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In the July/August issue of the NAMI ADVOCATE, we reported on two pieces of legislation being considered by Congress to limit SSI and SSDI benefits for certain categories of individuals ("Bills Limit SSI/SSDI Benefits"). Since then, both bills have been passed and signed into law. This article provides further details about these two legislative initiatives.

Under existing law, Social Security Disability Insurance (SSDI) benefits are suspended for convicted felons confined in jails, prisons, or other penal institutions. Public Law 103-387, the Social Security Domestic Reform Act of 1994, includes provisions expanding suspension of SSDI benefits to three additional categories of people confined in institutions at public expense.

1. Individuals found guilty but mentally ill. (As a practical matter, benefits for individuals in this category were probably already suspended under the existing law.)

2. Individuals found not guilty by reason of insanity.

3. Individuals determined as incompetent to stand trial under allegation of an offense punishable by imprisonment for more than one year.

The legislation is silent on whether Medicare benefits are affected. However, a staff member of the committee in the House of Representatives (which sponsored the bill) states that these benefits will not be affected.

The existing law contained an exception for people "actively and satisfactorily participating in a rehabilitation program" that is likely to lead to employment after release. This exception was omitted from this year's amendments. However, we have been informed that this omission was inadvertent and the exception will be added in the form of technical amendments when the new Congress re-convenes. We will monitor this closely.

NAMI is exploring with other advocacy groups the possibility of a legal challenge to the amendments. Lawsuits in the past that have challenged suspension of benefits for convicted felons have been unsuccessful. However, it is NAMI's position that those cases don't apply because people found not guilty by reason of insanity or not competent to stand trial have never been convicted of crimes.

People found not competent to stand trial have never even been tried on the charges against them. Nevertheless, it may be difficult to mount a legal challenge, particularly because the current climate is so negative towards those who are perceived as having engaged in criminal activity.

Because we want to track the impact that this legislation will have, we encourage anyone directly affected (or their families) to send information to the NAMI Office of Legal Affairs.

The second bill reported on in the July/August NAMI ADVOCATE concerned limitations on SSI and SSDI benefits for individuals whose alcoholism or drug abuse is a contributing factor to their disability. The final version of this legislation clarified that these limitations would apply only to people whose eligibility for benefits were "based materially on alcoholism or drug addiction."

According to the Social Security Administration (SSA), material in this context means that the person would not be found disabled without considering his/her drug addiction or alcoholism.

Based on this description, an individual whose mental illness is sufficiently severe to qualify for these benefits will not be affected. However, individuals whose eligibility for benefits is based on both diagnoses (where the mental illness, in and of itself, would not necessarily establish eligibility) may be affected.

The legislation specifies that affected individuals will be eligible to receive benefits for no more than 36 months. However, any month where no appropriate treatment is available will not count against the 36-month limit. Individuals who do not comply with treatment requirements will be subject to suspension of their benefits for the period of time they do not comply.

Additionally, a series of "graduated sanctions" will be applied, whereby the first occurrence of treatment non-compliance will result in suspension of benefits for an additional two months, the second occurrence for an additional three months, and the third (and subsequent) occurrences for six additional months.

Individuals whose benefits are suspended for twelve consecutive months will be terminated from the benefit roles. The SSA is required to establish at least one referral and monitoring agency in each state to refer people for treatment and to monitor compliance.

The legislation further specifies that payment of benefits to a representative payee will be required if eligibility is based materially on alcoholism or drug addiction. Although professional organizational representative payees such as nonprofit social service agencies are preferred, the legislation states that "a family member or other entity may be selected if more appropriate." Eligibility for Medicare and/or Medicaid will continue for so long as individuals remain disabled, even after termination of their SSI and SSDI benefits.

By Ron Honberg
director, NAMI Legal Affairs


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The following questions are a guide to evaluating important aspects of your community mental health and substance abuse care system.

Does the public mental health service system have a set of articulated values, service principles, or a mission statement that guides the delivery of services?

