Publications and GuidesLIVING WITH HIV
November, 1998.
This booklet was produced by AIDSLaw of Louisiana, Inc., which is supported
in part by grants from the Louisiana Bar Foundation's Interest on Lawyers' Trust
Accounts (IOLTA) Program, and Titles I and II of the Ryan White Act.
This booklet is intended to provide you with practical information on how to avoid problems and obtain benefits. However, if you encounter a problem, this booklet is not a substitute for consulting an attorney. There are also instances in which you may want to consult an attorney before you have a problem, such as when you are reviewing your insurance coverage or when you are deciding whether the time has come to file an insurance claim or apply for disability benefits. While this booklet gives some general rules for these instances, every individual's situation is unique and an attorney can help you decide what is the best course of action in your case.
Finally, although you need to maintain confidentiality, you should not let this
prevent you from seeking help. As mentioned above, there are many instances
in which you should consult an HIV knowledgeable attorney. Additionally, you
should tell a doctor about your HIV-status as soon as you discover it.
However, this doctor should be both knowledgeable about HIV-treatment and
HIV-related discrimination remains a very real problem. Many people, possibly including your employer, co-workers, landlord, neighbors, teachers, or healthcare providers are irrationally afraid of even casual contact with someone who has HIV. Their fear can cause you and those close to you to be denied a wide range of opportunities and services.
Although much of this discrimination is illegal, the law does not always offer
effective protection. Lawsuits take time, money, and require that you prove
discriminatory intent, which is often impossible. Additionally, some
HIV related discrimination is not illegal. For example, small employers, small
landlords, and religious organizations are often not covered by antidiscrimination
laws. Also, health, life, and disability insurers can legally refuse
you new coverage if you are HIV-infected and may sometimes be able to reduce
or eliminate your coverage. However, under the Health Insurance Portability Many people with HIV/AIDS are choosing to combat this discrimination, and its underlying stereotypes and fears, by "going public" about their condition. By showing the public that people with HIV are ordinary people, they have greatly changed general attitudes. As more people with HIV are open about their condition, the better the situation will become. However, before you make a disclosure to anyone, you must carefully examine the possible consequences. You should determine what types of discrimination you may face and the likelihood that this will occur. If you are unsure of what could happen, consult AIDSLaw or your local AIDS service organization. You should also consider that even a "confidential" disclosure to a close friend or family member might be passed on to others. For some, there will be few or no adverse consequences to disclosing. Others may find yourselves in the front lines of this battle. If you are unable or unwilling to deal with the discrimination you may face, you need to maintain the confidentiality of your HIV status. In this situation the simple rule is: DO NOT TELL ANYONE unless there is a strong reason why that person needs to know and unless you are sure the information will go no further.
Medical Records and Testing Additionally, whenever you apply for new insurance coverage or file a claim on an existing policy, the insurance company may seek to review your medical records. If you refuse to sign the consent request, your application or claim will be denied. You should also be aware that many insurance companies share information with each other: if one insurance company learns that you have a medical problem, many other insurers may have access to this information through an organization called the Medical Information Bureau (MIB). Insurance companies may also share information on your health and lifestyle with consumer credit reporting agencies that, in turn, may sell this information to employers, landlords, lenders, etc. Other organizations may similarly ask for a "consent" that for all practical purposes you are required to give. For example, schools may require access to your medical records before admitting you and lenders may require such access before making a loan.
Finally, medical and social service providers must report all cases of AIDS,
including the patient's name, to the Louisiana Office of Public Health.
HIV infection must also be reported, though the provider can omit the patient's name.
Cases reported to local and state authorities are also reported to the federal
Centers for Disease Control (CDC). While Louisiana health authorities have,
to date, maintained the confidentiality of this list of names, the state legislature
could make this list available to other agencies. For example, the State of
Illinois compares its list of HIV-infected persons with a list of all health care
workers and limits the practice of infected health care workers.
The Need for Insurance Coverage Many people with HIV will eventually become unable to work. This loss of income, especially when coupled with the high costs of medical care and the loss of job-related benefits, can rapidly deplete anyone's resources. Although public benefits are available to people disabled by HIV/AIDS, these benefits usually include very limited options for medical care and may only allow for a fairly low standard of living. Thus, good insurance coverage is extremely important to someone with HIV. Disability insurance will provide you with an income if you become unable to work. Disability insurance often can also be purchased to cover a particular loan, such as a mortgage or credit card account, and will make your payments in the event you become disabled. Good health insurance will allow you a choice among medical providers and will protect your savings, home, etc. from medical creditors. Life insurance is useful not only to help your dependents after you are gone, but can often be sold for a significant amount of cash while you are living.
If you are HIV-infected, or suspect that you may be, you should carefully
review your health, life, and disability insurance to make sure that you have
sufficient coverage should you become ill. (Note - Insurance policies are
notoriously difficult to read. If you have trouble understanding yours, consult Obtaining New Coverage
The fact that you have HIV may make it difficult for you to obtain new
coverage. Under Louisiana law, insurers can, and in most situations will, refuse
to issue new individual coverage to anyone with HIV. Applications for
individual policies ask specifically about HIV and AIDS. Some insurers may
If you have misstated or omitted your HIV-status in obtaining an individual policy, the insurer may later try to "rescind" that policy and refuse to pay benefits, even though it had initially accepted your application. ("Rescission" means a policy is treated as though it never existed: your premiums are returned to you and you have no coverage.) Insurers rarely inspect your medical records at the time of your application. Rather, they wait until you file a claim for benefits. If your insurer then finds any evidence of a material error on your application, e.g., that you knew you had HIV when you applied, it will have grounds to rescind the policy.
