Protection and Advocacy System 1720 Louisiana Boulevard. N.E., Suite 204 Albuquerque, N.M. 87110

The HIV/AIDS Project of the Protection and Advocacy System of New Mexico is pleased to make available the complete computer text file of the brochure "HIV and Your Legal Rights".

This booklet was designed for national distribution and is based primarily on the provisions of federal law, with suggestions to check on state or local laws which may provide additional rights and protections. The booklet covers the inclusion of HIV/AIDS as a disability for the purposes of disability discrimination law; confidentiality; HIV testing and consent; insurance benefits; discrimination in housing, employment, medical care and public accommodations; end-of-life planning; and disability and other public benefits.

The HIV/AIDS Project at the P&A of New Mexico is funded under the SPNS program of the Ryan White CARE Act to encourage the development and expansion of HIV/AIDS advocacy services through the P&A System in each state. The Project also provides individual advocacy, training, and systemic advocacy in New Mexico. You are welcome to print and distribute the booklet, and/or amend it to include information specific to your state or community, as long as you give credit for the original work to the HIV/AIDS project at the P&A of New Mexico.

The booklet is enclosed in this memo as a text-only ascii file that can be downloaded and opened from any word processing application -- this is the best method to use if you wish to print a copy of the entire booklet. The booklet is also posted in this folder as separate text memos.

Please take a minute to e-mail the Project if you download the brochure, so we may track and report on this dissemination activity.

To notify us of downloading, or to request an alternative format, or to help locate the Protection and Advocacy agency in your state, you can reach us at HN5413 or:

HIV/AIDS Advocacy Project Protection and Advocacy System of New Mexico 1720 Louisiana NE, Suite 204 Albuquerque, NM 87110 Phone: (505) 256-3100 FAX: (505) 256-3184 INTERNET: HN5413@Handsnet.org

Sue Boettger Protection and Advocacy 505-256-3100

HIV And Your Legal Rights is written for residents of all fifty states. Accordingly, the information contained in this booklet is general nature and is not specific to any one particular state. In addition, the law frequently changes. If you have a legal problem, you should obtain the services of a lawyer. This booklet is for information only. It is not legal advice nor a substitute for a lawyer. Your local AIDS service organization may be able to help you find a lawyer.

HIV and Your Legal Rights is a publication of Protection and Advocacy System and is based on HIV And Your Legal Rights In New Mexico, second edition, copyright 1992. HIV And Your Legal Rights is copyrighted by the Protection and Advocacy System, Inc., of New Mexico. You are encouraged to distribute this booklet and you are given permission to copy and distribute this booklet in any form.

This booklet is free and may not be sold.

This booklet is available to print-disabled persons on computer disk and audio cassette tape.

Some portions of this book were reprinted from HIV and Discrimination (ACT/UP, Boston, MA, and the City of Boston Commission for Persons with Disabilities, 1993) and AIDS and Your Legal Rights (National Gay Rights Advocates, San Francisco, CA, 1988).

Table Of Contents

Chapter

1. Introduction . . . . . . . . . . . . . . . . . .3

2. Have People Discriminated Against You? . . . . .4 Common forms of discrimination and ways to document

3. Confidentiality. . . . . . . . . . . . . . . . .8 Persons with HIV/AIDS have a right to confidentiality

4. Definition Of Disability . . . . . . . . . . . .9 Persons with HIV/AIDS are considered disabled under the law and are protected from discrimination, as are persons with other disabilities

5. Public Accommodations. . . . . . . . . . . . . 10 Your right to use public accommodations is protected by law

6. Employment . . . . . . . . . . . . . . . . . . 11 Employers are prohibited from discriminating against persons with HIV/AIDS, persons perceived as having HIV/AIDS, and those who associate with persons with HIV/AIDS.

7. Housing. . . . . . . . . . . . . . . . . . . . 14 Discrimination is prohibited against persons with HIV/AIDS in the sale and rental of housing

8. Insurance. . . . . . . . . . . . . . . . . . . 15 Persons with HIV/AIDS have health and life insurance requirements

9. HIV Testing. . . . . . . . . . . . . . . . . . 20 You must decide whether, when, and how to be tested. Persons with HIV/AIDS have a legal right to receive appropriate medical treatment

10. Health Care. . . . . . . . . . . . . . . . . . 22

11. End-Of-Life Planning . . . . . . . . . . . . . 23 You may need to take extra steps to determine who can make medical and financial decisions on your behalf, or who can inherit your estate

12. Disability And Other Benefits. . . . . . . . . 28 Persons with HIV/AIDS may be entitled to disability benefits as well as medical and social services

13. Bibliography . . . . . . . . . . . . . . . . . 31

14. Resource List. . . . . . . . . . . . . . . . . 33

1. INTRODUCTION

If you think you have HIV; if you have tested positive for HIV; if you have been diagnosed with AIDS, or if you are perceived as having HIV or AIDS, your legal rights can be affected in many important ways. HIV And Your Legal Rights will help to explain how your legal rights can be affected.

