The Whole World is Watching

In the last month North Carolina was rocked by revelations of 34 deaths of persons with mental illness in public and private residential facilities in North Carolina. The state investigated only 10.

In a series by the Charlotte Observer January 23-27, 2000, a story of mismanagement, poor monitoring, and inadequate laws was documented in glaring detail.

The story received national attention. Laurie Flynn, NAMI Executive Director, called on the state’s leadership to "stem this shocking tide of death." In North Carolina, Government Relations Director Beth Melcher called on the Governor to take charge to ensure that as a state we "do the right thing." The Governor, in response, stated it was "unacceptable" that deaths were not reported or investigated and pledged to take steps to improve the system of care.

Two weeks later, however, another scandal hit the front page. Dorothea Dix Hospital had failed to implement a plan of correction after being found to have unacceptable vacancy rates for nurses, nurses who did not know patients, and failure to complete assessments and treatment plans. $41 million in federal payments was in jeopardy. Four top administrators were fired or resigned.

At a meeting of the Legislative Study Commission on MH/DD/SA, Secretary of DHHS David Bruton took responsibility for not doing a better job informing the legislature on resource needs. Deputy Director Stelle stated he "didn't know how it could happen," and acting director Dr. Phillip Veenhuis explained how through the use of retirees and volunteers somehow the hospital would make it through the next review.

While this all appeared to catch government leaders unawares, it was no surprise to those who have been advocates for so long. Over 25 family members, consumers, and providers made presentations to the Commission and weren't so easily reassured. Recent events clearly had crystallized years of frustration. In 2½ hours of emotional testimony the people let it be known that, in the words of NAMI President Eileen Silber, "We are angry."

The challenge is to keep the spotlight on the consequences of years of failure to provide leadership, resources, and commitment to people with mental illness. It cannot become yesterday's news.

NAMI North Carolina has worked tirelessly to raise the needs of consumers, families, and the system of care in newspapers, radio, and television interviews. Meetings with legislative leaders have been held to push for strong legislation to minimize the use of seclusion and restraint, strengthen monitoring, and require mandatory death and injury reporting.

Meetings with the Governor's staff have called for his direct involvement and leadership. The crisis in care that has been borne by consumers and families for so long is now a crisis for the leadership that has brought it to this point. In this season of electoral primaries, ask state legislators and candidates what they intend to do to strengthen the mental health system. With leadership and commitment the crisis can kindle a revival.

My Message Is a Very Simple and Direct One....

We Are Angry

My name is Eileen Silber and I am president of the National Alliance for the Mentally Ill of North Carolina. Today I am speaking for the thousands of families who are our members and for those people with severe and persistent mental illnesses who are not here to speak for themselves.

My message is a very simple and direct one.

We are angry, anxious and appalled that our state of North Carolina and its stewards have watched as a barely adequate system of care has been allowed to drift even further downward.

We are angry that those in charge have the temerity to tell us that we have to understand and accept that there is just not enough money to treat sick people. These are prosperous times and that premise is unacceptable. There is much talk and examination of where we go from here—-but most of it centers on who’s in charge and precious little on what kind of care and the quality of that care.

We are angry and we are appalled that many people are still receiving old medicines with awful side effects when newer, more effective medicines have become available.

We are angry because advances in research have clearly demonstrated that these are brain diseases.

We are angry because research clearly shows that treatment works—-if you can get it.

And we are particularly angry because not only do the people we love and care about suffer from these devastating brain disorders, but they also face the discrimination of inadequate and outdated care. No other disease receives such second class treatment. That is tantamount to malpractice.

There are pockets of good care provided by good people, but they are fighting a losing battle and are trying to swim upstream.

You have allowed the insurance industry to discriminate against those with mental illness and pass the bill for their care on to the state government and ultimately the taxpayers. If this continues to be the case, then you must act responsibly and pay for adequate care.

This system is broken and needs fixing. It needs dollars, but even more it needs leadership that will act responsibly and develop a decent and adequate plan. The time for hunkering down and hoping that this mess will go away is past. The time for a coherent and complete system of care is now.

We know and good professionals know—-

These are real and awful brain diseases,

Treatment works—-if you can get it, and

Discrimination is wrong.

We want to be part of the solution with you. If we all summon the will, and put our heads and a little bit of our hearts to the task, surely we can do better in North Carolina.