An insurance company cannot unilaterally rescind a policy. You must agree to
the rescission or the insurer must obtain a court order allowing it. (Often,
however, it is the policy holder who must initiate a lawsuit for payment, since
the insurer may just do nothing.) If you are considering contesting a rescission,
do not cash the insurer's check returning your premium payments and do not
sign any documents suggesting that you accept in any way the company's
action. If the matter goes to court, the insurer must prove that there was a
material error in your application. This requires that there be something in your
medical records which contradicts the information you gave on the insurance
There are also time limits on an insurer's right to rescind a policy. Under
Louisiana law, a life insurance policy may only be rescinded during the first two
years it is in effect. The time limit on rescinding other types of insurance, such
as a health or disability policy is usually three years. However, such a policy Another pitfall to avoid is purchasing additional insurance that will not provide you with additional coverage. Many policies, particularly disability and health policies, limit the total amount of benefits you may receive under all policies. If your existing policy will already pay to that limit, the additional policy is a waste of your money. Again, if you are unsure of when and how much a policy will pay, consult an attorney or an insurance expert. Maintaining Coverage Because of the difficulty you may have in obtaining valid new coverage, maintaining your existing coverage is extremely important. Even if you believe you can replace it with a better policy, double check with an insurance expert or an attorney before you let a policy lapse.
Also check with an attorney before you file your first HIV-related claim. Proper
timing of your first claim can protect you against premium increases and
minimize the chance that the insurer will attempt to rescind your policy.
Although it is legal to deny you new coverage, it is very often illegal for your Employee Group Coverage
If your insurance coverage is a fringe benefit of your job, changing or leaving
employment poses special problems for maintaining coverage. Always
carefully review the consequences to your coverage before changing jobs. If
a new job is better in other respects but offers poorer insurance coverage, you Until recently, “pre-existing condition limitations” provisions, which are contained in almost all health plans, posed a major problem for people who wished to change employers. A pre-existing condition is generally any medical condition that you have at the time you join a health plan. The limitation provision means that the plan will not pay for treatment of the pre-existing condition for a certain period of time - usually one year, but possibly much longer if the employer is self-insured. However, the recently enacted federal Heath Insurance Portability and Accountability Act (HIPAA) largely eliminates this problem. Under HIPAA, the pre-existing limitation period in an employer provided health plan cannot exceed one year. Moreover, in applying the pre-existing condition limitation, the plan must give you credit for the amount of time you were covered under prior health insurance, as long as there has not been more than a 63 day gap between the time your prior coverage ended and the time you joined the new plan, Thus, if you are currently insured and have been insured for at least a year, you cannot be subject to any pre-existing condition limitation period when joining a new employer’s plan. If you intend to leave a job, first find out if you have the right to "continue" or "convert" any of the insurance coverage you have at that job. These rights should be spelled out in your employee benefit booklet or plan summary. Most employees have some right to continue their health coverage. Under a federal law commonly called "COBRA," if you work for an employer with 20 or more employees, you are allowed to continue as a member of an employee group health plan for up to 18 months after you leave your job, or until you are covered by another group policy and have fulfilled the waiting period for coverage of pre-existing conditions under the new policy. If you are disabled at or within two months of the time you leave a job, you can continue coverage or a total of 29 months. (At the end of 29 months, you should be eligible for Medicare if you have been receiving Social Security Disability.) A similar Louisiana law mandates continuation coverage for most employers with three or more employees, but the maximum period of coverage is 12 months. Under both COBRA and the state statute, you will likely have to pay the entire premium for this continuation coverage, even though your employer may have paid all or part of the premium while you were working. COBRA also allows your employer to add a monthly administrative surcharge to your premium. This can be up to 2% during the first 18 months and up to 50% after that. The federal statute requires that you receive notice of your right to continued coverage on two different occasions. The first is when you become eligible to participate under the plan, typically when you are hired. This first notice is usually contained in an employee benefit booklet or plan summary. You should also receive notice of your COBRA rights within 14 days of the date you leave employment. To obtain ("elect") COBRA continuation coverage, you must notify your employer or plan administrator, in writing, within 60 days of the date you receive this notice. You must then make your first monthly premium payment within 45 days of your election. Additionally, if you are disabled and wish to keep your health coverage for more than 18 months, you must provide your employer with a copy of your Social Security disability determination letter within 60 days of the date you receive it. Your employee benefit booklet and COBRA election notice should contain these deadlines, along with information on how to make payments. If they do not, or if you cannot decipher them, ask your personnel manager. If he or she is not helpful, contact an attorney. You may also have rights to continued health care coverage under the federal Family and Medical Leave Act (FMLA). If you are covered, this law allows you up to 12 weeks of sick leave per year. Your health insurance must be continued during the leave and your employer must continue to pay any portion of the premium which it was paying while you were working. Coverage under the FMLA is much narrower than under COBRA. In addition to some other requirements, your employer must have at least 50 employees and you must have worked for that employer for at least a year in order for you to be covered by this law. Under recent changes to federal and Louisiana law, virtually everyone losing employee group coverage, including those whose COBRA coverage is expiring, may purchase individual coverage through the Louisiana Health Insurance Association (LHIA). LHIA coverage is similar to that offered by private insurance companies to people who do not have health problems. However, the cost can be up to twice what a healthy person would pay. You can obtain an application by calling LHIA at (504) 926-6245. Note that LHIA coverage is not available to people who are eligible for Medicaid or Medicare. Additionally, you may have the right under the terms of your employer group plan to purchase a “conversion policy” when your group coverage ends. However, the conversion policy will usually cost more and provide less coverage than the group plan. Also, the benefits in the conversion policy may be further reduced or may end entirely when you become eligible for Medicare.
