News About NAMI Maryland

NAMI MD Members plan next steps for advocating in the 2002 Legislative Session at the Public Policy Advocacy Training on October 13, 2001. (Photograph by Al FitzSimons, Vice President, NAMI MD)

The Public Policy Committee has been busy preparing for the 2002 legislative session. In Maryland, the legislative session runs from mid-January through early April, so we only have a limited time to convince our legislators to support us.

Especially important this year is our platform position to “provide funding at adequate levels to care for Maryland’s individuals with serious and persistent mental illness.”

The Baltimore Sun has called the situation in Maryland a system “dying of starvation.” We all fought hard last year to put pressure on the governor to fill the funding gap in the Maryland Public Mental Health System. The situation is worse this year. A slowed economy and expenses related to the September 11th attack are creating fiscal problems for the state, added to the under funding already built into the system. Each week brings more news of providers who threaten to close their doors or restrict services, because of inadequate reimbursement. Is your treatment or your relative’s service threatened? All of those on Medicare could be in a precarious position. One well-respected Montgomery County provider has announced that they cannot afford to subsidize their Medicare patients any longer.

· Write or call the Governor’s office to let him know that we cannot cut the Mental Health Budget.

· Write or call your state delegate, and senator. Ask them to tell Governor Glendening that Mental Health needs increased funding, not cuts.

We also know that there are others who need mental health services, and are not getting them, at least not in an appropriate way. Too many of our family members are ill and homeless, or are ill and in jail or prison. Too many are caught in the “revolving door” of short hospitalizations and decompensation. We know that this is often because people have no insight into the fact that they are ill, and will not seek treatment.

Maryland law requires “imminent danger” for emergency evaluations. Moreover, our law does not define “dangerous to self or others”, and has no provision for “gravely disabled” or “need for treatment.” This means that it is very difficult to have a family member helped until the situation is dire.

The Treatment Committee (which is a subcommittee of the Public Policy Committee) is working hard to develop a bill that will help get people into treatment sooner.

· Call or write your delegate(s) and senator. Explain the need for treatment law reform. Tell your story. Give a personal example of the problems faced by inadequate laws and inadequate services.

· Offer to go with your affiliates to meet legislators. Help your affiliates organize these meetings.

· Join the Policy Committee to help monitor bills in the coming session. This work can be done at home, using the Internet. Just a few hours a week can make a difference. You can choose an area of concern (treatment, children’s issues, hospitals, budget, etc.) and work with that team to review bills.

Greetings from NAMI MD as we say good-bye to 2001 and welcome 2002. What a year it has been! NAMI MD and its group of committed volunteers and staff

· Participated in the Annual NAMI National Conference including a Legislative Day on Capitol Hill, July 21

December 2001 finds us still reeling from the events of September 11. In the aftermath of the terrorist attack we are able to clearly identify our heroes. Hats off and a hero’s salute to all the New York firefighters and police officers who gave of themselves so that others could survive. Special recognition goes to all the volunteers from police forces, fire companies, emergency medical personnel, first responders and plain old citizen’s throughout the country who selflessly provided backup services and support to the victims and their families. And… as long as we are on the topic of heroes, let’s not forget the heroic actions of Senators Paul Wellstone and Peter Domenici as they work to pass the mental health parity legislation before a conference committee in Congress.

Senators Wellstone and Domenici know first hand the ramifications of caring for, living with and nurturing the growth and development of a family member living with mental illness. They not only “talk the talk”, they “walk the walk” when it comes to advocating for public policies advantageous to treating mentally ill persons. I urge you, our members and readers, to join NAMI MD in its search for Maryland heroes who selflessly provide support and advocacy to our citizens living with mental illness/brain disorders and their families. Where are the members of the Maryland State Legislature, our currently reticent heroes, who, like Senators Wellstone and Domenici, have first hand experience nurturing loved ones with mental illness? Can we find them and encourage them to speak out and speak often about the issues facing Maryland’s public mental health system and treatment for mental illness? At press time, the Maryland Public Mental Health System is greatly under funded, providers are one payroll away from “meltdown”, hospitals are filled to capacity, and gray zone clients are losing services. We need family members from the ranks of the legislature to speak out to attack these problems straight on. We need heroes!

So… In this holiday season, we say thank you to all who helped us achieve our goals this year. Thank you for your gifts of time and dollars, your insight and your wisdom. Thank you for assisting us with our mission to educate the public about mental illness in an effort to reduce stigma and provide support and advocacy to families with loved ones living with mental illness/braindisorders. Love and joy to you and your families.