Schizophrenia.com

Over 14,000 people take an active part in the message boards and chat rooms of www.schizophrenia.com—-an excellent source of information and support available on the internet.

There are supportive, non-commercial message boards. You can join the discussion areas as a guest, or you can register as a member (which takes about 10 seconds). If you are shy, feel free to use a name you've made up.

Some of the sections on the website include:

People Diagnosed with Schizophrenia,

Parents,

Spouses,

Offspring,

Brothers/Sisters,

Childhood Schizophrenia,

Financial/Legal,

French and Spanish Information,

Causes,

Diagnosis,

Medications,

Success Stories,

Coping,

Managing Depression,

Preventing Suicide,

Getting Financial Support, and

Assisted/Involuntary Treatment..

Remember, if you don’t have a computer, many county libraries offer time on the internet.

Check it out.

National Legislative Conference Sets

NAMI Agenda for 2000

Four representatives from NAMI North Carolina—-President Eileen Silber, past President Shirley Strobel, Consumer Council Representative George Kerns, and Executive Director Paul Bamford—-joined 175 other representatives from around the country, NAMI national staff, and guest speakers for the annual Leadership Retreat and Legislative Conference in Washington, D.C. February 5 – 8.

Highlights of the session included:

• an opening-night tour of the new NAMI headquarters office in Arlington, virtually the entire third floor of a brand-new building on one of the "main drags;"
• separate meetings for State Presidents, Executive Directors, and the Consumer Council;
• a special session on the "I Vote, I Count" campaign to register voters and rally in support of the NAMI agenda;
• workshops on legislative and legal issues, such as the recent Olmstead decision; and
• visits to Congressional offices to meet with Senators, Representatives, and their staffs.

At the top of the national NAMI legislative agenda remains the effort to achieve real parity in insurance coverage. Attendees urged their Congressional members and staffers to support Senate Bill 796, sponsored by Sen. Pete Domenici of New Mexico, and other components of the Omnibus Mental Illness Recovery Act.

George, Eileen and Paul visited the offices of Senator John Edwards and Representatives Richard Burr, Sue Myrick, David Price, and Charles Taylor. They were welcomed most cordially, and—-for the most part—-found the legislators and their staff members to be familiar with NAMI’s issues and supportive of our agenda. George was especially eloquent in articulating the need for permanent, safe, and affordable housing, with appropriate community-based services.

One favorable response came from the relatively new assistant to Rep. Taylor, who was eager to learn about NAMI and its programs and how we could help her help the Congressman’s constituents. She was especially cordial to George when she learned that he resides in Rep. Taylor’s district, belongs to Rep. Taylor’s party, votes regularly himself, and registers others to vote too. "You will always be welcome in this office," she told him.

Her comment underscored perfectly the point made in the "I Vote, I Count" session: grass-roots advocacy opens the doors, eyes and ears in the halls of Washington.

Taking Calls from Young Families

The North Carolina Division of Mental Health estimates there are some 40,000 children in the state with Serious Emotional Disorders (SED). Some of these disorders are mental illnesses or neurobiological brain disorders. All of these children need mental health services.

Their parents can easily feel overwhelmed by everyday life. They must learn how to navigate a complex mental health system and work with professionals and school personnel in what is often a difficult process. A well-informed family therefore plays the most important part in their child receiving services.

For these young families, there are many times of crisis when just getting through the day is very difficult. These may be the days when these parents need a sympathetic ear. The most important thing for them to know is they are not alone. Someone's willingness to listen will enable parents to cope better and to become strong advocates for their children.

As family members of those who have experienced mental illness, you are certainly capable of helping other families. Your ability to relate to what others are going through is priceless. When you share your own experiences with others, including how you have survived, you are demonstrating an effective model for others to follow. It will bring hope to those working through the maze of issues associated with chronic illness.

People say this is what helps them most--someone to really listen, not offer advice or solutions. We can all remember how hopeful we felt when we first talked to a NAMI member. It felt so good to share with someone who understood what mental illness is and how it affects a family. There was no need to convince someone that what you had experienced was real. We felt accepted and understood.