Unlike COBRA continuation coverage, there is usually no time limit on how
long you can keep an individual or converted policy. If your spouse and/or dependent children were covered under your group policy,
they will also have health insurance continuation rights that may extend past
your death. With respect to disability and life insurance, federal and Louisiana law mandate virtually no conversion or continuation rights. (A Louisiana statute requires an insurer, in some instances, to offer an individual life policy to someone leaving a group life plan. However, the face value of such a policy does not have to exceed $1,000.) Nonetheless, your particular plan may have substantial conversion rights and you should check your employee benefit booklet Cashing in Your Life Insurance If you have a life insurance policy, you may be able to convert it to a significant amount of cash while you are living. There are several different ways of doing this:
(1) Advance or "Living" Benefits. The company which issued your policy
may be willing to pay part of the death benefit to you before your death. Many
recent policies contain an explicit provision for advance benefits. Even if a
policy does not have such a provision, many insurers are willing to pay an The typical advance benefit provision requires that you have a life expectancy of a year or less. You are paid a certain percentage (usually 25% but some companies may pay as much as 100%) of the death benefit. The remainder is paid to your beneficiary upon your death. The amount paid to you is not taxable. Your beneficiary will also owe no taxes on the amount paid to him after your death. (However, the amount paid to a beneficiary may increase the taxes your estate will pay if the total value of your estate, including life insurance, exceeds $625,000.) (2) "Paid-Up" Value. If you have a "whole life" policy, the issuer will give you its paid-up value in exchange for your surrendering the policy. The insurer may also allow you to borrow against the policy up to its paid-up value. The paid-up value will be listed in the policy and increases yearly. However, unless the policy has been in effect for many years, the paid-up value will usually be only a small fraction of the death benefit. Therefore, it is usually not advisable for a person with HIV to surrender a policy for its paid-up value. On the other hand, a loan against the paid-up value will leave the death benefit, less the amount of the loan, for your beneficiary. (3) Private Loans. If you have a friend or family member who is fairly wealthy and is willing to do so, you should consider borrowing from that person and naming him or her as your beneficiary. In this way, the life insurance proceeds will pay back the loan. The advantage to this approach is that it allows you to avoid or minimize taxes. A loan is not considered income, so you are not taxed when you receive it. Your lender/beneficiary should also have no tax liability, regardless of how much profit is made, because the life insurance proceeds paid in the event of your death are exempt from taxation.
(4) Viatical Settlements. There are now a number of companies that will
buy life insurance policies from people with terminal illnesses, paying a
percentage of the death benefit. We advise against making a viatical settlement
if other options are available to you. This is because the purchaser will make
a substantial profit, money which could have gone to you or your beneficiaries
under one of the other approaches. Additionally, the amount you receive may
be taxable. A recent change to the federal tax code makes some viatical
settlements tax exempt. (The requirements for the tax exemption are that (1) The sole advantage of a viatical settlement is that it may be available when the other options are not. For example, although insurance companies require a life expectancy of a year or less before they will pay an advance benefit, some viatical settlement companies will purchase policies from people with up to a five-year life expectancy. If you decide to sell your policy, you should keep the following in mind:
The
following is a partial list of Approved Viatical Settlement
Brokers:
VSS Corp. Shelby L. Watson
Byron J. Moeller Peggy S. Wallace
Harold Joseph Shea, Jr. Individual Benefits, Inc.
Louisiana Viatical Services, Inc. All American Health & Life Louisiana Department Of Insurance: 1-800-259-5301
Regardless of which option you choose, if you are on any asset-based public
benefit programs, such as Medicaid, you will likely lose your eligibility for
those benefits. If this concerns you, you should consult an attorney with
expertise in Medicaid planning and trusts to see what alternatives are available
to you.