Let’s ring in the New Year with an eye to expanding our educational programs and “pumping up the volume” as we educate the public about the current state of affairs regarding services Marylanders living with mental illness. With the help of heroes, everything is possible.

In this holiday season, I bring three wishes - actually one wish, one thank you, and one prayer. My wish is for inspired and untiring leadership in state government at this time of extraordinary challenges.

A daunting challenge for the next governor of Maryland will be to see that all Marylanders have access to adequate health care. The current administration’s approach to funding mental health services seems to have focused on one area: that of balancing the mental hygiene budget by limiting access and reducing services. To their credit Mental Hygiene Administration has ensured access to the public mental health system to twice the number of clients that planners had anticipated. However, despite the obvious need for increased funding the current governor has placed his priorities elsewhere. It will be the job of his successor to find ways to finance the demonstrated need for mental health services so that ill persons will not land in homeless shelters or prisons without adequate treatment.

We urge our future leaders to think creatively about how to finance a public health system that adequately reimburses providers whose services demonstrably lead to recovery. An ideal system will return a person with mental illness to the community and respond rapidly and skillfully when emergency and crisis services are needed. This system, in short, is one that other states will seek to imitate. These leaders will need our vigorous support in the days ahead. We will need to be vocal, actively engaged, and very focused. As we begin the New Year, my own hope is that we all become involved in our local affiliates, share our stories and our hopes with our county councils and state legislators, and help create a political will for the kind of leadership that supports Marylanders living with Mental Illness and their families.

My thank you is for the dedicated, intelligent services of hundreds of NAMI volunteers who advocate, educate, and bring caring support on behalf of everyone of us who reads this newsletter- and for the generous contributions many others make in appreciation of these services.

My prayer is for a peaceful holiday season, especially for those whose loved ones find this to be an especially difficult time.

In light of the United States tragic event, I find it somewhat difficult to write about “mental illness.”

I feel, however, I must address some of the problems facing people with mental illness at this time. As we observe Mental Illness Awareness Week Oct. 7 to13, the citizens of Harford County should be reminded that theirs may be the one out of five families affected by a severe mental illness this year such as bipolar (manic depression), schizophrenia, panic disorder, major depression, etc.

§ Change Maryland’s commitment law. The present standard of “imminent danger” does not prevent tragedies. It allows for assisted treatment only when an individual presents an “imminent danger” to self or others. Too often, it is impossible to predict danger until after the tragedy. Sates with a “gravely impaired” standard can intervene before an individual’s health declines to the point of dangerousness.

§ Appropriate housing and case management. Mental illness is a wound to the mind and the brain. Stigma is a wound to the heart.

The NAMI of Harford County support group meets every third Wednesday of the month at 7pm. at Bel Air United Methodist Church, 21 Linwood Avenue and Main Street. Call 410-592-7876.

Mary Guisewhite has been the President of NAMI Harford County for 17 years. Mary completed her term this Fall. We thank Mary for all of her hard work and look forward to her continued involvement with NAMI Harford County as a loyal member.

If you have a child with mental illness or you are or will become a guardian for someone with mental illness then you are probably besieged by lawyers and so called financial planners offering estate planning. They typically focus on wills, trusts, and the management of your assets after your death. While I don’t want to minimize the need for death planning, I want to stress the need for life planning. If you have only planned how your estate will be administered after your death and you have not fully addressed how your assets and estate will be affected when you need someone to assist you either on account of physical infirmity or cognitive impairment, then beware, because you are only half planned.

Protecting your assets from the costs of health care at home or an assisted living facility or a nursing home is important for everyone, but it is critical for those who are responsible for a loved one with mental illness. Assets eaten away by non-reimbursed health care costs will affect the care and quality of life of your loved one with mental illness. As our population ages, the likelihood of this happening is compounding. Of all individuals reaching age 65, one half will utilize some nursing home care. When home care or assisted living is added to the equation, that percentage grows exponentially. The population age 85 and over represents the fastest growing segment of the U.S. population today. There are roughly 50,000 Americans alive today age 100 or over. Within the next forty years this number is projected to reach 1.5 million. Another alarming statistic is given by the National Association on Alzheimer’s which cites that one out of every two individuals 85 or over suffers from some form of dementia or Alzheimer’s.

The cost of long-term care (either at home, assisted living or nursing home) ranges from $40,000 to $70,000 per year. Because of demand, the cost of care is increasing at a rate far in excess of inflation. There are only four possible ways of covering this liability: Medicare, Medicaid, your assets or long term care insurance protection.

Medicare will only cover the costs of a nursing home in full for twenty days and only if all five very stringent criteria are satisfied.

