April 2001

MH/DD/SA Reform Bill Introduced  
by Beth Melcher, Ph.D.

Legislation from the Joint Legislative Committee on MH/DD/SA Reform has been introduced in both the House (H381) and Senate (S374). The bills propose reform of the entire system, beginning with the state and including the local programs.

The proposed legislation does four major things. It:

· Requires the development of a comprehensive state plan for MH/DD/SA Services,

· Establishes a county-based program of governance,

· Adds to the powers and duties of the Secretary of the Department of Health and Human Services (DHHS), and

· Establishes a quality of care ombudsman program.

 

The proposed legislation requires that the Department of Health and Human Services immediately develop and implement a State Plan for MH/DD/SA services.

The State Department and Division have received a great deal of criticism for failure to manage and monitor the system of care. Many feel that it is not prepared for, nor organized, in a manner to allow it to successfully implement and monitor service expectations, federal requirements, fiscal management, client protection, and monitoring of service quality.

The bill requires that the Department develop its own detailed "business plan" –what populations of people will be served, what types of services are most effective for these populations, how does the Department and Division(s) need to be organized to carry out the job of management and monitoring, and how should we pay for this system. How this plan is developed and what is in it becomes crucial. Plan development can’t be simply an internal Department exercise or it will probably look very much like what we currently have. Opening the process for input from stakeholders will help with thinking "outside the box." This can be a marvelous opportunity to develop a very progressive state plan.

The proposed legislation establishes a new county-based system of organization and management of the delivery of mental health, developmental disabilities and substance abuse (MH/DD/SA) services that will be phased in beginning July 1, 2001 through 2006.

Every county will be required to choose between two options. They may 1) provide MH/DD/SA services themselves if they have a population of at least 200,000, or 2) participate in the administration of a multi-county program that encompasses a population of 200,000 or a minimum of five counties. In multi-county programs an administering county must be designated. Every county, either singly, or jointly with other counties, must develop a business plan for the management and delivery of MH/DD/SA services that details how the county will meet State expectations outlined in the state plan, standards, laws, and rules for ensuring quality MH/DD/SA services. Specifically, the plan must include a description of how planning for services, development of a provider network, service management, care management, financial management and accountability, service monitoring and oversight, evaluation, and collaboration will be carried out. The plan must be submitted to the Secretary of DHHS for review to ensure that the business plan meets all requirements.

The big change in the proposed county model is that instead of counties providing services through an area MH/DD/SA authority as in the current system, counties will administer the delivery of services alone or with other counties.

While this change will probably result in more fiscal accountability and stability, there is a great deal of discussion about whether counties will be willing and able to manage services.

Secondly, there is concern that in turning service management over to counties, variability in services across the state will continue and perhaps even get worse.

Alternatives to the county-based model are to establish a state regional system, or make changes to improve the current model, or to do nothing and keep the current area program structure intact.

In the current bill, under the county-based model, the Local Program Board will be appointed by the county commissioners in single county local programs and in multi-county local programs each county will appoint members.

The Local Program Board is responsible for 1) comprehensive service planning and local implementation plans, 2) reviews of local program services with the assistance of the local ombudsman, 3) plan and recommend a local program budget, 4) with the Local Ombudsman submit reports to the county commissioners that assess quality and availability of services and progress in implementing service plans, goals, and outcomes, 5) perform public relations and community advocacy, 6) recommend creation of local program services.

The local program director will be appointed by, report to, and serve at the pleasure of the county manager of the administering county. Although the composition of the new Local Program Boards is very similar to the current Area Boards, the new boards will serve a more advisory role than a governing role. They will not control the budget, contracts, or hire the local program director. Their primary role will be planning and monitoring.

The proposed legislation adds to a long list of powers and duties in the present statute. The new powers and duties primarily give the Secretary authority to implement the legislation, for example, develop a State Plan for MH/DD/SA services, review county business plans, establish monitoring and oversight procedures, establish quality standards, etc. But this section highlights how important it will be to write strong rules to raise the bar on service standards and quality of care. Without these strong rules the system will not move forward.

Another crucial piece of the legislation is establishment of an MH/DD/SA Quality of Care Ombudsman Program. There will be a State Ombudsman and 12 Local Ombudsman Programs across the state.