The Need for Endstage Documents Everyone, especially people affected by HIV/AIDS, should execute some basic legal documents, both to keep control over their own lives and to protect their loved ones. With the properly executed legal documents, you can retain control over many important decisions, even if you later become incapacitated. These decisions include:
If you do not put your instructions in writing, your next-of-kin has the right to make many of these decisions and will inherit all of your property. For example, if you are legally single with no children, your parents have the right to make all medical decisions for you if you become incompetent. This includes whether or not to place you on life-support. Absent a power-of-attorney or other written instructions from you, no one could take care of your financial affairs, including simple things such as depositing your checks and paying your monthly bills. Upon your death, your property would go first to your parents and then to your siblings or their descendants. As Louisiana law does not recognize ties of affection, a close friend or longtime partner could be completely cut off from you and would have no right to continue using any of your property if you became incompetent. He or she would be entitled to nothing upon your death, not even personal effects of a sentimental value. More importantly, your partner or close friend might lose the home and all the household furnishings that he or she shared with you. At a minimum, he or she might be faced with a fight with your parents or other relatives. A good rule is: hope for the best but prepare for the worst. There are several reasons why you should execute these documents as soon as possible. Most people are more comfortable making these decisions and executing the documents while they are healthy. Moreover, a person with HIV may unexpectedly develop mental problems that may make execution of these documents difficult or impossible. Finally, if you put it off until you are ill, your relatives will have an easier time challenging the validity of the documents. With one exception, adoption, you can change your mind about any of these decisions at any time. General Powers-of-Attorney In a document called a "power-of-attorney" you can authorize a trusted friend or family member to take care of your personal and financial affairs. The authority granted in the power-of-attorney can be as broad or as narrow as you want it to be. The document can authorize such things as banking, paying bills, opening and answering mail, taking care of property, and dealing with insurance companies. By signing a power-of-attorney you do not lose the right to do any of these things for yourself: you are merely authorizing the other person to act as your agent. You may revoke the power-of-attorney at any time.
In your power-of-attorney, you may also wish to nominate a curator. In the
event that you become mentally incapacitated, a court could place a curator in
charge of your affairs. If you have nominated a curator ahead of time, the court
will almost certainly appoint that person. While a sufficiently broad Although you do not have to sign a power-of-attorney in the presence of a lawyer, there are several reasons to seek a lawyer's help when preparing this document. A lawyer can assist in drafting the power-of-attorney so that it is as broad or as narrow as you want it to be. The lawyer can also explain the risks and limitations of the document as applied to your situation. Finally, a document that has been notarized is much more likely to be accepted by banks and other third parties.
Even if you do not want to appoint an attorney-in-fact, you may allow a friend
or partner to sign checks drawn on your account. If your bank account in titled
in your name AND you partner’s name both people must be present whenever
any transactions are made. A power of attorney will be required for one of the
account holders to transact business in the absence of the other. If the account Advance Medical Directives
Under Louisiana law, you have the right to control your medical care.
However, in the later stages of HIV-infection, you may become unable to make
decisions or communicate those decisions to your health care providers. By
putting your wishes in writing ahead of time, you can maintain control over Medical Powers-of-Attorney. A medical power-of-attorney grants authority to the person of your choice to make treatment decisions for you if you cannot make them for yourself. This person will generally not have the right to withhold or withdraw life support (see Living Wills, below), but will have the right to make all other medical decisions. You can also give to your "attorney-in-fact" the first right to see you in a hospital if you cannot express a preference. If you want someone other than a family member to make important medical decisions for you and to be with you when you are ill, you should execute this document. You should give copies of this document to any physician who treats you and to any hospital to which you are admitted. The person named in your medical power-of-attorney should also retain a copy. Although you do not need a lawyer to execute this document, a lawyer can advise you and make sure that the document expresses your intentions. Living Wills. In this document you can spell out any limitations you wish placed on your medical treatment at the end-stage of a fatal illness. A Living Will becomes effective when the following conditions are met:
(1) You have an incurable illness that is likely to cause death in the near future (2) Without life-sustaining treatment, your death is imminent; and
(3) The life-sustaining treatment will not improve your condition, but will only In the Living Will you may specify which medical procedures you want withheld or provided or you may simply state you want no medical care other than that necessary to make you comfortable. You also have the option of designating another person to make these decisions for you. A Living Will can be executed in the presence of two witnesses, without a lawyer. A notary is not required. Since Louisiana law provides a suggested form, however, you may want to consult a lawyer if you decide to write your own Living Will. You should give a copy of your Living Will to each of your physicians and to any hospital to which you are admitted. You should also discuss your decisions with close relatives and anyone whom you have named in a Medical Power-of-Attorney, as well as give these persons a copy of the document and ask them to see that your physicians respect your wishes. Arrangements for Care of Children
If you have minor children, you should think about who is going to raise them
if you become too ill to do so or if you pass away. Naturally, if the other parent
is living and is interested in the children, he or she will have primary
responsibility. If the other parent is deceased, not interested in the children, or In a special power-of-attorney, called a Provisional Custody by Mandate, you can give someone else the right to take care of your children while you are still living. This will allow that person to do such things as consent to medical care for the children, enroll them in school, etc. The mandate does not affect your ability to make decisions regarding your children: the named person is acting only as your agent and you can overrule his or her decisions at any time. This document is only effective for a year, so you will need to re-sign it annually. Also, it has no effect after your death.