A Help Line volunteer's role is one of support, of being a sensitive listener and a resource by helping young parents sort through choices and issues. The ability to empathize with other parents is what is needed. So, the number one prerequisite to helping young families is the ability to relate to what the young parent/family is experiencing.

In a later issue, I will share guidelines and more suggestions on being a good listener.

Grief Management

The literature on working with families of consumers is full of concepts and interventions—multifamily groups, psychoeducation, reduction of family burden, and on and on. Something that is discussed much less frequently, and that is essential if a professional is to truly provide support to families, is attending to family grief.

Grief is often a constant and unacknowledged stressor for family members. Giving grief a name, honoring its presence, and helping families learn to cope with this stressor is an important and healing intervention.

Grief is traditionally thought of as a process, something to be "worked through." Kuhbler-Ross and others have identified stages of grief: denial, anger, bargaining, depression, and acceptance. Professionals help people move through these stages until grief is resolved. This, however, presupposes a loss with a clear endpoint and boundary—a death, a divorce, a job loss.

Other losses do not have this clear definition; they are often referred to as boundary-ambiguous losses. These losses have no closure, or somehow imply the potential for recovering some of what was lost.

Examples of boundary-ambiguous losses include couples who are infertile and each month feel a loss, families hoping a run away teenager will come home, a wife with a husband MIA.

Having a family member with a mental illness can be such a loss as well. Families (as well as consumers) remember the hopes and plans for the future they had for their ill family member. The consumer is still there with them, and can move into recovery, but life is never the same. The expected future is lost, the present can be full of pain, and families feel tremendous grief.

To help families with this grief, the concept of "grief management" is often helpful. Here a professional works with a family member to help them understand that in boundary-ambiguous losses grief may ebb and rise, with times of calm sliding down to times of deep sadness. To prevent becoming overwhelmed by grief, families can work through a grief management and support process.

The first step is for the family member to work with a professional, and with other support people in their lives, to create a grief profile/intervention plan. Here the person identifies and writes down their grief triggers, how they behave as they slide into the grief process, and what has helped them manage and "pull out of" that grief in the past. A family member may write "the things that trigger my grief are when my son goes into the hospital, holidays, and when I hear about my sister’s kids’ successes. As I slip into grief I initially get quiet, become more and more irritable and moody, and eventually become totally isolated. In the past, taking time out to exercise, talking with my best friend, and seeing a counselor if it gets really bad, have helped."

The professional next asks the family member to list all the support people with whom they would feel comfortable sharing their grief profile/intervention plan. The support people can then know what are high risk times for the family member, what behaviors are warning signs that they are slipping into deep grief, and things they can encourage the family member to do to manage that grief before becoming overwhelmed.

Sometimes the professional finds that the family member has very few supports, and they must work together to first develop a meaningful support network.

In addition to developing a grief profile/intervention plan, professionals can help families manage grief by encouraging and supporting them in exploring the positive things in their lives. Identifying the strengths in their families, remembering the recreational activities they used to enjoy, and participating in these activities, are ways that family members can reclaim some joy in their lives and decrease the power of grief.

Professionals have the potential to provide tremendous support to families. By acknowledging families’ grief, and partnering with them to develop ways to manage grief, professionals can help families decrease stress, gain energy and hope, and increase their stability and strength.

March 25, 9 a.m.

NAMI North Carolina Board of Directors meeting,

Room 0041, Moses Cone Hospital, Greensboro

March 28 and 29, 9 a.m.-4:30 p.m.

Training program, Guardianship: A Systematic Approach,

Charlotte, Fee $35, (704) 355-3757

April 14-16

Family-to-Family Support Facilitator training, Brown Summit.

Hope for the New Millennium, Winston-Salem

Twin Kindred Spirits

Elaine Purpel and Marcia Garatt have done a lot more than found NAMI North Carolina in 1984. Almost 16 years later, both are still active members.

Elaine has served on the boards of NAMI Guilford, NAMI North Carolina and NAMI. She is proud to have championed rotating state board membership. "New blood needs to be cycled in....It is a wonderful feeling to know that old war horses can move on to do what fits their talents and interests. Now I do odd jobs" like teaching Family-to-Family. Elaine represents NAMI on boards and committees and has chaired an Arts Festival of work by people who have mental illnesses. She also booked Balancing Act in affiliates around the state.

