our first experience with a home health provider
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I know not all kids qualify for in-home care due to their disabilities, but some do. Zoe does.
I tried to search blogs of other BTDT (been there done that) mamas to get advice before we started, and I realized almost no one talks about this in public spaces. So I'm donning my truth teller hat to talk about what this has looked like for us thus far.
Zoe's level of disability qualifies her for CAP/C services in North Carolina. Here's how that program is described by the NC Department of Health and Human Services, which oversees CAP/C:
So what does that mean? CAP/C services include case management, home health care, and supplies. The case management means someone helps to answer my questions and make sure we have what we need. The supplies include diapers delivered to my door - yay for not having to pay directly for those anymore! - and an adaptive trike of some sort every so often and a few other things. The home health care gives a certain number of trained caregiver hours each week, the level of care determined by the child's needs (Zoe gets the lowest level - CNA - while some kids need nurse level care) and the number of hours based on a combination of the child's needs (mainly, is overnight monitoring necessary? no, not for us) and the parents' work schedule (because paid childcare is often unavailable or unaffordable for kids with complex needs).
And then the biggie for us - CAP/C coverage also makes a child eligible for Medicaid coverage, not based on income but on disability, which means all the therapy needs Zoe has can be covered despite the annual caps set by our private insurance. She needs weekly private therapies, so we need that coverage to give her all she needs. (If you're a numbers sort of person, Zoe is allocated 30 visits a year of PT & OT - not each, combined - but she needs PT three times a week and OT once a week outside of school, so the gap is wide between what is covered and what is needed before Medicaid.)
Our home health provider started a week and a half ago. It's been weird, for sure. I'm a stay-at-home mom, and having another person there to support Zoe is a huge help but also a huge change. Zoe is playing more and watching TV less, because someone is readily available to help her move and play and be a typical three year old in all the ways she wants but her body doesn't allow without assistance. I really like Tina, the CNA we hired, and it felt pretty natural and not as awkward as I thought it might. I felt like she was as good a fit for us as we could have asked for, and all of the kids adore her.
All except for Zoe, that is, which is why yesterday was Tina's last day with us.
Our plan from here on? We're taking a break for now, and then we'll find our own people who Zoe already knows and trusts. Our friend Kayla is getting her CNA and will work for us this summer while she's home from college. Then our friend Meghan, who is a student at Meredith and who hopes to be a child life specialist in a hospital setting, is planning to get her CNA too so she can work with us during the school year. Even my bestie Angie is probably going to get her certification.
Should we have tried harder to make it work with Tina? Some would say yes. I think Tina thinks we should have. But the reality is that Zoe joined our family by adoption after never having parents care for her before us. She had to learn to trust us and attach to us. She does fine with caregivers and teachers when we aren't present, and I know she would have done fine with Tina if I wasn't at home too. But Zoe knows now who Mama and Dada are. She knows our role. She knows the access she has to us. And she doesn't want someone else filling that role, which is what it seemed to her like Tina was doing.
So was the extra support helpful? Sure. Will it be more complex to coordinate that help with friends whose availability will fluctuate instead of with an agency that sets hours? Yes. But nothing is worth damaging the hard-fought attachment she has with us. Nothing.
Sometimes the harder road is the better road.
I tried to search blogs of other BTDT (been there done that) mamas to get advice before we started, and I realized almost no one talks about this in public spaces. So I'm donning my truth teller hat to talk about what this has looked like for us thus far.
first, let's back up a bit to explain the program itself...
Zoe's level of disability qualifies her for CAP/C services in North Carolina. Here's how that program is described by the NC Department of Health and Human Services, which oversees CAP/C:
The Community Alternatives Program for Children (CAP/C) provides cost-effective home care for medically fragile children (through age 20) who would otherwise require long-term hospital care or nursing facility care. The program contributes to the quality of life for the children and their families/caregivers, while providing care that is cost-effective in comparison to the Medicaid cost for institutional care.Because Zoe has no independent mobility skills (i.e. walking, crawling, scooting) and no functional life skills (ability to dress herself, to feed herself without assistance, to be potty trained anytime in the foreseeable future, or to be bathed the same hands-on support that babies need), she qualifies. A few months ago, she was approved, retroactive to her third birthday (which happened to be the day all of her paperwork was submitted).
So what does that mean? CAP/C services include case management, home health care, and supplies. The case management means someone helps to answer my questions and make sure we have what we need. The supplies include diapers delivered to my door - yay for not having to pay directly for those anymore! - and an adaptive trike of some sort every so often and a few other things. The home health care gives a certain number of trained caregiver hours each week, the level of care determined by the child's needs (Zoe gets the lowest level - CNA - while some kids need nurse level care) and the number of hours based on a combination of the child's needs (mainly, is overnight monitoring necessary? no, not for us) and the parents' work schedule (because paid childcare is often unavailable or unaffordable for kids with complex needs).
And then the biggie for us - CAP/C coverage also makes a child eligible for Medicaid coverage, not based on income but on disability, which means all the therapy needs Zoe has can be covered despite the annual caps set by our private insurance. She needs weekly private therapies, so we need that coverage to give her all she needs. (If you're a numbers sort of person, Zoe is allocated 30 visits a year of PT & OT - not each, combined - but she needs PT three times a week and OT once a week outside of school, so the gap is wide between what is covered and what is needed before Medicaid.)
our home health care experience so far
Our home health provider started a week and a half ago. It's been weird, for sure. I'm a stay-at-home mom, and having another person there to support Zoe is a huge help but also a huge change. Zoe is playing more and watching TV less, because someone is readily available to help her move and play and be a typical three year old in all the ways she wants but her body doesn't allow without assistance. I really like Tina, the CNA we hired, and it felt pretty natural and not as awkward as I thought it might. I felt like she was as good a fit for us as we could have asked for, and all of the kids adore her.
All except for Zoe, that is, which is why yesterday was Tina's last day with us.
Our plan from here on? We're taking a break for now, and then we'll find our own people who Zoe already knows and trusts. Our friend Kayla is getting her CNA and will work for us this summer while she's home from college. Then our friend Meghan, who is a student at Meredith and who hopes to be a child life specialist in a hospital setting, is planning to get her CNA too so she can work with us during the school year. Even my bestie Angie is probably going to get her certification.
Should we have tried harder to make it work with Tina? Some would say yes. I think Tina thinks we should have. But the reality is that Zoe joined our family by adoption after never having parents care for her before us. She had to learn to trust us and attach to us. She does fine with caregivers and teachers when we aren't present, and I know she would have done fine with Tina if I wasn't at home too. But Zoe knows now who Mama and Dada are. She knows our role. She knows the access she has to us. And she doesn't want someone else filling that role, which is what it seemed to her like Tina was doing.
So was the extra support helpful? Sure. Will it be more complex to coordinate that help with friends whose availability will fluctuate instead of with an agency that sets hours? Yes. But nothing is worth damaging the hard-fought attachment she has with us. Nothing.
Sometimes the harder road is the better road.
so this is not the post I thought I'd be writing
I thought I'd be sharing about how we manage life with a home healthcare provider - how life has changed, how it's stayed the same and how we're all adjusting. But that's not our story just yet.
Our story now is one of sharing how these beneficial services are working - and not working - for us right now. I've written before about accepting government services in a world that often judges or shames people for doing so. I think part of being a truth teller is standing up and saying, "Hey, y'all, we're the ones you're talking about here. We're not some faceless, nameless stranger whose story you think you know. We're flesh and blood and brains and heart, and the current state of healthcare in this country means that kids with disabilities - like our Zoe - need some public supports to have all their needs met."
Because she's worth it.