April 2000

Legislators are flocking to Raleigh to participate in a wide range of legislative study committees, including several that impact mental health. These committees can meet only when the General Assembly is not in session.

With the May 8th opening of the session, many study committees are working hard to complete their work. But with all this studying, will legislators pass anything? Below are summaries of the work of the major study committees and the prospect for legislation.

This committee has heard a number of Division reports in response to headlines on unreported deaths in facilities and the crisis at Dix Hospital, as well as testimony from the public on service needs and deficits in the system of care. A panel focusing on issues related to the referral of people with mental illness into adult care homes also was heard. NAMI North Carolina Government Relations Director Beth Melcher was a member of the panel. This Legislative Committee will receive and consider the recommendations of the State Auditor's report on the MH/DD/SA system in April and will need to determine what recommendations it will carry forward from the report into the legislative session.

The committee also was charged with looking at two issues: conditional release from state psychiatric facilities and regulating the use of seclusion and restraint in facilities.

Conditional release involves establishing conditions for individuals currently involuntarily committed to be released from the state psychiatric hospitals. The committee heard a report from a work group comprised of a wide range of consumers, government representatives, and advocates, including NAMI North Carolina, that recommended that conditional release legislation not be pursued at this time. The committee accepted this recommendation.

The work group reported, however, that the current outpatient commitment law is poorly implemented. While state government can provide training, improve coordination, and gather better data, it will require additional funding to provide the outreach and follow-up services necessary to successfully implement the current law. The committee did not take action on this recommendation.

The committee is developing legislation to regulate the use of seclusion and restraint in all public and private mental health, residential child, and adult care home facilities. This proposed legislation also will require mandatory reporting of deaths. Beth Melcher represents NAMI North Carolina as a non-voting member on the sub-committee developing this legislation. In the aftermath of several high profile deaths of children as well as the Charlotte Observer series detailing unreported deaths, legislators want to respond to the situation. This proposed legislation has a good chance of passing.

This committee has heard extensive background information on parity, including experiences from other states. A panel discussion, pro and con, also has been presented to the committee. Opposition continues from insurance and business groups.

The focus of their opposition, however, has shifted somewhat. Rather than opposing mental health/substance abuse parity directly, they are opposing the cumulative effect of multiple "mandates" which they claim is raising the costs of insurance to a prohibitive level.

The committee will be developing a report to the General Assembly on parity and will likely propose MH/SA parity legislation in some form. Whether this legislation is actually considered in the upcoming session is unknown. Legislative leaders will meet prior to the session to determine which study committee bills to consider.

See the NAMI North Carolina website (www.naminc.org) for the full text of Beth Melcher's presentation on adult care homes to the Legislative Committee on MH/DD/SA.

The report on the MH/DD/SA system coordinated by the state auditor will be available April 1 at

www.osa.state.nc.us Go to audits then performance audits, to find it on a list.

NAMI North Carolina’s Spring Conference on May 12 and 13 in Winston-Salem brings many distinguished speakers together for the benefit of NAMI families and professionals.

Kicking off the conference is Mark Hamner, MD, Associate Professor at the Medical University of SC and Director of the Post-Traumatic Stress Disorder Clinic at the VA Hospital in Charleston, SC.

Harold Koplewicz, MD, Vice Chair of Psychiatry at New York University Medical Center, will address the conference Friday morning and will be available afterwards to sign copies of It’s Nobody’s Fault: New Hope and Help for Difficult Children and Childhood Revealed.

NAMI’s Deputy Executive Director of Legal Services, Ron Honberg, JD, will present information on restraints and emerging legal issues Saturday.

Workshops will be presented by experts in their fields on many topics of interest and value to our families and professionals.

See you in May!

The historic Carter House in Salisbury, renovated in the early 1980s into eight apartments which have housed persons with mental illness and their families, has been donated to the Piedmont Area MH/DD/SAS Program by the Rowan Advocates for the Mentally Ill.

The Rowan Advocates, headed by NAMI pioneers Sam and Mary Oma Carter, has officially dissolved and donated its operational monies to NAMI North Carolina—-a gift of $10,000.