Discrimination against people who have HIV infection (or who are thought to have HIV infection) occurs. If you believe you have been discriminated against (or are about to be discriminated against) you need to decide:

* What you can do to protect yourself * How you can organize a plan of action * What laws protect you

How can you spot discrimination? You may say to yourself, "something isn't right here." You may feel as if people are treating you unfairly or differently. You may be afraid to complain about this treatment, or you may be remembering the way other people have been treated after they had made a complaint.

Trust your feelings! If you feel that something isn't right about the way you are being treated, that's reason enough to assume discrimination. You need to start looking at ways to stop it.

2. Have People Discriminated Against You?

Have Any of the Following Things Happened to You? (Check any items which may describe your problem)

_____ I was fired.

_____ I'm being harassed.

_____ I was denied housing.

_____ I was denied services.

_____ I'm afraid to ask for time off.

_____ I have been separated from everyone else.

_____ When I get an accommodation, I am made to feel bad.

_____ I am being denied a necessary change in my job duties.

_____ I am being forced to take a test for HIV, and I don't want to.

_____ I need a change in my workload but I'm afraid to ask for it.

_____ Someone at work thinks I have AIDS, and now people are harassing me.

_____ I don't trust my boss at work to keep my medical information confidential.

_____ I told my company doctor that I tested positive, and now other people know.

_____ The "internal complaint process" is more stressful than my original problem.

_____ I've used up my sick time and my boss wants me to quit.

Common Forms of Discrimination

* Denying a person with AIDS the opportunity to participate;

* Providing different or separate benefits or services;

* Continual harassment;

* Pre-employment inquiries about your health status or disability;

* Questions as to the nature of a disability in the sale or rental of housing;

* Questions about your sexual behavior or sexual orientation;

* Denial of housing based on a disability;

* Discrimination based on your associating with a person with AIDS;

* Failure to make reasonable changes for your benefit;

* Violating the confidentiality of a person with AIDS or HIV infection;

* Failure to stop discrimination;

* Retaliation if you complain.

Keeping Records

Take the time to write down the things that have been said or done to you. Follow up meetings and phone calls by sending a memo or a letter to everyone that reminds them of what was said at the meeting. Keep a record of everything that has been said to you, by whom, and the date, as well as everything that has been sent to you.

Answering the following questions may help you to organize your thoughts so you can make a convincing presentation to others:

What is the problem? ___________________________________________________ ___________________________________________________ ___________________________________________________

Who or what is the cause of the problem? ___________________________________________________ ___________________________________________________ ___________________________________________________

Is the discrimination intentional? What do you think is the reason for the discrimination? (Is it fear, hatred, or dislike? Or is it ignorance - do they feel they are treating you fairly, but you feel they are not?) ___________________________________________________ ___________________________________________________ ___________________________________________________

If you gave them information about the law, do you think it would help change their treatment of you? Yes _____ No _____

Who is the person higher up who decides what will happen to you? (Write his/her name, title, address, and phone.)

Name ________________________________________________ Title ________________________________________________ Address _______________________________________________ _______________________________________________________ Phone (_____) _____-______________

Take action!! If you feel something is wrong, work to make it right. If you aren't satisfied with the result, call your local AIDS service, advocacy organization or human rights agency. They may be able to take the case or find you an attorney who can.

Do:

Build trust through negotiation

Plan goals

Try to anticipate the other person's arguments

Develop a "main position," a "backup position," and a bottom line"

Be assertive

Gather all the information you can

Make frequent eye contact

Negotiate only with people who have power to change the situation

Don't:

Compromise, except as a last resort

Draw conclusions too early

Oversell or overstate you position

Attack the other person's principles or beliefs

Intimidate

Reveal your knowledge or your `bottom line' too soon

Apologize, blame, or be defensive

Dress to draw attention away from your goals

3. CONFIDENTIALITY

Are My Medical Records Confidential?

