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LIVING WITH HIV: A Legal GuidePART I PREVENTING PROBLEMS
COMBATING DISCRIMINATION: HIV-related discrimination remains a very real problem. Many people, possibly including your employer, co-workers, landlord, neighbors, teachers, or health-care 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 anti-discrimination 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 and Accountability Act of 1996 (HIPAA) there is greater availability of insurance coverage than was previously available, subject to certain restrictions. 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 Protecting the confidentiality of your medical records poses special problems. Many people have access to these records: the entire staff at your doctor's office; literally dozens of hospital staff whenever you are hospitalized; if your employer is involved in processing your medical claims, then several of your co-employees. (Your employer is also entitled to see your medical records for workers' compensation purposes.) If one of these people gossips, the information in your medical records could become widely known at your job or in your community. 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. For these reasons, we suggest you keep your HIV-status out of your medical records, at least until you begin receiving treatment for HIV. (Until recently, treatment for HIV-infection was not started until the virus had begun to seriously compromise the immune system, which usually does not happen until several years after infection. However, with recent improvements in anti-HIV medications, many doctors now believe in starting treatment as soon after infection as possible. To keep mention of HIV out of your medical records, take the following steps:
At some point you will need treatment and your doctor will keep records of your condition and treatment. The following precautions will minimize unnecessary disclosures of those records:
PREVENTING FINANCIAL PROBLEMS: 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 a financial planner or an attorney.) If you have no insurance or if the insurance you have will be insufficient to meet your needs, you should try to obtain additional 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 even require that you submit to an HIV test before they will issue you a policy, especially if you appear to be a member of a "high risk" group, such as a male who has sex with males, IV drug users or commercial sex workers. Despite this, you may be able to get valid insurance under the following circumstances:
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 application. 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 may be rescinded at any time if, in addition to proving a material error, the insurer can prove that you deliberately misled it in your application. The time limits for rescission may be shorter under the terms of your particular policy than those allowed by law. 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. 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 existing coverage to be eliminated or reduced. Whether a particular change is legal depends on a complex mix of state and federal regulations, the language of your policy, whether your employer is self-insured, and even the motivation of the insurer or employer in changing the plan. You should immediately consult an attorney if your employer or insurer tries to reduce or eliminate your 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 should reconsider the change. 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 twenty or more employees, you are allowed to continue as a member of an employee group health plan for up to eighteen 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 for a total of twenty-nine months. (At the end of twenty-nine 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 twelve 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 eighteen 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 sixty 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. Health insurance coverage, whether through COBRA or a converted or private policy, can be difficult to afford, especially if you are no longer working. Therefore, you may want to start setting aside some savings specifically for this purpose. Also note that the Health Insurance Continuation Program, run by the Louisiana HIV Program Office, will pay up to $500 per month of the private health insurance premiums and $50 per month of the dental insurance premiums of people disabled by AIDS. To qualify for this program, your household income must be below 165% of the federal poverty level. This is currently about $12,500 for a single person household. 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:
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:
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.
MAINTAINING CONTROL & PROTECTING FAMILY
RELATIONSHIPS: The Need for Estate and Custody 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 long-time 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. 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 anytime.
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 power-of-attorney should make it unnecessary for a court to appoint a curator, nominating a curator will help assure that a person of your choosing will be in charge of your affairs if you become incompetent. 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 is titled in your name OR your partners, each person may transact business without the other being present Your bank can provide the appropriate form to sign. 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 your medical care in the event you later become incapacitated. Louisiana recognizes two types of Advance Medical Directives: Medical Powers-of-Attorney and Living Wills. 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:
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 if you believe he or she is unfit to raise the children, you need to take steps to give legal authority over your children to someone who is both willing and able to care for them. 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 guardian based on what it believes to be best for the children. However, the wishes of the parents are always treated with respect and almost always followed. If you die without designating a guardian for your children, a non-relative will have a very difficult time being appointed as guardian, even if that person has had a close and loving relationship with those children. 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 best interest of the children. You can do this either through an Adoption or a Voluntary Transfer of Custody. In an adoption, you surrender all rights to the children and the other person becomes the permanent, legal parent. A voluntary transfer of custody allows for more flexible arrangements under which you may retain some rights over the children during your lifetime. 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. Hand-written 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. Anyone facing a serious illness should under-take 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. 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. 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, 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. |
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