The Carters were instrumental in the founding of NAMI North Carolina in the early 1980s, shortly after the Rowan Advocates began. Now retired in Durham, the Carters spearheaded the effort to acquire and convert the beautiful house near downtown Salisbury, soon baptized the Carter House. Funds were raised under the title, "A Desperately Needed Home." It has housed many individuals and families over the years, and will continue under the supervision of the Area Program.

Sam and Mary Oma also contributed some historic documents, which will be incorporated into NAMI’s collection. Included were the original articles of incorporation for the Rowan Advocates, which sustained the operations of the House and vigorous advocacy for persons with mental illness for many years, along with fund-raising brochures, a public thank-you for the donors who made the project possible, and invitations to its opening. "A wonderful piece of an important history," said Executive Director Paul Bamford, as he extended NAMI’s heartfelt thanks to Sam, Mary Oma, and all of the Rowan Advocates.

The public system of care for those with serious brain diseases continues its downward path. What was barely adequate, now nears a new low.

It is past time for true and effective leadership and the time has come for Governor Hunt to demonstrate that he is indeed the Chief Executive of North Carolina and to assume the leadership and responsibility so that the children and adults of this state with severe and persistent mental illnesses receive adequate treatment.

I ask all of you to be a part of this effort. Please, send the Governor a letter and let him know we need his help and concern and hands-on interest. Delegating this effort to others has not proven successful. There are so many pieces in this puzzle, pick the issue you know best and write. Let him know how budget cuts have affected services in your area. You might tell him about the new medicines that have proven so effective and ask him to tell you why so many people must still suffer the awful side effects of the older inadequate ones.

Or tell him about our people caught up in the criminal justice system and in jail--more sick people in jail than in hospitals, and at far greater cost. Let him know that the people we care about are poor and need a decent place to live.

And he really could help to enact parity health insurance as the bill is brought before the legislature this spring. His effort could make the difference between success and failure. Right now we have the worst of both worlds. On the one hand the public system dollars and the services they pay for have been cut consistently. On the other hand, we can't get insurance coverage, either because it’s not available or available but with extreme extra costs. Ask the Governor to right this wrong. Either provide enough state dollars for decent care, or pass parity and allow us to buy private insurance. But to allow insurance companies to just say, "No!" discriminates against those with diseases of the brain rather than of the body. We all pay the price.

We have written letters in the past and have gotten quite good at it. Do it again.

Governor Hunt must hear that this collapsing system absolutely has to be rescued and we look to him to use his influence and the power of his office to accomplish it. This could be another piece of his legacy to North Carolina.

Write to: James Hunt, Jr., Governor
State Capitol
116 W. Jones Street
Raleigh, NC 27603-8001

ADHD and Ritalin Use
by Harold Koplewicz, MD

Attention deficit hyperactivity disorder (ADHD) is still so frequently dismissed as childhood exuberance or "just a phase." Most adults do not realize how it differs from behavior that is simply on the active end of normal.

Children with the disorder are 10 times as likely as the average child to drop out of high school. They have a higher incidence of drug abuse. This is a real psychiatric disorder and requires treatment.

The latest study, published in Journal of the American Medical Association, found that between 1991 and 1995, there was a twofold to threefold increase in the use of Ritalin and similar drugs in children aged 2 to 4. About 1 in 100 children received Ritalin in 1995. Is 1 percent of children taking such medications too high?

Unfortunately, we have no information about the percentage of very young children who meet the criteria for an accurate diagnosis of ADHD. For those who do, medications like Ritalin are the best treatment we have.

Understandably, there is concern that medications may affect brain development. Encouragingly, the evidence we have, although limited and crude, does not suggest that development is compromised by Ritalin.

Critics are also concerned that some medications for psychiatric illness are prescribed for preschoolers without approval by the Food and Drug Administration for use in that age group. But this practice holds true in other areas of medical care.

One asthma medication, for example, is frequently given to young children even though the FDA has not approved it for children. There is ample evidence of Ritalin’s effectiveness for school-aged children with ADHD, and some evidence that it helps younger children.

What should be at issue is not the clinical wisdom of giving Ritalin to young children, but who gives it and how the decision is made. Unfortunately, pediatricians and general practitioners are usually not trained to undertake the necessary clinical evaluations to make psychiatric diagnoses and monitor treatment.

