September 2000

Olmstead Decision—

A Powerful Tool for Disability Advocates

The State of North Carolina has initiated a planning process to comply with the U.S. Supreme Court Olmstead decision. Should you care? You bet. The Olmstead decision provides one of the most powerful tools available to disability advocates seeking to develop community services since the passage of the Americans with Disabilities Act (ADA).

What is Olmstead anyway?

The Olmstead case was filed on behalf of two women, L.C. and E.W. who were dually diagnosed with mental illness and mental retardation and institutionalized in a Georgia State Psychiatric Hospital. These individuals wanted to live in the community and the professionals providing their treatment had determined that their needs could be met in the community.

The state of Georgia, however, did not have any suitable community placement, so both women remained hospitalized.

The Supreme Court found that unjustified isolation in an institution is discrimination based on disability and a violation of the ADA. The Supreme Court decision, however, established some parameters regarding institutionalization.

The Court clarified that ADA does not require an end to institutional placements for those who need them, that the judgments of treating professionals should be given broad discretion, and that community placements should not be imposed on patients who do not want them. The Court also was sensitive to the cost of providing community placements. It suggested one way a state could demonstrate that it was responding to the Court’s ruling was to establish a comprehensive plan for placing qualified people in less restrictive settings and a waiting list that moves at a reasonable pace to place people in appropriate community settings.

What is North Carolina doing?

To North Carolina’s credit, the state has not challenged the Olmstead ruling and instead has seen the case as an opportunity to strengthen the community system. The State also has expanded the planning process to include populations not specifically named in the lawsuit, including children and substance abusers.

The General Assembly recently appropriated $3 million for Olmstead planning and initial funds to develop community services for individuals who desire and are capable of leaving institutions. The Department of Health and Human Services has initiated a comprehensive planning process that will provide a report and recommendations to the General Assembly in the fall on how to proceed. The Division of Mental Health, Developmental Disabilities and Substance Abuse Services, as one of the major players in this planning process, has established an Olmstead Steering Committee with individuals from within the Division and representing providers, families, consumers, and advocates. Beth Melcher, Director of Government Relations for NAMI North Carolina, and NAMI North Carolina President Eileen Silber are members of this steering committee.

What can you do?

As part of the planning process, the Department of Health and Human Services is holding four public meetings.

This is a critical opportunity for families and consumers to have input on what they think the State should do to respond to the Olmstead decision—-what type of community services will be needed, how should individuals be assessed, what type of providers and provider training will be needed, what type of funding support is needed.

If you cannot attend one of the remaining meetings, you can still provide input by emailing comments to olmstead@ncmail.net.

NAMI North Carolina urges you to participate in whatever manner you can.

September 20^th from 6-9:30 p.m.

at the Wallace H. Kuralt Centre, Mecklenburg County DSS Office,

301 Billingsley Road, Charlotte

and

October 4^th from 6-9:30 p.m.

at the Buncombe County Health Center, 31 Woodfin Street, Asheville

For more information regarding these meetings, contact your affiliate president, the state office, or the website at www.dhhs.state.nc.us/docs/olmstead

Fall Institute to Focus on Legal Issues

The beautiful Blowing Rock Assembly Grounds will be the setting for NAMI North Carolina’s Fall Institute on "Navigating the Legal System Successfully," September 30. Our host affiliate, NAMI High Country, promises attendees great hospitality, cool fall weather, and at least the beginnings of "color" at the top of the surrounding mountains.

Mark Botts from the Institute of Government at UNC-Chapel Hill will lead off with a plenary address on Confidentiality Rules: Preserving Rights While Also Involving Families.

Well versed in the applicable North Carolina and federal laws governing confidentiality of medical records, Botts will help attendees understand the trade-offs faced by persons with mental illnesses and their families, and by providers of services. Appropriate legal protections, especially for adult consumers of mental health services, are more important than ever in our electronic age. Too often the rules haven’t been fully understood or properly applied, and families have been left out of treatment planning, discharge planning, and other forums where their input is crucial.

Two other plenary sessions will follow. The Risks You Run When You Run a Nonprofit features Robert L. Guthrie, President/CEO of the Asura insurance agency in Research Triangle Park, which specializes in insuring nonprofits against legal liability. Ever wonder whether "somebody might sue us" for doing what we do? Guthrie will be able to tell us.