Therefore, in addition to a Provisional Custody by Mandate, you should appoint
a "tutor" or guardian. This is the person who will be responsible for your
children after your death. You should do this in your Will and in a separate
document. Your choice of a guardian is only advisory: a court will appoint a
If you anticipate there may be a dispute over the children, if, for example, you
do not want the other parent to have custody or you want someone other than
a relative to have custody, you should consider transferring custody while you
are living, rather than merely nominating a tutor. This will require a court
proceeding in which you can tell the court why you believe your choice is in the A Last Will & Testament This document controls who receives your property once you are gone. If you have children under the age of 24 or who are incapacitated, a certain percentage of your property must go to them. Otherwise, there are no restrictions on to whom you may leave your property. Even if you have little or no money, a will can settle many personal matters that are important to the people you care about most. A will can also establish a trust for any assets that you leave to your children. Without a will, children automatically inherit property from a parent and acquire full control of that property when they turn eighteen. Through a will, you can make sure that your children do not have control of their inheritance before they are mature enough to manage it. Louisiana recognizes two different types of wills. Handwritten wills, called olographic wills, are valid as to form if they are written entirely in the hand of the person making the will and are dated and signed on each page. There are several drawbacks to an olographic will. First, olographic wills are usually drafted without advice from an attorney. As a result they often attempt to give away property in ways that the law forbids, contain language that is ambiguous, or do not provide for contingencies. Olographic wills are also more easily challenged than wills drafted by an attorney. Finally, since the making of an olographic will requires no witnesses, no one can testify that the person making the will intended to dispose of property and was mentally capable of doing so at the time the will was written. Unlike the olographic will, the notarial testament is drafted by an attorney and signed before a notary and two witnesses. The law requires that certain formalities be followed, making a court challenge less likely than in the case of an olographic will. To avoid the complications of a contested will on the grounds that you were too ill to make a rational decision, you should make a will as soon as possible. Estate Planning Anyone facing a serious illness should undertake estate planning, even if the estate is very small. Designating beneficiaries of life insurance, pension, and profit-sharing plans can protect relatives, friends, and partners. You should periodically check whom you have listed as the beneficiaries for these types of plans. If the person you have designated has died or if you have designated your estate as the beneficiary, you should immediately ask for, execute and return a "change of beneficiary" form. There are several reasons for this: if the proceeds are paid to your estate, they will be tied up in probate until the estate is settled; they will be subject to inheritance tax; and they will have to be used to pay off your debts. Your heirs or the people named in your Will only receive what is left over. If you have a named beneficiary, the money goes directly to that person. You may also give away your property during your lifetime. Most personal property can simply be physically given to another person, but you should consult an attorney if you want to make a gift of automobiles, real estate, or of financial papers, such as shares of stock. Merely adding another person's name to your bank account or to the title of your property does not make that person an owner and does not guarantee access to that property after your death. Funeral Arrangements It is not a good idea to leave instructions for funeral arrangements in a will. A will is often not looked at until after the funeral. Additionally, a court must find the will is authentic before its provisions are legally enforceable. This authentication procedure ("probating the will") can take several weeks. As a result, the wishes of the family concerning burial rituals often prevail, even if those preferences conflict with those of the deceased. Some people also believe that they can give burial instructions in a power-of-attorney. This is ineffective because your power-of-attorney is not valid after your death. A specific declaration of your wishes, however, made before a notary, is enforceable under Louisiana Revised Statute 8:655, Right of Disposing of Remains. In addition, the declaration can provide strong moral pressure for your relatives to follow the wishes that you expressed in the declaration. Such a declaration can include, among other things, your designation of a person to make arrangements and your wishes concerning burial, memorial or funeral services, and obituary notices. The person whom you designate to make funeral and burial arrangements should have the original or a certified true copy of your declaration. PREVENTING TRANSMISSION LIABILITY DO NOT EXPOSE ANYONE ELSE TO THE VIRUS. If you do so, you could face severe criminal and civil penalties. Louisiana Revised Statute 14:43.5 specifically outlaws intentionally exposing another person to HIV without the informed consent of that person. The penalty for violating this law is up to ten years at hard labor. Other criminal statutes, including attempted murder, aggravated battery, and negligent injuring might also be applied when someone has exposed another to HIV, whether sexually or through other means. Informed consent is not a defense to all of these crimes, nor is the fact that the other person was not infected. Additionally, if you do expose someone, they may be able to sue you for money damages, to compensate for the injury suffered. Some Louisiana courts have allowed lawsuits even where the exposed persons did not become infected, to compensate for the anxiety they suffered while waiting to learn their HIV status. The law has yet to clearly define what constitutes "exposure" to HIV. However, to protect yourself from this charge, you should, at a minimum, inform partners of your status and strictly follow safer-sex guidelines. If you are unsure of the guidelines or feel uncomfortable broaching the subject with sexual partners, contact your local AIDS services organization for instruction and counseling. Transmission, or at least "exposure," is also possible during certain types of medical procedures. If you decide not to inform a medical care provider of your HIV-status, you should inquire and observe whether he or she is following infection control procedures known as "universal precautions." You need not feel uncomfortable doing this: these procedures are designed to protect you from being infected by the medical provider, as well as vice versa. If you believe the provider is not following universal precautions, seek care elsewhere. These steps should minimize the possibility of a lawsuit by your medical providers.
