Tuesday, April 24, 2012

Having an Impact: Reporter Meg Kissinger and Her Brother Jake

By Bob Carolla, NAMI Director of Media Relations

The Association of Health Care Journalists presented its top award this past weekend to the Milwaukee Journal Sentinel (MJS) for a series published earlier this year, titled “Imminent Danger.”

The series probed the issue of involuntary commitment for mental illness, based on the legal standard of “imminent danger to oneself or others.”

Only one percent of people with severe mental illness can be considered “dangerous,” the newspaper reported, while noting also that a punch or a shove was included in the definition relative to other forms of violence. The series resulted in strong reactions in the mental health community (pro and con). Discussion of violence (and the title) risked perpetuating stigma around mental illness while involuntary treatment is an issue that often splits mental health advocates.

Meg Kissinger

As part of the series, the MSJ published an editorial, "A Difficult Discussion the Community Must Have," which highlighted measures ranging from advanced directives to mental health courts. Overall, the project reflects the newspaper’s long-standing commitment to mental health issues.

Meg Kissinger is the reporter at the center of that mission. She is also one of only a few
reporters nationwide who have a sustained interest in the mental health care system. It is partly rooted in her family background.

Earlier this month, she published a moving story about her brother Jake’s experience living with mental illness titled “Can Adult Siblings Connect When Mental illness is in the Mix?” When Jake was 4 years old, he saved Meg’s life by running for help after she fell into a lake and almost drowned.

“Jake's real name is John Matthew, after my dad's older brother who was killed during World War II. This gave Jake a distinction as the white buffalo of our family, the rare and revered one who seemed to float above the fray,” Meg wrote.

A motivated and vivacious teen, Jake was an Eagle Scout. However, Jake ultimately dropped out of college. He now lives in a group home near Chicago, but is considering a move back to Milwaukee.

Jake was the third of eight children in the family. Meg was the fourth.

Meg became a reporter in part because of  her unique vantage point as the fourth child. She was always curious. Within the family, she was the one who often could report to members of the family what other members were doing. (Her status as a middle child may also be responsible for the “balanced” perspective that marks much of her work).

Meg’s first story about mental illness in the MSJ was a reminiscence in 1986 about the suicide of her sister, Nancy, eight years before. The second was in 1998, after her brother, Danny, also died from suicide.

Reluctant at first, she wrote the second story “because it was important”—as much as any about heart disease or diabetes that often are published.

Those stories “galvanized” Meg’s professional direction. Her managing editor, George Stanley, has encouraged that direction allowing her to continuing filing in-depth special reports, including "Patients in Peril" in 2010.

At one point, Meg was inspired by the contrast between her brother Jake’s living conditions and those of other people living with mental illness in Milwaukee. Her reporting sparked local action to increase housing for people with mental illness by about 500 units.

She takes the greatest pride in stories that having an impact.

After reporting on so many parts of a broken mental health care system, Meg hopes to focus next on programs that work. But, it also will mean comparing them to programs that don’t.

Meanwhile, Meg’s story of her relationship with her brother Jake is worth reading more than once. It certainly moved me.

Tuesday, April 17, 2012

Does the White House Read the Washington Post?

By Mike Fitzpatrick, NAMI Executive Director

Bureaucracies move slowly.

Sometimes too slowly.

That’s the case with the U.S. Department of Health & Human Services (HHS) which has yet to issue the final regulations to implement the mental health parity law that was enacted in 2008.

As a U.S. Senator, President Barack Obama voted for the law, but implementation has stalled under his administration since 2010.

Responsibility for moving the process lies with HHS Secretary Kathleen Sebelius, a member of the President’s Cabinet.

Two former U.S. Senators, Pete Domenici of New Mexico and Gordon Smith of Oregon, who were leaders in the bipartisan effort that passed the parity law, last week, co-authored an article in the Washington Post calling on the administration to act.

The law requires large employer-paid health insurance plans and Medicaid managed-care plans to provide coverage for mental illness or substance abuse disorders on par with physical illnesses. Absence of final regulations has created confusion and uncertainty for both employers and people who live with mental illness.

Many health care plans still don’t provide mental health coverage. Others impose barriers that do not exist for other conditions. Families in crisis often discover abruptly that their health insurance plans don’t cover the help they need.

In an online comment posted to Domenici’s and Smith’s article in the Post, a man observed: “If I hadn't had a good health insurance policy that covered mental health issues, I wouldn't have gotten help two years ago, and I'd probably be dead right now.”

One woman wrote: “I have watched my parents struggle to access mental health and substance abuse treatment for my brother, paying thousands of dollars out of pocket for his care. Access to effective, evidence-based treatments should not be limited to those with the means to pay.”

Another woman recognized “how integral mental health is to overall health. We know that there is a clear relationship between diseases such as heart disease and diabetes and depression. And the reality is that while mental health conditions are common, they are treatable. The mental health parity law ensures that people receive services and get help.”

What can you do?

Contact the HHS Public Affairs Office: tim.granholm@hhs.gov

Contact the White House: Send an email asking the President to issue final regulations for the mental health parity bill. Comments can also registered by phone at (202) 456-1111.

