2008 National Convention June 13-16, Orlando, FL Rosen Centre Hotel.

2008 National Convention

June 13-16, Orlando, FL

Rosen Centre Hotel

2

One Person Can Make a Difference: Learn to be a Catalyst for Change and

Treatment

A Needless Human Tragedy: Untreated Mental Illness & Illinois Law

By Karen L. Gherardini

3

Every day, my heart aches for a man whose life was forever

altered by a cruel disease and an unfair and inflexible law.

His suffering prompted me to take on the state of Illinois and fight to

change a 20-year-old law. Today, it is in his honor, that I share our

story...

4

Two of my loved ones have paranoid schizophrenia.

One understands she has a brain disease; the other falls into the 50% of those with that disorder who lack insight into their illness; the symptom known as anosognosia.

5

One of my loved ones lost 15 years of his life because of the narrow, restrictive, and inflexible way our involuntary treatment law was written in Illinois.

We were forced to watch my loved one, the same person who had always been my protector, withdraw into a private hell we could not reach.

We were helpless to ease his suffering…

6

Out of my anger, frustration, and deep sadness grew an overwhelming desire to change the very law that stole his life.

After futile attempts to convince others more qualified than me to change the strict treatment placement standard in our state, I concluded that the only way to make it happen was to do it myself.

7

I have to be honest with you. I was extremely naïve about politics.

My technology skills were lacking to say the very least!

My time was limited; I am a wife and mother and a full time special education teacher.

During one year and a half span of time while I was working to change the law I was also working to receive my master’s degree.

Within an eight month time span my grandmother passed away; my mother-in-law and my dad both died of cancer. I helped take care of each…

8

Due to stressors that were out of our control I had to deal with the re-emergence of both my loved ones mental illnesses and one involuntary re-admission.

We finished our basement with wood and stone. I did all of the staining and varnishing.

I cried many tears; I drove many miles, ran up my phone bills, slept little, and the high point was I did not have to worry in the least about gaining weight!

I tell you all of this because no one should say they are too busy or not knowledgeable enough to stand up and fight for those they love.

9

Once I made up my mind that I was going to change the law, as a teacher, I knew the first thing I had to do was my homework.

Therefore, I obtained a copy of Missouri’s law because, at the time, I knew it was written better than Illinois law…and it was FREE!

Next, I tackled the Illinois version…that copy cost me $20.00!

I told you my technology skills were lacking and I hadn’t yet figured out how to use the internet! I simply picked up the phone… called and requested a copy.

I reviewed the legislation and found the sections that dealt with the issues I felt needed to change. Once I had gotten this far…

10

I also realized that my perspective was only from a family member’s point of view.

So I made up my mind if I was going to do this; I was going to do it correctly.

I went back to everyone who had been involved with my loved ones case.

I gathered input from doctors, nurses, State’s Attorneys, judges, counselors, case managers, and social workers.

I compiled the information and went to Illinois State Senator Frank Watson.

Senator Watson, believing in the changes I was seeking, asked me to go to Springfield and start the process for my proposed reform.

11

In Springfield I met with Angie Sidles, a Senate Staffer. Angie, proved to be invaluable through the years. I, along with my aunt, Brenda Altadonna (a tremendous moral supporter) talked to numerous committees until finally a task force was formed. We met on September 11, 2002.

Only a few of the 29 members took me seriously.

Most didn’t believe we had a chance and some were adamantly against any change.

One even voiced his opinion that many people like me had come “their way” before but they had “always managed to get rid of them.”

Little did he realize the driving fire those words created.

12

Two attorneys from the task force were my saving grace.

They each taught me a great deal about the law, politics, and small steps toward success.

They fed me the documents I needed to review.

They shared their knowledge and their time.

We were all from different parts of the state but we emailed and discussed issues on the phone.

13

I was then a cheerleading sponsor at the small school district in southern Illinois where I teach.

Time was limited; therefore I did a great deal of my research while riding the bus to ballgames.

I took a flashlight and a highlighter, a pad of paper, a pencil and a pile of commitment statutes with me.

I reviewed all fifty states’ and DC’s statutory and commitment standards.

14

Teachers in southern Illinois do not make a great deal of money.

Therefore, during the summer months my husband and I, along with our son, re-roof houses to help make ends meet.

This happens to be my husband’s idea of a great summer job for teachers and he says it keeps us in shape!

