Veteran Success and Survival Depends on Advocacy

By Kenny Allred, NAMI Veterans and Military Council Chair, LTC, US Army (Retired)

The National Alliance on Mental Illness Veterans and Military Council (NVMC) advises NAMI leadership on issues of importance affecting the mental health of warriors, veterans and their families. Our nationwide network of members and supporters offers both a window into issues and an opportunity to support, educate and advocate at all levels. It is through these efforts that we attempt to raise awareness, improve quality of life and save lives of those who have served or are serving in the military and now suffer from or are at risk for mental illness.

The month of May has been designated by Congress as Military Appreciation Month. On Armed Forces Day, May 19, and on Memorial Day, May 28, and every day, we should recommit ourselves to increase awareness and advocacy at all levels.

Opportunities for advocacy and collaboration are all around us, and here is one example of success:

Recently, I attended a conference where those who have contributed to national advances in social work were presented with awards for their work and leadership. These awardees are people at the top of their profession, and I sometimes wonder if those “at the top” are in touch with those “in the trenches.” The evidence that many of them are both in touch and care about people came quickly

As I watched the awards ceremony, I received an email from a young veteran, Joe, who lost his legs in combat. His recovery and upbeat attitude, including his selfless volunteer work that originally brought us together a couple of years’ ago, has been the subject of my continuing admiration. He is seemingly the model of recovery, but his email revealed the despair that often follows physical and mental wounds of trauma. In short, he needed a job to, as he said, “keep from going crazy.” He was reaching out for help. With veteran unemployment being double that of non-veterans across the nation, having a job and being productive is particularly important to both physical and mental health, financial well-being—and all the things, good or bad, that follow for veterans and their families.

On my mind was a feeling of personal failure at not being able to derail the part of a recently passed law in my home state of Tennessee that eliminates the hiring points preference traditionally offered to veterans and spouses seeking state jobs.

I feared that Joe and his family were among the first military victims of that unfortunate legislation.

As I considered the email, I looked across the table and there sat a senior Veterans Health Administration (VHA) manager who had just received an award. I showed her the email, and she asked that I forward it to her and she would help.

By the time I returned home, the evidence of her help and caring heart was immediately evident. I first received an email from a manager at Northrup Grumman, a company that provides jobs and job counseling to injured veterans and their family members. Secondly, I received a call the next day from a Veterans Administration counselor who helps veterans find housing and jobs. Joe and I talked about both of these opportunities and he was heartened with the speed, care and concern evident in those who were reaching out to help him.

Probably the best part of this story is that Joe will help others and “pay it forward.” When he was injured, his wife and one baby girl were at home waiting. Now, Joe has two young daughters entering school, does more volunteer work than most of us, and looks forward to life and helping others. He is a true hero.

The lesson for all of us is to constantly look for opportunities to advocate for warriors, veterans and their families, take action, never be intimidated and never get discouraged. I was surprised that so many people responded so quickly to Joe’s request.

There are a lot of “Joes and Janes” out there. Many people are willing to help, but they cannot help if they do not know about them.

I urge all of us to fervently advocate not just on the “special” days, such as Memorial Day, but every day! Write a letter or email, make a call or visit, share where you work or worship, and help reverse the epidemic of veteran unemployment and suicide and erase the stigma of seeking help for invisible wounds.

Please share your thoughts and the happenings in your area either on the NAMI Facebook page or by participating in NVMC conference calls held the third Friday of each month at 1:00 p.m. EST. Call: 1 (888) 858-6021, and enter 739264#.

I look forward to meeting many of you at this year’s NAMI Convention, June 27-30 in Seattle. In addition to our Veterans and Military Council meetings, there are several very interesting and informative presentations by and for veterans, including the “Parity for Patriots” rally on Thursday, June 28. Please join us and show support for warriors, veterans and their families.

On Armed Forces Day, please remember those who serve our country—and on Memorial Day those who sacrificed their lives in that service!

