People often come to AIDS Legal Council of Chicago, a program of the Legal Council for Health Justice, with questions about Social Security, insurance, and estate planning. Strategizing for the future can look very different for different people. I want to highlight some of the most typical concerns introduced to us by people aging with HIV. Much of the information described below (and much more) can be found in our legal guides, available in Spanish and English, legalcouncil.org/resources/legal-guides. Please keep in mind that our agency is based in Chicago and the guides contain some state-specific information.
You can discuss your short- and long-term goals and create strategies for the future by consulting a financial planner.
Planners can be expensive, however. Some higher education institutions offer free financial clinics for low-income individuals. There are also lots of new online tools to start the process on your own (such as Mint, Moneystream, and Quickbooks). AIDS community organizations often have referral relationships with financial counselors.
The AIDS Legal Council assists clients in Illinois in applying for public benefits, appealing denials, and ensuring smooth insurance transitions. Most states have Ryan White-funded legal aid services, just like ours, that can be an important part of planning for your future comfort.
The easiest way to discover what’s out there is to simply call and ask.
Can I get life insurance as a person living with HIV?
There is only one commercial life insurance company that sells policies specifically for people living with HIV, Aequalis.
Almost all insurance companies refuse to sell life insurance to people with HIV. They ask your HIV status on their application forms and if you lie and say you don’t have HIV, they won’t pay your beneficiary after your death. Another possibility is to buy one or more small “guaranteed issue” plans (one type is called “final expenses”). These policies are available to anyone, but pay nothing if you pass away within the first two years after buying the policy.
Even if you can get a life insurance policy, it is important for you to read the small print. Many policies refuse to pay death benefits if the cause of death is from a pre-existing condition. In other words, if you pass away from something you have when you get the policy, the insurance company won’t pay your beneficiary anything after you die. Check the policy carefully for a pre-existing condition clause before you buy.
Estate planning
Everyone over the age of 18 should create power of attorney for healthcare, property, and will documents. These legal documents vary state to state, but are an essential part of taking control of situations where one usually has very little control.
As we age, these documents become even more important. Who will make medical decisions about your care if you become incapacitated?
Estate planning protects your choices, your independence, and your ability to define the type of care you prefer, without putting the pressure of making those decisions on your loved ones.
What is power of attorney?
A power of attorney is a legal document that lets you name someone you trust to take care of your affairs, including health care, if you are ever unable to do so yourself. That person, called your agent, can check you into a hospital, consent to medications or surgery, take you to a nursing home, or make any of the health care decisions you normally would make. Your agent can also make your final arrangements, such as a funeral or cremation.
A power of attorney for property allows you to name an agent to help handle your financial affairs while you are unable to do so yourself. “Property” refers to anything you own—your money, your car, your household things, and so on. Your agent can sign your checks, buy and sell things for you, and pay your bills using your funds.
What is a will?
A will is a legal document that lets you do at least three important things:
1. Put someone in charge of your estate (all your possessions) after you die. This person is called your executor.
2. Decide who inherits your money and possessions after your death.
3. Nominate a guardian for your children.
What happens if you die without a will? Without a will, only a spouse, civil union partner, or biological relatives have the right to inherit. If you have a spouse but no children, your spouse inherits everything. With children, the spouse inherits half and the children divide the remainder. If you have no spouse or children, your immediate relatives divide everything.
Applying for disability
As we grow older, our health becomes more of an issue. Although being diagnosed HIV-positive no longer makes you eligible for disability on its own, many individuals feel like they cannot continue working when experiencing a mixture of illnesses.
There are two different types of Social Security benefits available for individuals disabled by HIV, AIDS, or other conditions: Social Security Disability Insurance benefits (SSDI) and Supplemental Security Income benefits (SSI).
SSDI-eligible individuals have a work history and have paid into disability insurance for at least 10 years. SSI is for disabled individuals who haven’t worked much and have very little money. You can apply for either one by going to your local Social Security office or by calling (800) 772-1213. If you don’t know which program is right for you, Social Security will help you figure it out. See the table on this page for a comparison of the two programs.
How does Social Security define being “disabled"?
Social Security has very specific rules about how disabled you have to be to be eligible for SSI or SSDI benefits. It’s not enough that you have an AIDS diagnosis or if your doctor believes that you are unable to work. Social Security uses a five-step process to evaluate your case.
First they look to see if you are working when you apply. If you are working and earning more than the Substantial Gainful Amount (SGA in 2016 is $1,130) in gross monthly income (before taxes are taken out), then Social Security will conclude that you can work, even if you’ve had to cut down your job and hours.
Then they look to see if you have a severe condition which they consider to be disabling. It’s important to note that conditions have to be at a certain level of severity to be automatically disabling.
If Social Security doesn’t find that any of your conditions meet a disability listing, they will look at all of your medical problems together to see how they affect your ability to function. This will include investigating how well you carry out your daily activities, how well you get along with others, and how well you stick to a job and get it done on time. Social Security can determine that your combined problems seriously interfere with your abilities to function. If not, they go to the next step.
Social Security will evaluate whether your medical conditions prevent you from doing work you have done before. If you can still do any job you’ve ever had, then you will not be found disabled. But if you can’t do any of your past work, Social Security will go to the next step.
At the final step, Social Security will look to see if you can do any other type of work, based on your age, education, skills, and past work experience. If you cannot maintain any job on the market, you will be found disabled.
