I am one person." 

So, I told my story to newly elected State Representative Sam Yingling. When I finished, he said, "Let me understand what you are asking me to do. You're asking me to introduce a bill that affects five social service agencies, that are going to oppose this bill--a bill that costs money, when our state is a trillion dollars in debt. Is that what you are asking me to do?"

And I said, "YES." 

He said, "Can you wait until I get sworn into office on Friday?"

I soon learned that State Representative Sam Yingling had an impossible bill of his own. The Marriage Equality Act. You see, Sam was one of four openly gay legislators. In 2013, he proposed to his partner at the bill signing in the Governor's mansion. 

For my impossible bill, he partnered with State Representative Sara Feigenholtz. When she heard my story, she became one determined legislator. 

My family rejoiced when the Custody Relinquishment Prevention Act passed through both chambers unanimously, with strong NAMI support. I called State Rep. Sara to thank her. She told me that in over 20 years of serving as state representative, never had she been so forthrightly challenged over any one piece of legislation. I thanked State Rep. Sam in person and congratulated him on his marriage. He told me that it was my visit to his office years' earlier that he first felt the full weight that he carried as a state legislator. 

I am highly honored to receive this award. And I want to leave you with a quote by Henry Ford. "The airplane takes off AGAINST the wind, not with it!" You are one person and you have NAMI support, so take off. And do the impossible!

Toni Hoy is a leading advocate and the author of “Second Time Foster Child.” She helped draft and pass Public Act 98-0808, the Custody Relinquishment Prevention Act in Illinois—an act which forms an inter-government agreement between social service agencies to help families of children with severe disorders to obtain treatment without being forced to involuntarily relinquish custody of their children. As a gubernatorial appointee, Toni represents parents on the board of the Community and Residential Services Authority. She serves on the Advisory Board for NAMI Barrington Area and is a state trainer for Family Support Groups. Toni is the recipient of multiple awards including the 2016 NAMI Outstanding Member, the 2012 Family Defense Center Parent Advocate Award, and a congressional award in 2014 called “Angels in Adoption.” Toni now works as a freelance writer and Special Education Advocate and System’s Consultant for SEAS Consulting. She has been married to her husband, Jim, for 29 years and they have four children—three that have one or more mental illnesses. 

Comments
Toni Hoy
Donna, you have a formidable challenge ahead of you, but you are not alone. It took me 6 years to get legislation passed. Many other parents across the country walk in your shoes. If I could give you any advice is would be to find them and partner with them. That's how grassroots advocacy starts and that's how NAMI started. The other thing I wish I had done earlier was not only to bring the problems to your legislators, but also bring them solutions. Do as much research as you can and ask others to help. And never give up!
6/24/2017 9:02:11 AM

Donna Johnson
Its 4:00 am i just woke up I was just thinkiing about my son.Today is his Birthday hes 28 yrs old its also a very special day for him .Hes in the Mental health program in cobb county.he is phasing up to Phase 4 and he just got a job and his dad bought him a car so he could drive himself to work. I am excited for him hes overcome so much in the past two yrs.He went from playing Semi Pro football living his life dreams. never in our wildest dream we could imagine at the age of 25 he would get sick.in one day his and our life changed.My son lost his memory he went missing .and he commited a crime all in 5 mos. Our lives were turned upside down. Now he lives wirh the diagnosis of a mental ilness. And i have this deep feeling like so much more need to be done for males who have mental illness Men see things so differantly.I have all ways been my son advocate from birth .I must do more .there is a missing link in the mental healrh court program parents are not allowed to advocate for there adult children who have mental illness .i was told its court not a resort we deal wirh people base on the crime . just because they have Mental health issues they are no differant then any body else.Something is missing. There is a difference it called Mental illness.Thank you for your story.it has motivated me to get involved for all who need a extra voice.
7/28/2016 4:31:29 AM

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