Marcia was not only the secretary of the NC AMI Board, but she and her husband wrote and edited the state newsletter. "The majority of active members are women, and that is a problem,"" says Marcia, whose current activities are in partnership with her husband, Paul. By this spring, they will have taught Family-to-Family six times in less than a year. "I have a problem with those who get what they want from the organization and then drop out. If it is only five minutes a week, give something. If we don't care, no one does." Marcia encourages new members to take over for the old.

Elaine joined NAMI because, "Here was an organization that helped me feel less alone while at the same time I could help others feeling the same things I was feeling." Marcia joined because, "We knew it was possible, even with the immovable and entrenched bureaucracy of Mental Health" to change the system. "It required a lot of work to find out what was happening around the country," but working together we could make it happen.

Elaine found fulfillment in NAMI from "the friends I have made, the courage I see every time we meet. I was a timid little rabbit and I quickly got over that. It helped me to grow by leaps and bounds." Marcia extols "the friendships, the wonderful friendships... Learning that you can laugh." What we do in NAMI, "in the long run will benefit many people."

Elaine feels her greatest accomplishment has been "getting the organization started." Marcia takes pride in putting out the first newsletter. "It was something I never dreamed I could do." Marcia says that the newsletter was the major source of education for the members in the 1980s.

Elaine wants the public to know that "those who have mental illnesses are people with talents, human beings, not people to be feared or ridiculed." Marcia's message is that "having people in rest homes is totally inappropriate. They can recover with the right treatment. And deinstitutionalization is not cheaper than institutionalization."

How Important Is Your Financial Support?

As readers of Clippings know already, I became your new Executive Director in mid-January, and attended my first NAMI North Carolina Board meeting on January 22. As you might expect, an important item of business was a Treasurer’s report and review of financial data; the Board also revised the 1999-2000 budget so as to accommodate the changes which have occurred since it was adopted last summer.

It’s worth mentioning that just about one-third of this year’s budget represents contributions from individuals (the largest single revenue line-item), corporations, and affiliates. That’s a lot. I invite you to imagine what it would do to your household budget if you had to take a 33% pay cut. I can tell you that if NAMI North Carolina had to take a 33% pay cut, it would hurt. It would seriously damage all three of our pillars – support, advocacy, and education. And, of course, increases in contributions to NAMI North Carolina would be like pay raises in your household budget: we’d be able to do more of what we, and you, think is important.

An old cliché among "stewardship" leaders is that you can tell what someone cares about by looking at their checkbook. Like most old clichés, this one has a lot of truth to it.

If you think that the support, advocacy and education efforts of NAMI North Carolina are important---are valuable---then you will support them with your checkbook as well as through attendance at affiliate meetings and state conferences, your help to other families who need your advice, and the other ways of saying "I care" about the mission and values of NAMI.

If you haven’t already, or even if you have, I invite you to say "I care" about NAMI with your checkbook.

The Mental Health Association paid dues for its REACH group members to become the first affiliate in North Carolina in 1982. In October of 1983, at a meeting of about 20, including NAMI founders Carol and Jim Howe, a collection was taken and the decision was made to create the North Carolina Alliance for the Mentally Ill. Elaine was chair of the steering committee; Marcia was the secretary for the fledgling organization.

By March 17, 1984, these women had managed to gather over 100 people for the first North Carolina AMI conference in Greensboro. Already, there were 7 affiliates and 148 member families, and at the conference they voted to incorporate, adopted bylaws, and elected 15 board members, with Elaine as the first president.

In May 1984, the Board set and prioritized goals, made policy decisions, and compiled a list of questions to ask the Division of Mental Health. The questions posed by NC AMI to the Division of Mental Health led to community based treatment in North Carolina.

By 1986, there were 19 affiliates and 800 member families. A grant of $20,000 from the Z. Smith Reynolds Foundation allowed NC AMI to hire a director in 1986. An office was located and John Baggett was hired from June through December of that year.

"Talk about having faith! We took a leap, not knowing where we would land," says Elaine Purpel. Marcia Garatt says, "Nothing happens unless people get together to make it happen. We knew what was possible."

The two grassroots activists and those who worked with them in the early years have spread the mission of NAMI NC to 33 affiliate and 2000 member families today. Elaine and Marcia wish to thank those unnamed in this article, without whose efforts all this could never have been accomplished.