Caregivers have questions! At Daughterhood, we’ve heard a lot of them over the years. Each person comes to us with a unique and complex set of problems. These problems almost always generate some version of the question, “Where do I go for help? Where do I even start?”
Caregivers have questions about how to care for their loved ones; questions about the best place for them to live, the kinds of services they need, where to find these services and, importantly, how to pay for them. Caregivers have questions about medical care, Medicare coverage, and Medicaid eligibility. And even before all of this, caregivers usually have questions about how to persuade reluctant parents and loved ones they need help – or how to work well with siblings.
Basically, as a family caregiver, you’re creating an entire care delivery system by yourself. It’s a lot.
So, then the BIG question is… where is the ONE PLACE to go for answers and for help navigating it all? Family caregivers want a one-stop shop for care navigation needs that responds to the question, “Where do I even start?”
Unfortunately, there’s no easily identifiable place to turn for help in navigating the caregiving world. States, communities, and neighborhoods offer some publicly available support through agencies and non-profits, but the options differ wildly in what they provide and what they’re called. There are some private companies that may help but it’s hard to know who to trust and not all of us can afford to pay for assistance.
A lot of organizations will provide you with lists… but have you noticed that even the lists have lists? It’s intensely overwhelming and causes such yucky panic. My best advice, in this situation, is to take a deep breath and reset your expectations. This is a journey and the main thing to do is just start. That’s it. Shine your flashlight on the path in front of you and take that next right step.
So, what is that next right step? I’m going to share with you the very basic “roadmap” that I share with our Daughterhood community on a one-on-one basis every time someone comes to me with this question. It’s not specific to anyone or any one neighborhood but it will get you started finding help navigating the system in the area you live in.
First Stop: Public Agencies
Nearly every community has a government-funded agency that has the formal label, “Area Agency on Aging,” (AAA). When families come to Daughterhood looking for navigational support in their community, I always direct them to their local AAA first. Most people don’t realize that AAAs exist and sometimes that’s because they often go by different labels, like senior centers or because they’re housed inside other organizations. It varies by state.
The information and education they provide is always free, although some services require a fee. Often, they’re staffed with people who are very knowledgeable about local companies providing services and a wide array of other resources.
You can find your local AAA through the Eldercare Locator, which is a good resource in and of itself. When you call, give a quick overview of what you are experiencing and what your loved one is having difficulty with at home. Make sure to get the person’s name and also ask: What services does your AAA offer (for free? At a fee?)? Is there a wait list? What local organizations can you refer to? What service(s) is my loved one qualified for? Close by asking what the next steps are and who to contact next. Make sure to confirm which service(s) your loved one is eligible for.
The government also funds something called, “Aging and Disability Resource Centers,” which are sometimes separate from AAAs and sometimes housed within AAAs. ADRCs offer older adults, individuals with disabilities, veterans, and their families, information, resources, and counseling on the long-term services and support (LTSS) options available in their area. You can also find information about these through the Eldercare Locator.
I’ve had friends and family share their experiences in AAAs. (Fun fact: I was a volunteer with my local AAA’s “friendly visitor” program when I was in my 20s). Many have said they got great advice and support, but others have had a harder time. Regardless, I would advise you to start with the AAAs because they are our essential aging services infrastructure.
The biggest issue is that AAAs don’t receive enough funding FROM THE FEDERAL AND STATE GOVERNMENT to meet the growing demand for this kind of assistance. We really need to support these important agencies. I know you’re already overwhelmed but consider sending a letter to your U.S. Senator and Congressional Representative about the need for more funding for services to support family caregivers.
I would be remiss if I left this section without mentioning the State Health Insurance Assistance Program (SHIP). This is not intended to be a one-stop shop for navigation. But it is a state office that can connect you with counselors who can provide advice and guidance on Medicare and Medicaid. Click here to go to the national SHIP website.
Next Up: Non-Profits and Community-Based Organizations.
A Community-Based Organization (CBO) is a local organization that provides specific services to qualifying individuals within the community. A popular, nationwide example of a CBO is Meals on Wheels America which delivers meals to seniors across the country. Local religious organizations can also be an example of a CBO in your community. I always say… look to the Catholic, Lutheran or Jewish organizations in your community. They’re a wealth of information and often have free but trained volunteers who will connect you with options. I find these organizations by just googling around until I stumble onto them. Good search terms include, “Lutheran senior services,” “Jewish family services in X town,” and/or “Catholic charities.”
Just as an example, let me share with you a great resource I learned about in Pittsburgh, “Agewell Pittsburgh. They’re associated with a number of Jewish family services organizations but helped a friend of mine find transportation services for her Chinese mother. So, there you go.
While I’m on the topic of non-profit organizations that help, let me point you to the Medicare Rights Center. This organization will help you navigate issues accessing the healthcare benefits to which you or a loved one are entitled. They do incredible work and have a free help line you can call.
Next Option: Private Navigational Resources.
In an ideal world, our hospitals and physicians would be able to plug into an organized infrastructure of aging services to help caregivers navigate their options when needs arise. Unfortunately, it almost never works that way. My father’s primary care physician had a “care manager,” which I put in quotes because she provided so little help answering my questions and helping me find a high-quality home health provider. It was, as my kids would say: lame.
In response to this gap, there’s a bit of a “wild west” of private solutions out there but it’s very hard to know who to trust. The way these organizations make money can sometimes bias their advice, or make us question it, which is just as bad.
One of the suggestions I often make, though, is for caregivers to consider (if they can afford it) a geriatric care manager (GCMs) who are also called Aging Life Care Managers. You can find a list of these professionals on their professional association website, Aging Life Care Association. GCMs charge a fee for their time but the good news is that means you know exactly whose side they’re on!
At Daughterhood we get a lot of questions about legal issues. Getting legal advice about wills, family contracts, and Medicaid eligibility is almost always money well spent. To find a lawyer in your area, go to the National Academy of Elder Care Attorneys (NAELA). Sometimes a legal firm will be partnered with or employ social workers to provide a full-service solution for navigation and legal support. While I’m on this topic, financial advisors are often aware of good sources of information and navigational support in their communities.
My friend Lindsay Jurist-Rosner started a company called Wellthy at about the same time I started Daughterhood and has lots of personal experience as a family caregiver. She employs a team of amazing care managers who can tap into solutions in any market. You can pay them for their services but it’s also possible your employer offers their (or similar) services through the employee assistance program.
Building A Place to Go at Daughterhood
This roadmap is not exhaustive. There are many, many resources out there. Once you get started on this journey, though, and take just the one next right step, the path will reveal itself and you’ll begin to get plugged into a community of resources and support.
Speaking of communities, what if we could all come together in a shared community, to coach and support each other and to share resources and solutions through the magic of the internet and caring for each other? What if there were a real PLACE TO GO? Well, that’s what we’re building at Daughterhood. Won’t you please join us by signing up for our newsletter if you haven’t already, follow our podcast, on social media (FB and Instagram) and/or attend a Daughterhood Circle. You know the drill. The more numbers of truly engaged and authentic community that we can show, the more successfully we’ll be able to attract philanthropic dollars to support this ambitious dream.