I love hearing from readers. Sometimes they write to tell me that a particular blog has helped them and that makes me very happy.
But a lot of the time, they tell me about problems that aren’t easily solved and ask questions that aren’t easily answered. Here’s one I get in many different variations that breaks my heart.
“My mom has some income from social security and less than $10,000 in savings. I’ve got a full time job I need to keep. Mom was doing fine until recently – but now she’s in and out of the hospital and having trouble taking care of herself. My sister and I are worried and wondering what we do next.”
So, basically what this means is that the family can’t afford to pay privately for care (at least not for long) and the adult children can’t leave or cut back on their jobs to provide care. They might be able to piece together support by providing care after work, and relying on neighbors and friends. But, this leaves the possibility of gaps. Gaps that will put their parents in danger or leave important needs unmet.
It doesn’t leave a lot of options! What do you do if this is your situation?
Well… there is a public program that may be available to pay for services your parent needs. It’s called Medicaid and is run by states. This is not to be confused with your parent’s health insurance, Medicare, which covers none of this.
Medicaid is important because it’s the safety net for when everything falls apart and you are out of options. You may have heard of it as a provider of health insurance under Obamacare. But, it’s also a program that has paid — traditionally — for nursing home care when families run out of money and options.
The GOOD NEWS is that nearly every state Medicaid program offers alternatives to nursing home care. Most have created home and community-based services programs to help frail older adults (and younger adults with disabilities) stay at home and out of an institution.
But, the complexity of these programs can be challenging. States usually tightly control eligibility, benefits and access. After all, these programs are funded through taxes and compete with lots of other things in state budgets like education. And, very important — no two states are alike.
That’s why it’s really important to understand how Medicaid home care works and how to figure out whether it’s a good option for your parents. To help you with this, here’s how I answer the 4 most frequently asked questions about Medicaid-covered home care.
Question: What Does Medicaid Cover for Home Care?
Answer: Generally, states can offer a broad array of services as part of their Medicaid home and community-based services programs. These can include transportation, respite care, adult day care, home modifications, some portion of assisted living in certain states, and of course, personal care at home with basic care needs.
But, know that there’s no concrete answer to this question because part of what makes Medicaid so complicated is that it is NOT a national program with the same services for every American.
Instead, the feds set some ground rules and then states have A LOT of latitude to design home care programs to suit their particular goals. There really are just so many differences among states that it’s hard to generalize. And, not only do the programs vary from state to state, but they can also vary from county to county and from group to group (say older adults vs. working-age adults).
Question: How Can I Get Information About My State’s Programs and Services?
Answer: One good place to start is the aging and disability resource center (ADRC) in your parent’s area. Google this term along with the name of your state (e.g., “Minnesota Aging and Disability Resource Center”).
ADRCs operate as a single point of entry for families and individuals looking for Medicaid-covered support. This is the place to learn about the programs and services that may be available in your parent’s community, the length of waiting lists (many states have them), and eligibility criteria.
The ADRC will take charge of evaluating your parent’s level of need and determining the package of services that would be considered “medically necessary” in order to meet that need. The ADRC staff will do this by conducting a care assessment and then creating a care plan.
The catch here is that, even if a state has a program in place, there may be a difference between the amount of care the program will pay for and the amount you feel like your parent needs.
Question: How Can I Figure Out if My Parent is Eligible?
Answer: Unlike Medicare, a program for which nearly everyone is eligible when they turn 65, Medicaid is just for people who have very low income and assets. And, almost all the home care programs also require that your parent need a really high level of assistance with basic life tasks (or have severe cognitive impairment) — generally at the level that would otherwise qualify your parent for a nursing home.
To break this down a little more: Unless your mom is already receiving supplemental security income (SSI — a program for low income people that provides income support in addition to Social Security) and therefore automatically qualified for Medicaid, she’ll need to meet income eligibility requirements through one of basically two other pathways — depending on what the state rules are.
One of these ways is to have regular medical expenses that are so high that they consume the lion’s share of your monthly income, effectively reducing it to very low levels. Many states operate under this pathway, called “medically needy” but the amount of money that can be leftover after your medical expenses is often so low that it’s hard to pay for other living expenses in a home setting.
Fortunately, many states allow for another pathway through which individuals with incomes as high as about $2200 per month can qualify (if they meet all the other requirements).
In addition to all of that, your mom’s savings must also be very low — about $2000. If her savings are too high for eligibility — even if her need and income already qualify her — she will have to spend most of her savings first, before Medicaid will pay. So for example, if your mom has $10,000 in savings, she’d need to spend about $8,000 first on her care before Medicaid would pay (and she still needs to have relatively little income as well).
It won’t work for her to just give you the $8,000 — Medicaid has rules about that as well as other rules about what happens to the home, and how to handle a spouse’s income. It’s all pretty complicated.
Let me stress again that every state is different — the eligibility rules, who’s in charge of the application process and how easy it is. I recommend that, if you can afford it, consider hiring a lawyer to help. You can start by going to the National Academy of Elder Law Attorneys (NAELA) website.
If you can’t afford an attorney, my friends at the NAELA pointed me to this directory for the national legal resource center which is geared specifically towards providing legal assistance related to aging issues. Check it out to see if there is help in your area.
Question: What Are the Special Programs I Should Know About?
Answer: Okay, to be fair, no one really asked that question but I think it’s important you know about these programs and issues. If your mom meets all of the eligibility requirements I described above, you’ll want to know if any of these programs are available in your parent’s area.
One is called the Program for All-Inclusive Care for the Elderly (PACE). PACE is like a very personalized and coordinated one-stop shop for all medical and long-term care that frail older adults may need. There isn’t a PACE program in every town or in every state — although there should be — but check here, and if there is one nearby, I strongly encourage you to consider it!!
Another of these programs is often referred to as “cash and counseling,” and it’s offered in many, many states but often goes under other names. Basically, it’s an option where the state will actually pay family members to provide care and/or will provide a cash allowance together with some counseling. This gives you and your parent more control and choice over the people you hire and types of services you get. The ADRC should be able to tell you whether this is an option.
I can’t resist a shout out for one of my favorite programs that helps family members who care for a loved one at home. It’s called Caregiver Homes and is run by my friends at Seniorlink. They provide care and supports – like access to medical professionals and tailored care plans. What’s more — the caregiver is able to receive payment for providing care in the home. Love, love this program. But, again, the enormous variation in what states offer means this program is only offered by about seven states. Hopefully more soon!
As I sit here in my dining room right now, I’m struck by how easy it is to feel alone and overwhelmed when trying to figure out all of the things you need to know. That’s the big reason we launched Daughterhood Circles – to create a way for caregivers to help each other. I really believe there’s no better source of information than a friend who has been through what you’re going through.
But, until we have a Daughterhood Circle in every community, please comment on this blog and share what’s worked for you and what hasn’t. We’ll keep track and compile the advice you give each other and share it in a future blog.
We CAN do very hard things but we shouldn’t have to do them alone.
To that end, it takes a community of experts to help write a blog about something as complicated as Medicaid. Thanks to all who made suggestions, but especially to my friend Donna Folkemer who has generously lent me her time and expertise on this topic as well as many others!