Local Ombudsman will be appointed by the State Ombudsman. These individuals will assist consumers and families with information, referral, and assistance in obtaining appropriate services and understanding their rights, review quality of care, and serve as liaison between consumers and families and facility personnel and administration.

The Ombudsman program can be a real resource for consumers and families trying to navigate an often complicated system. It also will provide another avenue for monitoring quality of care in the system.

The bill will now be debated in the House Mental Health Committee and in the Senate Committee on Children and Human Resources.

There is strong support for the development of the state plan. There also is support for the Ombudsman program. The local governance proposal will receive the most debate. As the debate intensifies, there is the danger that legislators will back away fromthe controversy and "give up" on major reform.

In a letter to legislative leaders of the reform effort, the NAMI North Carolina Board of Directors has taken a strong position supporting the reform process. While the letter raised concerns about the county-based model, it stated, "The worst outcome of the debate around local governance would be to do nothing. Families and consumers have waited and struggled for too long not to enact meaningful reform. We urge you to press forward with the reform legislation, to engage in open debate, and to enact changes to the legislation that will strengthen reform instead of weaken it." NAMI North Carolina is continuing to work with legislators and other organizations to make changes to address concerns and strengthen the bill.

A more detailed explanation of the bill is on the NAMI North Carolina web site is available here.

Contact members of the House Mental Health Committee and the Senate Committee on Children and Human Resources. Contact information is on the NAMI North Carolina web site. If you don’t have access to the web, call the state office and we will mail information to you.

There is Still Work to Do by Eileen Silber

This is the last column I'll write as your President of NAMI North Carolina and during my term our organization has continued to prosper and grow.

There are many pieces of good news.

There are more of us to spread the message that mental illnesses are brain diseases and must be treated with modern medicines and appropriate rehabilitation. The effort to reform the mental health system of care in North Carolina is greatly welcomed. We know how flawed the current system is and must treasure this opportunity for meaningful change.

We joined with others regarding the improper and largely unregulated use of restraints and seclusions and now better safeguards are in place to protect all the people we care about. Medicines are better than they used to be and everyone must have access to them.

It's good we have some success because that helps keep us going when there is still much to be done.

Even after organizational reform, vital services are lacking and now we're talking not enough money. All give lip service to this, but the funding crisis still exists.

The sad reality is there are good people trying to give decent and appropriate care and they are too few in number and spread way too thin.

We need parity so that some families can buy adequate insurance protection and find care in the private sector, allowing services paid for with tax dollars to go further. To exclude some diseases of the brain (i.e. mental disorders) while covering others (i.e. epilepsy and Alzheimer's) is utter discrimination.

NAMI North Carolina has come a long way in our short existence. That is due in very large measure to the few extraordinary people who are the professionals of our organization. I know how dedicated they are, how hard they work and how indebted we are for their efforts. This is my opportunity to acknowledge all of them for what they do for all of us.

And what a wonderful extended family we truly are. I thank all of you for your many gestures of support and kindness to Dave and me over the last several years. I cherish NAMI North Carolina and of course intend to continue my efforts. There is still work to do.

Social Anxiety Ups Depression Risk in Teens

Although shyness and anxiety in social situations is normal for many teenagers, for a small portion of young people it is not just a phase they'll grow out of, according to a report.

Young people whose symptoms are severe enough to be classified as social anxiety disorder (SAD) appear to be at increased risk for the later development of major depression, researchers suggest. "Our observations suggest that those persons with the combination of SAD and depression in adolescence or early adulthood are at the greatest risk for subsequent depression (compared to those with just one of the two disorders),'' according to a group of German and American researchers led by Dr. Murray B. Stein of the University of California, San Diego.

The researchers interviewed more than 3,000 people between the ages of 14 and 24, all from Munich, Germany. At the beginning of the study, about 7% of participants had experienced social anxiety disorder at some point in their lives, and about 14% depressive disorder. About 2.5% had both conditions at the same time.

Stein and colleagues found that compared to peers with no emotional disorders, young people with either SAD or depression at the beginning of the study were about three times as likely to develop depressive disorder over the follow-up period, which lasted over four years.

But the biggest predictor of later depression was the combination of SAD and depression. Compared with young people with no emotional disorders, those with both SAD and depression were more than eight times more likely to have depressive disorder during follow-up.