Who governs the system policy? A citizen board authorized by state law? Are there consumer or family members on the board? Who appoints citizens?

Is accountability easy to identify?

Does the system have a short- and long-term plan?

What portion of the local mental health and substance abuse budget comes from local taxes? Is that similar to other communities in the state? Do some communities contribute more than others? Why? Do rural areas fare poorly in local tax contributions?

Does the system have the following service components: medication, emergency, inpatient, case management, day program, medical and dental, supported housing, work training and employment, recreational/social, and transportation?

How does the public system coordinate with other local agencies such as jails, courts, police, social services, housing, and vocational rehabilitation?

Are services provided solely by local governments, or are some provided through contracts with local providers such as group homes? How are contracts monitored? Are competitive bids required? How does the structure affect the quality of the service?

Because medication is so important to treating persons with mental illnesses, is there adequate access to medication? Is medication given the priority it deserves within the system? Are medication services integrated into other system components?

Are there waiting lists for services, and for which services?

Are priorities assigned to those being served; that is, are the more seriously ill given priority over the less ill?

Are services consumer-driven and client-centered (or are they fragmented)?

Have consumer and family surveys been taken to rate services from the consumers' perspective?

Does the system involve consumers and families in treatment and rehabilitation programs and policy- and- program planning?

What services are available to children and adolescents, and are they coordinated?

If the local inpatient care is increasingly provided by the private sector, is there collaboration between the public systems and the inpatient facilities? Are mental health center psychiatrists on call evenings and weekends for center clients in private hospitals? Is the hospital staff burdened with on-call duties for center clients? For non-center clients?

As state inpatient facilities are phased out, will the money allotted them follow patients into the community? Will the state continue to be the primary source of funds for local care? How illing is the community to accept responsibility for disabled citizens?

Can incentives or disincentives for treatment in inpatient settings be identified in the local system?

Is discharge planning undertaken collaboratively by the system? Are linkages between state and private hospitals and local mental health systems in place and functioning well? Do they avoid homelessness? (Many states require that local authorities may not relinquish their responsibilities to public clients in inpatient settings.)

Does the system have adequate data on service outcomes and unmet needs? Does the system have information about how many need care but are unserved and about why they are unserved? What happens to them?

Does the system take responsibility for all persons with serious mental illness and substance abuse, or just those who try to gain entry?

If the city or county has homeless people, has the service system accepted some responsibility for them, or has little progress been made to get those who are mentally ill into treatment and rehabilitation?

Is there enough local advocacy to ensure a quality community mental health and substance abuse service program?

by Richard T. Greer, Northern Virginia AMI


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The following provides some answers to frequently asked questions about HIV and AIDS. Dr. Cournos if from Columbia University.

What is HIV?

HIV stands for human immunodeficiency virus, the bloodborne virus that causes AIDS. The virus makes people sick by attacking certain white blood cells that normally fight infection in healthy people.

What is AIDS?

AIDS stands for acquired immunodeficiency syndrome. AIDS is the most advanced form of HIV infection, a fatal illness that may develop months, or more commonly, years after HIV infection. AIDS is a disease in which the body's immune system for fighting diseases is weakened and becomes less able to protect a person from infections and cancer. At present, there is no cure for AIDS, and no vaccine to prevent it.

What are the symptoms of HIV infection and AIDS?

In the early stage of infection, a person may have no symptoms at all. This stage may last for many years during which a person looks and feels healthy. Eventually, however, the immune system deteriorates. Usually this deterioration is measured by a decrease in the number of white blood cells known as CD-4 lymphocytes. Medical problems begin to develop, becoming more severe as time goes on. Swollen lymph glands, fatigue, and weight loss may occur. Unusual rashes may appear on the skin or mucous membranes.

AIDS can affect most parts of the body, including the brain and nervous system, the kidneys, and the lungs. The diagnosis of AIDS is based upon the presence of HIV infection and an AIDS-defining illness. These illnesses include certain forms of cancer, such as Kaposi's sarcoma, certain types of infection such as pneumocystis carinii pneumonia or tuberculosis, an organic mental syndrome known as HIV encephalopathy (or AIDS dementia), or a severe reduction of CD-4 lymphocytes.

