If you’re caring for someone over the age of 65, chances are that you know something about Medicare, the health insurance program that covers nearly all older Americans. But there’s another really important program that you need to know about: MediCAID.

Medicaid is important because it’s the safety net when everything falls apart. When your frail mother has been caring for your dad at home alone for five years and she can’t do it any longer. When 24 hour a day home care is too expensive, and still not enough to keep your dad safe. And, then when his nursing home care quickly depletes their savings.

Maybe you’ve only heard about Medicaid as a program that provides health insurance under Obamacare. Well, for much longer than we’ve had Obamacare, Medicaid has been paying for nursing home care and in-home care for people who are very frail or disabled and whose income and assets are low or have been depleted by the costs of care.

Read: 5 Common Misconceptions About Medicaid

Currently, there are over 8 million Medicare beneficiaries who are also eligible for the full Medicaid benefit package, which includes varying degrees of LTC (long-term care) and coverage of their Medicare Part B premium, as well as deductibles and coinsurance. There are also another 4 million or so Medicare beneficiaries whose income is too high for the full Medicaid benefit package but who get some help from Medicaid paying Medicare out of pocket costs.

If you’re a caregiver for one of these 12 million folks, you don’t need me to tell you how confusing this all can be. For those of you who aren’t, think about how hard you’re already working to manage Medicare and now imagine layering another completely different program on top of that. It’s a full-time job in addition to all your other full-time jobs.

What’s especially confusing is that Medicare is basically one program that’s the same for everyone in the country, but Medicaid is different in every state. Each state has different rules about who qualifies for Medicaid and the available benefits, and some states are more generous than others. So, for example, one state will practically guarantee home-based services and supports for in-need older adults with monthly incomes as high as about $2500, while another state sets the income threshold much lower AND has a long waiting list for services.

A big issue is that, even if you qualify for both programs, they are rarely coordinated with each other. Family caregivers are faced with navigating two different sets of program rules and requirements, on top of coordinating all the other services their loved one needs and uses. Usually, for example, doctors, who are paid by Medicare, have no idea about the Medicaid long-term care services someone might be receiving at home to help with such things as bathing, dressing, or eating. These providers don’t talk to each other, in part, because the programs aren’t coordinated.

The good news is a few states are very organized. They’ve worked hard in collaboration with federal government staff to create a “one stop shop” where you can choose for both Medicare and Medicaid. These programs often assign the participants a care manager or case worker who helps coordinate everything. For example, Minnesota offers the Minnesota Senior Health Options program that “combines separate health programs and support systems into one health care package.”

The bad news is that a lot of states are still struggling to make the programs work better together and some states haven’t really tried. On the bright side there are a lot of philanthropies, experts and policymakers working to fix this. But they need our help. The solutions they develop MUST REFLECT your experience and SOLVE YOUR problems.

To that end, a wonderful foundation, Arnold Ventures, wants to hear directly from you about your current care experiences with the many services you might be arranging and managing. Services such as medications, medical equipment, physician services and in-home care and behavioral health services. They’re hosting a series of focus groups where I will be leading an hour-long confidential conversation about the care you provide and how well you are supported.

Arnold Ventures, together with my team, will use this input to recommend solutions to policymakers. If you are interested in participating, please go to this page and share your contact information so we can send you more information.

In the meantime, if you’re taking care of someone who is enrolled in both Medicare and Medicaid, here are some tips for getting the best support you can.

The “PACE” Program. The Program for All-Inclusive Care for the Elderly (PACE) is a great program that many states offer through which very frail older adults who live in the community and are enrolled in both Medicare and Medicaid can get services bundled into one package and delivered through adult day services. The program is widely seen as the gold standard for care coordination and integration. Unfortunately, not all states offer PACE but there may be one in your area. To check, you can consult google or go to the PACEFinder resources on the National PACE Association website.

Area Agencies on Aging (AAA). Some states contract with AAAs to help manage access to Medicaid resources. It’s worth checking out. Call your local AAA – which you can find here – to see what kind of information and support they provide.

State Health Insurance Assistance Programs. These programs are funded federally but available locally to help you navigate Medicare. It’s free — You can find out more here.

Daughterhood Circles. Don’t forget to check out whether there’s a Daughterhood Circle operating in your area or your state. Many meet virtually so you can join even if you’re not in the same neighborhood. The listing is on our website here. If you’d like to start a Circle and become a Circle leader, get in touch with us here.