Yes. Doctor-patient communications are regarded as strictly confidential. Although, information in your medical records could be obtained by insurance companies, medical workers may not reveal your HIV status without your permission. Medical records and information may, however, be subpoenaed when compelling reasons are proven to the court.

Insurance companies can ask to see your medical records if you are applying for benefits or they are paying for benefits. They may also obtain information about your HIV status from other medical records. For instance, although you have the right to refuse, some hospitals may request that you take an HIV antibody test before surgery. The cost of this test, along with the results, may be reported to the insurance company. You could then be denied insurance based on having a "pre-existing condition."

Confidentiality is also protected by HIV test acts in some states. These HIV test acts limit the circumstances under which anyone who administers an HIV test can disclose the identity of the person tested or the test results.

Employers with company doctors have access to the medical records which they have compiled about you. They can examine these records if they have a valid business reason. However, the ADA prohibits employers from using the information to discriminate against you.

Some employers require filing of insurance claims through a personnel office, which may lead to an unauthorized "leak" of information contained in the application for insurance benefits. Employers may additionally request general information on employee utilization of benefits, including insurance. Again, they cannot use this information to discriminate against you.

4. DEFINITION OF DISABILITY

Am I Considered Disabled If I Am HIV Positive?

Yes. Persons at any stage of HIV disease are considered disabled under the Americans with Disabilities Act (ADA), the 1988 Amendment to the Fair Housing Act (FHA); the Rehabilitation Act of 1973; the Air Carriers Access Act, and state anti-discrimination statutes. These laws protect persons with disabilities from discrimination. The ADA defines a person with a disability as someone with a physical or mental impairment which "substantially limits" the performance of a "major life activity." Major life activities include personal care; performing manual tasks; walking; seeing; hearing; speaking; breathing; learning; and working. However, persons who are HIV positive are entitled to the same legal protections as any person with any disability. In addition, the ADA also protects persons with a record of a disability, persons who associate with a person who has a disability, and persons who are perceived as having a disability. For instance, the ADA could protect someone mistakenly believed to be HIV positive because they have friends or relatives who are HIV positive.

In contrast, Social Security Administration definition of disability is based on an individual's ability to work. A person considered disabled by the Social Security Administration is eligible to receive disability benefits.

5. PUBLIC ACCOMMODATIONS

Can I Be Denied Access To Places of Public Accommodation?

No. A Public accommodation is a place of business open to the public and includes restaurants, hotels, and retail stores. The Americans with Disabilities Act prohibits "public accommodations" from discriminating against persons with disabilities including HIV/AIDS. "Auxiliary aids and services" must be provided to individuals with disabilities, unless an undue burden would result. For example, if you are unable to do your grocery shopping because of an HIV-related condition, you can request that the grocery store provide you with assistance to do your shopping. However, the ADA does not require the store to deliver the groceries to your home.

Can a Child With HIV be Segregated From Classmates?

No. People with HIV/AIDS must be provided equal access to educational opportunities, as long as they meet the appropriate eligibility and academic standards. Title II of the ADA prohibits state and local governments, and the schools they administer, from discriminating against persons with HIV/AIDS. Accordingly, a child cannot be segregated from other classmates because he/she has HIV/AIDS unless justified by risk of exposure to other children. In addition, specific court rulings state that a child may not be segregated for biting, as the chance of transmission is very low. Similarly, HIV infection alone is not a sufficient reason for special education placement.

6. EMPLOYMENT

Can I be Fired Or Not Hired Because I Have HIV/AIDS?

No, not solely based on HIV/AIDS. You can be fired if you have violated a term or condition of your employment, and you can be refused employment if you are not qualified for the job. Discrimination by most employers against persons with disabilities is prohibited under state and federal laws including the ADA, Section 504 of the Rehabilitation Act, and the laws of your state. You also cannot be demoted or transferred because you have HIV/AIDS unless your employer can justify the transfer for business reasons.

The Americans with Disabilities Act prohibits discrimination by employers of 25 or more employees. Beginning July 26, 1994, the protection provided by the ADA will be extended to cover employers of 15 or more employees. The laws of your state could cover employers of fewer employees. Section 504 of the Rehabilitation Act applies to federal employers or to institutions which receive federal funding such as state and city governments, universities, hospitals, jails and prisons, public schools and private businesses which receive federal contracts or funding. These laws prohibit employers from firing "otherwise qualified" employees because of their disability.

The ADA also requires employers to make "reasonable accommodations" for their disabled workers. "Reasonable accommodations" mean adapting the workplace to the employee's disability so that he/she can continue working. The person with the disability must identify him or herself as having a disability and must request the accommodation. Since some state and city laws actually provide greater protection than federal laws, you should consult with an attorney or check with your state or city human rights office to determine which law provides you with greater protection.