15

I was on the phone constantly attempting to sway task force members and others to my way of thinking.

I needed to be accessible so I put my cell phone in my pocket and made phone calls when we took a break.

Thanks to technology, if anyone needed to return my call I could even be reached on the roof!

16

Finally, our bills were drafted and I once again went before numerous committees in the Senate before a compromise was finally reached.

This was a painful lesson for me; the art of compromise.

I wanted it ALL in ONE SHOT…and I was naïve enough to think it was possible!

17

This is where I learned about amendments.

I was horrified to find we were going to move at a snails pace!

We were wasting time and time meant lives.

The day of compromise also taught me about parking at the State Capitol!

I received 5 parking tickets because it took us all day and I could not leave to plug the meter!

(The repercussion from the tickets is a story in itself!!! They are only giving me 15 minutes! So on we go…)

18

Both bills passed the Senate and the House.

After a two-and-half year battle, SB199 and SB200, a small part of our proposed reform, became law during the summer of 2003.

19

This was a step in the right direction, but it wasn’t enough.

That became painfully apparent in September of 2004 when Derek Potts, a man with bipolar and schizophrenia, drove up to the Capitol’s main entrance, walked in, shot unarmed security guard William Wozniak in the chest, walked out, put his gun in the trunk of his car and drove away.

The time had come to return to Springfield and finish what I had started.

20

Senate Bill 1983 unanimously passed the Senate; Senators even shared their stories concerning untreated mental illness…

Personal understanding was finally on our side…but on Thursday, May 12, 2005 AGHAST, I sat and watched SB1983 die in the House.

The committee’s chair, who no longer serves as a member of the legislature, proclaimed that “the Senate will now see that the House can hold bills also” and refused to allow a vote to be taken on SB1983.

This taught me the difference between statesmanship and politics.

Fortunately, HB3812 held half of the language found in SB1983. Governor Blagojevich signed HB3812 into law in the summer of 2005.

21

Senate Bill 234, ably sponsored by…

Senator Dale A. Righter & Representative David R. Leitch,

was our final attempt to bring treatment to hundreds, if not thousands, left to the whims of the symptoms of severe mental illnesses.

Only six legislators voted against the measure. Personal experience with untreated mental illness had hit the House Judiciary I - Civil Law Chair, Representative John A. Fritchey.

22

Governor Blagojevich signed SB234 into law on September 11, 2007 exactly 5 years from the first task force meeting;

making Illinois’ involuntary treatment standard one of the best in the United States.

23

Our current inability to adequately address the mental health needs of our citizens, whether it is child, adolescent, or adult, is precisely why I decided to take my efforts one step further.

I felt the time had come to lay out a strategy for an unprecedented reform of Illinois’, as well as the Nation’s, mental health system.

24

The knowledge and experience gained from my family’s illness and my legislative experiences lead to…

the creation of the Mental Illness Research Foundation of America (MIRFA) and the Persistent Mental Illness Research Fundraising Association (P-MIRFA);

each are Not-For-Profit corporations and P-MIRFA has pending 501C3 status. Our website is www.mirfa.org.

25

First, my uncle, Ralph Hammel, helped me connect with Jim Maloof, a caring and compassionate man.

He was a friend of Danny Thomas, whom he helped start St. Jude’s Hospital for Children.

26

Jim mentored me as I strove to understand the required steps to developing a mental health version of St. Jude’s.

Ralph Hammel, Karen Gherardini, Jim Maloof, & Illinois Representative David Leitch, House sponsor for SB234

27

The Mental Illness Research Foundation of America (MIRFA) was established in August 2004; thanks to the legal assistance of

Bill Crain, Sondra Millner, and his daughter Allison Austin.

MIRFA & P-MIRFA are still in their infancy. Any publicity and promotion in your areas would be greatly appreciated!!!

www.mirfa.org

28

We cannot give my family back the years that have been lost to mental illness.

However, we do have the power to change the future, perhaps for someone you love.

Please remember… a journey begins with a single step; change takes place one person at a time.

Like Senator Watson once told me…one person can make a difference and you have….

I encourage all of you to return to your states and fight for the rights of those we love who do not have a voice to help themselves.

29

Thank you for allowing me to share our story with you today.

If I may be of service to you in the future please contact me at www.mirfa.org

or phone (618) 973-8788.

Sincerely,Karen L. Gherardini

30