Chapter 18.
Legal and Financial Issues
Robert Greenwald, JD, and Nima Eshghi, JD


Twenty years of living with AIDS has underscored the importance of careful planning on a number of fronts. One lesson learned is the necessity of addressing legal and financial matters as early and comprehensively as possible. This is crucial to maximizing the ability of people living with HIV to access financial and health care resources, maintain control over their lives, and protect their loved ones. At the advent of the AIDS crisis, too many people died without the benefit of planning around legal and financial issues. Two decades of battling a disease concentrated disproportionately within marginalized communities has made clear the importance of using all the legal and financial tools available, and fighting to expand the available legal and financial options whenever necessary, so that people living with HIV can enjoy the autonomy and sense of security to which they are entitled. The goal of this chapter is to provide information about the legal and financial planning tools available to people with advanced terminal HIV disease, although it is important to note that these tools are equally relevant for those individuals in the earlier stages of HIV/AIDS.

Fortunately, today there are many legal and financial planning options that provide people living with HIV in the United States with the power to make critical decisions involving their health care, finances, dependent children, and end of life options. Expanded access to Medicaid and other government-funded programs provides health care access to people living with HIV without requiring an AIDS diagnosis. Newly created government and private insurance programs give many people living with HIV access to much-needed financial support. Recently enacted standby guardianship laws in several States make it possible for a parent to appoint a caretaker for her children during periods of incapacity without forcing her to surrender her own parental rights prematurely. Court cases in many States have legitimized living wills, allowing for the termination of artificial life support when an individual has clearly expressed such a preference. Carefully drafted and properly executed wills provide people living with HIV with the opportunity to direct the disposition of their assets and personal belongings upon death.

For people living with HIV, estate and financial planning is central to maximizing control over personal decisionmaking and financial resources. Delaying important legal decisions too often results in the wishes of the person living with HIV being thwarted. For example, if it is believed that a standby or temporary guardian may be needed to care for children, delay in completing the legal process necessary to appoint one could eventually result in the court appointing a guardian other than the one the parent intended. Even worse, children could be placed in State custody. Similarly, when a person living with HIV fails to execute a health care proxy naming her best friend as her agent, it is likely that her health care providers will turn to her nearest biological relatives to make important medical decisions on her behalf. When a person living with HIV leaves employment and fails to exercise her rights to continued group health insurance (under the Consolidated Omnibus Budget Reconciliation Act of 1986, or COBRA), access to the most cost-effective and comprehensive health care coverage may be lost. Finally, if a person living with HIV lets a disability insurance policy lapse because of her inability to pay the premium, when in fact the policy contained a premium waiver for disabled people, unnecessary financial hardships may ensue.

All of the programs and legal options described in this chapter can enhance the sense of wellbeing of a person living with HIV. Knowing that all potential avenues of support have been utilized and that plans are in place in the event of incapacity or death is a part of the larger effort to ensure that persons with HIV live with respect and dignity.


Federal and State governments and the private insurance industry offer a broad range of programs designed to ensure that disabled individuals, including those living with HIV, have access to financial resources and health care and treatment programs. These programs provide support to people living with HIV, particularly those who find themselves without the ability to afford basic necessities, such as food, shelter, and clothing, let alone meet the high costs associated with the care and treatment of a debilitating illness such as HIV.

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1. Federal Social Security Programs

The Federal Social Security Administration (SSA) provides two types of income support programs for disabled individuals: Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). Both programs provide financial support on a monthly basis to disabled individuals. Individuals living with HIV may be eligible for one of these programs or both.

In order to be eligible for either SSI or SSDI a range of rules apply. For both programs an individual must be permanently and totally disabled. The SSA defines disability as a severe medical condition (physical or mental) that prevents or is expected to prevent an individual from engaging in any substantial gainful activity for 12 or more consecutive months, or will result in death. An AIDS diagnosis will often qualify an individual as disabled. The additional eligibility rules for both programs are discussed in detail below. More information on these programs is also available through the SSA at 1 (800) 772-1213 or on the SSA web site at

Social Security Disability Insurance (SSDI or SSD)

SSDI, often shortened to SSD, is a governmental disability insurance program. In addition to the eligibility requirement that an individual must be permanently and totally disabled as defined by the SSA, successful applicants must have a lawful immigration status and have a sufficient work history. Since SSDI is a federal insurance program and not a needbased program an individual’s income or assets generally do not effect eligibility or monthly benefit payments.

The SSDI program pays a monthly benefit to disabled individuals with HIV who have made sufficient Social Security contributions through payroll deductions or self-employment tax premiums (under the Federal Insurance Contribution Act, or FICA). What qualifies as sufficient contributions depends upon an individual’s age at the time she or he became disabled.

  • Those 31 years of age or older must have paid sufficient taxes for at least 20 of the last 40 3-month periods or “quarters.”
  • Those between the ages of 24 and 30 must have paid sufficient taxes for at least half of the quarters between their 24th birthday and the time of disability.
  • Those under 24 must have paid sufficient taxes for at least six quarters during the 3 years before becoming disabled.

Once determined to be eligible, an individual with HIV is entitled to monthly SSDI payments until death or until the individual is no longer disabled. An individual’s monthly SSDI benefit can range from a couple of hundred dollars a month to over $1500 per month. Monthly SSDI benefit levels vary greatly depending upon Social Security contributions, age at the onset of disability and date of disability. A monthly benefit is also available for the dependent spouse or children of an SSDI recipient.

There is a 5-month waiting period for SSDI. Monthly disability payments begin at the start of the 6th month after the onset of disability. Upon applying for SSDI an individual may be entitled to past due benefits if the SSA determines that the individual became disabled prior to application. Past due benefits are limited to up to 12 months.

Receiving past due SSDI benefits can have an adverse impact on an individual’s SSI and Medicaid eligibility since both SSI and Medicaid are need-based programs with strict asset limits for eligibility. In such circumstances, consulting with a benefits expert or attorney is advised as steps can be taken to maximize a person’s ability to both retain assets and remain eligible for need-based programs.

After a disabled person has received SSDI for 24 months, she is automatically entitled to Medicare coverage. The total Medicare waiting period for an SSDI recipient is 29 months, given the 5-month waiting period for SSDI benefits to begin. Depending upon her financial status, an individual may also be eligible for Medicaid.

Supplemental Security Income (SSI)

SSI is a need-based program that provides monthly benefits to individuals who are disabled, blind, or over 65 years old and who have limited income and assets. As with SSDI, once determined to be eligible for SSI, an individual with HIV is entitled to monthly payments until death or until the individual is no longer disabled.

For an individual living with HIV, in addition to the requirement that she must be permanently and totally disabled as defined by the SSA, there are strict citizenship and immigration status rules, and income and asset restrictions.

In general, in order to be eligible to receive SSI payments an individual must be a U.S. citizen, a noncitizen who was receiving SSI on 8/22/96, or a lawfully present noncitizen who entered the U.S. before 8/22/96.