"Otherwise qualified" means that the employee or prospective employee is presently able to perform the "essential functions" of the job or able to do so after "reasonable accommodations" are made by the employer. An accommodation is considered "unreasonable" if it imposes "undue financial and administrative burdens" or requires a "fundamental alteration" in the nature of the program. Reasonable accommodations could also include permitting the employee to work a flex shift, permitting the employee to take occasional breaks to administer medication, and allowing the employee to alter certain job duties which he or she is no longer able to perform.

Can I be Fired From a Teaching Position If I have HIV/AIDS?

No. The courts have held that teachers cannot be fired or reassigned because they have HIV infection or AIDS.

Can I be Fired For Using Health or Disability Benefits?

No, not if the employer maintains a qualified plan under the Employee Retirement Income Security Act of 1974 (ERISA). Any private employer who establishes a retirement or welfare benefit plan must comply with the provisions in ERISA. ERISA does not apply to government plans, nor does it compel an employer to establish a plan. Plan participants and beneficiaries cannot be discharged, fined, suspended, expelled, disciplined, or discriminated against for exercising any right or prospective rights under a plan. ERISA prohibits forced retirement of an employee with AIDS or HIV infection; denial of short or long term disability payments; denial of disability pension, or discontinuation of health insurance. Treatment of employees with AIDS or who are HIV positive should be consistent with treatment of other employee medical conditions. The Americans with Disabilities Act also prohibits discrimination in the terms and conditions of employment, including health and disability insurance benefits.

Can I be Reassigned Because I have HIV/AIDS?

No, not if you are otherwise capable of doing the job. However, employers have broad discretion regarding assignment of employees, and can reassign a person for a number of legitimate business reasons.

7. HOUSING

Can I be Evicted or Denied Housing Because I Have HIV/AIDS?

No. If you are obeying the terms of your lease, you can't be evicted or denied housing because you have tested HIV positive or have AIDS. The Fair Housing Act Amendments of 1988 bring people with disabilities under the protection of federal fair housing laws. However, the law does not apply to landlords who rent fewer than four units. The Act's fundamental purpose is to prohibit practices that "restrict the choices" of people with disabilities to live where they wish or that "discourage or obstruct those choices in a community, neighborhood, or development." The Act makes it unlawful to discriminate "in the sale or rental, or otherwise make unavailable or deny, a dwelling to any buyer or renter because the person seeking housing has a handicap, is providing housing for other people with handicaps or is associated with people with handicaps."

The anti-discrimination laws of your state or city probably also prohibit discrimination in the rental and sale of housing. Since some state and city laws may provide greater protection than the Fair Housing Act, you should consult with an attorney or check with your state or city human rights office to determine which law is more appropriate.

8. INSURANCE

Should I Worry About Health Insurance if there is a Future Healthcare Reform Program?

Yes, because until healthcare reform is actually enacted, you must protect your rights under the present system. After healthcare reform is enacted, you will need to carefully reevaluate your insurance needs. For example, healthcare reform may enable some persons with a pre-existing HIV infection to obtain health insurance.

Can Insurance Providers Require the HIV Test?

Yes.

Can I be Denied Insurance Because I Have HIV?

Yes. Insurance companies can ask if you have HIV or AIDS and deny your application on that basis. Unless your policy covers "pre-existing conditions," coverage for any pre-existing condition may be denied. A "pre-existing condition" means any sickness or injury for which you received medical diagnosis and/or treatment during a detained period prior to coverage date.

A "pre-existing condition" will not be covered under most plans for a specified number of months (usually 6-12, perhaps longer). However, conditions unrelated to the preexisting condition will be covered.

Can My Insurer Refuse to Pay AIDS or HIV-related Claims?

Unless HIV/AIDS is specifically excluded as a pre-existing condition by your insurance company or HMO, the company probably cannot refuse to pay claims. If your insurer covers AIDS, it can't refuse to pay your AIDS-related claims unless you were dishonest on your application. Insurers may also refuse to pay for experimental treatments. Insurers may not drag out payments, single out AIDS-related claims, or otherwise act unreasonably. Insurance claims can be denied because you didn't follow guidelines on pre-authorizations, reviews, exclusions, and limitations.

How Can I Protect My Rights When it Comes to Insurance?

