Choosing to Care Means Choosing to Go Without

It costs New Hampshire a lot less to keep someone at home than to put them in a facility. That goes for kids with disabilities, adults, and aging parents. Every time a family steps up and says, “We’ll handle it,” the state pockets the savings. Then it turns around and makes you fight for a sliver of that money back. Here’s what that looks like in real life, and what it cost my family.

There was no shortage of paperwork.

Evaluations. Eligibility checks. Applications, re-applications, yearly reviews. Meetings where strangers decided what my kids needed. I’ve filled out more forms than most people will ever see, and I got good at it.

And at the end of all of it, the help still didn’t come.

Nobody warns you about this part. Not the diagnosis, not the paperwork. You can do everything right, qualify for every program, get every approval, and still end up doing the care at 3 am because there’s nobody else.

Why can’t I get help unless I’m poor enough?

Start here. This is the door most families never get through.

To receive New Hampshire’s In Home Supports waiver — the program that helps you care for a disabled child at home — your child has to be on Medicaid first. If your household income is above the limit, there’s a second door: Home Care for Children with Severe Disabilities, needs-based Medicaid that looks at the child rather than the household.

Here is how the state describes who gets through that second door.

Read that twice. To qualify for help keeping your child out of an institution, your child has to first qualify to be in one. The rule sets the bar exactly: a child who needs “the same level of care as provided in a hospital, psychiatric hospital, nursing facility, or intermediate care facility for the intellectually disabled.”

Not significant needs. Not substantial support. Institutional level of care, or nothing.

So here’s where a working family ends up. Make a little too much for Medicaid, don’t clear that bar, and you get no help with your child’s care. No waiting list. No slow climb up a queue.

This is the ALICE wall at its most basic: you make too much to qualify, but not nearly enough to get what you need. And what you can’t buy isn’t a vacation or a car repair. It’s care for your kid.

Why doesn’t help arrive even when you qualify?

Let’s say you get through the door. You’d think the hard part is over.

New Hampshire’s adult home-care program, Choices for Independence, is the one the state documents most thoroughly — so it’s the clearest place to see what happens next. Ask the Department of Health and Human Services whether there’s a waiting list for it, and the answer is no. There isn’t one.

To understand why nothing arrives anyway, look at what the state assumes this work is worth. New Hampshire builds its participant-directed care budgets on a direct support wage of $12.60 an hour.

A Dunkin’ in Manchester posted a crew position last week starting at $13.00 an hour, plus cash tips. Not the average — the starting wage, day one, no experience.

The two jobs aren’t the same job. The Dunkin’ shift doesn’t make you document monthly progress against functional goals and report it to the state. It doesn’t come with a chance of being bitten or hit. It ends when it ends.

So nobody takes the care job. Not because people don’t care — because you can’t ask someone to take on paperwork, physical risk, and emotional weight for less than the drive-through pays and expect a yes. Every one of New Hampshire’s seven case-management agencies reports the same result: people don’t receive services because there aren’t workers to send. The posting, the survey and the sources are on the Crack page.

That’s not a labor shortage. It’s a price the state set.

That survey covers the adult waiver, not mine. But every caregiver I know tells the same story, and I can show you exactly what it looks like inside a real house.

My kids’ waiver pays about $2,100 a month per child — $4,200 for the two of them, roughly $50,400 a year. At the state’s own $12.60 assumption, that buys about 333 hours a month: a little over five hours a day, for two children who need all of it. I haven’t found anyone qualified willing to take that job for that pay. Not unreliable people. Any people.

So the money goes to me, because I’m the one doing the work.

Why did getting help with care cost me food assistance?

Now the part that made me write this.

When that money started coming to me as the caregiver, my SNAP benefits were canceled.

Not reduced. Canceled.

And the reason given wasn’t that I was earning too much. SNAP counted it as a resource — money I have available, like savings in an account. Money I could use to buy groceries.

It’s not money I can use for groceries. It’s meant for my kids’ care, and I’m the one doing it because nobody else will take the job for that pay. If I spend it on food, I can’t spend it on the care it’s supposed to cover.

I appealed. Not a phone call — the whole process, as far as it goes.

The decision was upheld.

So this isn’t a caseworker having a bad day or a form filled out wrong. The state reviewed whether money paid to me for my children’s care counts as groceries I could have bought, and confirmed that it does. That’s not an error anyone can fix for me. That’s the rule working exactly as written — which means it can only be changed by the people who write the rules.

Why does one dollar get three different answers?

Here’s what makes it worse than just bad luck. Three different government offices look at the same dollar and can’t agree on what it is.

Who’s looking	What they call it
The IRS	Not taxable income. A “difficulty of care” payment.
Medicaid	Doesn’t count against you.
SNAP	A resource you could buy food with.