Tuesday, April 10, 2012

It Is What It Is

By Dawn Brown, NAMI Information and Referral Specialist

Dawn and her son, Matthew

My son was 8 years old the first time a doctor told me he had a psychotic illness. My stunned reaction and the look of confusion on my face prompted the doctor to ask, “Do you know what psychotic means?”

Yes, I knew the meaning of the word psychotic, but I could not imagine it describing my son. I knew him as wildly imaginative, dark and moody, prone to violent temper tantrums, unrealistically fearful and overly attached to me, but psychotic? No way. The doctor went on to explain his clinical findings and advised a complete neurological evaluation to rule out possible medical explanations. If no neurological issues were identified, I was advised to contact a psychiatrist so that my son could begin taking anti-psychotic medications, as soon as possible. That was quite an afternoon; it marked the end of our “normal” life, and the beginning of a journey my son, Matthew, and I are still traveling.

After the initial shock of hearing the diagnosis of psychosis my first reaction was denial. The doctor must be wrong. Then as reality began to come into focus, I experienced the full range of emotions most often associated with grief including: anger, depression and a sense of loss. Finally, I came to an acceptance of my son’s mental illness and began learning all that I could about the disease, treatments, resources and support networks. I became determined to become an effective advocate for my child.

As a parent of someone with schizophrenia, I realized what an important role I played in my son’s wellbeing. If you love someone with a mental illness, you too may be the only person standing in the gap between them and homelessness, jail, abuse or suicide. At times, you may need to be their voice when they cannot speak for themselves or no one listens. Or, you may need to do the leg work involved in locating mental health services and building a support network. At others, you may need to make tough, difficult decisions that break your heart; but, if not you, who?

Being proactive in your advocacy is the best course of action. Hope for the best, but be prepared for the worst. Contact your NAMI Affiliate or State Organization for information, support groups and referrals to local services. Line up a trusted group of professionals: a psychiatrist, therapist, and social worker/case manager. Become familiar with your community mental health center or clinics. Apply for disability assistance, either Supplemental Security Income or Social Security Disability Income (SSI or SSDI) which will make it possible to access Medicaid or Medicare. Learn about supported housing and employment options. There is help available, but resources are limited. Being patient, but persistent with mental health professionals and service providers gets the best results. However, it you believe your loved one is being abused, falsely accused, or discriminated against a lawyer may need to represent their rights.  Overtime, Matthew and I have needed to rely on all these resources.

It has been twenty years since Matthew and I began this journey. He is living with schizophrenia, and I am his mom. Schizophrenia has affected every aspect of his life, but it does not define him. Have courage, there is hope.

Tuesday, April 3, 2012

Go Away Evil: Global Mental Health and Traditional Healers

By Delaney Ruston, filmmaker, physician and mental health advocate

While making Unlisted, a documentary about the impact of my father’s mental illness on our relationship, I became interested in global mental health. I soon learned that it is the most ignored of all health areas.

In truth, global mental health is the most global of all health areas. Think about it: many illnesses like malaria only affect certain parts of the globe.

I started to film mental health stories outside the United States, interviewing leaders and advocates. This summer, a new website, Take5Now.com, will be launched where these stories and other resources will be brought to life. It is intended to foster interactive dialogue about mental health from a global perspective.

To stay informed about the exact launch date for Take5Now.com, please join my Facebook page.

You can also view a five-minute film, Go Away Evil, right now on YouTube. The film was shot in South Africa about a woman, Buyiswa, living with bipolar disorder. When Buyiswa started hearing voices in her twenties her mother took her to a traditional healer who gave her herbs. Nothing improved.

Spending time in South Africa I learned how traditional and religious healers are indeed where many Africans go for mental health care. This is the same throughout Africa, India and in many other countries.

Most developing countries spend less than one percent of their health budgets on mental health and eight out of 10 people with severe mental illness go untreated. Educational campaigns that link mental illness to a bio-medical paradigm are practically nonexistent. Consequently, in many low income countries the age-old explanations of demon possession and spells cast by jealous neighbors persist.

Filming globally for my other upcoming film on global mental health, Where in the World Is Mental Health?, people shared with me instances of being physically abused, from hair pulling to beating, by traditional healers. I questioned these stories at first because they sounded too cliché, but as I heard more of them, I was forced to accept the sad truth of their reality.

While there can be harm caused by traditional healers, whether through physical abuse or ineffectiveness, to advocate for doing away with them would nonetheless be counter-productive. The healers are an integral part of a community and often bring comfort and understanding to many individuals and their families.

For Go Away Evil, I interviewed a traditional healer and watched many of her clients chat with her and collect herbs and pieces of fur. I could feel the strong rapport she had with them.

I have been excited to learn about programs that train traditional healers about serious mental health. Trainings focus on which individuals could benefit from Westernized approaches to mental health treatment. The good news is that many healers welcome the training. They are grateful for being recognized and respected by the larger health establishment. 

Meanwhile it is reassuring to know that many developing countries are finally realizing the burden that mental illness imposes on its citizens. They have begun to dedicate more resources toward services and treatments. Studies show that psychological and pharmacological interventions are cost-effective in developing countries. In fact, they are just as cost-effective as antiretroviral treatment for HIV/AIDS. As evidence-based interventions increase, the sole reliance on traditional healers in many parts of the world will diminish.

The challenge is to empower all players in all communities to have the knowledge and resources to help end suffering and to foster connections between us.