Imagine you are newly diagnosed with HIV, and you don’t have health insurance to pay for doctors’ visits and medication–and you’re also behind on your rent.
Or maybe you’re a long-term HIV survivor living on disability income from an employer and Social Security–and you’ve just turned 65, so your corporate disability insurance expires, and your income suddenly drops in half.
What do you do? That’s where GMHC’s Advocacy Department comes in. It can be overwhelming for people living with HIV to try and navigate confusing, intimidating systems to get the medical care, government benefits and social services they need–especially when many don’t know what is available.
GMHC’s client advocates play a crucial role in helping people maintain their health and wellbeing. About 70% of the clients they serve are living with HIV, says Paulyn Sarmiento, GMHC’s senior director of advocacy, business development and compliance. An HIV diagnosis also affects people’s housing security, employment and income.
The priority is to make sure their clients have access to health care, whether through private health insurance, Medicare or Medicaid. “If you are lower income with health concerns, and maybe also having housing issues and mental health concerns, so many things could be happening internally that managing your health care falls off,” Sarmiento says.
To keep that from happening, the Advocacy Department helps clients obtain housing and disability benefits and connects them to GMHC’s legal, mental health, and social support services. “We are here to help you get health care coverage and also to provide peace of mind,” Sarmiento says. “A client advocate can explain your options and answer questions.”
Health care, stable housing, and disability benefits are the main needs for clients that the Advocacy Department assists–but other issues often crop up, says Alexandra Remmel, who just marked her 27th anniversary as GMHC’s lead client advocate. “As advocates, we stay on top of shifts in eligibility criteria and get people access to support they may not know they’re eligible for,” she says.
If a client has just been diagnosed with HIV and is too sick to work, for example, they could need both sick leave and disability benefits, in addition to health care.
Remmel will help them apply for Social Security and might need to refer them to GMHC’s Legal Department for aid with job leave accommodation. However, that leave might require a doctor’s affidavit–and, fearing stigma, the person may not want to tell their doctor they’ve been diagnosed with HIV. Remmel will help them figure out how to negotiate that.
Health Care Comes First
For someone just diagnosed with HIV who’s uninsured and behind on their rent, the first thing to do is get them health care, Remmel says. One option is New York City’s HIV/AIDS Services Administration (HASA) program, which links people to Medicaid coverage, as well as rental assistance, cash, and food stamp benefits–as long as their income is below certain limits.
About 75% of the clients Remmel sees qualify for HASA. That could include someone who’s just turned 65 and lost their long-term disability insurance payments, she says, since their monthly income could be reduced to a Social Security disability check of just $1,700 per month. The rest are either working, receiving long-term disability income or, in a few cases, have their own funds.
For health care coverage, New York State Medicaid caps income for an individual at $18,075 per year. If a client’s income is too high for Medicaid, then Remmel’s colleague Olivia Gaillard, GMHC’s director of health benefits, can help them enroll in a New York State Marketplace (Obamacare) health insurance plan.
If private health insurance is too expensive, then the New York State AIDS Drug Assistance Program (ADAP) covers health insurance premiums and medications for people living with HIV. ADAP is designed to keep people in care, Remmel says, so it covers people with incomes up to five times the federal poverty level–and enrollment can happen within a day.
The Benefits Puzzle
Gaillard and other staff help clients navigate Marketplace health insurance and ADAP, while Remmel handles Medicaid and Medicare enrollment—and everything else. It gets complicated fast, she says.
What if a client can enroll in HASA for rental assistance, but they want to keep the doctor they have through private health insurance–and the doctor doesn’t accept Medicaid? ADAP will pay for the private insurance the doctor does accept, but Remmel must make sure the HASA caseworker doesn’t sign the client up for Medicaid. “ADAP and Medicaid are mutually exclusive,” she explains.
Word of mouth from clients is one of the Advocacy Department’s main sources of referrals, she says, along with HASA case workers, doctors, and social workers at New York City hospitals. Internally, GMHC’s client wellness callers, along with the mental health and legal departments, refer people who need her expertise.
She also makes a point of networking with staff in other departments at GMHC and at government agencies like HASA, so she knows who to call when a client needs help.
From Housing to Mental Health
It’s common, Remmel says, that a client will come to her for advice about a situation that turns out to be just the tip of the iceberg. What looks like a housing issue, for instance, could require mental health and legal support.
“An individual might come in and need to move, even though the lease is in his name, because of a domestic violence issue,” she says. Within GMHC, she’ll refer them to the Legal Department for advice on the lease and the Mental Health Department for counseling. She’ll also refer them to the NYC Anti-Violence Project, do a financial evaluation, and supply them with a list of realtors for help finding a new apartment.
“Housing security is important for maintaining your health, employment, and relationships. When you’re applying for jobs and benefits, you need a stable address,” Remmel says.
“It’s getting harder and harder to find a place to live, so it really matters that people keep their apartment, especially if they’re in a rent-stabilized situation,” she emphasizes, adding that a lot of realtors don’t want to work with people receiving public rental assistance through HASA or other programs.
A lot of clients come to Remmel because they’re behind on rent. If they are enrolled in HASA and their landlord isn’t receiving payments, then she’ll start checking with her HASA contacts to find out what the problem is. Remmel says she’s able to be more nimble than a caseworker and call HASA staff outside their chain of command.
Asked what’s kept her going after almost three decades of advocacy and advice for thousands of GMHC clients, Remmel replies, “The people. The clients.”
She gives one last example: The cost-of-living increase for Social Security is higher than usual this year, due to inflation. That’s great, except the increase in income can affect clients’ HASA eligibility, jeopardizing their rental assistance and other benefits.
“In February, I’ll start getting calls from people who are now over the income limit for HASA,” Remmel said. “Everything is always changing, and people need to know what to do. That’s what keeps me going.”