Friday, March 09, 2012

Letter to my Senator: Advocacy Works

In the State of Florida, where I, unfortunately, live, every year pretty much we hear that the legislature is going to cut the mental health services budget by millions of dollars. And for the past few years, when I would hear this, I would write letters. Most recently, the threat was $100 million of budget cuts coming down on mental health and substance abuse services, in a state where services are already very underfunded. So I signed a petition, sent it out by email to all my friends and family members, and posted it on Facebook. Then I wrote a letter to my local state senator.

Before you read this letter, I want to clarify that I was not homeless all the time for years. I was homeless intermittently for years. I lived in three shelters, as I said in the letter, but I only stayed a couple of months in each one. So I wanted to clarify that, because after writing this letter in the middle of the night, I realized that someone reading it might think I was claiming to have been homeless all the time for years.

Now that I've clarified that for the readers....this is the letter I wrote to Senator Jones. One of my NAMI advocate friends suggested publishing it somewhere. So here it is.

And the budget did get cut. But by approximately $2 million instead of $100 million, so that is, in its own small way, a victory of sorts. I found that out tonight. I sent this letter a few days ago.

Dear Senator Jones,

I am writing to ask you to vote against the proposed budget cuts to the adult mental health services in the state of Florida that have been proposed by the House and by the Senate. If there is still time left to cast a vote on this issue, I hope that you will vote in favor of your constituents such as myself. I live in Clearwater, and I am a registered voter who regularly votes. I am also an active member of the National Alliance on Mental Illness in Pinellas County, an advocacy organization which works to create awareness about mental illness and provide support for families experiencing mental illness.

My reason for being involved in NAMI is personal. I nearly lost my life to suicide on several occasions due to a serious mental illness called Schizoaffective Disorder. This disorder causes psychosis, including delusions, and auditory, visual, olfactory, tactile, and other types of hallucinations, which people sometimes simply refer to as "hearing voices" or "seeing things". My life was an utter nightmare from hell for seven years while I was undiagnosed, untreated, and floridly psychotic. I could not work, go to college, have friends, or keep a roof over my head for long. I lived in three different shelters over that period of time. I also lived in my car for several weeks.

Today, thanks to treatment at (Name Deleted), which is a community mental health center, I have regained my sanity. I take medications, many of them, and I take them religiously. I get injections at the community mental health center, and I see a doctor there, and a therapist. I have also had a case manager there for six years who kept tabs on me wherever I lived and whatever I did with my time. I returned to college and graduated from St. Petersburg College in 2010, finally, at the age of 34, because I was too sick to do so when I was younger and wandering around aimlessly delusional. I now attend USF in St. Petersburg, where I am majoring in Social Work and Political Science through the Interdisciplinary Social Sciences program. In my spare time, I volunteer with NAMI doing public speaking to community groups, and to law enforcement officers from every police department in Pinellas County through the Crisis Intervention Team Trainings that are held twice each year in our county. I tell these people my story, and I tell them what it is like to be psychotic, so that they can better understand what they are dealing with, when they come across a psychotic individual, and hopefully be able to prevent any unnecessary violence or force. I tell them that the police saved my life from one of my suicide attempts, and I appreciate their work.

Senator, I lived alone in a lonely life, which was pure hell, for many years. I do not ever want to go back to that life again. But the community mental health centers are already stretched thin for funding. I lost my therapist of four years because Medicare wouldn't pay for me to see her anymore, and they had no other way for me to see her. I now have a new therapist, but I would have preferred to stay with the one I had who knew all about me, and my lengthy history, and my symptoms, and was able to help me deal with my symptoms and use logic and reason to bring myself back to reality when I was psychotic. Due to limited funding, I could not longer see this therapist as of a few months ago. She was my lifeline.

My other lifeline is my case manager, who is closing my case this week, because, due to limited funding, she cannot keep cases open for too long after people are no longer being hospitalized, and I have not been hospitalized in four years. But the reason I have not been hospitalized has been, in part, due to this very help I was receiving. Having this case manager in my life changed my entire existence. I finally had someone who I could rely on to advocate for me when I needed help after I got connected with Tynkr *Last Name Deleted, my case manager in 2005. I have been supported by her in myriad ways since that time, and I could continue to use her support indefinitely if the funds were available for her to have time to keep my case open. But she has too many other clients who need her, due to limited funding, so they have to close my case. I will now not have the support that I had before from my previous therapist and my case manager. I worry that I will deteriorate without this support.

Senator, I am a person who is extremely committed to recovery from my illness. I get an injection of medication every two weeks, and I take approximately eleven pills per day. I go to therapy weekly, now that there is a new therapist who accepts Medicare. I do advocacy work. I write a blog about my illness to help others. It is called Suicidal No More: Choosing to Live with Schizoaffective Disorder.

I am writing to plead with you to work to prevent the cuts in the mental health budget that are pending, in any way that you can do so. There are countless people in Florida who need help from community mental health centers. I know many people who rely on them as their lifeline, like I do myself. I also live in an apartment owned by community mental health center, name deleted, and since it has limited funds they had to close two of their facilities last year, and the apartment that I live in is in a very poverty-stricken, unsafe neighborhood. But it is all I can afford to live in and the agency doesn't have the funds to build any apartments in safe neighborhoods in nice parts of town, so all of their apartments are in unsafe areas of St. Petersburg or Clearwater.

We are already suffering from a lack of funding for mental health. We cannot afford for this situation to get any worse. One out of every four Americans suffers from a mental illness. There are many of us with serious mental illnesses, such as Schizophrenia, Schizoaffective Disorder, and Bipolar Disorder.

Please do not let the Florida Senate hang us out to dry, casting us off as if we are nothing and not people who matter. We are your constituents. Many of us vote for you. I do not want to be discounted. Please vote against the budget cuts!

Thank you kindly for your time and attention.


Jennifer *Last name deleted
Member, National Alliance on Mental Illness of Pinellas County


  1. Great letter Jen! I almost envy you your ability to speak up for yourself and others here, on facebook and in your advocacy work. I bet you're a good speaker in classes too. I never was a good speaker in class and there are lots of causes that I feel drawn to but then I don't take a position and raise up my voice with others. You are brave and committed. Your illnesses have not robbed you of your honest, sensitive, smart voice. You are part of the reason why the budget only got cut by $2 million instead of $100 million. Well done!

  2. Hi Jen,

    Amazing letter. I came across your blog while doing some research for schizoaffective disorders and I must say that I am touched by your efforts and your strength to pull through.

    In fact I was making a list of the top 5 blogs that I liked and yours made it to the list,

    I would like to say that you inspire many and I wish the very best for you.

  3. 16% of single homeless individuals are the untreated severely mentally ill. ~Mary


I welcome comments from all readers and encourage you to leave them! Please do. However, due to spam, I review each comment before it can be posted, so it may take 24-48 hours before your comment appears on the blog. Please be patient. I post comments that are not spam.Note: my definition of "spam" includes ALL links to sites claiming to cure or provide "the solution" for incurable diseases such as Schizoaffective Disorder and Schizophrenia. Vulnerable people come to my blog, and I will not let them be preyed upon, but people who post snake oil remedies on the internets. Take your garbage and peddle it elsewhere. Since Blogger doesn't weed all that garbage out, I've been doing it myself for years.