Medicaid will only pay for long term care if your total assets are valued at $2500 or less. Living trusts do not protect assets from this financial threshold. Nor does it matter in whose name a spouse’s assets are titled. In fact, pre-nuptials don’t ever supercede these requirements

Can anyone really rely on Medicare or Medicaid to cover the greatest financial risk most of us face in our lives – paying for long-term care? For me, the answer emphatically is NO. So we are left with our assets versus long-term care insurance protection.

Using our own assets means that we will pay for our care on a dollar for dollar basis (40,000 – 70,000 per year today), and this is after taxes and capital gains. A dollar spent on care is a dollar lost forever in terms of the earnings or interest you or your heirs could have earned on that money. Long Term Care protection enables us to leverage the cost through taking advantage of the principle of the law of large numbers. Insurance enables us to use Other People’s Money on a significantly discounted cost basis.

Even if you live well beyond life expectancy the cumulative cost of having Long Term Care insurance protection is an insignificant fraction of the cost of needing just six months of care. It is a little mistake to have the protection and not need the care. However it is a huge mistake to need the care and not have the protection. The cost of most insurance protections increase each year. In contrast, the net cost of Long Term Care insurance protection actually decreases each year. You want to secure Long Term Care insurance protection when you can take advantage of your younger age and good health. Procrastination can be extremely costly and can also result in your not being approved for the coverage.

Lastly, not all long term care policies are created equal. It is much easier to qualify for coverage with some over others. The language in what triggers the contract is essential. Because of the complexities and nuances, you should consult with an elder care planning and insurance specialist, particularly if you care for someone with special needs.

In Memorium

Hyman Rosenfeld was a faithful member of Harford County NAMI. He was a friend to everyone and eager to offer help and advice to all members. Hyman was also a member of Accepmi Harford County, finding jobs for consumers of mental health services.

Hyman Rosenfeld will be missed!

By Mary Guisewhite

The NAMI MD Office is in need of a television/VCR combination as well as a digital camera. We welcome any donations!

The NAMI National Convention was held July 11 through July 15, 2001 in Washington DC. There were over 50 NAMI MD Members at the Saturday Awards Dinner. Approximately 75 NAMI MD Members participated in some part(s) of the conference.

We met with eight representatives of eight of Maryland’s congressional offices and with staff from Senator Mikulski and Senator Sarbanes offices. Highlights of the convention included updates by many renowned researchers including Nobel Prize Winner, Eric Kandel.

Those wishing to hear tapes of some of the workshops should contact Janet at NAMI Howard County.

Steve Hyman, M.D., Director of the National Institute of Mental Health stressed the importance of basic brain research in eventually understanding mental illness. He noted that Alzheimer’s research has given us useful information in that regard. For example, we know the pathology of Alzheimer’s and in five to seven years may have prevention for the disorder. Schizophrenia, however, may take longer. It has greater genetic complexity and we need to know the non-genetic factors that are thought to interact with the genes to produce schizophrenia.

Nobel Prize winner, Eric Kandel, M. D. believes that an understanding of memory is fundamental to an understanding of schizophrenia. We need to learn where the brain memory is stored. There may be two kinds of memory: explicit memory for facts and events and implicit memory involved in unconscious processes in the brain. Of critical importance is learning how new information is put into long term memory in the brain. Understanding this process may be a key to understanding schizophrenia, Alzheimer’s disease and other memory difficulties of the elderly.

A discussion on advances in medication treatment was presented by Jeffrey Lieberman, MD. Dr. Lieberman reported that people who are resistant to traditional medications do 20-30% better on atypical medications. However atypicals often cause weight gain in patients, especially those who improve the most. An 18 months study of 1600 patients is underway to see how atypicals compare with traditional medications in efficacy and cost effectiveness.

Dr. Lieberman noted that a new medication is being developed that is a dopamine modulator. It reduces dopamine in some areas of the brain and stimulates it in others. The side effects profile look good. However, Dr. Lieberman said, investigations need to go beyond dopamine. Glutimate, for example, seems to be implicated in schizophrenia in some way.