Enforcing Client Rights is the important topic for long-time NAMI supporter Charlotte F. Jordan, LCSW, recently appointed Branch Head for the new Advocacy and Client Rights Branch of the NC Division of MH/DD/SA Services.

A rich selection of concurrent workshops will conclude the day: estate planning for families of persons with disabilities, guardianships and alternatives to guardianships, programs for prisoners with mental illnesses and parent advocacy during the individual education plan process.

As usual, registration fees and lodging costs have been kept as low as possible. Brochures have been mailed, and you can also register on line (www.naminc.org).

We’ll see everyone in Blowing Rock September 30!

It Is Simply Not Good Enough
by Eileen Silber

Over the summer I have had phone calls from and have met with families who are just beginning their experience with a mentally ill family member. Some are receiving care in the private system and others in the public system. Wherever the person is being treated, the gaps in the care that should be available, piled on top of a severe mental illness, have created incredibly difficult family situations.
For those families with children, it is particularly heart rending. One family with private insurance was told by the treating professional that the child needed intensive other children in the home. The insurance company, second guessing the professional, would only agree to provide once-a-week therapy. That is not adequate care and it is simply not good enough.
These stories are being repeated across our state over and over again, with only the names changed to protect…? At this writing, Broughton Hospital in Morganton will not accept new patients because of serious and dangerous overcrowding. Those who need hospital care are being sent to the other three state hospitals, a very long car trip for someone in crisis. That is not adequate care and it is simply not good enough.
Our task remains what it has always been. We must continue to speak for all the families and individuals who need care and can't get it. Whether it is because an insurance company or HMO said no, or whether the public system doesn't have the money to provide it, in the long run for that family, that is not adequate care and it is simply not good enough.

So let your voice be heard, at Area Board meetings, at public hearings, at County Commissioner meetings and with your legislators. Nothing will change until we persuade others of the worth and necessity of treatment for ill people.

WANTED—

Your Young Family Program at NAMI North Carolina produces a quarterly newsletter, Insights.

Additionally, three or four times a year, NAMI publishes its newsletter, Because Kids Grow Up, which is full of timely information geared toward young families.

We believe that these free newsletters provide important and useful information for families and mental health professionals.

If you would like your name to be added to the Young Family Program mailing list, please contact Linda Swann at the NAMI North Carolina state office.

What are you and your local NAMI group doing for Mental Illness Awareness Week? MIA Week begins October 1 and runs through October 7, 2000.

If your affiliate has not made elaborate plans for a candlelight vigil or a major media event, it is not too late to make an impact in your community.

If each of the 2000 families who are members of NAMI North Carolina puts brochures in one church, doctor's office, library or pharmacy, that's 2000 locations where citizens of our communities can learn about the National Alliance for the Mentally Ill and begin to learn about brain disorders.

If we touch just 2000 people with our message, we could potentially double our membership through this effort.

Please, do your part. Call your affiliate president and see how you can get involved today.

NAMI takes Mental Illness Awareness Week to the Web

From NAMI E-News,  August 1, 2000

To keep pace with the rapid changes taking place around us—particularly those resulting from widespread access to and use of the internet—NAMI is offering Mental Illness Awareness Week (MIAW) materials online for the first time this year.

All items previously included in printed packets remain available in the online version and have been completely updated and developed around the theme "Turning Promise Into Practice." Putting the materials completely online also allows NAMI to offer many more items than every before: key messages, a media primer, sample press materials, special-event ideas, promotional items, links to other support materials, and camera-ready art for newsletters, flyers, T-shirts, stickers, and more. And to ensure user-friendliness, step-by-step instructions for downloading and printing these materials also are included.

Taking MIAW to the internet will allow NAMI to make the materials even more widely available, even internationally, and enhance our ability to distribute them most cost effectively. These were important considerations at a time when NAMI is facing increasing demand for services and a growing strain on available resources.

We recognize this is a new way of doing business for NAMI and, as a first-time-ever endeavor, we will continue to refine the MIAW web site and smooth out unexpected technical wrinkles. We also appreciate that not everyone has access to the internet, nor do they have the computer equipment to take full advantage of this new approach.

We encourage members who do not have internet access at home or in their offices to take advantage of community computer resources available at local libraries or through a commercial copy store.

