Here's What People Are Saying

Feb. 05, 2014

Last month, in my first blog entry as NAMI’s new executive director, I wrote that I was deliberately spending much of my time listening to NAMI members and others and learning from them. So far, it has been an energizing process.

It has included working on the NAMI HelpLine and attending NAMI Delaware’s state conference where I talked with leaders and members of the state organization and learned about their programs, including their work to provide affordable, permanent housing.

I’ve met with Dr. Saul Levin, CEO and Medical Director for the American Psychiatric Association (APA) and his staff to discuss our organizations’ ongoing relationship, mutual interests, and trends in mental health care. I met with former U.S. Rep. Patrick Kennedy, who was the lead sponsor of the federal mental health insurance parity law enacted in 2008. He remains keenly committed to its full implementation and enforcement.

I’ve read messages sent to YourComments@nami.org and talked to both past and present NAMI National Board members who have invested so much time and energy into our cause. Here are some of things I am hearing:

  • A strong desire for NAMI to be a voice for people affected by mental illness and stand up for change.
  • How NAMI education programs and support groups are making a difference for individuals and family members.
  • How NAMI members appreciate our public service announcements and want us to do even more to get the word out about NAMI and what we do.
  • The need to ensure implementation of parity and close monitoring by NAMI.
  • An anger and frustration with the lack of evidence-based programs such as Assertive Community Treatment (ACT) despite the need.
  • The difficult experiences of individuals and families when they encounter the mental health and criminal justice systems. Many talked about problems with discharge practices from hospitals into homelessness, jails, and nursing homes and lack of services for them or their loved ones. Problems accessing care for people with both mental illness and substance use disorders was highlighted as well.
  • A desire for NAMI to be aware of different groups, including lesbian, gay, transgendered and bisexual individuals, and how mental illness is experienced by these groups in the context of “dual stigma.”
  • Support for a holistic approach to recovery, looking at spirituality and a focus on interfaith efforts to help local faith communities address mental illness.

What I hear on the NAMI Helpline is especially powerful. On Fridays, I have been working on getting trained to help callers. This past week, I returned voice mail messages with the help of an experienced HelpLine staff member. I heard from:

  • A woman whose son had just been hospitalized. She apologized for how frantic she sounded on her voice mail messages, but she urgently wanted to find a NAMI Family-to-Family education class. She felt she needed support. On the NAMI website, she did not see any classes offered in her home county so we talked about other nearby counties and how to find and contact the NAMI State Organization to get more information. Her need for support and education was raw and immediate.
  • A woman with schizophrenia who was using a certain medication and wanted more information about it. She also was interested in faith and spiritual healing and wanted information from NAMI FaithNet. She was working hard to make improvements to her life; she was interested in information on health and wellness. We sent her a number of packets with information printed out from the NAMI website because she did not have access to the internet.
  • A woman whose niece was in jail after experiencing psychosis. Her niece had young children and the caller was so worried that her niece would be tried without any understanding or discussion of her mental illness. We urged her to contact her niece’s attorney, but also referred her to the NAMI State Organization and her local NAMI Affiliate who would be more likely to know the local situation to help provide guidance. Her fear and concern about what would happen in a criminal justice system that was not designed to deal with her niece’s problems came through.

These are the concerns on people’s minds. This is the nature of the life experience of millions of individuals and families affected by mental illness. They are some of the reasons that NAMI exists—to provide education, support and advocacy to help improve their lives.

I want to hear more. What kinds of concerns would you like to share? Please send comments or suggestions to YourComments@nami.org. I may not be able to reply to every comment I receive, but please be assured that I will read all of them. I will be writing more blog entries as part of an ongoing dialogue. I hope you will continue to join me in those discussions.

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