Gary Barg: Holly, can you share some background on GT Independence and the work you do in support of family caregivers?
Holly Carmichael: Absolutely! GT Independence is a financial management service provider. We help over 25,000 Medicaid beneficiaries self-direct their care across the country. What that means is an individual receiving long-term services, typically through a Medicaid program, can select and hire a caregiver of their choosing. Often, it can be a family member, a friend, but someone that they know and trust. We would all want choice and selection with personal care needs like bathing, eating, or assistance with activities of daily living. To have choice, freedom and control over who helps you with those tasks is really powerful.
Holly Carmichael
Gary Barg: That is important because we become caregivers so many times by a metaphorical phone call in the middle of the night telling us of our loved one’s healthcare needs. You may have never been called upon to pay any bills in your family before this moment. So, it’s important for family caregivers, as the CEO’s of Caring for Our Loved Ones, Inc. to have a partner like GT Independence.
Can you explain a bit about self-determination and how somebody who’s a family caregiver can benefit from this program?
Holly Carmichael: Self-determination is all about freedom and choice. Our company’s mission is to help people live a life of their choosing regardless of age or ability. That means just because you have a disability or you’re elderly and need long-term services and supports, it doesn’t mean you shouldn’t have flexibility and freedom in your life.
I think you bring up a good point. Medicaid and long-term services are tricky waters to navigate. If you’ve never faced that before and you’re facing that in crisis, it can be very difficult. Self-determination allows family caregivers to often get paid for the care you’re providing. A lot of folks don’t realize that benefit is available to them because usually they have to leave jobs to help their family member.
Gary Barg: Let’s talk about how a caregiver can get paid for the care that they give their loved one?
Holly Carmichael: At GT Independence, our big goal is to make sure self-direction is an option for every individual. It’s not currently and we’re working to change that. There are programs in all 50 states and because Medicaid is jointly funded by state and federal government, that means each of the programs are a bit different.
We at GT Independence are dedicated to helping individuals navigate and figure out the programs, even if it’s a state we’re not serving, we can at least get them pointed in the right direction.
Gary Barg: If caregivers are looking for this information, what website should they visit?
Holly Carmichael: They should go to GT Independence. I happen to be a mom of a daughter with a rare disease. I’m involved in online communities with other parents whose children have the same disease called Congenital Disorder of Glycosylation. So, on a personal level, I see it as our duty to help people find programs in their area, even if we are not their service provider.
Gary Barg: Have you seen a shift towards in-home care in 2020 as a result of Covid-19?
Holly Carmichael: Most definitely! Sadly, many of the deaths come through nursing homes, or congregate type settings. In a pandemic that’s not the safest place to be. We’ve seen self-direction programs expand across the country. People like it because they can select the provider—often a trusted family member or friend, or even somebody who already lives with them. So, they can better follow social distancing guidelines and feel more comforted that they have control. You’re the boss. That can help keep some minds at ease. “I know that this worker’s only working for me. I know they’re following Covid-19 precautions and keeping my loved one safe.”
Choosing my daughter, Maggie’s provider, was a big deal because of her rare disease. If she were to get Covid-19, it could be deadly. It’s scary for somebody in that position when your loved one is especially vulnerable.
Gary Barg: Is there training available through GT Independence?
Holly Carmichael: We have some trainings available and each Medicaid program that we operate in has different requirements. For example, in North Carolina, one of our clients set up an autism-specific training because her son had autism and she wanted to make sure that her caregivers were specifically trained. With budget authority, you’re able to flex your funds and use it for more unique things like that. At GT Independence, we have a Caregiver App that makes logging your time really easy.
Gary Barg: Do you see, through the program, an ability for more people to be able to maintain a safe and caring existence in the community?
Holly Carmichael: Yes, definitely. The beautiful thing about self-direction is that family caregivers who are not going to work at an agency provider; but want to be paid to take care of their own loved ones, can generally do so. We can do that cost efficiently with Medicaid funds and still deliver a great service, solve problems along the way, and have some excellent outcomes.