Unfortunately, with economics now the driving force in medicine, we are unlikely to see better psychiatric care for young children.

Increasing use of Ritalin is not necessarily cause for alarm. The real outrage is that an estimated 20 percent of nearly 10 million American children and teenagers who suffer from diagnosable psychiatric illnesses ever receive help.

Promoting Employment
by Mike Massey, Program Specialist
NC Division of Vocational Rehabilitation Services

On March 9^th, Durham was the site for a forum involving consumers, advocates, agency stakeholders, and Social Security Administration (SSA) officials from around the state, region, and country at which details of return to work legislation for consumers receiving SSI and SSDI were presented.

The new law, The Ticket to Work and Work Incentives Improvement Act was signed into law on December 17^th of last year and will be implemented in various stages over the next three years. Major provisions of the Act include:

• The Ticket to Work, a new voluntary system that allows consumers choice among vocational rehabilitation service providers in order to get assistance in increasing or beginning work and getting off SSI and SSDI cash benefits,
• New Medicaid options that allow states to extend Medicaid coverage to more individuals who work and also allow states to extend Medicaid buy-in options for workers with disabilities,
• Increasing work incentives such as allowing individuals to keep Medicare longer after they return to work and provisional reinstatement of SSDI cash benefits for workers who need to re-apply for payments.

Recipients will receive a "ticket" from Social Security that they will give to an "employment network, " a provider of vocational rehabilitation services that either renders or networks with other providers to provide an array of vocational rehabilitation services. The network will be paid by Social Security if disability recipients work at a level sufficient to allow cash benefits to stop. The network will continue to be paid a percentage of the savings to Social Security for 60 months after cash benefits stop.

The North Carolina Division of Vocational Rehabilitation currently plans to become a network and believes that its mission to assist individuals to more fully realize their employment potential will allow them to compete favorably with the other networks.

Many details regarding the issuance, transfer, and other aspects of the ticket system were left for SSA to establish through regulations, and that process is currently underway.

North Carolina has thus far not chosen to take advantage of the Medicaid buy-in option made available under the Balanced Budget Act of 1997. By choosing to do so and by extending the allowable income as the new Act allows, our state would be helping people who have disabilities to choose to go to work without losing medical insurance coverage.

For more information on the Ticket to Work and Work Incentive Improvement Act, consult the Social Security website at http://www.ssa.gov/legislation/legis_bulletin_121799.html

NAMI North Carolina Website, www.naminc.org

About three years ago, NAMI North Carolina was one of the first state organizations in the country to develop a website on the internet. Today, our website is visited by both members and non-members, along with professionals who go to it to get useful information such as:

• Who we are and what our mission is
• Board members and office staff
• Archived Clippings back to Nov. 1998
• Conference information
• Advocacy information
• Children’s issues and Insights newsletter
• Legislative issues and the legislative manual
• Family-to-Family training schedules
• Consumer information from NC MHCO
• Newsroom information and fact sheets

Last year the Affiliate Bulletin Board (Affiliates button) was added to the website to allow local affiliates to post their own information about meetings, activities, contacts, etc. We are a pioneer in providing this access to local affiliate information on the internet.

More recently, the entire website has been made-over to make it faster and easier to navigate, and a new section, the On-Line Store, was added. In the On-Line Store, you can use credit card payment to join as a state member, make a donation to NAMI North Carolina, purchase NAMI North Carolina publications, and register for state conferences.

Also, new to the website is a recommended reading list that has been added to the Education page. By clicking on any book in the list, a user can go to the Amazon.com website to purchase the book. For any purchase made this way, NAMI North Carolina receives a rebate, so it’s a great way to make a contribution to NAMI North Carolina while paying normal Amazon.com prices including discounts.

If you haven’t been there recently, take a look.....www.naminc.org.

The most commonly diagnosed behavior disorder in children, ADHD affects an estimated three percent to five percent of school-age children. These children act before thinking, are restless, have trouble concentrating, are easily distracted, and often feel socially isolated from their peers. Cooperation with parents, teachers, and coaches is difficult.

According to the DSM-IV, symptoms should occur before age seven, must last for more than six months, and occur in two different settings (home and school, for example) before a diagnosis is made.