Be careful about your medical records. If possible, make a conscious decision as to when HIV information will become a part of your record. Information is often casually or accidentally placed in records. Insurance companies often ask to see their applicants' medical records. Speak frankly with your doctor about your desire to keep potentially prejudicial information out of your records. Some physicians have included comments such as "gay male," "promiscuous" or "fears AIDS" in their patients' files which may, in today's climate, result in a denial of insurance. Comprehensive medical records are, however, an important tool in your treatment. Therefore, it is important not to withhold information but rather to decide at what point to establish your record.

Don't withhold important information on your application. Chances are good that your insurer will find out the truth and cancel your policy when you need it most. However, you should answer questions exactly as they are asked and you should not volunteer information. Get group insurance, if possible. Most group plans, especially with large employers, automatically accept new employees, although they may exclude pre-existing medical conditions from coverage. You also may be able to obtain group insurance through a union or a professional, religious or civic organization.

After you leave your job, consider continuing your group health coverage. You will probably not be able to buy a new individual plan and new group plans are likely to exclude pre-existing conditions such as HIV disease. There are two primary ways you can continue your group coverage: first, some states require group insurers to let covered employees extend their group coverage by paying both the employee's and employer's share of the premium, if you apply for the coverage within the designated time period after leaving your job. The second way is under the federal Comprehensive Omnibus Budget Reconciliation Act (COBRA) legislation. Employers with more than 20 employees must offer to continue health insurance coverage to employees who leave their jobs. Coverage is available only to those who are not qualified under another group plan. The ex-employee must pay both his or her and the employer's share of the premium. Employee coverage is available for 18 months, and may be extended to 29 months in some cases (disability, pregnancy, etc). Families of deceased employees may qualify for thirty-six months of continuous coverage. Employees must be notified of their right to convert, and they have 60 days to exercise their rights under the COBRA legislation.

But don't just jump at any plan. Read all policy manuals carefully, and ask your agent, employer or insurer (anonymously if necessary) whether any health plan: 1) covers HIV-related claims (check the "exclusion clause"); 2) has an unreasonably large deductible; 3) has an unreasonably low cap on the amount of coverage; 4) allows you to waive premium payments if you become disabled; and 5) allows you to convert from group to individual coverage.

Fight back if you are turned down. Consider hiring a lawyer or filing a complaint with the insurance commissioner of your state.

If you are having trouble with unreasonable delays in benefits or you feel the insurance company is not living up to its contract, you should contact the person who issued you the policy. If that fails, write the insurance company and ask for a review. You can also file a formal complaint with the Insurance Commissioner of your State.

Can I Cash In My Life Insurance?

Persons with HIV or AIDS may be able to access life insurance benefits prior to death. Your insurance company may have an "accelerated benefit" program which could permit an early benefit payment. Accelerated benefits may be available if you have a life expectancy of one year or less. The accelerated benefit payment is usually for the entire value of the policy minus any interest which would have been earned had the policy not paid off until the death of the insured person.

What If My Company Does Not Offer Accelerated Benefits?

Persons whose insurance companies do not permit accelerated benefits might be able to take advantage of "viatication." Viatication is a process whereby a terminally ill person can sell his or her life insurance policy so that the money from the sale can be enjoyed while the person is still living. Persons with life expectancies of more than one year, but generally less than two years, may be able to use viatication. Persons with an AIDS diagnosis may be able to take advantage of viatication regardless of life expectancy. A company engaged in viatication of insurance benefits will pay a sum of money in exchange for being designated as the beneficiary of the life insurance policy. This sum, usually fifty to eighty percent of the face value of the insurance policy, is calculated based on an estimation of the life expectancy of the policy holder. The company offering viatication risks the possibility that the person will survive longer than expected. Viatication is, therefore, much less generous than accelerated benefits.

9. HIV TESTING

What Is The Difference Between Anonymous And Confidential Testing?

Anonymous testing occurs when you are given an identification number which no one knows but you. Confidential testing occurs when you are identified by name but are assured that the test results will be kept secret. Anonymous testing is available in most states. Ask your Public Health Office if the testing they offer is anonymous. The testing is free and is usually conducted at Public Health offices. Anonymous testing is preferable to taking the test at a doctor's office or hospital where, although "confidential," it will become part of your medical record which could then be used by insurance companies to deny you health insurance. Counseling is often required by law before and after the test.

Can I be Forced To Take the HIV Test?

The laws vary greatly among states. Testing is generally permitted without consent under circumstances such as the donation of blood, semen, organs, or for epidemiological studies.

Some other states also permit testing without consent in cases of medical emergencies. However, in general, you can refuse to be tested under most circumstances.