The internet address for NAMI’s website is www.nami.org. Click on the MIAW design on the front page to get to a full menu of options.

We wish you much success with your MIAW efforts. Together, we are making a difference.

The Criminalization of People with Mental Illness

The following excerpts from NAMI’s "Where We Stand" paper were printed in NAMI Moore County’s August newsletter. They are reprinted here for the benefit of all NAMI North Carolina members. For more information, visit the NAMI website at www.nami.org

NAMI’s Position: Treatment not Punishment

NAMI believes that persons who have committed offenses due to states of mind or behavior caused by a brain disorder require treatment, not punishment. NAMI believes that prison or jail is never an optimal therapeutic setting. NAMI believes that mental health systems have an obligation to develop and implement systems of appropriate care for individuals whose untreated brain disorders may cause them to engage in inappropriate or criminal behaviors.

Treatment while in correctional settings:

NAMI believes that states and communities have legal and ethical obligations to provide people with brain disorders humane and effective treatment while in correctional settings.

Violence:

NAMI believes that, in the overwhelming majority of cases, dangerous or violent acts committed by persons with brain disorders are the result of neglect or inappropriate or inadequate treatment of their illness.

Insanity defense:

NAMI supports the retention of the "insanity defense" and favors the two-prong test that includes the volitional as well as the cognitive standard. NAMI opposes the adoption of "guilty but mentally ill" statutes. NAMI endorses the adoption of state systems providing comprehensive care and treatment for individuals found "not guilty by reason of insanity" in both hospital and community settings.

Parole and probation, transitional services:

NAMI believes that states must adopt systems for assisting individuals with serious brain disorders who have served sentences and are eligible for release on parole with appropriate treatment and services to aid their transition back into the community.

Death penalty:

NAMI opposes the death penalty for persons with brain disorders.

Mental Health Parity

to Make Debut During this Year’s Open Season

by Stephen Barr, Washington Post, August 4, 2000

This year’s open season for the Federal Employees Health Benefits Program will be held from Nov. 13 through Dec. 11, the Office of Personnel Management has announced.

The open season gives employees and retirees a chance to rethink their health care needs, assess what their coverage costs and change insurance plans—although in most years relatively few enrollees switch. OPM estimates that the average premium will jump 8.7 percent in 2001, but the actual increase will not be calculated until OPM’s negotiations with the insurance companies end this month.

Next year’s health care plans, for the first time, will offer "mental health parity," aimed at helping patients obtain additional or more frequent treatment in an affordable way.

OPM expects the insurance companies to provide coverage for mental health and substance abuse that is identical to traditional medical care in its deductibles, co-payments and number of office visits allowed.

But federal employees will need to carefully check out the coverage rules. Large carriers probably will offer enhanced mental health benefits through their preferred provider networks of doctors, hospitals and clinics. That means employees who go outside the network could pay more or encounter coverage restrictions when they file claims.

Children and Mental Health: The Surgeon General's Report

You may already know that Dr. David Satcher, Surgeon General of the United States, released a lengthy report last year on Mental Health. Did you know that he included an entire chapter on children's mental health? Dr. Satcher covers many child-related topics, including theories of development, risk factors and prevention, mental disorders in children, treatment strategies, service interventions, family support, and service delivery.

The report offers a basic breakdown, by disorder, of children ages 9 to 17 whose mental disorders are severe enough to cause impairment. The prevalent disorders are anxiety disorders (13 percent); mood disorders, such as depression (6.2 percent); disruptive disorders, such as conduct disorder (10.3 percent); and substance use (2 percent).

Some warning signs that a child may need help are outbursts of aggression, difficulty paying attention, fearfulness, shyness, distress when habitual behaviors are interrupted, difficulty understanding language, food fads, hurting animals, destroying property, abusing substances, talking about hearing voices or seeing things that are not there, drastic or sudden changes in habits, mood, or eating patterns.