There are actually three different types of ADHD, each with different symptoms: Predominantly Inattentive Type, Predominantly Hyperactive/Impulsive Type, and Combined Type.

Dr. Russell A. Barkley, well-known expert on ADHD, says research on ADHD-Predominantly Hyperactive-Impulsive Type strongly indicates that this type of ADHD is not an attention problem but difficulty with disinhibition. It is often comorbid with Conduct Disorder, Oppositional Defiant Disorder (ODD), and substance abuse.

ADHD-Predominantly Inattentive Type is an attention problem and not comorbid with Conduct Disorder, ODD, or substance abuse. Both types may be comorbid with depression.

Children with the Combined Type, the most common form, have a combination of the inattentive and hyperactive-impulsive types.

Hyperactive-Impulsive Type children do not learn to wait or respond to time limits; they react immediately and impulsively to their environment. They remain similar to very young children in this respect. For example, a baby responds immediately to noises in his environment or cries when hungry or tired. Just as young children have not learned to delay gratification, Hyperactive-Impulsive Type children have not learned this higher order of behavior. Thus, they remain disinhibited.

At least 25% of children with ADHD also have some type of communication or learning disability. Because they have poor self-discipline, they often need boundaries. They do not do well with tasks that are repetitive, uninteresting, or take more effort. They will learn but it may take them longer. Therefore, teachers and professionals are encouraged to give them engaging tasks that offer immediate, frequent rewards.

Brain research supports a lack of development or function in the parts of the brain that control disinhibition and higher order behaviors like planning, organizing. Biochemical studies have documented that children with ADHD have lower levels of the neurotransmitter dopamine. There is also strong evidence that ADHD has a genetic basis in some cases.

For more information, see Taking Charge of ADHD by Russell A. Barkley, PhD.

• Dr. Arthur Robarge has been named the Deputy Director of the Division of Mental Health, Development Disabilities and Substance Abuse Services.

• Curious where the candidates for the state’s top offices stand? See NAMI North Carolina’s website (www.naminc.org) for the Coalition 2001 Survey results.

• Applications of members running for the NAMI North Carolina Board of Directors, and proposed bylaws changes, will be mailed to affiliate members soon. Ballots, which must be returned to the state office for tallying, will be included in this packet. Results will be announced at the Annual Membership Meeting at the Spring Conference on May 13. The NAMI North Carolina Board of Directors urges all affiliate members to vote! This will be your only opportunity!

NAMI Notables                                                    Rich Greb

Over the last five years, NAMI North Carolina staff members have arrived at work to find furniture moved, new icons on computers, ceiling tiles askew, and office equipment updated and improved. "You have to have the basic stuff. How can you have an efficient organization if you can't work with information?" says Rich Greb, the night visitor.

Rich started with the installation of a network so that staff could share a laser printer. He selected a computer programmer, and the Helpline database was born. Then he helped NAMI North Carolina obtain faster computers with updated software. He set up a website with bulletin boards for affiliates. Now e-commerce is on line.

Gloria Harrison, Helpline Coordinator for NAMI North Carolina, says, "Rich dragged us kicking and screaming into the 21st Century. We're lucky to have him as a volunteer consultant."

The Web "gives us an edge to get our information out. We're taking advantage of the latest technology" explains Rich. Executive Director, Paul Bamford says, "I love to brag about our web site and our computer system and our new e-commerce capacity when I talk about NAMI; it really makes us look good. We owe all of that to Rich."

Rich is a past president of both NAMI Wake County and NAMI North Carolina. Today he serves on the Wake Human Rights Committee and Wake Human Services Continuum of Care Committee. In addition, Rich is on the NC Mental Health Planning Council, and most recently, he was appointed to the Board of Directors of the Governor's Advocacy Council for Persons with Disabilities.

Rich stresses the importance of affiliates. "We need to provide as many of the benefits of NAMI to as many people as possible. We grow by having viable affiliates, because that is where support begins. You can't have everyone in the state talking to Gloria. If you have local affiliates, you also have an organization behind you to work toward improving local conditions, which you can't do as an individual."

Rich is proud to have "had the opportunity to be involved in what the organization does, where it's going, and being able to contribute to that."

Planned Gifts
by Paul Bamford

The advantages of planned gifts have become more important in recent years, as folks who have benefited from the long-running "bull market" find themselves with estates of greater and greater value.

