Mental Health Treatment: Lobbying for Yourself and Others

  • My intent in writing this SharePost is to give you the tools to take action.


    In New York city the owners of SYMS clothing store advertise: "An educated consumer is our best customer."  We can co-opt those words because the best customers of mental health services are those of us who educate ourselves about our illness, research treatment options and commit to our recoveries.


    We do buy these services because we pay good money to the professionals involved in our care, and so we have the right and duty to be informed and take action.  The focus of this SharePost will be mental health treatment in the United States: advocating for ourselves and others.

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    First I will talk about something my psychiatrist suggested I address publicly: the lack of universal health care that jeopardizes people who want to work at a job to bring in extra money to supplant their government disability checks.  In some states in the U.S. as soon as you earn a scant $100 in income you lose your Medicaid benefits and the ability to pay for your SZ drugs.


    In New York State, the Medicaid Buy-In program allows people who earn up to $44K to pay for continued Medicaid coverage.


    Aside from losing benefits, the number-one problem is accessing mental health treatment to begin with.  The Fall 2010 SZ magazine Points of View panel moderated by Melissa Keith had as its topic: Seeking Essential Services: Where Should Consumers Go?


    Margery Wakefield responded: "In our country (USA) we don't have socialized medicine which I feel is a mistake because in countries with socialized medicine patients with my illness are more likely to get help."


    Routinely: I field questions on this web site from community members who reveal they have no health insurance to address their mental health problems.


    I realize that a number of people diagnosed with schizophrenia might not be proactive or might not feel they have the skills to lobby on their behalf, let alone join the fight to help others in the same boat.


    It comes down to another slogan popularized in the drive to register people with psychiatric conditions to vote.  The simple words are: "I vote, I count."


    A historical battle that took close to a decade ended in victory: the mental health parity bill was signed into law by the president.  It guaranteed equal coverage for mental illnesses on par with physical illnesses covered by private health insurance plans.


    Right now: contacting your elected officials in the U.S. government is as simple as sending them an e-mail.  Find your senator or house of representatives member and log on to their home page.  The National Alliance on Mental Illness can make this process easier.  Log on to their Legislative Action Center to get e-mail alerts of mental health bills that are under review and use NAMI's talking points in composing a letter or e-mail to your elected officials.


    On this homepage it links you to an alert about how state and local Medicaid funding is at stake.  You can also help Expand Access to Affordable Housing.  Other links are offered for numerous mental health issues.


    Via a NAMI e-mail alert: I was notified about SSA 2007 0101: the proposal on the docket that includes a standardized testing requirement for determining functional limitations of people applying for government disability checks.  For this and other proposals you can also log on to the government regulations web site and post your own comments as I did last night.


    The NAMI Legislative Action homepage has links you can click on to sign up for action alerts and to obtain summaries of how your representatives voted.  To read the text of bills log on to the Thomas web site of the U.S. government.  From the first page: type in the words in the bill or the bill number to find the text. 

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    You can also click on the link to How A Bill Becomes A Law.


    My representative in the House voted against the current health insurance reform even though I sent an e-mail urging him to vote in favor of it.  You will not always get the result you seek however that should not deter you from speaking out.  By giving voice to your needs you cue elected officials that there IS a need.


    I sent numerous letters and e-mails as regards the parity bill that is now a federal law.  I send e-mails routinely on other mental health bills and will continue to do so in the future.


    My response to you would be that as a citizen of the United States you have the ability to stand up for your rights.  We do not live in Myanmar or Iran or other places where human rights abuses often take place against activists.


    We can read newspapers and get informed. We can educate ourselves in schools unlike women in Afghanistan who had to travel dressed as men to attend a secret school.


    Yet with all the rights we have in America we should not take them for granted because one day they could be taken away.  Right now the future of our current health insurance reform is under attack.  This reform eliminated the pre-existing condition clause in private insurance that allowed insurers to deny coverage to individuals with a prior history of a mental illness.


    In my estimation the law does not go far enough and the idea that the free market will regulate itself-akin to the Invisible Hand theory-is nonsense because private insurers routinely denied coverage or made it hard to get coverage all these years for people who needed their services. 


    The only hand reaching out is the hand taking our money with nothing to give us in return.  Until we have a single payer system health insurance carriers will continue to put profits ahead of patients.


    You might not agree with me on this.  You might want to go out right now and send an e-mail to your elected official asking him or her to repeal the health care reform.  That is your right and as a fellow citizen I would support you in taking action.


    As I stated at the beginning, I wrote this SharePost to give you the tools to take action.  I would be interested in hearing what your experiences are like contacting your elected officials.


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    I have voted in every presidential election since the year I turned 18 when it happened to be an election year.  I'm 45 now.  The last time I voted the line was out the door of the building and down the block.


    To get a voter registration card or information about how to register to vote simply go to your local public library and speak to the reference librarian.



Published On: November 16, 2010