PART II RIGHTS & BENEFITS Federal, state and local laws broadly prohibit discrimination against the disabled in employment, housing and public accommodations. AIDS, asymptomatic HIV-infection and even the perception that one has HIV are disabilities for the purposes of these anti-discrimination statutes. However, these are issues currently under review by the Supreme Court. Additionally, people "disabled" by HIV/AIDS may be entitled to assistance and services under numerous federal, state, local and private programs. However, the standard of disability used in determining eligibility for these benefit programs is often much stricter than that in the anti-discrimination laws. Usually, you must have a physical or medical impairment, not just HIVinfection. Often, you must also show a financial need. This section covers the rights of and the benefits available to people with HIV/AIDS in several different areas. EMPLOYMENT (Note - Health care providers and members of the Armed Services face special problems with regard to employment. These are discussed in separate sections of this booklet.) Discrimination All private employers with 15 or more employees (except certain private clubs), all private employers who receive government funds, and all state and municipal employers are covered by state and/or federal anti-discrimination statutes. Labor unions and employment agencies are also covered by these statutes. As long as your condition does not interfere with your ability to perform your "essential job functions," these laws protect you against discrimination in any of the terms or conditions of employment. Even if your condition does interfere with your ability to do your job, the law may require your employer to make "reasonable" accommodations within your job environment or duties if these will enable you to do the job. This might mean adjusting your hours or work assignments if these adjustments do not "unduly burden" the employer. You may also have the right to take a certain amount of time off from work for medical care under the Family and Medical Leave Act. (Your employer can, of course, let you go if you become too sick to do your job, but even then it must offer you the same benefits it offers other medically discharged employees.) The anti-discrimination laws mean that an employer may not discriminate against you even if co-employees refuse to work with you or if customers refuse to patronize the business because of your condition. If you are harassed by your co-employees and your employer does not attempt to stop it, you may have the basis for a lawsuit against the employer. Additionally, the federal Employment Retirement Income Security Act (ERISA) prohibits employers from discharging you to prevent you from claiming employee benefits such as health care or disability pay. However, there are some real and practical limits to these laws. As mentioned above, not all employers are covered. If an employer is covered, it can often find a pretext for firing you other than HIV/AIDS. Your employer may feel it has no option but to ignore the law if, for example, you are a cook and no one will patronize the restaurant because of your HIV status. Finally, the law is not self-enforcing: you will need to bring a lawsuit, you will need to convince a judge or jury that you have been discriminated against and, even if you succeed, you will probably have to wait several years before you are compensated. Thus, as spelled out in the first section of this booklet, your best protection against discrimination is maintaining the confidentiality of your HIV status.
While keeping your HIV infection a secret is your best defense against
discrimination while you are asymptomatic, you will have to tell your employer
something if you need to take time off for illness or treatment. At some point
you may need to inform your employer of your condition to qualify for sick
If you do encounter discrimination, you should seek legal help. In order to
bring a lawsuit based on federal anti-discrimination laws, you must file a
complaint with the Louisiana Human Rights Commission (LHRC)\and then
with the federal Equal Employment Opportunity Commission (EEOC.) within
90 days. Some circuits have held that filing a complaint with the LHRC is no
longer a preliminary step to filing a complaint with the EEOC. If you choose to
file a complaint with the LHRC, you must do so in a timely fashion or your
claim will lapse. The time limit for filing a complaint with the LHRC is within
180 days of the action upon which the complaint is based. The time limit for You need not file an administrative complaint prior to bringing a lawsuit based on state anti-discrimination law, although the LHRC will investigate and attempt to resolve violations of state law as well. Regardless of whether you file a complaint based on state law, you must file a complaint to preserve your rights under federal law. You may call or write these organizations at the following addresses:
Equal Employment Opportunity Commission (EEOC)
Louisiana Human Rights Commission (LHRC) Additionally, if you are covered by a collective bargaining agreement, whether or not you are a union member, you should file a grievance with the union. Employment-Related Medical Examinations
Employers covered by the Americans with Disabilities Act (ADA) have no right
to ask whether you have any disability until after they have made a conditional
offer of employment. Thus, apart from screening for illicit drugs, you should
not have to undergo any medical exam as part of your job application process.
If you have to take a pre-employment drug test and are asked if you are on any After you have been offered employment, but before you begin working, you may have to submit to a medical exam - but only if it is required of all other incoming employees. The ADA places no restrictions on these post-offer, preemployment medical exams. After you have begun working, your employer can require medical information or exams only to assess your ability to do your job. The doctor and other medical personnel performing these exams work for your employer and will report the results of the exam to your employer without your permission. However, asking about or testing for HIV is rarely a part of these exams because few employers have any legitimate need for this information. If an employer demands an HIV test, takes action against you for refusing an HIV test or takes action against you after learning the results of an HIV test, you should immediately contact an attorney. An employer may also want a report from your private, treating physician if you have been out sick. If you are planning on returning to work, speak to your doctor about omitting any mention of HIV or AIDS from the report. Your doctor can simply report the particular illness you were suffering from, without reporting that it is secondary to HIV-infection. If the particular illness is closely associated with HIV/AIDS, your doctor can usually describe the illness more generally. For example, the doctor can state you had pneumonia rather than PCP. If your employer is involved in processing your health insurance claims you should ask your doctor to take similar measures on these forms as well.