In their various forms, planned gifts can present substantial tax advantages.

For example, in a "charitable gift annuity," the donor realizes tax advantages when he/she donates stock, cash, or other assets to NAMI (or another charitable organization); in exchange, NAMI agrees to provide monthly payments to the donor for the rest of his/her life.

In a "charitable remainder trust," the donor places assets in a trust fund which provides the monthly income, then is dissolved and the assets passed to NAMI upon his/her death.

A version can be done with real property: in a "retained life estate," an individual could donate to NAMI his/her home while retaining the right to live in the house for the rest of his/her life.

In any of these forms (or others), the donor continues to enjoy the benefits of the asset, realizes the tax advantages of a donation, and still makes a significant contribution to the important work of NAMI North Carolina or other charity.

Additional information on this way of "making a difference" is available from Paul Bamford at (919) 788-0801 or (800) 451-9682.

We have all seen or heard from other families the pain that comes from criminalizing the mentally ill. Incarcerated inmates who suffer from mental illness are treated like caged animals in some facilities. This causes pain and suffering and setbacks in the course of a person’s illness.

Diversion of persons with mental illness from incarceration is working. Nine project sites around the nation are established to assess the effectiveness of the three major types of jail diversion programs:

1. Court-based Diversion. Broward County, Florida and King County, Washington are piloting mental health court projects that deal only with misdemeanor offenses. Elements include a dedicated team, a court monitor, and a single point of contact for the offender and a separate courtroom.
0. Pre-booking Diversion. The Memphis, Tennessee pre-booking jail diversion program consists of a Crisis Intervention Team comprised of highly trained Crisis Intervention Officers. These officers have received training in psychiatric diagnosis, substance abuse issues, de-escalation techniques, empathy training and legal training. The program includes immediate responses, referrals and/or transportation to emergency services.
1. Post-booking Diversion. Provides for conditional release—-charges are dropped and expunged from record if the person successfully completes a treatment program.

NAMI?...Never Heard of It
by Beth Greb

Everyone has heard of Tide Detergent, Campbell's Soup, IBM, Amazon.com.

When we say we are members of NAMI, most people say, "What?" So, how do we get name recognition? Slick advertising campaigns have to be left up to NAMI, but you, the affiliate member, can be effective in your own way.

Your affiliate probably advertises in the local newspaper, and distributes brochures during Mental Illness Awareness Week. What you can do to expand your affiliate's advertising campaign, year round is to take just one site and keep it stocked continuously with information. Pick a place you go on a regular basis.

Some sites have limited space. (Put out a few business cards.)

Some sites have bulletin boards. (Pin up a flier.) Some sites have racks for brochures. (Keep a rack stocked.)

Church Public Library Pharmacy Grocery Store Family Doctor Psychiatrist Psychologist Mental Health Center Dentist

Laundromat Gym or Spa Community College Auto Repair Shop

Department Store Book Store Independent Shop Restaurant

(Tip: Talk to the pharmacist, store owner, doctor, librarian. That personal contact will get your foot in the door.)

Name recognition comes from expansive advertising. For the last quarter, the following percentages show how people calling NAMI North Carolina for the first time learned about us.

Brochure 29.8% Phone Directory 11.7%

Doctor 12.9% Web Site 14.6%

NAMI Contact 31%

You will note that 31% of callers learn about us through NAMI contacts. That’s YOU! Don’t forget to mention NAMI at every opportunity. It is a fabulous way to advertise.

April 14-16
Family-to-Family Support Facilitator training, Brown Summit.

April 27-28
Cultural Competence: Making it Happen, Research Triangle Park, Registration fee $90.  Call (919) 962-6437 for information.

May 6
STEP (Schizophrenia Treatment & Evaluation Program) Symposium, Pathway of the Mentally Ill Into the Criminal Justice System, Chapel Hill. Keynote, Dr. E. Fuller Torrey. Call Ellen Rothman, (919) 966-0018.

May 12 and 13
NAMI North Carolina’s Spring Conference, Winston-Salem.

July 2-5
The 2000 Autism Society of America National Conference, Atlanta, GA. For more information, call 1 (888) 684-4630.