Michael Luciano, 52, was diagnosed with HIV in 1987, and is now a peer treatment educator at the HIV/AIDS service agency Palmetto Community Care in Charleston, South Carolina. He's been in that job full time for two years now, earning a salary in the mid-five figures. But before that, he was unemployed and living on Social Security Disability Insurance (SSDI) for 24 years.
With multiple AIDS-related infections in the 1990s, "I barely made it through to the triple-combo era," he says, "and even after that, I physically wasn't doing well until 1999 or 2000. But by that point, I didn't know how to face re-entering the workforce and finding a job that would cover my outrageous medical expenses, so I remained on disability."
Among folks with HIV age 50 and over -- and that will very soon include this writer, whose big half-century is only weeks away! -- his story isn't unusual, especially among longtime survivors who may have been out of the workforce for many years or never thought we'd have to save or otherwise plan for old age and retirement.
But now it looks like many of us may live well into our sixties, seventies, eighties -- perhaps (egad!) longer. And many of us -- this middle-income, self-employed, trust-fund-deprived author included! -- are realizing we've got some hard thinking and planning to do to make sure we'll be securely housed, fed, and health-insured into our dotage, with at least just a wee amount of funds left over for that ever-elusive category -- fun, travel, culture, etc. -- called "quality of life." (Then, of course, there are those of us who have dependents, like spouses or children, to think about as well.)
Take Luciano. "It's scary to me that I don't own property or have a 401K," he says. His rent is $825 a month, and he says his job is working on getting a 401K plan in place. "I just don't know if I can maintain full-time work until 67." That's soon to be the age at which folks born after 1960 can get their full Social Security benefits, even though you can take out a reduced version starting at 62.
"All my relatives would have to die at the same time for me to inherit anything substantial," he says. "I need to replace my car. I'm heading into retirement with not much more I'm sure of than Social Security, and that's frightening."
Among folks with HIV over 50, he's definitely not alone. According to a study out last year from ACRIA, about half of about 200 people in San Francisco living with HIV over the age of 50 said they were just able to get by. About a quarter said they didn't have enough to make ends meet. A comparable study in New York City a few years prior found similar results. (Granted, both cities have extremely high costs of living, but they also have unusually high levels of housing, health, food, and other services for folks with HIV.)
Hence, this story. We want to help make it a little less scary and overwhelming to think about the rest of your life. And you'll find that if you break it down into small steps, it's not that bad. So let's get going!
To start, the way to approach your retirement plans will break down roughly into two groups of folks with HIV over 50:
- There are people with HIV who have been recipients of disability and other lifesaving government programs in health or housing and have had to keep their incomes low in order to benefit. "The epidemic has disproportionately impacted communities, such as African Americans, who started out with unequal access to economic and employment opportunities," says HIV-positive Mark Misrok, 60, executive director of the National Working Positive Coalition, "and living with HIV has not only deepened their poverty but entrapped them in it."
- There are also those who are, and have been, able to work and amass some level of assets or savings via some combination of Social Security, a 401K, an IRA (or several), investments, home ownership, or independent income (family money or property).
Retirement When You've Already Been Using Public Assistance (e.g., Social Security Disability or Medicaid)
In Fort Worth, Texas, Judith Dillard, 65 and going on 30 years living with HIV, writes: "I am on a federal housing program. I have no money saved, I live month to month on Social Security disability." In a phone call, Dillard explained that she gets $773 a month on SSDI and $66 in food stamps, plus all health expenses covered through combined Medicare and Medicaid. But she has to put $200 toward her rent, $60 toward her phone bill, and roughly $100 or more toward her electricity bill. Obviously, that doesn't leave much left over, and she says she sometimes has to borrow money from her sister for emergencies like car repairs.
"It's a struggle," she says. "Life is a struggle."
Dillard says she would like to find a part-time admin job at an AIDS service organization whose salary would not exceed her benefits cut-off, but she can't right now because she's recovering from surgery. A longtime activist with the Campaign to End AIDS and other initiatives, she says that community and social engagement keeps her spirits up, but that overall she is unhappy "because I'm having too many financial and health problems." Her advice to younger folks with HIV? "Don't go on disability early if you're healthy. Get a good job with a 401K or get a savings plan so that when you hit 65 like me, you'll have something to fall back on."
Dillard is definitely not alone. "There's the world of people with HIV who can work and save, and the world of those who can't because they'll lose their benefits," says Alexandra Remmel, the longtime benefits and financial counselor at GMHC in New York City. "These are folks whose long-term plans are more about how they are going to find an apartment that isn't a walk-up, not about spending part of the year in the Caribbean."
However, folks on the public disability programs SSDI and Supplemental Security Income (SSI) are allowed to work to an extent, as long as they don't exceed income caps for their programs -- and those caps vary by state, as some states supplement federal payouts. You can learn much more here, in the Social Security Administration's Red Book. You can also find out from the Employer Assistance and Resource Network on Disability Inclusion where to start in your state for resources to help you get back on a career path that's right for you. "I've known people who got a master's degree paid for, or got the expenses paid for to launch a small business, by working through available programs in their state," says Misrok.
But honestly, for anyone reading this story who feels overwhelmed, your best bet is to find someone like Remmel who can go through your entire situation with you and help you understand and apply for all the options in your state, especially if you expect that you will be living mostly off benefits and programs for the rest of your life.
Start by calling your nearest HIV/AIDS organization and asking if they have anyone on staff who does this. If they don't, call some local nonprofits that help financially challenged folks work through their benefits. Perhaps start by calling your local town or city hall for some referrals. If you already work with a case manager or linkage-to-care specialist, ask them for their advice on where to begin.
According to Misrok, there are various ways that the government allows you to experiment with going back to work -- even starting your own small business! -- while staying on your disability and retaining your health benefits.
For example, he says, you will continue to be eligible for Medicare for 93 months after you go back to work, giving you a window to see if the working life works for you. Plus, most states have a Medicaid buy-in program, so you can continue to get Medicaid even if you're not getting SSI anymore.
And these (limited) opportunities expand when your disability benefits convert to retirement benefits. This happens when you're 65 or 67 (depending on when you were born). That's why it's so important to get help working through your options.
Yet another option? A special needs trust, in which family members or others close to you are allowed to put in, then take out, money for things you might really need, like a new bed or laptop, without it affecting your benefits. (If you're on SSI, which is basically government charity, you're not supposed to have more than $2,000 in assets!)
Of course, you may simply not be able to work at all on disability and/or retirement benefits. And that's okay. But it still helps to have a one-on-one with someone to make sure you know all options you're eligible for when it comes to maximizing benefits.
If you expect to rely on benefits the rest of your life, there's one more thing to think seriously about: moving to another state that may have better benefits, such as Medicaid expansion under Obamacare or more generous income limits or formularies on its AIDS Drug Assistance Program (ADAP). ADAP covers HIV meds and care, or even premiums on entire health plans, and also sometimes covers Medicare-related copays. In 2019, the ADAP eligibility income cutoff in Texas is $24,280 -- while in New York, California, and Massachusetts, it's over $60,000.
"We're the golden state for anyone who's disabled," says Remmel of New York. "People move here from the South all the time." Conversely, some folks entering retirement choose to move to the South or Midwest from large coastal cities because the cost of living is cheaper. But you'd better do your benefits homework first before you move! What good is paying half the rent you were paying in New York, San Francisco, or Boston if you're suddenly paying $600 a month out of pocket for your Obamacare plan because you're too "rich" in Georgia for ADAP to cover it?