• The range of what is considered "normal" in children is wide, but children and adolescents can and do develop mental disorders that are severe and greatly impair their ability to function. Therefore, it is critical to evaluate their mental health in the context of family, social, and cultural expectations about what is age-appropriate behavior, thinking, and emotions.
• Approximately one in five children and adolescents experience the signs and symptoms of a DSM-IV disorder in the course of a year, but only about 5 percent fall into the category that providers call "extreme functional impairment."
• Most children who need mental health services do not get them.
• Mental disorders and mental health problems affect families in all social classes and backgrounds. Yet some children are at greater risk, perhaps due to poverty or the mental illness of a parent. Preventive interventions, like educational programs for young children, can be effective in reducing this risk.
• There is a range of treatments that work.
• Primary care facilities and schools are the main places for screening children and adolescents for these disorders but trained staff are limited.
• A "systems" approach is the most effective way to address the problems children and their families experience as a result of these disorders.
• Cultural differences make access to services more difficult for children of different ethnic/racial backgrounds.
• Families are partners in the treatment of children for mental disorders.

You can access the entire Surgeon General's report on mental health by signing onto NAMI's home page, www.nami.org.

The Covenant with North Carolina's Children is partnering with the NC Budget and Tax Center to sponsor a series of free seminars across the state. The seminars will focus on state budget and tax policy issues, the fiscal outlook for next year, and the state of child advocacy in North Carolina. Target audiences include nonprofits working on children's issues, state and local officials and staff, and interested members of the public.

The Covenant needs assistance in organizing these meetings. They need help with publicity, securing a facility, providing refreshments, taking RSVPs. The Covenant has money to cover these expenses.

If your affiliate would be interested in this effort, please contact Linda Swann or Beth Melcher at the state office, 1 (800) 451-9682.

and I Vote, I Count Target Non-voters

ACCESSvote 2000 is a nonpartisan voter education project designed to increase the participation level of persons with disabilities in North Carolina’s electoral process.

It is estimated that there are 60,000 North Carolinians of voting age with disabilities that are not yet registered to vote. ACCESSvote 2000 will encourage voter registration and electoral participation among these voters, and secure the polling place access necessary for their full civic participation.

There are three primary goals of ACCESSvote 2000:

• Increase service provider compliance with voter registration requirements of National Voter Registration Act. (NVRA). This act, better known as the "motor voter" law, requires that social service providers that receive federal and state funds register clients to vote if those clients would like to do so. ACCESSvote 2000 will work to insure that public and private service providers comply with this law.

• Encourage get-out-the-vote efforts among people with disabilities. As part of our "I Vote, I Count" initiative, NAMI is collaborating in this effort to encourage get-out-the-vote efforts within the disability community.

• Work with state and local elections officials to insure polling place access. ACCESSvote 2000 will work with the NC State Board of Elections, local boards of elections and others to insure that all voters can utilize polling places on election day. Plans include working to provide tactile and Braille ballots, ensure adequate accessibility for wheelchair users and educate election officials about accessibility issues.

If you would like to get involved or need more information, contact Joe Donovan, at (919) 274-2595, or email j_donovan@hotmail.com

New Endowment Fund Started

NAMI North Carolina has begun a new endowment fund at the North Carolina Community Foundation with a generous opening gift from long-time NAMI North Carolina supporters Breon and Ray Allen, of Biscoe, North Carolina.

Unlike the two current endowment funds, monies contributed to this "NAMI N.C. Endowment" will be managed by the Community Foundation rather than the NAMI North Carolina Board of Directors, and will remain under the control of that Foundation’s Board.

Endowments are established to sustain the work of NAMI North Carolina indefinitely into the future. Monies contributed into the fund are prudently invested, and only the income earned from the investments is used for day-to-day operations or special program needs. When possible, income is added to the principal and re-invested, so that the endowment grows both from additional contributions and from investment earnings. NAMI North Carolina’s first endowment fund began with an initial contribution of $12,500 in 1990; by June 30, 2000, it had grown to a total value of $105,460.. A special endowment begun to honor former president Dave Silber in 1995 has more than doubled its value in the last five years.

The North Carolina Community Foundation was begun in 1988 and remains the only statewide community foundation in North Carolina. Community foundations provide donors a vehicle for pooling their resources and thereby accomplishing charitable goals which they as individuals would not be able to achieve. Administrative costs are kept down by the economies of scale this "pooling" creates, and by the fact that the Foundation itself is not-for-profit.

The new NAMI North Carolina endowment at the North Carolina Community Foundation is a good vehicle for a contributor who wants to be absolutely sure that his/her gift will keep on giving year after year into the future.