An individual cannot have more than $2000 in assets, excluding a home (if the individual resides there), and a car (if it is regularly used for transportation to medical appointments). If an individual is married and living with a spouse the asset limit is $3,000. The asset limit is $5,000 for a disabled child living with two parents.

Strict income limits also apply. To be eligible for SSI an individual’s monthly “countable income” must be less than her SSI benefit level. Countable income over an individual’s SSI benefit level will result in ineligibility for SSI for each month in which the income is received. Not every dollar received or earned by a disabled individual is countable income. In general, countable income includes unearned income (i.e., interest and dividends) and the value of in-kind gifts and services, minus a $20 set-aside. It also includes earned income, minus the $20 set-aside, minus the first $65 in earned income and one-half of the remainder. The calculations are a bit complicated, so here are a few examples:

  • John is a disabled individual eligible to receive $530 per month in SSI benefits. John receives $25 each month as a gift from his sister and earns $25 in interest from a small investment account he has. John will receive $500 per month in SSI. ($50 in-kind income - $20 set aside = $30 deducted from his original $530 SSI award = $500.)
  • Jane is a disabled single individual eligible to receive $530 per month in SSI benefits. She has started a small home business and earns $245 per month. Jane will receive $450 in SSI. ($245 in earned income - $20 set-aside - $65 earned income exclusion = $160. One-half of the $160 =$80 of countable income. The original SSI award of $530 – $80 of countable earned income = $450.)

A base SSI monthly benefit amount is set by the SSA, and State governments have the option to increase that amount through a State supplement. Nineteen States provide State supplementary SSI payments increasing the total SSI benefit received. Total SSI benefits therefore vary from State to State. Benefit levels also depend upon one’s living arrangements. For example, an individual who lives in someone else’s household will receive SSI at a lower level than an individual who lives alone. SSI will readjust the level of payment if an individual’s living arrangements change. The Federal SSA monthly benefit for SSI is $530 for a single individual, and $398 for a member of a couple, who does not live in another person’s household.

Only the disabled person may receive SSI. There are no benefits available for spouses or dependent children of a disabled person, unless they are also disabled. The disability of one or more parents may, however, entitle the remaining family members to some other form of government assistance. (See discussion of TANF below.) It is very important that individuals apply for SSI as soon as possible since there are no retroactive SSI benefits.

In many States, recipients of SSI are automatically eligible for Medicaid. In other States, an SSI recipient must independently apply for Medicaid. In those States, Medicaid applications are generally successful as most States use the same criteria for determining Medicaid eligibility as the SSA uses for SSI eligibility.

2. Temporary Assistance to Needy Families (TANF)

TANF is an income assistance program funded and regulated by both the Federal and State governments. The program provides cash and automatic medical assistance to poor families so they can provide basic necessities for their children. Because TANF is administered by State welfare departments, eligibility, calculation of benefits, work requirements, and exemptions vary from State to State.

Generally, TANF provides assistance to eligible families consisting of a single parent and one or more minor children. Most States also provide assistance to families with two parents (where one parent is disabled or unemployed, or income is below a given level), families where a child lives with a relative who is not a parent, and pregnant women. Nearly all States will allow some children, exclusive of any parent or guardian, to qualify for assistance.

Families are eligible for cash assistance if their income is below the established standard. Most States also take assets, excluding the family home, into consideration. In some States, receipt of SSI benefits may affect eligibility. The maximum benefit amount varies according to family size, and is calculated according to State-determined guidelines.

One of TANF’s key provisions is the time limit. Eligible families are permanently barred from the program after receiving assistance for 5 years. However, many States make exceptions for child-only cases, and families where a parent or guardian is disabled. The TANF standard of disability varies from State to State, although in many States it is an easier standard to meet than the SSI disability standard in that it only requires incapacity reducing or eliminating a parent’s ability to work for at least 30 days.

TANF was created in 1996, to replace Aid to Families with Dependent Children (AFDC), under the Personal Responsibility and Work Opportunities Act of 1996 (often referred to as welfare reform). Families eligible for TANF may also be eligible for Food Stamps, Women, Infants and Children (WIC), School Breakfast and Lunch, Fuel Assistance and other programs available to low-income persons.

3. Other State-Run Income Support Programs

Many States provide need-based income support programs to individuals who for a variety of reasons are ineligible for SSI or TANF. These programs are wholly funded by States and therefore eligibility rules and program benefits vary from State to State. Several States operate programs that provide income support to individuals, including those living with HIV, who do not meet the SSI or TANF disability requirements. In some States, citizenship or immigration status requirements are more flexible. In general, information on the programs that exist in your State is available through the State welfare office and/or community-based AIDS organizations.

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4. Private Disability Insurance

Private disability insurance is designed to replace income lost as a result of a health condition that prevents an individual from working. The insurance coverage is generally either short- term (up to 2 years) or long-term (up to age 65 or for life). For those who have a private disability insurance policy, upon disability, the policy will generally pay a monthly income benefit equal to a percentage of an individual’s predisability earnings or to a maximum dollar amount.

Coverage terms vary greatly as private disability insurance companies have tremendous flexibility in setting the parameters of coverage. Policies include varying definitions of disability. Some policies consider a person disabled if she is unable to perform the main duties of her present job, others consider a person disabled only if she is unable to do any job. Policies include varying qualification periods. Some policies require that an individual be disabled for 30 days before receiving benefits, others preclude coverage for the first year of disability. Some policies include disability premium waivers that waive the payment of premiums after a person has been disabled and receiving benefits for a specific period of time. (It is extremely important to determine whether such a provision exists. Many individuals let their policies lapse and lose coverage because they could not afford the payments when in fact premiums could have been waived with coverage remaining in place.) To determine the exact terms and conditions of a specific policy it is often necessary to obtain a copy of the policy and have it reviewed by an attorney.

Disability insurance policies are generally obtained three ways: employer programs, group programs, and individual programs. Employer programs are the most common. They are disability insurance policies provided through an individual’s employment. These policies vary from employer to employer and not all employers have disability coverage for their employees. Even if a disabled individual is no longer employed, it is important to investigate whether or not she was part of an employer program. Often, individuals have coverage, leave their job because of disability, and never realize that they are entitled to monthly income from a disability insurance policy. If an individual has left her employment as a result of disability she may still be covered under the group plan if she was qualified for the coverage at the time she was an employee. Coverage will in part depend upon whether or not the policy contains a requirement that an application take place within a specified timeframe after the onset of disability.

Group programs are disability insurance policies provided through various professional, industry, fraternal, and other affiliation groups. Individual policies are purchased directly by an individual. In most cases, an individual will know if she purchased a group or individual policy as an individual tends to pay her own premiums and receives statements under these plans.