Youngsters with both SAD and depression at the beginning of the study were also at risk for more severe depression, the authors note in the March issue of the Archives of General Psychiatry.

Although it is not clear that social anxiety disorder is the cause of depression, many factors link the two conditions, the report indicates. Social anxiety during adolescence can affect self-esteem and social isolation, both of which have been linked to the development of depression.

Stein and colleagues conclude that the findings support the idea that intervening early with youngsters who show signs of social anxiety disorder may help prevent the development of major depression--especially among those who show some signs of depression as well.

Source: Archives of General Psychiatry 2001; 58:251-256.

People visiting NAMI North Carolina’s web site will find it chock-full of useful information. Topics include:

• NAMI North Carolina’s mission and who we are,
• Affiliate bulletin boards, listing meeting times and locations, contact information, and more (maintained by the local affiliates themselves),
• Spring Conference agenda and registration information,
• Legislative concerns, including NAMI North Carolina’s current Advocacy Agenda, Legislative Oversight Committee’s reform efforts, bills to watch, and North Carolina’s efforts on NAMI’s Omnibus Mental Illness Recovery Act (OMIRA),
• Clippings newsletters, both current and past issues,
• Children’s issues and Insights newsletters,
• Illnesses and medications links to NAMI’s web page,
• NAMI North Carolina Board members and state office staff,
• Our on-line store, where you can use a credit card to buy our Help Book and Creating a Circle of Caring, pay for your membership, give a donation, or register for the Spring Conference,
• Reading list that can connect users to the amazon.com web site,
• Links to some of the best web sites, both in North Carolina and throughout the rest of the country.

If you haven’t visited your web site recently, check it out!

Coming Events

April 20-21
NAMI North Carolina Spring Conference, Sheraton Imperial, Research Triangle Park, Partnerships for Progress: Collaboration is the Key

May 8-9
NC Guardianship Association conference, Self Determination and Guardianship, Village Inn Golf & Conference Center, Clemmons. Call (919) 782-4632 or 1 (800) 662-8706.

May 12
Eighth Annual Schizophrenia Treatment and Evaluation Program (STEP), Stigma of the Mentally Ill, sponsored by UNC-CH School of Medicine, at the Carolina Club, George Watts Hill Alumni Center. Contact Ellen Rothman at (919) 966-0018.

May 23
Coalition 2001 Legislative Rally Day, Raleigh (see article on page 6).

June 1-3
NAMI North Carolina’s Family-to-Family Teacher Training in Durham. Call the state office at 1 (800) 451-9682.

June 24-26
National Association for Rural Mental Health conference in Wilmington, sponsored by the Coastal Area Health Education Center. Sheryl Pacelli at (910) 343-0161, sheryl.pacelli@coastalahec.org or www.narmh.org

July 11-15
NAMI Convention, United By Hope...Working for Change, Washington, DC

Is there anyone who receives the Clippings newsletter who has not yet heard about the Family-to-Family Education Course? Family-to-Family will graduate its 100^th class in North Carolina this year, and now it is easier than ever to start the class in your area.

As a result of a pilot project, all new teaching sites in the state will receive a packet of materials and a handbook describing how to do outreach for the Family-to-Family course. Existing Family-to-Family sites will be receiving the handbook.

What can these new materials do for you? For those who have a number of trained teachers in the affiliate, the handbook offers ideas to coordinate affiliate and the Family-to-Family efforts for a more efficient course and a more vital affiliate. The handbook aims to relieve teachers of some of the more time-consuming tasks, and give course graduates a better sense of belonging to the larger family of NAMI North Carolina.

If you live in an area where there is no NAMI North Carolina affiliate, you can learn advertising techniques that might lead to the founding of a new affiliate.

Carole Robinson, pictured here in the January 28, 2001 issue of the Carteret County News-Times, took advantage of the techniques in the Family-to-Family Outreach Handbook to publicize NAMI Coastal Division and its Family-to-Family education classes. Carole was part of NAMI North Carolina's pilot project that helped her maximize the expertise that has been gained over the last five years of the program.