Why should people with mental illness be particularly concerned about HIV?

Evidence has been growing that HIV is spreading among people with serious mental illness. In New York City, studies of HIV infection rates among psychiatric inpatients show rates between 4 percent and 23 percent. Women are as likely to be infected as men. In New York City, women admitted to psychiatric hospitals have many times the rate of HIV infection as the general population of women delivering babies or having abortions.

How does HIV infection occur?

HIV is only spread in very specific ways:

By having unprotected sexual intercourse--either anal or vaginal--with a partner who is HIV infected. Oral intercourse can sometimes spread infection, too.

By sharing needles or syringes (such as during injection drug use) with someone who has HIV infection.

When an HIV-infected woman passes HIV on to her child during pregnancy, birth, or nursing.

What about blood transfusions?

HIV can be acquired by receiving blood, blood products, or an organ donation from an infected person. But this type of spread is very unlikely in the United States because careful screening since 1985 has largely eliminated the use of HIV-infected human products. You cannot get HIV from donating blood or body tissue.

Can HIV be spread by casual contact?

No. HIV is not spread by hugging or dry kissing someone with HIV, by sharing food or utensils, or by being in the same room with an infected person. HIV is not spread by mosquito bites or any other insect bites, or by toilet seats.

How do people with serious mental illness become infected with HIV?

HIV spreads among people with serious mental illness in the same way as it does in the general population, but there are some particular ways in which mental illness is associated with HIV-related risk behavior.

Studies show that people with serious mental illness have high rates of alcohol and substance use. Use of substances increases risk for HIV in two ways--directly, when people share needles to inject drugs; and indirectly, because drug use is associated with unsafe sexual activity.

Sex with multiple partners, exposure to infected sexual and needle-sharing partners, exchanging sex for money or goods, and not using condoms during sex with either men or women increase the risk for HIV infection among people with serious mental illness.

How can people protect themselves from HIV infection?

You can avoid becoming infected with HIV, or infecting someone else, if you:

Recognize that you are at risk: Anyone can get HIV infection. Be honest with yourself. If you engage in risky behavior, you could get infected.

Don't shoot drugs: Get help if you have this problem. If you can't stop yourself, avoid sharing needles or syringes--even with people you know well. If you must use injection equipment after someone else has used it, clean it first. Rinse all equipment twice with undiluted household bleach, and then rinse twice with water before each use. Never shoot bleach.

Reduce your sexual risk: Limit your number of sexual partners, and learn to ask them questions about their past behavior. People who injected drugs at any time since 1978, those who have had unprotected sex with other people since that time, and those who received blood transfusions between 1978 and 1985 are among the people who may be infected with HIV. Protect yourself by insisting on having safer sex--regardless of your partner's answers. People are not always truthful about their past, so don't put yourself at risk based on what you're told.

Always use latex condoms ("rubbers") during oral, vaginal, and anal intercourse: Although not 100 percent effective, if used properly condoms also help prevent the spread of other sexually transmitted diseases such as gonorrhea, syphilis, and herpes. During vaginal and anal intercourse, use a spermicide that contains nonoxynol-9 with the condom (never alone) to further reduce the chance of getting HIV infection.

Be sure the condoms you use are not damaged and are not too old. You can check the package for the expiration date. Do not use animal skin condoms, since they do not protect against HIV infection. Do not use oil-based lubricants, such as vaseline, because they can damage condoms.

Learn how to talk to your partner about using condoms. Be prepared to deal with negative attitudes such as "Condoms ruin the mood for sex," "People who use condoms don't trust each other," etc. Learn to be assertive with sexual partners. Postpone having sex if your partner refuses to use a condom.

If you are in a treatment program, talk to staff about how to obtain condoms. You have the right to be able to protect yourself in any setting, including a long-term hospital or residential program.