5. Life Insurance: Accelerated Benefits and Viatication

While life insurance polices are generally designed to provide income support to the survivors of a deceased life insurance policy holder, they can also provide much-needed income support to a person living with HIV. Many life insurance policies include an accelerated benefits provision that allows a terminally ill person with HIV to obtain a portion of the life insurance proceeds that would normally be reserved for the surviving beneficiaries. The remaining proceeds go to the surviving beneficiaries upon the terminally ill person’s death. In general, in accelerated benefits provisions, the definition of terminally ill is defined strictly as a life expectancy of 1 year or less.

In addition, private viatical settlement companies are often willing to purchase the life insurance of a person living with HIV and pay a percentage of the value of the policy. The standard of what constitutes terminal illness is more flexible in viatication, but it is important to note that if a person’s life expectancy is greater than 2 years the proceeds received will be taxable for Federal tax purposes. With viatication, the policyholder sells the policy to the viatical settlement company and upon the policyholder’s death all of the life insurance proceeds are distributed to the company. An individual considering either an accelerated benefit or viatication should consult with an attorney or benefits expert. The viatical settlement industry, in particular, is largely unregulated and the transaction requires oversight to ensure that a person living with HIV receives satisfactory terms of sale.

1. Medicare

Medicare is government health insurance covering people over 65, the blind, and the disabled. Since it is a Federally administered program, Medicare rules are consistent throughout the country.

Medicare coverage consists of two parts: Part A (which is free) covers limited hospital care, skilled nursing care, and hospice care; and Part B (which is optional and requires a monthly premium) covers doctor’s services, outpatient hospital services, and other medical services. If an individual elects Part B coverage a monthly premium is deducted from the SSDI payment, although some States have a program for people living with HIV that covers the cost. Presently, neither Part A nor Part B covers outpatient pharmaceutical drugs.

Some individuals who are covered by Medicare buy private insurance, called “Medigap policies,” to cover medical costs not covered by Medicare. Medigap policies vary greatly, but many cover the costs of Medicare deductibles and/or health services and pharmaceuticals not covered by Medicare. Several States have a program that will pay for the purchasing of a Medigap policy for a person living with HIV.

Medicare Hospice Benefit

The Medicare program also offers a hospice benefit for those who have a terminal illness with a life expectancy of 6 months or less. The hospice benefit provides a range of valuable services, all of which concentrate on improving an individual’s quality of life as much as possible during the end stages of a terminal illness. The Medicare hospice benefit covers four categories of care: 1) routine home care, 2) continuous home-based nursing care, 3) respite care, and 4) general inpatient palliative care related to terminal illness. The hospice benefit includes services provided by a broad range of caregivers, including physicians, nurses, therapists, home health aides, clergy, social workers, and counselors. It also covers the purchase or rental of any durable medical equipment necessary to care for the individual in the home. In addition, the program covers the costs of services not typically covered by Medicare such as outpatient drugs, respite care, custodial care, and continuous nursing care in the home during medical emergencies. The Medicare hospice benefit generally covers all these programs and services in full. The amount of care received depends on the needs of the individual and the resources of the hospice–Medicare sets no maximum or minimum limits on the amount of care provided. There may be small copayments for respite care or prescription drugs. The Medicare hospice benefit does not cover curative treatment of terminal conditions for individuals who have elected hospice care. The program does, however, pay for curative treatment for unrelated conditions, such as injuries resulting from an accident or a fall.

In order to qualify for the Medicare hospice benefit, individuals must satisfy three basic program requirements. They must 1) have Medicare Part A, 2) be certified by their attending physician and the medical director of a Medicare-certified hospice to have an advanced, terminal illness with a life expectancy of 6 months or less if the disease runs its normal course, and 3) consent in writing to choosing palliative care rather than curative care. Despite these requirements, it is important to note that patients DO NOT NEED to be in a severely deteriorated physical condition or in an irreversible medical crisis in order to choose hospice. Choosing hospice earlier in the process, as long as the above requirements are met, often results in greater comfort and satisfaction for individuals suffering from a chronic, terminal condition. Moreover, a patient’s decision to pursue hospice care rather than curative care is not final. Any individual who has chosen hospice may return to curative treatment under the traditional Medicare program at any time by withdrawing from the hospice program.

Hospice care is divided into the following benefit periods: two 90-day benefit periods and an unlimited number of 60-day periods. These benefit periods may be used continuously or at separate intervals. Regardless of how an individual’s periods of hospice care are timed, she must be certified as terminally ill with a life expectancy of 6 months or less at the beginning of each period by the medical director of the hospice. If an individual chooses to withdraw from hospice during a benefit period, then any remaining days in that benefit period are lost. For example, a patient who opts out of hospice care in the middle of the second 90-day benefit period loses the remaining days in that period, but is still eligible for an unlimited number of 60-day periods. If an individual has chosen hospice and her prognosis changes during the course of hospice enrollment, the hospice may discharge her or not recertify her for a subsequent benefit period.

Medicare-certified hospices may be located by contacting the State Health Department, the discharge planning office of a hospital, or the National Medicare Hotline at 1-800-MEDICARE. Information about hospice care is also available from the Hospice Association of America at (202) 546-4759 or the National Hospice Organization at 1-800-658-8898.

2. Medicaid

Medicaid is government health insurance funded jointly by the Federal and State governments and administered by State government. Under State administration, States have many options regarding who is covered by the program and what services are provided. Medicaid rules vary greatly from State to State.

All States must provide the following Federally mandated Medicaid services: inpatient hospital services, outpatient hospital services, laboratory and x-ray services, skilled nursing facility services, physician’s services, early and periodic screening, diagnosis and testing services, and family planning services and supplies.

Federally optional Medicaid services include the following: prescribed drugs; hospice services; home health care services; nursing home services and intermediate care facility services; durable medical goods; private day nursing services; clinical services; podiatry; dental services; physical, occupational and speech therapy; optometrists; and hearing aids.

In general, Medicaid’s resource or asset limitations are similar to the SSI limitations. To be eligible for Medicaid an individual cannot have more than $2000 in assets, excluding a home (if the individual resides there), a car (valued at $4,500 or higher if it is regularly used for transportation to medical appointments), and a few other exceptions. (Under some circumstances there are strict ineligibility rules regarding the transferring of assets in an attempt to secure Medicaid eligibility. A transfer of assets to meet Medicaid’s resource rules could result in a prolonged period of ineligibility and thus should never be attempted without seeking professional guidance.)

There is no income limitation for Medicaid eligibility. However, if an individual’s countable income exceeds the SSI level, most States will consider this surplus income and not pay for an equivalent value of medical expenses.

Historically, the path to Medicaid eligibility for disabled individuals was closely tied to SSI eligibility. More recently, States, with the cooperation of the Federal Centers for Medicare and Medicaid Services, have implemented health care access expansions and waivers. In several States, pre-disabled persons with HIV are now eligible for Medicaid. In others, income and asset restrictions have been eased, allowing those with greater resources access to Medicaid.

Since the rules regarding access to Medicaid and the range of services provided vary greatly from State to State it is important to contact the State Medicaid office to determine the parameters of the program in your State and to obtain assistance with the application process.