As stated above, however, there may come a time when you will need to
provide your employer with more information. If your illness will permanently
prevent you from returning to work, it is usually wise to let your employer know
that you have HIV/AIDS. At that point, you should no longer have to worry HEALTH CARE Discrimination Virtually all health care providers (physicians, nurses, hospitals, nursing homes, ambulance services, etc.) are now covered by laws prohibiting discrimination against people with HIV/AIDS. These laws prohibit a health care provider from refusing you treatment or services, as well as from treating you differently or charging you more, based solely on your HIV-status. There are two limitations on this protection. First, a health care provider does not have to treat you if your condition requires specialized skills or knowledge that he or she does not have. In this case, the provider need only refer you to an appropriate specialist.
Secondly, a health care provider may not have to treat you if there is a
significant risk that he or she will become infected. Many health care providers,
especially dentists and osteopathic surgeons, continue to refuse to treat people
with HIV, citing the risk of transmission. On a related point, some health care For these reasons, the courts should find that a health care provider has no right to refuse treatment or to insist on an HIV test. The few courts cases that have addressed these issues have so found. However, it will probably be several years before there is a definitive answer to these questions. Until then, you may still encounter health care providers who will refuse to treat you or who insist on testing. To minimize the risk of such discrimination, you can refrain from informing a health care provider of your HIV-infection or that you are a member of a "high risk" group when this information is unrelated to the treatment you are seeking. For example, you need not tell your dentist that you are HIV-positive or gay when you are seeking a routine check-up or cleaning. However, you should always determine whether your health care providers are following infection control procedures known as "universal precautions." Such procedures include wearing gloves and a mask and sterilizing equipment between patients. If a health care provider does not follow these procedures, take your business elsewhere. Various agencies are charged with investigating and prosecuting violations of the anti-discrimination laws. If you have been denied medical services or otherwise discriminated against by a health care provider, report it to:
Public Access Section
Office for Civil Rights
Louisiana Human Rights Commission If your health worsens because of such discrimination, you may have the basis for a lawsuit for money damages and you should consult a lawyer. Treatment for Those Unable to Pay Treatment for HIV can be extremely expensive. For the most part, private physicians and hospitals are under no obligation to treat you if you cannot pay. The only way to guarantee access to medical care is to be extremely wealthy or to have adequate health insurance. (See the Insurance Section of this booklet.) There are some limited circumstances under which a private doctor or hospital must provide you with medical care, regardless of your ability to pay.
There are, however, several institutions throughout Louisiana which provide treatment for HIV to those unable to afford health care. Many of these have clinics specifically for HIV disease. (Most of the institutions listed below are state hospitals.) The Medical Center of Louisiana, a.k.a. the Charity Hospital system (Inpatient and out-patient HIV programs, HIV prescription medications. Fees are on a sliding scale. Services are free for households with income up to 300% of the federal poverty level. If your household income is over this amount, you can be charged up to 20% of the excess. Thus, if you are a single person household and your annual income is $15,000 or less, there is no charge. Specific locations throughout the state are listed below.)
New Orleans: Medical Center of Louisiana/Charity Hospital, HIV
Shreveport:
L.S.U. Medical Center, Outpatient Clinic
Lafayette:
University Medical Center (318) 261-6785
Houma: Southern Louisiana Medical Center (504) 873-
Bogalousa: Washington/St. Tammany Medical Center (504) 735-1322
AIDS Drug Assistance Program (ADAP). Financial assistance with HIVrelated Veterans Affairs Medical Center in New Orleans. In-patient and out-patient HIV care for veterans. (504) 568-0811 University Hospice. Part of the state hospital system. Home hospice care in the New Orleans area. (504) 588-3138 AIDS Clinical Trials Unit. Free medications and care for people taking part in experimental drug studies. (504) 584-3605 Louisiana Community AIDS Research Program. Free medications and care for people taking part in experimental drug studies. (504) 584-1971
HOUSING Discrimination Both the federal and the Louisiana fair housing laws prohibit discrimination based on disability in the rental and purchase of housing. Federal law does not apply, however, to the rental of rooms or apartments in owner-occupied buildings with four or fewer units. The Louisiana law does not contain this exception. If you are denied housing because you have HIV, you may either file a complaint with the Department of Housing and Urban Development (HUD) or you may file a lawsuit. The HUD field offices for Louisiana are located at: Fisk Federal Building, 1661 Canal Street, New Orleans, LA 70112-2887, (504) 589-7219 New Federal Building, 500 Fannin Street, Shreveport, LA 71101-3077, (318) 676-3385 Affording Housing If your income falls within a range established by federal guidelines, you may qualify for rental assistance under Section 8 of the Fair Housing Act. Individuals receiving Supplemental Security Income or disability payments qualify. Under this program, up to 70% of your rent could be paid through a rent subsidy program. Unfortunately, the waiting period is often long. Communities with a high incidence of AIDS are eligible for federal funds under the AIDS Housing Opportunities Act (AHOA). The locality is given discretion in using these funds for shelters, permanent housing or rental assistance to people with AIDS. Even if your community is not receiving AHOA funds, it may have housing or rental assistance available for people with HIV/AIDS. Contact your local AIDS service organization or social worker to see what is available in your area. Public housing is another option. To apply in New Orleans, you select a particular development and make application at that development on Tuesdays or Thursdays between 9:00 a.m. and 3:00 p.m. You must be able to prove how much income you have. Verification can consist of tax forms or evidence of employment, unemployment compensation, or child support. You must also take rent and utility receipts for the previous two months. If you are on food stamps, take the food stamp printout and your Louisiana Purchase card. You will be asked about the family relationships of those who will live in the apartment. You must have a birth certificate and social security card for each of those persons and a picture ID for each one over 18 years old. The waiting period for public housing varies. The rent is based on income and averages $50.00 per month. Eviction You have no right to remain in your apartment if you cannot pay your rent. Although you can only be legally evicted through a formal eviction proceeding, the process moves very quickly and your landlord could have you removed from your apartment in as little as ten days from the date your rent was due. The process begins with the posting of "Notice to Vacate." If you have not vacated the apartment within five days of the posting of this notice, your landlord must then have you served with a summons to appear in court. The hearing will usually be three days after you receive the summons. If you have no legitimate defense to not having paid your rent (having no money is not a legitimate defense), the court will order you to vacate the apartment, usually within 48 hours. Some judges, though not many in Orleans Parish, may give you a few extra days if you have made some definite arrangements to move elsewhere. If you are not out at the end of the time allowed, the sheriff will remove you. About the only way to stop an eviction for non-payment is to pay the rent before the hearing.