The federal rule is specific, and I meet all of it. Under IRS Notice 2014-7, Medicaid waiver payments to an in-home caregiver are treated as “difficulty of care” payments and excluded from gross income — provided the caregiver lives in the same home as the person receiving care, the money comes from a state-authorized Medicaid home and community-based waiver, and it pays for personal care or support delivered in that shared home.

My kids live with me. It’s a New Hampshire HCBS waiver. It pays for their daily care, right here at home. The federal government looked at this exact setup and said it’s not household income, because it isn’t.

SNAP is the outlier, and SNAP is the one that feeds your family.

Nobody set out to do this to caregivers. Different agencies wrote their own rules and never compared notes. The end result: a family qualifies for care help, gets it, and loses the ability to buy food. And there’s no form to appeal when agencies don’t agree — as I found out.

Does this happen to adult and elderly caregivers too?

Yes. The population changes; the arithmetic doesn’t.

New Hampshire spends more than twice as much per person on a nursing facility as it does on the home-based alternative — same budget table, same year. A daughter who moves her mother in, a wife who stops working after her husband’s stroke, a parent who says no to residential placement: every one of them drops the state’s bill, substantially and for good. Then each of them is offered a fraction of what was saved.

The full evidence is on the Crack page — the cost figures across every population, what the agencies that deliver the services actually report, and what it costs the hospitals when home care can’t be staffed.

Where does that leave a family like mine?

Two children. About $50,400 a year, which is what a household of four lives on.

The 2026 federal poverty line for a family of four is $33,000. So we’re at 153% of it — above the poverty line, above the SNAP income cutoff, above Medicaid expansion.

Officially, we’re fine.

Now measure the same household against what it actually costs to live here. And this is where it gets strange.

$94,728 a year. Housing $2,141 a month, food $1,728, child care $1,082, health care $744, transportation $703. Nothing in there for savings, for a vacation, or for a disability.

We live on $50,400. That’s 53% of it — about $44,300 short, every year. And York County, Maine is cheaper than where we actually live.

There’s one more thing that budget can’t see. It’s built for a renter — the housing line uses fair-market rent, so there’s no line in it for property tax.

I pay over $12,000 a year in property tax. The whole ALICE budget allows $8,772 for taxes of every kind. My property tax alone beats that by more than three thousand dollars, before anything else. That’s roughly a quarter of everything this household has, going to the way New Hampshire chooses to fund itself — and because the waiver payments aren’t taxable income, none of the relief that runs through the income tax system reaches them.

Which is the same bill local taxpayers are already carrying: 83% of New Hampshire’s special education costs, $815.6 million of $978 million, raised on the value of people’s houses.

And there’s no second job to take. The care is the job, and it runs all day. That’s not a floor I’m standing on — it’s a ceiling.

The measure built to count families like mine publishes no number for my state. I had to cross a border to find out how far behind we are. That gap has a name on this site: the ruler that can’t see us.

What can I do about it?

Tell us what happened. Not because it feels good to vent. Because it’s proof.

One family telling this story is a bad year. Forty families telling it is a policy failure with a name and a number. That’s what gets noticed at a budget hearing. Right now, the people writing the budget have a simple answer: there’s no waiting list. What they don’t have are forty stories about what really happened when someone qualified and nobody showed up, or when a benefit got canceled for accepting help.

• You decide how much is public. The default is that nothing identifying you is published. Most people ask us to use their story only as part of the numbers, and that’s completely fine — your account still counts. That’s the whole point of counting.
• We’re not a service provider. I can’t get you hours, move you up a list that doesn’t exist, or intervene in your case. If you need help right now, call 211.
• We may not use your story at all. If what happened to you turns out to be one thing that happened once, we’ll say so rather than build an argument on it.

And if you’re a caregiver whose benefits changed after care funding started, please tell us that part. Nobody’s counted it yet, and it’s the one thing with a clear fix: agencies just need to agree on what a dollar is.

Every figure cited here is sourced and auditable at 603circle.com/data, and the full evidence base is on The Cost of Love. Sources: NH DHHS, Home Care for Children with Severe Disabilities eligibility definition; NH participant-directed budget staffing assumptions (direct support wage $12.60/hour); NGP Management Dunkin’ crew member posting, 921 Beech St, Manchester NH, posted July 26, 2026; NH Fiscal Policy Institute, “Long-Term Services and Supports in New Hampshire,” July 2022; IRS Notice 2014-7 on difficulty-of-care payments; U.S. Department of Health and Human Services 2026 poverty guidelines; United For ALICE Income Status Tool 2024 (York County, Maine — New Hampshire is not included in the tool, and York County is used as the nearest published comparison, not as a New Hampshire figure); NH School Funding Fairness Project FY2024. This post does not claim that service gaps cause institutional admission — no New Hampshire source quantifies that link. The account of eligibility, waiver payment, SNAP treatment, and the appeal is the author’s own household experience; waiver allocations and benefit determinations vary by case, and nothing here is legal or benefits advice.