3.Private Health Insurance

Many individuals have private health insurance policies that provide a range of health care benefits. In most cases, individuals have obtained private group health insurance through their jobs or are covered because a family member has group insurance coverage from work. In some instances, individuals have purchased their own individual policies. In either case, the types of polices offered can differ widely in terms of cost and coverage. Private insurance companies offer a broad range of plans so the particular terms will depend upon the plan selected.

Many health insurance policies include benefits limits, including specific limits on coverage or a maximum benefit for the policy as a whole. Others include copayments, deductibles or other “out-of-pocket” expenses that an individual is responsible for paying. Some allow individuals to choose any doctor, whereas others restrict access to health care professionals under contract with the plan.

Understanding the specific health insurance terms under any individual policy is difficult. Often questions can be answered by customer service staff provided by the insurance company or through the human resources department of an employer who provides group health insurance. An in-depth analysis of the terms of a policy often requires obtaining a copy of the policy for review by an attorney or benefits expert.

Finally, many States operate programs that pay the private health insurance premiums for people living with HIV. It is, therefore, always important to see if such a “buy-in” program exists before an individual decides to terminate her private health insurance. The specific eligibility rules vary from State to State, but some cover individuals receiving and/or eligible for SSI, SSDI, private disability insurance, Medicaid, and Medicare. For many people living with HIV buy-in programs represent an opportunity to maintain their preferred choice of health care access and support.

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4. The Consolidated Budget Reconciliation Act of 1985 (COBRA)

COBRA is a Federal law that requires employers who sponsor a group health plan to allow their employees and/or their dependents to remain covered under the group plan after they leave employment or are no longer qualified for coverage under the plan’s rules. In general, continued coverage is available to employees who were covered under the plan and reduce their work hours, leave their employment, or are terminated for reasons other than gross misconduct. This continuation of coverage is also available to the spouse and/or dependent children of the employee if they were covered under the plan. This coverage is very important because access to group health insurance is generally cost-effective and provides a broader range of benefits than those typically found in individual policies.

For many disabled individuals leaving employment, COBRA offers the most cost-effective and comprehensive health insurance available. This is true despite the fact that individuals are generally required to pay the premiums or costs of this private group health insurance. (As discussed above, in the private insurance section, many States have programs that will cover these costs.)

In the context of HIV, whether paid for through a government program or by an individual, COBRA offers much-needed insurance coverage to those ineligible for the need-based Medicaid program. For those eligible for Medicare through SSDI, COBRA can provide coverage during the 29-month Medicare waiting period. (See SSDI discussion on page 366 for an explanation of the waiting period.)

In general, under Federal law, COBRA applies to employers who offer a group health care plan and employ 20 or more employees. Generally exempt are churches, small employers who employ less than 20 people, and the Federal government. COBRA does not apply to life insurance or disability insurance plans. Several States, however, have COBRA laws that cover employees with less than 20 employees, so it is important to check if your State has such a law.

COBRA coverage must be elected by the later of 60 days after leaving employment or within 60 days of receiving notice of COBRA rights by the employer. Employers are legally required to provide written notice of COBRA rights within 45 days after a person loses coverage.

The length of COBRA coverage depends upon several factors. In general, COBRA coverage lasts for 18 months. For those determined to be disabled by the Social Security Administration for SSI or SSDI purposes, at any time within the initial 18-month period, COBRA is extended to 29 months. In general, COBRA coverage is 36 months in the event of the death of a covered employee, for the loss of dependent child status under the plan, for divorce or legal separation of the covered employee, or when the covered employee becomes eligible for Medicare.

5. State-Run Health Care and Treatment Programs

Many States support health care programs for individuals living with HIV who have no other means of accessing treatment. Through a combination of Federal and State funding, including the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, many States operate programs that provide early intervention health care and access to medications. These programs are administered by States and, therefore, the services provided vary greatly. Information on the programs in your State is available through the State health department and/or communitybased AIDS organizations.


Several important legal tools are available to people living with HIV who are concerned with maintaining control over important personal, financial, and health-related decisions. Health care proxies, living wills (also known as directives to physicians), powers of attorney and declarations as to remains all provide an individual living with HIV with the opportunity to clearly express her wishes with respect to crucial personal matters. They also allow a person living with HIV to appoint a trusted friend or family member to carry out those wishes on her behalf. A critical point regarding each of these legal options is that none of them acts to replace the individual’s own judgment or curtails her decisionmaking capacity so long as she remains competent and able to act on her own behalf. All of the documents are easily amendable and revocable, so a person can change her mind about any decisions at any time. Generally, to revoke the document any person previously appointed should be notified in writing of the change and the original document should be destroyed.

1. Health Care Proxy

A health care proxy is a written instrument in which an individual legally delegates authority to another person (referred to as “the agent”) to make certain health-related decisions on her behalf. This can include conventional medical treatment decisions, decisions to change providers or to pursue a second opinion, and decisions regarding levels of pain-relieving medications and other palliative care. The agent can also make decisions regarding the priority and extent of visitation by friends and family members during periods of hospitalization.

It is important to note that the health care proxy document only permits the agent to make these decisions when the individual who appointed her is either unable to make, or unable to communicate, those decisions herself. Indeed, a good health care proxy should contain a provision directing that physicians and other health care providers make every attempt to communicate with and solicit a response from the patient first, before relying on the agent to act on the patient’s behalf. Of course, the patient may also choose to direct her health care providers to consult with or defer to the health care agent even during times when the patient is able to communicate but finds it difficult or stressful to do so. What is critical in such a situation is that the choice to include the agent remains firmly with the patient, so long as she remains legally competent and able to communicate.

In the absence of a properly executed health care proxy, decisionmaking authority regarding health-related matters generally defaults to a person’s “next of kin,” often the spouse or the closest adult biological family member that can be found. The advantage of the health care proxy is that it vests control in a trusted individual specifically chosen by the patient, thus increasing the likelihood that the patient’s wishes regarding health-related matters will be honored. A person living with HIV is free to choose any competent adult to serve as her health care proxy. One can also name two co-agents in the health care proxy, who can share the responsibility for decisionmaking. A person naming two agents is advised to evaluate the ability of the two agents to work together and to consider naming one whose decision would control in the event of a disagreement. It is not advisable for a person to appoint his or her health care provider as a health care proxy. The primary purpose of the appointment is to choose someone with a strong personal relationship to the person living with HIV, who can work with the provider to make difficult health care decisions.

An additional advantage of a health care proxy is that it can be specifically tailored to express a person’s preferences, beliefs, and instructions regarding health-related matters. This has the benefit of giving a person living with HIV an opportunity to clearly communicate her wishes to the health care agent before a health-related crisis occurs. Such communication between the patient living with HIV and her health care proxy is crucial, because the health care proxy’s job is to make health care decisions that accurately reflect the preferences and wishes of the patient, and not the proxy’s own preferences.