Can My Employer Ask Me To Take An HIV Test?

No. The Americans with Disabilities Act (ADA) prohibits all pre-employment physical examinations except for a drug test. However, the ADA permits a physical exam to be requested after an offer of employment. No exam should include an HIV test as a condition of employment unless the employer can show that the test is based on a "bona fide occupational qualification," or that the employee could somehow transmit HIV on the job. Because of the improbability that HIV could be transmitted in any employment setting, it is highly unlikely that an HIV test could ever be justified. The employer must prove that the HIV test is necessary to determine whether the person can perform the job or whether the person will present a significant risk of transmitting the virus during normal work activities. The alleged risk of transmission cannot be speculative or remote. However, even if a test were justified, the employer must also prove that there is no reasonable accommodation, such as universal precautions, which would eliminate the need for the test.

However, an HIV test is necessary to enlist in the military. An annual HIV test is required of all persons serving in the military, and those testing positive can be re-assigned or discharged, depending on their health.

10. HEALTH CARE

Can a Doctor or Hospital Refuse to Treat Me Because I Have HIV?

No. Doctor's offices and hospitals are considered to be "public accommodations" and you cannot be denied the services of a public accommodation based on your HIV status. If Medicaid or other federal funds are accepted, refusal is prohibited under Section 504 of the Rehabilitation Act. The Americans with Disabilities Act also prohibits refusal of treatment, as a doctor's or dentist's office is a place of business. If you have alternatives, however, you may want to carefully consider whether you want to be treated by someone who has tried to refuse you.

If you need emergency care, you have a right to treatment by any public or private hospital which has an emergency room. If you have an emergency medical condition, the Emergency Medical Treatment and Active Labor Act (EMTALA) requires hospital emergency facilities to provide you with the appropriate medical screening and treatment. Ambulances are considered "public accommodations" and may not refuse to pick you up because you have HIV/AIDS.

11. END-OF-LIFE PLANNING

What If I am Too Ill To Make Decisions for Myself?

You can create an "advanced directive" such as a living will or durable power of attorney to assure that your wishes are carried out if you become unable to express them. These documents are usually free from your AIDS service organization, local senior citizen's center, right-to-die or right-to-life office, or your nearest law school.

A Living Will allows you to state what type of medical treatment you want should you be certified as being incapable of making that decision for yourself. For example, a Living Will allows you to state whether or not you want to withhold or withdraw extraordinary life- support treatment such as artificial nutrition, hydration, ventilation, and resuscitation.

A Power of Attorney allows you to authorize someone to act on your behalf to make certain kinds of decisions, including medical and financial decisions. It can be specified that it only becomes effective if you become incapacitated. This power of attorney is called a "durable power of attorney." The advantage of a durable power of attorney is that the power of attorney remains effective even though you may be incapacitated. You may have both a Living Will and a Power of Attorney. These documents should be placed in a safe location and copies should be given to the person(s) named in your Will and/or Power of Attorney. You will need to check whether these two documents need to be notarized in your state.

You may also be able to use a "do not resuscitate" (DNR) order. A DNR order could be used along with a living will or durable power of attorney. A DNR order in your hospital chart will tell your physicians and nurses that you do not want to be resuscitated should your heart or breathing stop. You may also carry a DNR card which can direct paramedics or emergency room personnel to not resuscitate you. DNR orders are currently recognized in Arizona, Colorado, Florida, Georgia, Illinois, Maryland, Montana, New Mexico, New York, Pennsylvania, Rhode Island, Tennessee, Utah, Virginia, Washington, West Virginia, and Wyoming. You should check to see if your state has recently joined those states that recognize DNR orders, since this is an increasingly popular measure.

It is important that you discuss your health care wishes with those persons in positions to influence your health care, including lovers, spouses, friends, family, and physicians.

Should I Worry About Funeral Arrangements?

As in the case of health care plans, funeral wishes should be discussed with those persons likely to be in positions to influence what will take place. You may be able to "prearrange" your funeral. By prearranging, you can select a cemetery, casket, and/or crematorium, and make all the other arrangements.

A "pre-need plan" can also be obtained from most mortuaries. A pre-need plan is similar to prearrangement except that, you actually go ahead and purchase the plan. With prearrangement, you only select the arrangements you want and leave the responsibility of paying to the executor of your estate. By preparing ahead, you can help assure that your wishes are carried out and reduce the cost to your estate.

Do I Need a Will?