Information on giving is available from Paul Bamford at the NAMI North Carolina state office, or from any office of the Community Foundation: 919/828-4387 (Raleigh); 828/586-4616 (Sylva); or 252/491-8166 (Point Harbor).

George and Mary Gay epitomize how something negative can be transformed into something positive.

Like most NAMI members, George and Mary found NAMI Wake County after their son was diagnosed with mental illness. "We tried to offer David everything through the private sector," said Mary, "but finally our insurance ran out and we had to turn to the public system. There was nothing available. I became so angry I knew I had to do something. Through NAMI I could turn my anger into advocacy."

Mary focused her energy on NAMI, serving as affiliate president and treasurer, and was instrumental in the local effort to preserve the Dorothea Dix Hospital campus from highway development. For four years, Mary coordinated volunteers in the state office prior to there being staff. She served two terms on the NAMI North Carolina state board and was a leader in advocacy efforts, representing the organization in the legislature and on Coalition 2001. She also was named to the Legislative Mental Health Study Commission in 1996.

George focused his energy on the public mental health system. He began by monitoring the meetings of the local area program board. Before long he was appointed a member of the Board and has served in that capacity for 12 years. George was instrumental in establishing a human rights committee in Wake County. He also has served on the human rights committee at Dorothea Dix hospital since 1988. George received NAMI North Carolina’s Advocate of the Year Award in 1996. He became involved with the Council of Community Programs, representing Area Mental Health Programs and for the past two years he has served as president of the Council’s Board of Directors. For his work, he was given the Council’s 2000 leadership award.

Even though David died in 1998 from a belatedly diagnosed brain disorder, Mary and George have continued to be active advocates.

George continues to serve on numerous committees. Mary serves on the Board of Directors of a local facility providing housing for persons with mental illness and has been instrumental in transitioning this facility into one that provides more treatment and support services. George also has worked within their church to initiate a program to raise awareness of the needs of people with disabilities, including mental illness. Both continue their long-time commitment as workers at the concession stand at Carter-Finley Stadium, a fund-raising project for NAMI Wake County.

Mary and George say their NAMI experiences have led to a great deal of personal learning and growth and the opportunity to meet wonderful people and outstanding friends. "There are opportunities to make a difference if you take advantage of them," says Mary. "But you need to be persistent and not give up when things get difficult. The effort does pay off."

Remember NAMI North Carolina in your will. A gift through your estate will help ensure NAMI North Carolina’s continuing fight for improved care, housing, research, and a better quality of life for persons with mental illness. If you would like to support NAMI North Carolina through a bequest, please speak with your lawyer.

• Employees of the state of North Carolina and the Federal government soon will be making their designations for the State Employees’ Combined Campaign and the Combined Federal Campaign for their fall campaigns. NAMI North Carolina is also a participant agency in several municipal and United Way campaigns, including the Triangle United Way.

NAMI North Carolina will be listed in the campaign materials and can receive designated gifts through these campaigns.

• Thanks to NAMI Rowan for their recent contribution to the Family-to-Family Program.

• Thanks to NAMI Western Carolina for its contribution to help NAMI North Carolina cover the yearly fee to NAMI for ongoing national support for the Family-to-Family Program.

Thanks to Janssen Pharmaceutica for its donation to help defray the cost of meals for our July training of Family-to-Family teachers. On July 16, 19 new teachers left Research Triangle Park prepared to teach the Family-to-Family Course in their communities. Congratulations, new teachers, and thank you for your dedication to our families.

October 12

4th Annual Conference on Mental Health Topics, An Era of Change in Public Mental Health in Morganton. Speakers include Ralph Campbell, Jr., State Auditor; Dr. J. Iverson Riddle, Director, Div. of MH/DD/SAS; Marc Fenton, Principal Investigator and Grant Blair, Project Manager both of Public Consulting Group, Inc. Registration is $35; contact Jonnie Houck at The Broughton Foundation, (828) 433-2331, or email, jonnie.houck@broughtonhospital.org

October 16 and 17

Behavioral Health Care Management Conference 2000, in Chapel Hill, sponsored by Wake Area Health Education Center. Call (919) 350-8547; email, wakeahec.org/bhc2000

November 2 and 3

8th Annual N.C. Conference on Innovative Approaches in Psychosocial Rehabilitation, Empowerment in the New Millennium, John Umstead Hospital, Butner. Call Pat Grissom (919) 575-7974.