In most States, the health care proxy is authorized by statute and that statute will specify the mechanical requirements that must be met in order for the document to be legally valid. Typical requirements include the number of witnesses that must be present for the signing of the document, the minimum age of the appointed agent, and the signature of the individual making the appointment in one or more places on the document itself. It is recommended that the health care proxy document be notarized, regardless of whether notarization is a formal requirement under a particular State’s health care proxy law. Notarization lends an additional level of legitimacy to a document that may protect against future challenges from family members or health care providers.

2. Living Will (Directive to Physicians)

A living will (also known as a “directive to physicians” or “advanced directive”) is a legal document authorizing the removal of artificial life-support systems for an individual who has been diagnosed with brain death or whose condition has been deemed terminal and irreversible. The living will is directed to an individual’s physician, and constitutes written evidence of the individual’s intent not to be kept alive by artificial means. A living will may also specify that a patient elects to forego other life prolonging treatments, such as artificial hydration and nutrition via IV, antibiotics, and in, some cases, blood transfusions. Exceptional care should be taken when explaining these options and their effects to a terminally ill patient, so that the living will precisely represents the patient’s intent with respect to these life-prolonging treatment options.

People living with HIV who are opposed to being placed on prolonged life support despite the occurrence of brain death or a terminal diagnosis are advised to execute a living will that clearly communicates their opposition. In the absence of a living will evidencing a clear intent, physicians can find themselves both ethically and legally bound to do everything they can to keep a person alive – even if the person is clinically brain dead and being kept alive solely through technological life support measures. By the same token, many physicians, particularly those experienced in working with people with HIV, are familiar with and generally respectful of the intent expressed by those who choose to execute living wills. It is a good idea for an individual’s treating physician to be aware of the existence of a living will when one has been prepared.

Bear in mind that some hospitals with particular religious affiliations may be reluctant to honor a patient’s expressed wishes even if a living will has been prepared and presented to the medical staff. In some cases, particularly where there is no law or statute authorizing the creation of a living will, the religious institution that participates in setting hospital policy directs medical staff not to recognize living wills. Thus, people living with HIV who are strongly opposed to being placed on prolonged life support should consider where they receive their care, and whether the religious affiliation of their provider is likely to affect that provider’s willingness or ability to honor the living will.

Laws in this sensitive area vary widely from State to State, and, in many States, there is no statutory authority for living wills. There have been, however, many important legal cases involving a person’s right to be taken off artificial life support and those cases have generally favored honoring a person’s desire to terminate life support when it can be proven that the desire was clearly expressed in advance. Still, it is advisable to work with someone familiar with the law in your particular state when preparing and executing a living will.

State-specific forms for living wills and for health care proxy (assigning power of attorney for health care) can be downloaded free from the web site of Partnership for Caring. Contact Partnership for Caring on the web at or by phone at 1-800-989-9455. Five Wishes is a document that helps patients express how they want to be treated if they are seriously ill and unable to speak for themselves. Five Wishes can be ordered for $5.00 from Aging With Dignity, P.O. Box 1661, Tallahassee, FL 32302-166, or 1-888-594-7437.

3. Durable Power of Attorney

A person living with HIV may appoint someone else to manage her finances and to make economic decisions on her behalf by executing a durable power of attorney. As with the health care proxy, the person appointed in the power of attorney document is referred to as the “agent.” The person making the appointment is referred to as the “principal.” The power of attorney document can grant broad authority to the agent, allowing the agent to have broad access to and control over the principal’s financial and legal matters. Or, the authority granted can be limited and specific, such as allowing the agent to sell the principal’s home and use the proceeds for a particular purpose designated by the principal. A power of attorney that is broadly given may be more useful for someone who anticipates a long period of hospitalization or incapacity and who needs an agent who can access bank accounts, pay bills, pick up checks and mail, and handle other daily financial matters as they arise. In either case, the agent has a legal responsibility, known as “the fiduciary duty,” not to abuse the assets of the principal for her own personal benefit.

As with the health care proxy, the absence of a properly executed power of attorney can greatly interfere with the ability of a person living with HIV to make her own choice about who she trusts to handle her financial and legal matters. It should be noted, though, that where a person is incapacitated, a court may appoint a guardian or conservator for that person (typically acting on a petition filed by a family member) who is different from and whose authority takes priority over the power of attorney. Still, in many cases, the durable power of attorney manages the economic affairs of the principal through periods of incapacity or absence without incident.

The authority granted to the agent by the power of attorney document does not survive the principal’s death. The authority under the power of attorney dies with the principal, and, assuming the principal has a valid will, power transfers to the executor (also known in some states as the “personal representative”), who then assumes responsibility (with judicial oversight) for dealing with financial matters, paying debts, and distributing assets in accordance with the will’s provisions.

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4. Declaration as to Remains

The declaration as to remains is a document that, in essence, allows a person living with HIV to plan her own funeral and decide what will happen with her body upon death. By clearly expressing choices and preferences regarding burial, cremation, funeral services, memorial services, and other arrangements, a person living with HIV can ensure that her wishes are carried out and can also avoid potential controversies between biological family members and life partners or close friends. Because it is a less familiar document to most people, as compared with a will or a health care proxy, it is a good idea for a person who executes a declaration as to remains to make the existence of the document known to the person or persons who are designated to carry out the wishes and plans specified within it.

Unfortunately, in some States, there is no statutory authority or law authorizing the creation of a declaration as to remains and, in others, the law states that a person’s remains automatically become the possession of the person’s “next of kin,” a legally defined relationship that does not include one’s life partner (except in the State of Vermont) or close friends. This means that even with a carefully thought out and well-executed declaration as to remains, an individual may not be able to completely insure that her dying wishes regarding funeral and burial or cremation are honored. It is still advisable, however, to execute a declaration as to remains because 1) several courts have found that a competent adult has the legal right to plan her own funeral and decide what will happen with her body upon death despite the existence of contrary laws; 2) it provides clear direction to loved ones regarding an individual’s funeral and burial wishes; and 3) if a controversy does emerge, either between “next of kin” and life partners or close friends, or within biological families as is also often the case, the presence of the declaration as to remains may be persuasive in resolving the dispute.


Comprehensive estate planning is the only way to insure that the financial assets, real property, and personal belongings of a person living with HIV are distributed in accordance with her wishes. The advantage of estate planning is that, using conventional tools such as wills, trusts, bank accounts, and life insurance policies, an individual living with HIV is free to distribute assets to anyone she chooses,* and thus she can protect and provide for loved ones even where there is no biological or marital relationship. Without an estate plan in place, the assets of a deceased individual are distributed in strict accordance with State intestacy laws – laws that specify who inherits, and in what order, and which do so in a manner that recognizes only spouses and biological relatives as proper heirs.