You may also be evicted by the same procedure if you breach certain other
provisions of your lease. If you have no lease or have a month-to-month lease,
your landlord may evict you for no reason whatsoever. However, in this case
the landlord must give you written notice to vacate at least ten days before the
end of the month (or monthly rental period). If you are not then out at the end
of the month, he or she must have you served with a summons and follow the
other steps listed above. If your landlord's real motivation in evicting you is
your HIV-status and if you can convince the court of this,
the judge should allow you to stay. However, motivation is very difficult to prove so you may
have a hard time winning on this issue. Disability Income The federal government, through the Social Security Administration, has two programs that provide income to people who are disabled: Social Security Disability Insurance Benefits and Supplemental Security Income. Both use the same standard of disability: the inability to engage in any substantial, gainful activity due to a medically determinable physical or mental condition that is expected to last for at least twelve months or result in death. Any of several of the opportunistic infections associated with AIDS, for example, pneumocystis carinii pneumonia (PCP) or toxoplasmosis, will automatically lead to a determination that you are disabled. Any of several other infections, if coupled with a doctor's statement that you are impaired in certain functions essential to daily living and to working, will also lead to a determination of disability. For people who have symptomatic HIV-disease, but not one of the conditions listed in the Social Security guidelines, a determination of disability is made on a case-by-case basis. Although a determination that you are not disabled can be appealed, appeals will take months. Therefore it is very important to have your medical condition fully documented and to make sure that all your medical evidence is submitted when you first apply. Social Security Disability Insurance (SSD)
To be eligible for SSD, you must be (1) disabled, as defined above, and (2) have
been paying the "FICA" payroll deduction tax for a certain length of time,
usually at least five out of the last ten years. The amount of your Social Security Disability benefit will depend on your past
earnings and on how long you have been paying into the system. The typical
recipient gets about 50% of what he or she had been earning. If you have a
dependent spouse, child, or parent, they may be eligible for additional,
"dependants'" benefits while you are living and "survivors'" benefits if you pass
away. There is a five-month waiting period for SSD. That is, you are not
entitled to benefits for the first five months after the onset of your disability.
Your local AIDS service organization may offer assistance in applying for
An individual cannot receive both Social Security Disability benefits and unemployment benefits, because to receive unemployment, you must certify you can work. Supplemental Security Income (SSI) SSI is available to individuals who are disabled and who meet a financial need test. To qualify, your income must be under $478.00 a month and your assets can be no more than $2000 (not including a house and a car). The maximum SSI benefit is currently $458 a month, but is reduced by any income you are receiving from other sources (including non-monetary support such as room and board). The first $20.00 of the other income is ignored when calculating the SSI benefit. This means your total income from all sources, including SSI, can not exceed $478.00 per month.
The income and asset guidelines are somewhat higher if you are married.
However, the Social Security Administration will include the income and assets
of your spouse in determining your eligibility. Thus it is usually impossible to
qualify for SSI if your spouse is working. SSI is available to those who have not paid into Social Security or who have not
paid enough into the system. There is no waiting period for benefits. When
awarded, payments are retroactive to the date of application or date of onset of Individuals who are in the five-month waiting period for SSD are eligible for benefits under SSI if they meet the income and asset guidelines. To apply for SSI, you will need the following:
Health Insurance Medicaid and Medicare
Medicaid and Medicare are health insurance programs run by the federal
government and may afford the option of private medical care. If you are
disabled and receiving Social Security benefits, you may be eligible for one or
the other of these programs. (See section on Social Security for information on Medicaid - If you receive SSI and do not have private health insurance, you will automatically be enrolled in the Medicaid insurance program at no cost to yourself. Medicaid insurance is accepted by most hospitals in Louisiana. Unfortunately, few of the private physicians specializing in HIV will accept a patient whose only insurance is Medicaid. Check with your local AIDS service organization or with a local doctor referral service to see if any HIV-specialists in your area |