A will is an opportunity for empowerment since it allows you to make your own decisions. If you don't have a will, everything you own may go to your relatives or to the state if you don't have any relatives. If that is not what you want, you should probably use a will to control what happens to your belongings when you die. If you have minor children and you want to decide who will care for them, you definitely need a will. Some assets can pass to your heirs outside of your will. These assets can include bank accounts, vehicles, property, life insurance proceeds, assets held in trust, Individual Retirement Accounts, and other retirement benefits. It is very important that you understand how your assets and property are held. For example, property held with another person as "tenants in common" does not pass outside of a will. Instead, you must use a will in order to control how property held in this manner is distributed. Property held in "joint tenancy with rights of survivorship" passes directly to the joint tenant. You may, however, still need a will since it is possible that the joint tenant could die before you. In this case, the property would be entirely your own and you would need a will to determine who would get the property. Placing your property in joint tenancy with rights of survivorship may not always be desirable since the assets may be subject to creditors. For example, if the person with whom you have property held in this manner has an auto accident and is sued, then all of the property held as joint tenants with rights of survivorship may be seized by the court and used to pay a judgment.

Can I write My Own Will?

It is not recommended that you try to write your own will. While you may use a "will kit" to write your will, will kit forms are general and may not necessarily fit your specific circumstances.

In order to be legally effective, a will must be carefully drafted and executed. An improperly drafted will could result in consequences very different from what you had originally intended. A will must be signed and witnessed in a very specific way. A will must be witnessed by at least two and often three persons. The witnesses should not be named in your will nor be the spouse of a person named in your will. The witnesses should be young and healthy enough to be likely to survive you. It is often a good idea to have additional witnesses ensure the required number of witnesses are alive and available to testify should your will be contested. The witnesses must actually see you sign the will in their presence and must also know that it is your will that you are signing.

Can My will Be Challenged?

A will may be challenged based on improper drafting, improper execution, undue influence, or lack of testamentary capacity. The "testator" (the person making the will) must have "testamentary capacity," which means that he or she understands the nature of his/her property and must know who would normally inherit the property if there were no will.

It is probably even more critical to have a will and to use an attorney if you are unmarried and living with a partner. For example, without a will, your property passes to your relatives and a partner could be shut out completely. Only the "legal spouse" or other relatives inherit property when there is no will. Additionally, since relatives often seek to challenge a will which leaves property to a partner, it is important that the will be written to withstand potential challenges. For example, a lawyer may use a "Self- Proving Clause" to make the will more difficult to be challenged. Your lawyer could also help you to take extra steps such as video tapes and written communications to prove that you had testamentary capacity, making it harder to challenge the will. Persons with HIV may be more likely to have their will challenged on this basis since some persons can suffer diminished mental capacity due to the virus. An attorney can also include in the will a "no contest clause," which will give a small inheritance to a person with the provision that the person loses the inheritance if he or she challenges the will. Finally, you could execute similar multiple wills, each of which would have to be challenged. The difficulty and expense of challenging the multiple wills could discourage any potential challenger.

12. DISABILITY AND OTHER BENEFITS

Social Security Disability Insurance (SSDI) provides income to people who have contributed to the Social Security system for the required period of time. However, SSDI benefits are not paid for the first five months after the declared onset date of your disability. Medicare is available to those on SSDI after twenty-four months. In order to be eligible for SSDI, you must file a claim for benefits within a prescribed period of time or you will lose your right to receive SSDI benefits. You may apply for SSI benefits to support you during the five-month waiting period.

Supplemental Security Income (SSI) provides a small monthly income ($446 as of 1994) for disabled persons with very low income and limited assets who do not have the work record to qualify for SSDI. Some states provide a supplement to the base SSI amount; California SSI recipients, for example, receive $630.

SSI recipients also qualify for Medicaid benefits. Unlike SSDI benefits and the SSDI Medicare program , SSI benefits and Medicaid coverage begin from the date that you apply for disability benefits. Children with HIV/AIDS and persons who became disabled prior to the age of 22 may also be eligible to receive SSDI or SSI benefits.

How Does Social Security Determine Disability?

Persons with HIV may be able to qualify for disability benefits. You may qualify for disability benefits if you have a condition which is expected to last at least twelve months and which prevents you from working. A condition which is expected to result in death within twelve months could also qualify you for benefits. You will probably be eligible to receive disability benefits if you are unable to work and have an AIDS diagnosis.