* There are a limited number of exceptions to the general rule that a person may distribute assets to anyone she chooses. In many states, a person may not use her will to disinherit a spouse. The specific laws vary from state to state, but the general remedy granted in these cases is the “elective share.” Elective share statutes provide that a specific portion of the decedent’s estate be made available to the disinherited spouse. In addition, several states have statutes that protect children when it appears that they were unintentionally disinherited. Finally, some states have statutes that limit a person’s ability to leave her estate to charity if she is survived by a spouse, parent, or children. Nonetheless, the presence of these statutes does not bar an individual from leaving money, property, or other personal belongings to other loved ones, such as a friend or life partner. These laws simply limit the amount available to others by virtue of providing a mandatory share of the estate to spouses, parents, and minor children.

Despite the obvious advantage of estate planning, it is often difficult to convince a person living with HIV of the need to make a will or of the importance of financial and benefits planning that would ultimately provide for a smoother transfer of assets. There are many barriers to such planning, including the natural resistance to thinking about one’s death and the very common myth that estate planning is only necessary for people who are wealthy or who have significant assets available to distribute to loved ones. A person of limited means may convince herself that an estate plan is unnecessary because she does not have anything that her loved ones would want or value. In reality, however, this is almost never the case. Irrespective of financial assets, most people living with HIV will have personal belongings that carry important meaning for those who are left behind. Over the years, there have been far too many stories of battles within families, or between family members and life partners or friends, over items of deep sentimental value such as diaries and other personal writings, photographs, books and jewelry. A will that specifically designates who is to receive such items, or, a plan that includes giving some of these items away during one’s lifetime, can guard against future heartache and strife.

Thus, it is important for palliative care providers to emphasize the many advantages of estate planning and to support patients through the often painful process of thinking about how best to distribute assets and personal belongings. What follows are the areas that should be covered in nearly every estate plan. Because laws vary from State to State, it is critical to locate an attorney familiar with estate planning to assist with the drafting of wills and other estate planning documents.

1. Probate versus nonprobate assets

When a person dies, some of the property they leave behind will be “probate” and some will be “nonprobate.” “Probate” is the legal term for the process whereby property that passes through a will is accounted for, gathered, and then distributed to the persons named in the will. If there was no valid will the probate assets will be distributed under the intestacy laws to the heirs specified under the State laws where the person living with HIV was domiciled. “Nonprobate” assets are those assets that pass automatically to a chosen beneficiary upon death. Examples of nonprobate assets include life insurance policies with named beneficiaries, joint and “in trust for” bank accounts, and trusts created outside of a will.

There are many advantages to nonprobate assets. Because they pass outside of the will and are not subject to the probate process, loved ones do not have to endure a long wait before they can access the assets that have been left to them. In addition, the distribution of nonprobate assets is much more difficult to challenge than the terms of a will. Whereas wills are filed with probate courts and subject to challenge and scrutiny, nonprobate assets pass to the intended beneficiaries quickly and quietly, without the need for a public accounting. Also, assets included in the probate of an estate can become subject to the claims of creditors. Creditors have 1 year to bring claims of debt to the attention of the court where the estate has been probated. Thus, it is clearly advisable for persons living with AIDS to examine their assets and determine which assets can and should be moved into the “nonprobate” category.

Bank Accounts

Bank accounts are an excellent example of the type of asset that can easily be moved into the nonprobate category. If a person has a bank account with only her name on it, the contents of that bank account will automatically become subject to probate upon her death. There are two primary options available for turning a bank account into a nonprobate asset: a joint account, or an in trust for account. A joint account is an account that lists two account holders on the same account. Both account holders have full and equal access to the funds in the account. If one co-holder becomes incapacitated, the other has easy access to the funds. If one co-holder dies, the funds automatically become the property of the surviving account holder. Probate is avoided, and, except in very limited circumstances, creditors cannot get access to the funds to satisfy debts of the decedent. The downside of a joint account is that joint co-holders both have immediate access to the funds at all times and thus, if one co-holder wanted to, she could withdraw all the money at any time and leave nothing for the other account holder.

An in trust for account avoids the problem of two people having full access to the same funds in the present. Instead, an in trust for bank account allows a person to name a beneficiary who will receive the proceeds from the account upon her death. The beneficiary of the account is similar to the beneficiary of a life insurance or retirement policy. She has no access to the funds in the account during the principal account holder’s lifetime, but the proceeds of the account avoid probate and become immediately available to the beneficiary upon the death of the account holder.

Life Insurance and Pension Plans

Proceeds of life insurance and pension plans that pay out to a named beneficiary after a person’s death are nonprobate assets. The key here is to make sure that a beneficiary has been named. Most plans and policies will allow the policyholder to name more than one beneficiary. For example, a person living with HIV might designate her life partner and her two children as the beneficiaries of her life insurance policy. Some policies will allow the policyholder to specify the shares allotted to each beneficiary (i.e., 50% to spouse and 25% each to two children). An important part of estate planning is periodically checking to make sure that the company holding the policy has the correct information regarding intended beneficiaries. If there are no beneficiaries named, or if the beneficiary named predeceases the policyholder, the ability to control who receives the asset may be lost. Without a beneficiary named, many benefit plans will automatically distribute the proceeds to the policyholder’s next of kin, or distribute the proceeds to the policyholder’s estate to be accounted for and distributed along with the other probate assets.

Forms of Real Property Ownership

If a person living with HIV owns real property with another person, it makes sense to examine the deed to determine the form of ownership. There are two forms of real property co-ownership that avoid probate and allow the property to pass automatically to the survivor upon death of the co-owner. The first form of co-ownership is “tenancy by the entirety” and is only available to legally married couples. Property owned as a tenancy by the entirety is often the best possible option for married couples because not only does it avoid probate and allow the property to automatically pass to the surviving spouse, but it also avoids taxation upon the death of one spouse (that is, the surviving spouse is not taxed on the inheritance because she already owned the “entirety”).

For unmarried partners and other co-owners who prefer automatic passage of the property to the other co-owner upon death, the best available tool is owning property jointly “with rights of survivorship.” Under this form of ownership, the title to the property automatically passes to the survivor upon the death of the joint owner. Property that is held jointly with the right of survivorship allows the surviving owner to sell the property immediately without seeking court approval in probate after the co-owner’s death. In addition, jointly held property does not bear the risk of a challenge that accompanies the probate of a will. Thus, joint ownership with rights of survivorship is an excellent estate planning tool.

It is critically important to be aware that if two unmarried people jointly own property together and the deed does not specifically refer to rights of survivorship, a tenancy in common will be presumed. With a tenancy in common, the co-owner does not inherit the property upon the death of the other owner. This may be an appropriate form of ownership for co-owners who do not intend to have the other co-owner inherit upon their death, and who might prefer that their half of the property be distributed to other friends or family members in accordance with the terms of their will.