A Mother’s Day Message of Reconciliation and Restoration

By Dawn Brown, NAMI HelpLine Information and Referral Specialist

When mental illness strikes there is always collateral damage that extends beyond the person with the illness to include family and friends. Relationships are often strained to the limit as a person with mental illness struggles to cope with their symptoms and possibly refuses help and lack of resources and support can leave loved ones angry and burnt out. This creates a difficult situation that can result in more hurting than helping, and relationships can be damaged or lost.

Sadly, the most strained relationship is often between a mother and child. Whether your mother has a mental illness or you are the mother of someone with a mental illness, you understand the heartache that exists when the relationship is damaged or lost. Fortunately, even the most difficult situations can be improved, and working towards reconciliation and restoration with your loved one well worth it.

So, this Mother’s Day I encourage you to seek reconciliation with your mother or with your son or daughter. Hurtful words or regrettable actions can be forgiven; do not allow them to rob you of this relationship. Forgiveness is a gift to give and to receive. In many cases, it is the best Mother’s Day gift.

Restoring a relationship that has been damaged by mental illness begins with the acceptance that the relationship will be different. Making adjustments that can restore and sustain the relationship, include:

• Realizing that you are not the cause nor do you have the cure for mental illness. Also, realize that you cannot provide all the care needed. Locate resources in your community. Day programs/club houses, NAMI Connection Recovery Support Groups, social services and case management provide social opportunities, support, and professional care that can greatly enrich lives, as well as, lighten the load.
• Education brings understanding, and understanding brings compassion. Contact your NAMI Affiliate for information about NAMI Family-to-Family and NAMI Peer-to-Peer education programs in your community.
• Remember to set and respect boundaries. Keep communication clear and concise. Revise your expectations. You should not expect everything or nothing from another individual, be realistic in your expectations.
• Renegotiate your emotional relationship. Mutual respect will provide equilibrium.
• Taking care of oneself is essential to having a strong and loving relationship. If you are ill, be willing to receive treatment and manage your illness by cooperating with your medical team and taking prescribed medication. If you are a caregiver, do not ignore your own needs. Providing ongoing, long term support requires you to be at your best.

Statistics illustrate the enormous size and economic impact mental illness has on the United States, but they do not reflect the impact it has on our families. We do not have to allow mental illness to damage or destroy our relationships. Do not give up. Forgiveness works to reconcile and love to restore. I wish everyone a Happy Mother’s Day.

Dawn Brown is a NAMI HelpLine Information and Referral Specialist and mother of six. Her son Matthew is living with schizophrenia. 

Closing the Gap for Children's Mental Health

By Darcy Gruttadaro, Director of the NAMI Child and Adolescent Action Center

Half of all mental illness begins by age 14. Many people do not know that. They also do not know
that, on average, eight to 10 years will pass from
the onset of symptoms to the time of intervention
for those living with these conditions. In the life of a child, those are critical developmental years.

When children and youth living with mental illness have access to effective services and supports, they can develop close relationships with family and friends, learn to cope with challenging symptoms and gain the educational and social experiences they need to succeed in life.

This week, as we observe National Children's Mental Health Awareness Day (May 9), there are two ways we can work to close the gap.

First, is by getting schools involved in helping to identify struggling students and linking them with effective services. Second, is getting primary care providers involved.

Let’s start with schools. Children spend about six hours a day in school. They often exhibit the first warning signs of mental health concerns while in school. Unfortunately, most of these children are not identified early and linked with services. Schools need more information about the early warning signs of mental illness, how to talk with families and how to help. For this reason, NAMI developed Parents and Teachers as Allies, an in-service education program that covers these topics. This program has been popular with many schools and gets them interested in learning more about children’s mental health. Please consider bringing it to your community. The booklet that accompanies the in-service program is also extremely popular with schools. So even if your school is not ready for the in-service program, please consider at least sharing the booklet to get the conversation started.