Social Security frequently denies the initial application for benefits. You can appeal a denial of benefits to an Administrative Law Judge who may be able to further consider other factors (depression, fatigue, neuropathy, education, age, or medical conditions unrelated to HIV) which influence your ability to work. Because your doctor also has to recommend you for disability based on your medical history, always tell him about all your symptoms even if they don't seem important to you.

Added together, they may qualify you for disability. It is very common for Administrative Law Judges to overturn earlier Social Security decisions. You must be careful to appeal within the allowed time period. If you had an earlier Social Security application denied and did not appeal the denial, you may request the Administrative Law Judge to reopen the first application which would result in an award of back benefits calculated to the time of the first application. It is very important that you appeal any adverse decision within the specified time period.

What Other Benefits Could I Receive?

You may be eligible for other programs such as state and private disability insurance, low income housing, food stamps, veterans benefits (including medical care), unemployment insurance, Independent Living services, and Vocational Rehabilitation. To be eligible for unemployment benefits, you must be willing and able to work. Therefore, you can't apply for unemployment if you're applying for disability benefits.

Your local AIDS service or advocacy organization may be able to assist you with food, housing, or other financial necessities. There are also emotional support groups, advocacy programs, and housing programs available through AIDS service organizations or governmental agencies.

12. BIBLIOGRAPHY

The material listed in this bibliography can be obtained at your nearest law school library.

Rennert, S., AIDS/HIV and Confidentiality: Model Policy and Procedures, University of Kansas Law Review, Vol. 39 653-737, Spring 1991.

Berendt, E., Your HIV Positive Client: Easing the Burden on the Family Through Estate Planning, John Marshall Law Review, Vol. 24 AIDS Symposium, 509-691, Spring 1991.

Michaels, L. L., Legal Issues Confronting Families Affected by HIV, John Marshall Law Review, Vol. 24 AIDS Symposium, 509-691, Spring 1991.

Issachman, S.H., Are We Outlawing Motherhood For HIV Infected Women?, Loyola University of Chicago Law Journal, 22, 479-496, Winter 1991.

Group Health Benefits, Discrimination Against AIDS Victims: Falling Through the Gaps of Federal Law-ERISA, The Rehabilitation Act and the Americans With Disabilities Act, University of Loyola at Los Angeles Law Review, Vol. 24 1247- 1300, June 1991.

From Penthouses to AIDS Hospices: Neighbors' Irrational Fear of Treatment Facilities for Contagious Diseases, Columbia Human Rights Law Review, Vol.22 1-20, Fall 1990.

Smith, J.M., HIV/AIDS and Workplace Discrimination: Dickens Revisited, University of West Los Angeles Law Review, Vol. 22 1- 57, 1991.

AIDS and Informed Consent: Recognizing Partners as Surrogate Decision Makers, Vermont Law Review, Vol. 15, 333-367, Winter 1991.

Smith, T. J., AIDS and the Law: Protecting the HIV-Infected Employee From Discrimination, Tennessee Law Review, Vol. 57 539-573, Spring 1990.

Austin, J. R. and Tramme, R. S., HIV/AIDS and the Pre-existing Health Condition Standard: Teaching an Old Dog New Tricks, John Marshall Law Review, Vol. 24 AIDS Symposium, 509-691, Spring 1991.

HIV/AIDS and Adolescence: Implications For Schools, Journal of Law and Education, Vol. 20 325-343, Summer 1991.

Federal Disability Legislation

Rehabilitation Act of 1973, etc.

Americans with Disabilities Act, 42 USC 12101

Fair Housing Act P.L. 100-4310; 42 USC Section 3601 et. seq.

Individuals with Disabilities Education Act (IDEA) 28-18-1(B) (1975 et. seq.)

13. RESOURCE LIST

PROTECTION AND ADVOCACY SYSTEM in your state.

LAMBDA LEGAL DEFENSE FUND: 212-995-8585.

NATIONAL MINORITY AIDS COUNCIL: 202-544-1076.

NATIONAL ASSOCIATION OF PEOPLE LIVING WITH AIDS: 202-898-0414.

AIDS ACTION COUNCIL (202) 986-1300

YOUR LOCAL CITY, COUNTY, STATE HEALTH DEPARTMENT for information on testing and local AIDS support and educational services.

AIDS HOTLINE, National: 1-800-342-AIDS. In Spanish: 1-800-344-SIDA

AIDS HOTLINE in your state or city.

NATIONAL AIDS INFORMATION CLEARING-HOUSE: 1-800-458-5231 CDC, information regarding HIV/AIDS.

PROJECT INFORM: 1-800-822-7422, information on traditional and alternative treatments.

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