A trust is a flexible legal instrument into which a person living with HIV can transfer her assets (money, property, proceeds of a life insurance policy) during her lifetime or upon death. Once the trust is created and “filled” with the designated assets, the assets no longer belong to the individual who created the trust. Instead, the assets “belong” to the trust. The person with control over the distribution of the assets within the trust is the trustee. The person living with HIV who created the trust may make the trust revocable, name herself as the trustee, and name herself as the sole beneficiary during her lifetime. This will give her complete control over the assets within the trust during her lifetime. This type of revocable living trust is often the best way for a person living with HIV to maintain control of her assets during her lifetime and ensure the easy transfer of the assets upon her death. As long as there is a successor trustee and a successor beneficiary or beneficiaries named in the trust, the successor trustee can transfer all of the property or assets to the named beneficiaries without any probate court proceedings after the death of the person who created the trust.

In order to be a valid legal document, the individual creating the trust must sign it and have it notarized. The document does not have to be witnessed or recorded. Most attorneys familiar with estate planning can assist a person living with HIV in creating a trust.

2. Wills

A will is a central component of any estate plan. It is a legal document that allows a person to leave any portion of her estate, and any specific possessions, to any other persons or organizations. Despite the emphasis placed on removing assets from probate, there will almost always be property held by the individual that cannot practically be held as joint property or placed in a trust. When a person dies without a valid will, all of her probate property passes in accordance with the intestacy laws of her state. Because intestacy laws universally favor biological relatives and do not recognize unmarried partners, close friends, or other people that an individual might want to inherit all or part of her estate, a valid will is crucial.

In most States, there are very few formal requirements for drafting and executing a valid will. In general, a will must sufficiently describe an individual’s possessions and who she wants to inherit them. The will must be signed and dated by the person and then by two witnesses who are not beneficiaries under the will. Despite the fact that executing a will is relatively straight forward, absent emergency situations, individuals should not attempt to execute a will without the assistance of an attorney.

3. Homesteading

Many States have homestead laws that allow homeowners to protect their primary residence from creditors. Filing a petition for homestead exemption (literally, a filing that exempts your property from access to creditors) can be an important part of estate and financial planning for people living with HIV, particularly those who are worried about high levels of consumer debt. Filing early is strongly advised, as many States only exempt debts incurred after the filing of the homestead petition. The extent of the homestead exemption varies from State to State, as do filing requirements, so it is a good idea to consult with an attorney in the State where you reside.

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4. Dealing with Debts and Creditors

Many people living with HIV need assistance dealing with creditors and deciding how best to handle accumulated debt. Often people living with HIV are worried about mounting debt levels and assume that there is no solution to protect them from financial ruin and from the incessant barrage of threatening letters and phone calls from creditors. In fact, several options exist and attorneys and/or debt counselors can provide many services to assist persons living with HIV in addressing their debt issues.

Under many State fair debt collection laws, notification of representation by an attorney bars creditors from further collection efforts aimed directly at debtors. In effect, the first step taken can often eliminate threatening letters and phone calls.

Next, an assessment of the persons debts and the potential for at least partial repayment must be evaluated. While many debts can easily be forgiven, through a discharge by creditors or through the courts, some types of debt are very difficult to discharge. Discharging outstanding student loans and Federal, State and local tax debts is quite difficult. Also, secured debts, where the creditor owns an interest in the property held by the creditor, such as car loans and home mortgages, will generally result in loss of the secured property. Credit card debts, on the other hand, are generally easily dischargeable.

With this in mind several courses of action can be taken. Many disabled individuals, particularly those who are not earning income, who have limited assets and who are dependent on needbased public benefits (i.e., SSI, TANF), are effectively “judgment proof.” Often, simply contacting creditors and informing them of this situation will result in a disability-related discharge or forgiveness of the debt. In other cases, when a person’s assets or income are too high, or when a creditor refuses to forgive the debt, personal bankruptcy may be the best option.

An attorney can assist a person living with HIV in negotiating with creditors or filing a personal bankruptcy petition. The filing fee for a personal bankruptcy petition in the bankruptcy court is $200, and ironically it is one of the filing fees that the court will not waive. In most cases, through a bankruptcy court proceeding, a bankruptcy court judge will discharge the debts of a disabled person living with HIV. Most bankruptcy judges, however, will allow the debtor to pay the filing fee in periodic installments upon request.


There may be no more sensitive issue for parents living with HIV than how to plan for the future of their minor children. No parent wants to contemplate a time when she may become unavailable to care for her children. Indeed, parents living with HIV often resist permanency planning for their children because it is overwhelming to think about someone else raising their children and also because of a lack of information about parent-friendly planning options.

In addition, some parents living with HIV may have minor children who are HIV-positive. When children also have HIV, the permanency planning must take into account the ability of the proposed guardian(s) to meet each child’s specialized medical, social, and emotional needs.

There are steps that parents with HIV can take in the present to insure that, if they die or become incapacitated, their children will be cared for by loving friends or relatives. It is strongly advised that parents work with an attorney with expertise in estate planning and family law when formalizing a permanency plan.

1. Standby Guardianship Proxy Laws

In States where it is available, the standby guardianship proxy law is an excellent planning tool for parents living with HIV. Under the standby guardianship laws, parents with HIV who have minor children in their care can legally arrange for someone to step in and care for their children during periods of incapacity, without giving up their own parental rights. To date, 16 States have enacted standby guardianship proxy laws.§ Parents living with HIV should check with an attorney in their State to see whether standby guardianship is available.

§ States that have standby guardianship proxy laws are Arkansas, California, Colorado, Connecticut, Florida, Illinois, Maryland, Massachusetts, Minnesota, Nebraska, New Jersey, North Carolina, Pennsylvania, Virginia, West Virginia and Wisconsin. Advocates are working to introduce and insure passage of standby guardianship legislation in many of the states where it is not yet available.

Standby guardianship allows a parent or legal guardian to designate an adult to care for her minor child during periods of incapacity without forcing the parent to give up custody or relinquish any of her parental rights. As such, it is a particularly useful tool for parents living with HIV who may, at times, require long hospitalizations or find themselves unable to care for their children but who anticipate recovering enough to resume parental responsibilities. The process for appointing a standby guardian typically involves filing a petition with the appropriate court (often a family or probate court) along with supporting documentation. In most States, the petition will require the signature of the parent(s) or legal guardian(s) as well as the signature of the person who is being appointed the standby guardian proxy for the child(ren). If the child is above a certain age, his assent is required. The court may also inquire into the fitness of the proposed standby guardian proxy, by examining her criminal history or looking into any prior involvement with the State agency overseeing the welfare of children. If there is another legal parent, other than the custodial parent seeking to appoint the proxy, that parent must be notified. If the other parent is fit to care for the child and objects to the appointment of the proxy, the court is unlikely to approve the standby guardianship petition. It should also be noted that, in some States, standby guardianship is only available to parents or legal guardians who are suffering from a chronic, disabling or fatal illness. In those States, the petition for standby guardianship must present evidence of the health condition that may interfere with a parent’s caretaking duties.