As the heat of summer dissipates, the “heat” surrounding the mental hygiene budget increases. By now, all of you are acutely aware that a tax amnesty bill was passed in the last legislative session to address the $32M, cumulative, 3-year Mental Hygiene deficit. Currently, the Mental Health Administration is instituting changes to the public mental health system. The changes are targeted to reduce costs in an effort to decrease the projected deficit of up to $37M for this current fiscal year, FY 01-02. For example, the definition of gray zone consumers is being narrowed to include fewer people. In addition, there has been a freeze on the development of residential rehabilitation beds for approximately the last 18 months. Persons with acute stages of mental illness are unable to access state psychiatric beds; it was noted at the August 21 Mental Hygiene Advisory County Meeting that one person with mental illness has been waiting 76 days to access a psychiatric bed in a State Hospital. If these situations aren’t challenging enough, 4 persons have jumped to their death from the Bay Bridge this year. And lastly, we must not forget that the same February week NAMI MD Members were giving testimony to the legislative subcommittees in Annapolis at the Legislative 2001 session regarding the need for more funding for mental hygiene services, a young Howard County man diagnosed with mental illness took the lives of his mother and a house guest. Then, two days later on the Eastern shore, a man in Centreville, known to his community as a person with persistent and severe mental illness, shot two police officers who were called to his door by concerned neighbors. We can and must do better! To paraphrase a message from the book by Robert Fulghum “All I Really Need to Know I Learned in Kindergarten,” we must “join hands and stick together.” One person can make a difference and we need you! May I suggest several ways you can help us address these issues in effective ways:

Answer Janet Edelman’s call for public policy committee issue “worker bees” for the following initiatives:

You should have received our request letter recently in the mail. Donating your rebate check is a simple way to contribute and very easy for those persons not able to work on committees.

Please remember that all of us need to write, call, or visit our state delegate or senator periodically to inform them of current issues and needs. Make sure they are well informed before the session starts in January 2002. Together, we will make a difference and improve the quality of life for our loved ones living with mental illness.

Sorry- In the Spring 2001 issue of Connections, NAMI Metropolitan Baltimore was inadvertently omitted from the affiliate list. NAMI National recently awarded NAMI Metropolitan Baltimore, Inc. for having the largest percentage increase in membership for a large urban affiliate. Congratulations NAMI Metropolitan Baltimore for this outstanding achievement.

I feel sure many NAMI MD Members can relate to our family’s experience of learning more about some matters in the last 5 years than we ever wanted to know. At a recent conference in Indianapolis as your representative, I learned a few more things: (1) another reason why insurance parity really matters (2) the relation between the parity issue and states’ ability to provide access to mental health services for all its citizens (3) the relation between insufficient numbers of mentally ill in our prisons and jails. As your president, I feel compelled to share with you what I have learned and to invite you to join me in NAMI’s work.

By the time you receive this newsletter, we hope that insurance parity legislation, SB 543, introduced by Republican Senator Pete Domenici and Democratic Senator Paul Wellstone, will clear both houses and be signed into law. We also hope that no other legislation will slip through that will allow private insurers or employers to circumvent parity laws on the books in many, but not all of our states. One such bill is the House version of the Patients’ Rights Bill. An amendment attached to that bill, the “Thomas” amendment or “AHP” amendment, would permit small and medium size employers to be exempt from state parity law provisions.

The reason insurance parity is important to us is not just that it provides some financial relief to individuals with mental illness and their families. Just as important, if the private insurers do not pickup some of the cost of mental health services, the state’s burden will be increased beyond what it can absorb. The consequences would be catastrophic: increasing numbers of uninsured who do not qualify for SSI or Medical Assistance could lose what access they presently have to treatment. Many could land in homeless shelters, jails and prisons. Sad to say, there are signs that process is already underway in Maryland.

§ Thank our Maryland Senators for signing onto the Domenici-Wellstone insurance parity legislation.

§ Ask members of Congress to oppose the Thomas amendment to the House version of the Patients’ Rights Bill.

§ Become actively involved in NAMI by contributing your tax rebate to NAMI Maryland.

COMMUNICATIONS- We have a very active Public Policy Committee, but we need help tracking legislation on housing, employment, access to treatment and a host of other issues.

EDUCATION- We have teacher training programs for Family-to-Family, Visions for Tomorrow, and Living with Schizophrenia and Other Mental Illness Programs. Consider being trained as a teacher and increase the impact of these programs 20-fold.

FUNDRAISING- We need help identifying and securing private and corporate donors, foundations and grants to support our operations and educational activities.

MEMBERSHIP- We need a core of people dedicated to growing our grassroots members, increasing our outreach, and bringing the resources we have enjoyed as members to others in our communities.

We have come a long way in our 18 years of existence. We can go a lot further with your active participation. Simply contact the office at 410-467-7100 or 1-800-467-0075.

4158: The Combined Charity Campaign for Baltimore City Employees and Retirees

4186: The Maryland Charity Campaign for State Employees and Retirees (private and state donors)

The Maryland Mental Hygiene Administration has agreed to fund the NAMI Maryland Aging Caregiver Project for three additional years. This will make it possible to continue the work we have been doing and to undertake some new projects in the next three years.