The majority of disability claims, 90% of them, are denied, so press on through the appeal process. If Social Security denies your disability claim at the initial level, you can appeal this decision and have it reviewed. If this reconsideration is also denied, you can again appeal and request a hearing in front of a judge. Appearing before a judge is usually your best chance at obtaining disability.
It is important to note that documenting your medical condition is essential in winning disability. This involves getting regular medical care, reporting any issues or symptoms you are experiencing to your medical team, and ensuring that medical records are being sent to Social Security. If your medical records are spotty, you will have a harder fight.
Applying is also a time-consuming process. It can take two years to get to the hearing level, where having legal representation can be an important asset. In many states, Ryan White offers funds for legal services for people living with HIV. This allows HIV-positive individuals to get more help in applying for and keeping disability.
When you reach retirement age and your SSDI converts to retirement, you no longer have an earnings cap. This means that you can work and earn as much as you like, and continue receiving your Social Security retirement income. This is only true if you were getting SSDI and not SSI.
If you were receiving long-term disability benefits through past employment along with SSDI, this benefit usually stops when you turn 65. It’s very important to speak with your benefits coordinator about health insurance, long-term disability, and any other benefits you may be receiving at age 64. If you are getting Social Security disability benefits when you reach full retirement age, your disability benefits then automatically convert to retirement benefits, but the amount remains the same.
Who is eligible to receive Medicare?
People 65 and older who have paid into the Medicare system through their taxes, and their spouses, including same-sex couples, are eligible for Medicare. Additionally, persons with disabilities are eligible once they receive SSDI for 24 months. Individuals receiving disability who are diagnosed with ALS or are on dialysis are eligible for Medicare immediately.
You can enroll in Medicare at three unique times. Everyone who is eligible has an Initial Enrollment Period. This starts three months before you turn 65 and runs to three months after. If you do not sign up when you are first eligible because you have insurance through work, then you can delay enrollment until you lose comparable coverage. You must then enroll in Part B within eight months of losing your work insurance or suffer a financial penalty.
If for some reason, you do not enroll when you are first eligible then you can do so during the General Enrollment Period. This is from January 1 through March 31. You can enroll by calling Social Security and asking to sign up for Part B. This coverage will then begin July 1 and your part B premium costs may be higher if you did not sign up when first eligible. Since enrollment is confusing, we always recommend that you speak with a counselor. You can get help by calling the Senior Health Insurance Program at (800) 548-9034.
Medicare is made up of different parts. Generally, you can think of this coverage being responsible for 80% of your medical costs.
- Medicare Part A (hospital insurance) covers inpatient hospital care, skilled nursing, home care, and hospice. Generally there is no premium for this coverage if you have sufficient work credits.
- Medicare Part B (medical insurance) covers doctor’s care, outpatient services, and lab work. There is a monthly premium charged for coverage. Part B costs go up each year, but for now they are between $104—$121, depending on whether the premium is automatically taken out of your Social Security check.
- Medicare Part D (prescription insurance) Medicare uses private drug plans to pay part of your drug costs. A monthly premium is required and the insurance company sets the premium. This coverage is voluntary and you have to choose to enroll.
- Medicare Part C/Medicare Advantage (hospital, medical, and prescriptions) HMO replaces Part A, B, and D coverage through enrollment in private health insurance. (Not all doctors who accept Medicare accept Medicare Advantage plans.) The premium rates are established by the private insurance companies.
- Medigap Plans are purchased through approved insurance companies to cover the gaps in Medicare A and B coverage (covers the remaining 20%). Medigap plans usually have high monthly premiums, but are good to have if you anticipate high medical costs.
There are many state and federal programs that can help offset the costs of all of these Medicare components. Medicaid is a state program that helps eligible seniors pay for medical care if they are at 100% of the federal poverty level (FPL) or below.
There is also a federal program called Extra Help, which assists with Part D premiums and medication copays. To learn if you qualify for Extra Help and to apply, go to ssa.gov/medicare/prescriptionhelp.
Another program which helps with Part B premiums, deductibles, and copays is called Medicare Savings. This is a federal program that is run by the states. You can find the eligibility guidelines here: medicare.gov/your-medicare-costs/help-paying-costs/medicare-savings-program/medicare-savings-programs.html-collapse-2614.
Case management
While ADAP helps many people access medications and health coverage— paying premiums for Markeplace, Part D, Medigap, dental, and vision plans—there are also other resources available through Ryan White case management. A medical and housing case manager can help you find vital assistance programs and guide you through the maze of applications. They can connect you with help applying for SNAP benefits (for food), Medicaid, emergency housing assistance, and Ryan White-funded therapy and oral care.
Benefit check ups
There are many things to consider when turning 65. Because of the amount of programs out there, and the variety of eligibility requirements and rules, navigating these systems can get very confusing. To get a quick snapshot of your Benefit Eligibility, you can start by taking this 20-minute survey. Once you get your results, you will have a better idea of our social safety net.
Marina Kurakin, MSW, MFA, is a paralegal and healthcare advocate at the Legal Council for Health Justice, where she leads legal clinics focused on health insurance and public benefits. She has extensive experience in working with refugees, people living with HIV, and other vulnerable populations. Because health is linked to social determinants, she concentrates on increasing resource access for all.