Once the standby guardian proxy is approved by a court, the proxy’s authority to act in a parental role begins upon the death of the parent, the consent of the parent, or the inability of the parent to care for the child as certified by a health care provider. There is no need to return to court once one of these triggering events occurs. Once effective, the proxy may act on the child’s behalf for the period of time specified in the statute. Here again, laws vary considerably from State to State. Some States allow the standby guardian proxy to act in the parental role for up to 90 days (for example, Massachusetts), while others allow for a greater period of up to 6 months (for example, New Jersey). If the parent’s incapacity to care for the child extends beyond the statutory period, or if the parent dies, the standby guardian proxy must go to court and file a petition for permanent guardianship of the child now in her care.

2. Permanent Guardianship of Minor Children

Permanent guardianship offers a parent with HIV the option of permanently placing her minor child in the care of another person. This may be a wise option for a parent who has become too incapacitated to provide regular care for her child, and who does not anticipate recovering to a point where she will be able to resume traditional parental duties. If the parent is so ill that she can no longer care for her children, or anticipates that she will soon be unable to care for them permanently, one advantage of initiating the permanent guardianship proceeding while she is still living is that she can participate in the court proceedings and let the judge know her reasons for selecting a particular person as the guardian. This level of involvement in the decisionmaking process is important in that it allows the parent living with HIV to maintain a sense of control over the future of her children. Once the permanent guardianship is established, the parent no longer has to worry about who will care for her child if she dies.

The process for appointing a permanent guardian is similar to the standby guardianship process in that they both require the filing of a petition with supporting documentation, a hearing before a judge, and notice to, or assent of, the other living parent where applicable. A court will investigate the proposed guardian’s background, including criminal history and any involvement with child welfare authorities. Some judges might scrutinize the fitness of the proposed guardian more carefully than they would in a standby guardianship proceeding because of the permanent nature of the appointment. Once the permanent guardianship is approved, the guardian’s authority to make decisions and care for the child is effective immediately and lasts until the child turns 18 years old.

Children above a certain age must also consent to the appointment, and States vary as to whether older children must appear in court and consent orally or whether a notarized signature will suffice. States also vary as to the age at which the minor’s consent is required. Fourteen years of age and above is typical, but some States require a minor’s consent beginning at age 12.

3. Transfers of Custody/Modification of Custody Orders

Modifying existing custody orders to transfer physical or legal custody to another parent is a planning tool available only to those parents whose children’s custodial status was subject to a prior determination by a court. When a married couple with children divorces, the court that approves the divorce agreement – or that hears the case in the event of a contested divorce – also enters a judgment, called an “order,” regarding custody of the children. The custody arrangement is then fixed by law and can only be changed by another subsequent court order.

There are many variations of custody arrangements. One of the more common arrangements is for two parents to have “joint” or “shared” legal custody with physical custody resting with one parent. This means that both parents have equal parental status, rights, and responsibilities in the eyes of the law, but the children live with the parent who has physical custody, also referred to as the “custodial parent.” In such an arrangement, the parent without physical custody, or the “noncustodial parent” will typically have visitation on a regular basis. In cases where the children maintain a good relationship with the noncustodial parent, and where the noncustodial parent has expressed a willingness to care for the children in his home should it become necessary, a custodial parent living with AIDS who becomes unable to care for her children might seek to modify the custody order to transfer physical custody to the other parent. Most courts will require that a motion to modify the prior custody order contain an explanation for the proposed modification. Many courts may also require a hearing on the matter, even where, as in this example, the proposed change is agreed to by both parents.

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4. Testamentary Guardians

Every parent living with AIDS should have a will that names a testamentary guardian for her children. Even if a parent living with AIDS has successfully appointed a standby guardian proxy, and that proxy has physical custody of the children at the time of the parent’s death, a will that specifies who the parent wishes to have permanent custody of her children upon death is important for a number of reasons. First and foremost, some parents may choose a testamentary guardian who is different from the standby guardian proxy. For example, a parent may select a close friend and neighbor to serve as the standby guardian proxy, so that her children may continue to attend the same schools and programs during any periods that the parent is hospitalized or incapacitated. Such an arrangement also facilitates the type of short-term “coparenting” envisioned by the standby guardianship laws, as the disabled parent is still nearby and able to communicate her parenting preferences and concerns to the standby guardian proxy. The same parent, however, may have an entirely different wish for her children’s care in the event of her death. Upon her death, she may express a desire that the children be raised by a close relative, perhaps an aunt or a grandparent, who lives farther away. Thus, it is important to make sure that her will clearly expresses this desire.

Although there is no requirement that a person disclose the contents of her will to anyone before death, it is wise to consider a frank discussion with a proposed testamentary guardian. Certainly, it is best if a person who is in line to become the permanent caretaker of one’s minor children is aware of the situation beforehand. Moreover, if the parent anticipates a challenge to her testamentary guardian from a relative, it is a good idea to prepare the testamentary guardian for the possibility of such a challenge in advance.

It is very important to note that naming someone in the will as a testamentary guardian is not dispositive of the issue. The question of who will become a child’s permanent guardian upon the death of a custodial parent must be finally determined by a probate or family court judge in the State where the child resides. The person who is named as the testamentary guardian should file a petition seeking permanent guardianship and attach the relevant provisions of the parent’s will to the petition as evidence of the parent’s intent for the child(ren). If the petitioner demonstrates an ability and willingness to care for the child, and meets the State’s requirements (typically the petitioner must be of a minimum age and not possess a criminal history that might indicate the inability to responsibly care for a minor), she will be approved by the court as the permanent guardian.

It may be the case, however, that other interested family members will petition the court seeking permanent guardianship, even though they were not named as guardians in the will. In the overwhelming majority of states, when parents are deceased, the law recognizes a child’s grandparents as the nearest living relatives or “next of kin” and will take very seriously a petition from a grandparent seeking permanent guardianship even if the petitioning grandparent was not named as the testamentary guardian by the deceased parent. For advance planning purposes, a parent living with HIV should work with an attorney to prepare affidavits clearly explaining her choice of guardian if she is concerned that her children’s grandparents, or any other close relatives that have standing, will seek guardianship despite her clearly expressed wishes to the contrary.


Palliative care providers are in a good position to discuss financial and legal planning options with people living with HIV. Presenting these options provides people with HIV with the opportunity to make careful decisions that will protect themselves and their loved ones in the event of incapacity or death.

In discussing financial and legal planning issues, it is important to bear in mind that laws vary considerably from State to State. Although many of the legal planning tools described herein are available to people residing in every U.S. State, requirements for utilizing the laws are likely to vary. Also, court cases interpreting those laws may lead to different, even conflicting, conclusions in different States. For these reasons, it is strongly recommended that people living with HIV consult with an attorney in the State where they reside if they are planning to make a will, appoint a health care proxy for themselves or a standby guardian for their children, or take any of the other legal steps suggested in this chapter. Similarly, entitlement and benefits programs are administered differently from State to State, and it is advisable to contact an agency in the State familiar with these programs.