Paul and Marcia Garatt, who have taught the course ten times, spent time with Carole and outlined the best strategies for a Family-to-Family advertising campaign in Carteret County. When they left, Carole was on her own, but now had all the materials she needed for success, including an easel, poster-sized charts, name tags, a script for approaching mental health providers and a set of resource books for the first class.

Faye Shannon, of Beaufort, also was interested in teaching and participated in the teacher training in February. Later that month, with Carole and Faye Shannon as teachers, a class of 20 students began their education on mental illness and how to cope with it in the family. This first class in Morehead City will graduate in May.

Carole, who lives in Atlantic, took the Family-to-Family course in New Bern last year (a 1½ hour ride each way). She searched the internet to find the class, and even then did not know there was a NAMI affiliate in her own back yard. "It’s almost like NAMI…was the best kept secret in Carteret County, because nobody knew about it," said Carole. "I found groups in other areas of the state before ever knowing we had a chapter right here at home."

Carole changed that with her dramatic appearance in the local print media. In 1½ years, she has gone from being a Family-to-Family student to a teacher, and is now the new president of NAMI Coastal Division.

It’s people like Carole and Faye who are the future of NAMI North Carolina. Anything we can do to make the teachers' jobs easier helps us all. It is an investment in the future of NAMI.

Although designed for teachers, the handbook was written with the affiliate in mind. If affiliates can make the teachers’ jobs easier, teachers might be able to hold more classes. As affiliates get more involved in connecting with the students, offering them a role in the affiliate, welcoming them to the extended organization, more graduates would join the affiliates. Paul and Marcia Garatt demonstrated this principle with almost 100% membership among nearly 200 graduates of their own classes.

Teachers donate their time to put on the 2½ hour classes once a week for twelve weeks. That does not include their time preparing for the course. Show your gratitude to these wonderful volunteers by giving them a hand. In return, you will have less to do yourself as your affiliate grows

If the Family-to-Family Education Course has not yet expanded to your area, now is the time to take action. Another teacher training is scheduled in Durham the weekend of June 1-3, 2001. This is the best of possible times to take the training course. We have new materials to get you started, and a detailed handbook that will help you duplicate the results of the article featured here, a full class with only three weeks lead time.

To take advantage of this great opportunity, call the NAMI North Carolina state office, 1 (800) 451-9682.

DSH Golden Goose, but Where is Our Egg?

For years, NAMI families have advocated that the mental health system benefit from DSH payments (pronounced "dish", stands for Disproportionate Share Hospital). But what is DSH anyway and why should we care?

Starting in the 1980s, the Federal Health Care Finance Agency (HCFA) supported legislative change in the Medicaid program that would allow the Federal Medicaid program to make additional payments to hospitals that serve a disproportionate number of uninsured persons. In North Carolina the state psychiatric hospitals and UNC hospital at Chapel Hill generate these funds.

Basically, the way it works is the state appropriates funds to the state hospitals and estimates to the federal government, how much it will spend on indigent care in those facilities. The federal government, in turn, pays the state for that care and those funds are put in the state general fund. In a bookkeeping sleight of hand, the state also is reimbursed for indigent care at non-state owned public hospitals.

The program is a bonanza for the state and has grown dramatically.

According to testimony by Alan Gamble, Division of Medical Assistance, to the House/Senate Human Resources Appropriations Committee on March 1, 2001, in 1991-92 DSH payments for the state hospitals were a total of $56 million. The federal share of that was $37 million that came back to Medicaid and was deposited into the state treasury. In September of the current fiscal year, total payments were $175 million and the $109 million generated by the state psychiatric hospitals was deposited into the state treasury.

According to Gamble,

"Since 1991-92, North Carolina has benefited, and this is without using any state appropriation, but using appropriate federal law, the state has benefited $2,489,000,000. Of that amount, $1,190,000,000 has been returned to the general fund as a non-tax revenue deposit to the state treasurer." (Funds returned are those generated by the state psychiatric hospitals.)

And what happens to those funds once they are deposited? They are appropriated by the General Assembly, but not to the mental health system.

For years there have been indications that the federal DSH program was going to be eliminated by 2007. So advocating that mental health funding should be supported by DSH funds was a short-sighted solution. In fact, there has been a decline in the federal funding formula for states over the last several years.

