Wednesday, February 5, 2014

Here's What People Are Saying

By Mary Giliberti, NAMI Executive Director

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 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 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.




Mental Illness Policy Org said...

NAMI should focus on the most seriously ill, and work hard to implement it's policy on "Involuntary and Court Ordered Treatment". NAMI should not address everything else in the world first and leave this for last. It's at

NAMI should also vigorously support HR 3717 The Helping Families in Mental Health Crisis Act which would refocus federal resources on the most seriously ill, rather than the highest functioning.
Thank you
DJ Jaffe
Exec. Dir.
Mental Illness Policy Org

Anonymous said...

Please, please, please make it a priority for NAMI to stand behind educating how our society has created this pandemic of 'mental illness'.

Orthomolecular medicine is knowledgeable about how we have done this through the artificial additives, colorings, and preservatives and additional chemicals bombarding us from pesticide use. As well as heavy metals.

I have experienced raising a child who is brilliant and talented like so many of these kids and adults yet because of their biochemistry alteration due to the above, they manifest it by rages, irrational thinking, violence, depression,
ADD, ADHD, ODD, Bi-polar...the list goes on. Labels that Dr's. have invented to separate out 'mental illnesses'. They are illnesses that should be treated as illness first. Children and adults who cheated these harmful toxins, the heavy metals, chemicals including the artificial additives to foods, have miraculous recoveries. Sometimes they also need their gut flora restored as well as additional enzymes to help breakdown their foods. After FIRST doing all this, then see if counseling is needed because when mental health problems arise parents get blamed, children get blamed for behavior out of their control, and parents end up having to parent differently because of mental illness. An example is when my daughter was growing up she would have rages that meant attacking us, throwing, kicking, scratching, and even self abuse. If a child would do these behaviors without a mental illness you would discipline by sending to room, restricting fun activities, etc. And we tried but she would follow us around the house, she could go on for hours screaming and being abusive. Then she would pass out a nnitial d upon awakening would be back to her joyful self and sometimes not even remember the incident. So we would adjust the discipline cuz of her reaction which only reinforces behavior eventually but parents have to not also 'go crazy' raising a child w this illness so it is a cycle that ends with having an out of control teen that you have to remove from the home to stay safe and then wherever they are sent you the parent is blamed for bad parenting.

The SOLUTION in my opinion therefore is to educate parents, children, professionals about what causes (dr's cannot say anything against medication and give accurate info about nutrition so that education for them has to come from the public's actions of not buying non organic foods, demanding that ebt covers only organic foods and not packaged foods w artificial ingredi nets, raising the benefits to do this and spending money on research of orthomolecular medicine and nutrition for ALL diseases.
I have spent mist of my spare time researching my daughter's condition, have found answers and solution's but a parent can only restrict their child's diet until they go to school and trade lunches, receive candy from well meaning teachers, get 'nutritious' snacks like goldfish w artificial coloring that would send my daughter into a rage.
Read parent blogs and responses on autism and enzymes and see firsthand we are having to do our own experimenting because our doctors won't and even when we find answers we are overruled by society.
There are many excellent dvd's educating how nutrition, especially at least 51% organic raw can keep us from cancer, immune diseases, and mental health problems.

The other area I would like to see addressed more in NAMI is support groups for kids who have been adopted. Even though my daughter was adopted at birth, she has abandonment issues and most of the kids that end up at therapeutic boarding schools are adopted and or have the illness of 'mental ill health'.

Anonymous said...

I agree with one of the previous comments -- NAMI should focus on the most serious mental illnesses such as schizophrenia and bipolar. NAMI has spent the last few years focusing on depression because it is more socially acceptable. Help for those with the most devastating, life altering mental illnesses should be NAMI's main focus -- that is why NAMI was created. Over 30 years and only a buracratic mess is what we now have. NAMI was created to advocate for those suffering from severe mental illness - When will the advocacy begin?

Anonymous said...

Does NAMI support the HR 3717 The Helping Families in Mental Health Crisis Act ? And if so, how?