Primary care providers, such as pediatricians and family doctors, are also natural allies in helping to close the gap. They see most children starting at a very young age and then over a number of years for well-child visits, vaccinations, illness, sports physicals and more. Primary care providers also are increasingly playing a role in addressing the mental health needs of children and youth because of the critical shortage of children’s mental health professionals.

But more can be done to get them involved.

NAMI has talked with families about their experiences with primary care providers. In a national survey, they shared recommendations on how to make primary care offices more welcoming to conversations about mental health concerns and how to start these conversations. This led to the creation of resources for primary care providers, including the publication of A Family Guide: Integrating Mental Health and Pediatric Primary Care. Please consider sharing these resources with pediatric and family practice offices in your community. Emphasize the importance of primary care professionals making a commitment to identifying children and youth who may be struggling with an emerging mental illness.

To observe National Children’s Mental Health Awareness Day, let’s make a commitment to close the gap so that children and youth with emerging mental illness can be identified early and linked with the services and supports they need to get a healthy start in life.

Family Caregivers and the Gift of Hope and Healing

By Katrina Gay, NAMI Director of Communications

Ed Dickey, NAMI San Antonio

Caregivers who are active in NAMI’s Family-to-Family education program gathered in Dallas recently to participate in a video project aimed at capturing the essence of their life experiences. When finished, NAMI intends to use the video to
help convey the heart and spirit of the Family-to-Family program to national, state and
community leaders and others who, in turn, can support it through financial assistance, referrals
and other means.

As one of NAMI’s signature programs, Family-to-Family is offered free in communities across the country to any caregiver of an adult living with a mental illness. Over 300,000 people have taken the course, but there are millions more in need.

The course consists of 12 classes, each of which covers different aspects of mental illness, family relationships and coping skills.

I was one of the producers for the video project, joining a talented crew from CloudTen, a creative marketing firm. I assisted with the scheduling and participation of each of the eight individuals who were interviewed on camera.

CloudTen is a new agency formed by a group of major agency veterans from the Dallas market. Their vision is to help brands, companies and causes impact the world for the better. Advertising that works at the Cloud 10 level really impacts people emotionally and that is the goal with every project from brochures to social media to TV spots.

On site in Dallas, a simple production set—lights, cameras and a single red chair in front of a stark white backdrop—was transformed into a magical tapestry of rich stories and the beauty of human experience. As I watched and listened, one person after another shared their truths by telling personal stories.

Themes were constant throughout:  humility, hope and caring.

One-by-one, they talked about helping family members who had developed mental illness and how it changed their lives. Guilt, grief, anger, sadness and isolation were the words used to describe their initial encounter with mental illness.

One in four adults experiences a mental health disorder in a given year. One in 17 lives with a serious mental illness. Each of the caregivers participating in the video project represents one of the millions of families affected by mental illness. They spoke to chaos and confusion they felt when they realized that a child or parent or sibling was ill— and how little they knew about their medical condition, treatment or recovery.

They did not know what to do.

That is, until they found NAMI and the Family-to Family program.

Gradually, through the course, feelings of despair and confusion were replaced with understanding, hope, strength and relief. Confusion became confidence. Their role in helping their loved ones became much clearer and helped to “normalize” their experience.

The Family-to Family participants shared their stories for the project. They talked about how their family members are now doing. Because of the new focus and coping strategies acquired through the program, they talked about dramatic, positive changes. They talked about a newfound strength in family relationships and their commitment to others.

Though their testimony, the participants will be helping families who are only now beginning to travel the road that they already have—just as they received strength from families who traveled before them.

As a free education course, Family-to-Family is both a gift to be received and in some cases presented in turn others. All of the trained instructors have taken the course themselves and have a loved one living with mental illness.

Before the video event, I thought I understood the concept of unconditional acceptance and understanding as a powerful tonic for individuals and families seeking recovery and understanding. Now, I recognize that this is not only potent but perhaps essential.

The help and hope that NAMI gives to others in need is the most remarkable gift we have to offer. We humbly thank all the members, supporters and grassroots volunteers who enable us to make a difference.

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.

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.

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.