Before sharing our plans for the future we would like to provide a brief summary of what we accomplished in the first three years. A four-hour workshop was developed to help families plan for the future care of a relative with mental illness. Nineteen workshops were given in various parts of the state.

A thirty page booklet called “Planning for the Future Care of Relatives with Major Mental Illness” was created and is now in the process of distribution. It is being marketed by Sunrise Publications of NAMI Prince George’s County (301-322-1900) for a nominal cost. A three-fold brochure called “Planning for the Future: Relatives with Major Mental Illness”. These are available in quantities to NAMI affiliates and other organizations at no cost. An estimated five to six thousand of them have already been distributed.

A total of twenty-one meetings were held with agency staff in the state to help them understand the special needs of older caregivers so they can better assist clientele in need of help. Such issues as providing support to caregivers as they struggle with future planning and working collaboratively with families to get a resistant family member connected to metal health services were discussed.

These activities will continue into the next three years. Workshops on future planning as well as a series of classes will be offered at the request of affiliates. Affiliate leaders will receive letters offering more detail about scheduling these activities.

An important new focus of the project will be the role of siblings when parental caregivers are gone. An advisory committee of siblings is assisting the project director to set the direction for this phase of the work. It is anticipated that printed material directed to their needs will be prepared and distributed to interested siblings. Classes, workshops, and/or support groups are also a possibility.

Finally, more work with mental health providers is planned. Attending staff meetings will be continued and major state-wide conference on families (older parental caregivers and siblings) is anticipated.

NAMI members are strongly encouraged to send their ideas about these issues to Agnes Hatfield at the NAMI office or call 301-925-7373.

NAMI MD is pleased to announce its outreach into the Veterans Affairs (VA) Hospitals located in the Maryland region. Of the 172 VA Hospitals in the country, five are located in Maryland's Veterans Integrated Service Network 5 (VISN 5). NAMI National has awarded several states, including Maryland, a small grant to help state affiliates to reach out to the families served in the VA system.

This fall NAMI MD will support classes located in the VA Hospitals in Baltimore (10 N Greene Street) and in the District of Columbia. Baltimore classes will be taught by Bette Stewart and Cassandra Penny. Classes will meet on Monday evenings from 6 pm until 8:30 pm, beginning September 10. The DC classes, facilitated by PG County's Dorie Arbach and Fred Adams, will also meet on Monday evenings, beginning September 24, and will run from 7pm until 9:30 pm. For registration information or directions, contact Bette Stewart at 410-328-8747.

Two classes will be offered to families of veterans in the Perry Point area (Cecil and Harford Counties). Teachers will be Mary Lee Hutchins and Ronda Kamahele, and Maureen Kilby and Faye Wood. Dates and locations are not yet available, but contact Bette Stewart if you or someone you know is interested.

Families of veterans can attend the program most convenient to them, and are not expected to go to the hospital where their relative receives treatment. Classes are open to any interested families in the community, as well as to families of veterans. Anyone with a relative with mental illness can participate in these free classes.

Offering the Family-to-Family Education program to the veteran population will help NAMI grow larger, making our voice even louder.

Living With Schizophrenia and Other Mental Illness (LWSOMI) is a recovery-education program given by trained consumer presenters for other consumers, family members, friends, and professional and lay audiences. The first state-wide presenter training will be held on September 14-15, 2001 in Baltimore, MD.

The Family-to-Family Education Program is a 12-week course for families of individuals diagnosed with mental illness, taught by trained family members. A number of courses are beginning in the fall. To find the location closest to you, call your local affiliate listed on page 2. The Family-to-Family teacher trainings will be held November 2001 in Gaithersburg, MD and March 2002 in Baltimore, MD. A support group facilitator training will be held in November 2001 in Baltimore, MD.

The Visions for Tomorrow Educational Program consists of a series of workshops for caregivers of children with brain disorders, taught by caregivers. Visions classes will be offered for the first time in Maryland this fall.

For more information about these educational programs, contact Dana Lefko at 410-467-7100 or dmlefko@aol.com.

If you are reading this newsletter
and have never attended the national Convention, you owe it to yourself
and your family member to register now. Just call NAMI's Convention
Department at 703-524-7600.

In closing, thanks to all of you whose financial support enables us to grow our
education programs and carry our message to Annapolis. I hope you will
once again give generously in the envelope provided with this
newsletter.

News About NAMI Maryland

Advocacy in Action