Keep in mind that you can get sexual pleasure in ways that do not expose you to the risk of HIV infection. These include dry kissing, touching, massage, and watching romantic or sexy movies. Abstinence is also a legitimate choice of lifestyle.

Avoid the use of alcohol or illicit drugs during sex. Being drunk or high can affect your judgment and interfere with acting safely.

How is HIV infection diagnosed?

The most common method of diagnosing HIV infection is a simple blood test that checks for the presence of antibodies to HIV. The presence of antibodies means that the body has been exposed to HIV and the immune system is producing chemicals in an attempt to fight the infection.

There are two parts to the HIV blood test: the EIA (Enzyme Immunoassay) and the Western Blot. When both parts of the test are positive, it is pretty certain that HIV infection has occurred.

Who should take the HIV antibody test?

People who have engaged in HIV-related risk behavior should think seriously about being tested. These include men who have had sex with other men; injection drug users; those who received of blood or blood products between 1978 and 1985; male and female sexual partners of any of these people; women who are considering pregnancy who have engaged in risk behavior or whose sexual partners are at-risk.

Those being treated for STDs; those being evaluated for medical, psychiatric, or neurological illness that may be HIV-related; heterosexual men and women who have had multiple partners whose HIV status is unknown; previously tested HIV-negative individuals who continue to practice risk behavior; immigrants from countries where there is a high rate of HIV infection.

Before taking the test, be sure to find out who will know your test results. Many states have laws that protect the confidentiality of people who have the HIV antibody test. Find out what the laws are in your state. And be sure that you will receive pre- and post-test counseling.

What are the advantages of learning if you are HIV infected?

Everybody hopes their HIV antibody test will be negative. For people with a positive antibody test, certain helpful steps can be taken, including:

You can seek good medical attention.

You can let your sexual or needle-sharing partners know of your infection and encourage them to get tested.

You can be extra careful about not passing the infection on to others.

You can improve your nutrition and take other steps to maintain your general health.

You can seek advice if you are considering having a baby, and, if you are pregnant, take medication that reduces the chance that your baby will be infected.

You may be eligible for special programs or benefits.

What are the disadvantages?

There are some problems that may result from learning that you are HIV positive:

You will probably suffer emotional distress if the result is positive.

You could experience discrimination if someone learns of your test result who is afraid of HIV or doesn't realize that people with HIV infection are protected by federal anti-discrimination laws.

What steps should you take if you are HIV positive?

Get advice from a counselor or a mental health professional whom you trust. Infection with HIV is too complicated to manage by yourself.

Be optimistic. Many people stay well for a long time, or have episodes of illness that respond well to treatment. There are many helpful medications to slow the course of illness or prevent infections, such as AZT, DDI, and pentamidine, and researchers are constantly working on developing new treatments.

Locate a good doctor, or a hospital or clinic where staff are knowledgeable about HIV. This will improve your chances of receiving careful monitoring and proper medical care.

Only inform people about your HIV status if they need to know--your sexual partner, for example. Be careful about telling strangers, co-workers, landlords, or other people who could discriminate against you. If you are discriminated against, learn the city, state, and federal agencies that you can appeal to.

Follow all the precautions suggested above to insure that you do not spread the infection to others.

Take good care of yourself, eat well, and exercise.

by Francine Cournos, M.D.

For further information about AIDS or HIV, call:

  • National Alliance for the Mentally Ill, 703-524-7600
  • Public Health Service Hotline, 800-342-AIDS
  • National AIDS Information Clearinghouse, 800-458-5231
  • American Psychiatric Association, AIDS Office, 202-682-6143
  • National Association of People with AIDS, 202-898-0414


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We have learned so much, we have come so far, and so much is at risk. Our movement's parents and clients have become our leaders. Our effective capability is leaping forward. Community supports, PACT model outreach teams, employment, self-help, and low-side-effect medications show terrific outcomes for a new generation of positive engagement and personal success.

