Hannah Wingo cares for her son Gage, along with her husband and support from home care provider, Abigail Lacy. Wingo said many don't know how hard it can be to access state assistance. A caregiver's first hurdle might be themselves, but they'll need persistence every step of the way.
"I remember like one of Gage's therapists through the First Steps program, which First Steps is a program in Missouri for children birth to age three. And then as you age out of that, there's other resources. And I remember he was probably about a year old when she started mentioning that we should look into support through the Next Step, and we should pursue, like, trying to get Medicaid for him. And so one of the first obstacles was me because I was like, we don't need that. You know, in my complete and either state of denial or being naive, like, I just, I didn't understand that that would be our lifelong need, and we, in fact, would. To me, I love looking back at that example because it's like God is taking care of us. Like it was so perfect in the timing of like when one thing would have ended, the next thing was there to start, and that next thing was Medicaid coverage," she said. "I mean, the cost for like, his prescription meds alone was more than our family could afford on a monthly basis. And then to be able to continue accessing the therapies that help him, whether it's speech or physical therapy or occupational therapy, having some coverage for that. And now this isn't even having the waiver. There was a lot of parts of it that we didn't make use of for years, but that also helps us fund other care for Gage through our self-directed employees, and it allows us to do some home modifications that are like the ramps or the widened doorways that make care for him in our home easier."
Another thing Wingo has been able to pay for is some help. Abigail Lacey is a friend of the family with a history of providing home care. She took Wingo up on the chance to help when she heard they needed it.
"I know that having someone you know is a little easier to transition to than a stranger, so that was a little over two and a half years ago that I started working for Gage and have been here ever since and don't plan on going anywhere until my body won't let me," she said.
She said her advice for anyone in her position is to be clear about boundaries, which she said is easy with the Wingos. Lacey also said she wants people to know how little funding there is to pay for the work she does, too little to pay for all the work that really needs done.
"Because so many of the instances where I've been a caregiver have been funded from the government, I feel like there is a huge disconnect in what this is actually accomplishing," she said. "People like to look at the money, and I think when we try to value things based on a dollar, we're making a huge mistake. Culturally, if people could see in and see what it actually takes, both physically, emotionally to care for someone else who can't meet their own needs, I think the attitudes about budgets would change."
Wingo agrees and thinks the public in general doesn't appreciate how hard it is to get help and how limited that help may be.
"It's the Department of Mental Health that oversees that funding, but you can't work with them directly. You have to have a support coordinator that is assigned to your case," said Wingo. "And in Greene County, here in Springfield, it's the Next Step program. So we did work with a support coordinator. But one of the frustrating things is like, I don't think those people in those roles always have a really strong understanding of what exactly you need to do and how you need to do it. And so I felt like we were still kind of like figuring out our own way, yet couldn't directly access anything. It feels like the default sometimes is to just say, like, nope, we're not going to do that. And then there's an appeal process to go through. The wheelchair Gage is using now is something that was denied three times to be paid for by Medicaid before we got a yes answer. And then ultimately when we got the yes, it was like, good Lord, why? Why did people say no to this? This is clearly a need that he has. And you're balancing that when you're trying to get the help that you need with the hospital bills and the therapy bills and all the bills that keep coming and aren't always accurate. And so, you know, it's coming in a lot of directions. One more thing I would say is that a lot of people could look at our situation from the outside in. They could see Gage and where he was and assume, well, you'll get everything you need. Like there's there's resources for that. There's help for that. Gage would qualify for that. And I was getting told that over and over and over. And I'm like, how? Tell me the ways. Tell me who to ask. Tell me what to do. Because that's not it's not a guarantee and it's not a simple process."
Hannah Wingo and Abby Lacy are former employees of Ozarks Public Broadcasting.
Dax Bedell provided production support for this story.