Gary Barg: What happens if a participant doesn’t have a relative, friend or loved one who can provide home care? Can we still participate in this self-determination program?
Holly Carmichael: Most definitely. At GT Independence, our role as a financial management service provider is really to be a support to that individual who becomes an employer. And that includes providing recruiting assistance. We have a Caregiver Link tool that helps you find caregivers who are interested in providing care in your area. You still have all the power and authority. So, you still get to interview, select, set the guidelines for what you want them to do and direct how the work’s done.
Ultimately, if you don’t like how the work’s being done, you can terminate somebody because I think the power to fire is one of the most powerful things in self-direction. With self-direction, you’re the boss. We’re your health and support. We’re sort of your back-office, HR and payroll. You get to be in charge of your life.
Gary Barg: Having the strength, and the understanding to say, “My firing this person is the thing I need to do to create an environment that’s more safe, better, and effective for my loved one. So, I understand why I have to go through this difficult process and fire somebody.”
Holly Carmichael: Absolutely. I was just talking with one of our care coordinators in Wisconsin who was telling me about somebody’s mental health and mood upbeat after switching to self-direction and getting to hire her sister who’s now helping with her care. So, her sister’s able to earn income and help her meet her personal care needs. Before this she was using an agency provider and they were adequate. But the individual ended up describing the caregiver as feeling that it was just a job. Through self-direction, the ability to hire somebody who you feel good about providing your care makes a world of difference.
Gary Barg: How does someone sign up for the self-determination program and why would participants work with a financial management service such as GT Independence?
Holly Carmichael: That’s a great question. It varies state-to-state and even population-by-population. If you go to our website, we should be able to help guide you and direct you, even if you’re not in a state that GT Independence services. Most states have Aging & Disability Resource Centers (ADRC) that can help guide you to programs in your area. Area Agency on Aging organizations or community mental health centers can help, as well. You also can check out your local protection advocacy or disability rights centers. They usually have great information on self-directed care.
Gary Barg: We often hear the words “nothing about me without me.” How can caregivers help bring this concept to life?
Holly Carmichael: It’s very important to remember that the individual still maintains their own dignity and respect. Some advocates say we want to be their microphone, not their voice. This is really core to self-determination and self-direction.
Sometimes it’s the freedom to fail or even the freedom to do something that maybe you or I wouldn’t choose. Often when someone has a disability or is elderly, some well-intentioned caregivers feel the need to give care and almost baby the individual or think that they know what’s best. It’s important to honor that individual and what they want to choose. Our company first got started because my husband’s brother, Ben, has an intellectual developmental disability. And navigating the care system, they found self-direction and self-determination was really what helped him live his life.
I was working with one of his caregivers who was bothered by Ben’s desire to have Diet Coke with his cereal in the morning. She thought that was disgusting, but that’s what Ben wanted to drink and that was fine because it was his choice. Sometimes it’s as simple as asking, “What does this person actually want? What is meaningful to them? And what makes their life worth living?” And it might not be the same as you or I and that’s okay.
Gary Barg: That helps family caregivers battle the infantilization of our loved ones.
Holly Carmichael: Yes. We wholeheartedly support the ability for our loved ones to participate fully in their communities and in their life choices. That’s an important aspect of self-determination which is the foundational belief and value of our company.
Gary Barg: What would be the one most important piece of advice you’d like to share with family caregivers?
Holly Carmichael: For myself, having a daughter with an intellectual developmental disability, and physical impairments, it can be hard when your loved one is facing a disability or is needing assistance and support. There is grief for what you wish they could do or want them to do. What any parent wants for their child is to be happy, and we can do happy. We can make happiness happen. And the same goes for our elderly parents. You want them to be happy and to make their own choices and that’s a worthy goal.