The Pooled Income Trust 

By the time my parents were in their mid-80s, they had gone through their savings and were living off Social Security. My mom received around $1,700 per month and my dad, who often worked as an independent contractor, received around $1,300. Combined, they could get by, thanks to a rent-stabilized apartment and small appetites. 

But when my dad passed away, his Social Security disappeared, and my mom now had around $1,700 to live on. Even though her food costs went down minimally, her rent, phone, cable and insurance costs didn’t, and I had to start quietly subsidizing her.

When it became clear that she would need extra help at age 95, after her second broken hip and even with me living at home as her primary caregiver, Medicaid was the only option that met her financial constraints—or so we thought.

But while she was rehabbing from hip-replacement surgery, I started making phone calls and quickly learned she didn’t qualify for Medicaid. The cutoff at the time was $1,200 per month.

I told this to the social worker who came to visit my mom in rehab, and she explained about the pooled income trust (aka a supplemental needs trust). Essentially, it works like this: you designate an approved nonprofit to pay a certain amount of your permitted bills each month. Then you send that organization a check with a little extra for their efforts. They pay your bills, and you get to deduct the money you send them from your earnings. 

And this is legal?

It is. Pooled income trusts exist in every state as a way to help older people and those with disabilities receive government assistance by spending down their income that’s over the Medicaid threshold. Sending the pooled income trust enough money each month to pay Mom’s rent brought her considerably below the $1,200 Medicaid threshold. 

(It’s important to note that when the person using the trust dies, their leftover money goes to the trust or the state. And the trust is irrevocable. That wasn’t an issue for my mother because she was out of savings. For people with more money—and heirs to inherit it—this stipulation is worth considering.)

Once Medicaid-eligible, the next step was to sign up with a Medicaid-approved home health aide agency, and if you’ve seen those commercials with friendly, smiling helpers who look like suburban soccer moms, it’s not like that. In New York City, home health aides get very little formal training—they’re technically not supposed to do anything even remotely medical, such as re-bandage a wound—and they get paid very little money. They’re basically there to make sure the client doesn’t fall, starve or escape and is relatively clean.

If an aide gets a client who has dementia, is belligerent or incontinent, it can be a tough job in which the aide might make less than a fast food worker and be cursed out half of the day. That so many of the mostly women who do it are pleasant is sort of a miracle. 

In New York City, the majority of home health aides are West African or Hispanic. Some aides are chatty and watch really bad daytime TV shows—my mom didn’t mind Family Feud but was not a fan of My 600-Pound Life. (As someone who grew up during the Depression, happily worked into her 70s and weighed about 100 pounds, she just couldn’t understand how anyone could let themselves get to be so big. She’d yell at the TV, “Get out of bed, and stop eating donuts!”)

We also learned that few health aides lived in our neighborhood, almost none had cars, and they weren’t reimbursed for their commuting fares or time. Many had 90-minute bus and subway trips even though they were less than 10 miles away. Additionally, Mom’s five-hour shift—all she was approved for at the beginning—was not popular. No one wants to travel three hours to get paid for five. Aides want a full 8-hour or 10-hour shift.

Over the first year, we went through maybe 40 aides (and that was after I only got my mom to agree to an aide by telling her it was to help ME, not HER). Some my mom sent home, but many—frequently the best ones—quit as soon as they got more convenient placements with more hours. The first aide who arrived was over six feet tall and dressed all in black. Mom was maybe four foot eight in heels (and she no longer wore heels) and was not a fan of the woman’s grim reaper attire. 

“Send her home,” she said, before the woman got two steps into the apartment. I refused. And so there was a standoff for a few hours where my mom and the aide, who was very nice and very understanding of the situation, sat in different rooms and basically ignored each other. Mom used stubbornness as a fuel, and she was not going to willingly let strange women enter her apartment each day without a little pushback.

But in the end, it didn’t matter. That first aide had decided she wasn’t coming back before she even arrived. Nearly two hours on subways and buses from Brooklyn to the Bronx was not worth it.

We were only getting started.