But according to Gamble, based on recent legislation, the program’s future looks bright and funding will now increase each year based on the consumer price index.

So, with psychiatric hospitals crumbling, and a state system woefully under-funded, it is time once again to ask for our fair share of proceeds from the golden goose. And we’re not the only ones thinking that way. The following are excerpted remarks made at the March 1, 2001 appropriations committee meeting by Senator John Kerr III from Goldsboro in response to Mr. Gamble’s comments:

"I should think that these hospitals, and I represent one or two of them, should get a little bit of better treatment sometime and we need a new children’s psychiatric unit at Cherry in eastern North Carolina.

"We do not have a single psychiatric child bed in eastern North Carolina, except what’s at Cherry Hospital and that in a house. They are running at double capacity….everybody ought to appreciate what Morganton and Dix and Cherry are doing.

"I mean, $2 billion dollars they’ve generated off this…You all have toured these facilities. I mean they have leaking roofs and they can have serious problems. I want you all to know about it. I know it is a tough year and the chair says we are going to cut everything, but it is not fair...a whole section of the state doesn’t have one bed [for children], they’ve closed every private psychiatric bed in the east.

"That is something we all ought to think about."

We are thinking about it, Senator Kerr. It’s about time DSH payments were returned to the mental health system to improve hospitals and develop community services.

NAMI North Carolina is continuing discussions with Senator Kerr on how DSH funds are used. You can let Senator Kerr know how much you appreciate his sentiments by contacting him at johnk@ncleg.net or Senator John Kerr III, 526 Legislative Office Building, Raleigh 27601-2808.

The NAMI North Carolina web site at www.naminc.org contains a listing of suggested reading materials that could be of interest to our members.

To make it easier for you to obtain these materials, we have included a direct link to amazon.com. on our web site, In exchange for including that link on our web site, NAMI North Carolina receives a small credit on the total sales of materials on our reading list, as well as on other merchandise carried by amazon.com and at no additional cost to the purchaser.

But remember, to take advantage of this program, buyers must go to the www.naminc.org web site and use the link to amazon.com to purchase merchandise.

Happy reading!

Support NAMI North Carolina every time you shop at a Bi-Lo grocery store!

Enroll in the Bi-Lo Boosters program by calling toll free 1-877-426-6783 or logging onto www.bi-lo.com. You’ll need your Bi-Lo "bonuscard" number and NAMI’s Boosters number 6440. Bonuscards are available, free, at any Bi-Lo store.

Once enrolled, each time you shop and use your "bonuscard," your purchase is credited towards the NAMI North Carolina Boosters program. NAMI North Carolina will get a portion of the funds Bi-Lo puts into the program. The more NAMI North Carolina shoppers spend at Bi-Lo, the larger our portion of the program!

Coalition 2001, a network of 47 statewide agencies serving the needs of individuals with mental illness, developmental disabilities, and substance abuse problems, will hold an all-day Legislative Rally in Raleigh on Wednesday, May 23.

On that day, consumers, families, providers and other individuals concerned about the needs of their fellow North Carolinians with disabilities, will spend the day attending legislative committee meetings, meeting with individual legislators, and visiting the House and Senate galleries while each chamber is in session. A highlight of the day will be a Legislative Rally, complete with music and hot dogs, for legislators and constituents.

Coalition 2001 is holding the May 23 rally to call legislator’s attention to specific funding concerns that affect the ability of area programs to provide adequate services to individuals who need them.

Coalition Chairperson C.L. Cochran estimates that nearly 1 million North Carolinians would benefit from better funded, broader based programs for people with disabilities, including emotionally disturbed children, adults with severe and persistent mental illness, individuals with developmental disabilities, and adolescents and adults who abuse or are addicted to alcohol and drugs. NAMI North Carolina, with good representation at the Legislative rally, can help ensure that legislators are made aware of the need for adequate funding for these groups of individuals.

NAMI North Carolina is one of the founding agencies of Coalition 2001 and all of our members are invited and encouraged to participate. For more information on the rally, contact the state office at 1 (800) 451-9682.

Did you know that….some people have atypical forms of depression. They may experience high degrees of anxiety or phobic symptoms, or experience numerous aches and pains that have repeatedly turned up nothing on medical examinations. Or, they may report feeling angry and irritable nearly all the time.