As one state system, New Hampshire has neared the point at which we can say our adult services are of high quality, adequate supply, and strongly valued by clients and community. Our children's services are still growing, and our elder supports have begun to show their potential. While we have miles to go, this is a very positive place for all of our partners in the NH system.

We have shown we can work together--locally planning and providing; at state levels, advocating, leading, and supporting; and at national levels, working as never before in successful coalitions. We have gained recognition of the necessity of mental health parity. In NH our clients work. Thirty percent of the citizens with severe mental illnesses are competitively employed. In our most successful regions we are reaching sixty percent employed.

Our clients are becoming drug- and alcohol-free. For our clients who had been most severely ill and dully diagnosed, this has been an intensive four-year recovery process. Personal and social gains of partners and friends, creative expression, and the experience of enjoying everyday life are within reach of all but a few clients. (About 40 of our clients remain seriously ill and involuntarily committed.) We have shown we can change the experience of being mentally ill from outcast to participant.

Still, intense poverty and stigma is ubiquitous. Income-assistance rules are a major disincentive to working sufficient hours to escape very low income status. Ignorance and fear of disabilities remains the basic cultural myth. And our children remain at very high risk of extreme stress and misunderstanding when they experience their first episodes of significant emotional disturbance.

Too few magic bullets will appear in our next decade. Advances in services research and in clinical care will continue, but in the face of increasing poverty, community disintegration, and toxic street drugs. At a time when resources are becoming even more scarce, persons with mental illness are at extreme risk. Just when we know so much more, it will become so much harder to actually make that support available.

A new deployment of our resources must respond to this changing reality. Competitive employment, with needed supports, must become a foundation stone for therapeutic outcomes as well as for survival. Living supports emphasizing dual diagnosis-oriented group and individual housing must be a stabilizing force. Partial hospitalization should be scaled back in favor of recovery supports, such as client-run drop-in centers, self-help treatment centers, education and arts centers.

Early, rapid stabilization of symptoms and outreach to uninvolved consumers must be the rule. In the areas of our greatest social disintegration, an aggressive, shelter and transitional support with strong substance abuse orientation within the mental health system must be the front lines of our effort.

Today our country finds itself at a watershed in its philosophy of government. The new national majority is redrawing the road map that for good and for bad was directing our movements in providing care. In New Hampshire we have experienced a strong Republican majority for decades.

Our experience has been that a commitment to persons with serious mental illness is not only politically possible, but it can be the basis for a progressive policy of independence, with support, and a strong accountability for assuring responsibility for those most in need. Many paths can be taken to effective service-delivery systems. We all must use this time as an opportunity to restate our vision of where we must go. This must be our first agenda.

Certain formulas will prove true in meeting needs in this time of scarcity. The coalition of strong families, clients, providers, advocates, and administrative leaders is the essential nucleus for the formation of our vision and our strategy. Local political support--established through each local NAMI chapter, each mental health center, each drop-in center--is the foundation for all policy support for the public mental health system and the people it serves. This local political organizing must be our second agenda.

To achieve this local organizing catalyst, we must actually design our service systems not only along efficiency lines such as managed care principles, but more importantly on the principles of community ownership of support and community integration. We must be careful to not confuse our management tools such as efficient, "managed care" with our values and strategic vision. Family and client organizing must be supported in local "caring and sharing" and also in informed political action.

We must respond to the strong consumer demand for self-help. Consumer organizing and consumer ownership of service provision, especially including new "professional" roles, is vital. Consumer governance of services such as "cooperative businesses" and board roles is essential. We must work to be supportive of larger coalitions of such groups as anti-poverty advocates and community policing groups.

As we face this ongoing challenge of values and vision in a rapidly changing, increasingly shrill competition for resources, we must look to each other for a welcomed coalition of support and sustenance amidst this hostile and battering world.

by Donald L. Shumway

Note: Mr. Shumway is the director of the state of New Hampshire Department of Health and Human Services, Division of Mental Health and Developmental Services