My daughter Zoe is a delight. She loves purple. She can sing most of the words to Hillary Scott’s Thy Will, Frozen’s Let It Go, Taylor Swift’s Bad Blood, Daniel Tiger’s If You’re Sick, Rest Is Best, and David Guetta's Titanum. (Her music tastes are nothing if not varied.) She likes to boss her siblings around, and she thinks it’s hilarious whenever someone falls down. Also hilarious to her are knock knock jokes and poop humor.
Oh, and she has cerebral palsy, doesn’t walk or sit independently, and requires full support for almost all activities of daily life. As such, she qualifies for CAP/C.
As I shared in a Facebook post making the rounds, years ago North Carolina created a Medicaid waiver program called CAP/C for medically fragile kids. While the care provided to each child through CAP/C is expensive, it was designed to save the state money and care well for kids by keeping them out of institutional settings. The full name of the program - Community Alternatives Program for Children - even tells a bit of that story. The program is meant to provide community-based alternatives to residential care. Our daughter Zoe qualifies for CAP/C and has received services for nearly two years.
CAP/C has been operating on 5 year waiver cycles. The last waiver expired in July 2015. (Yes, you read that right. 2015.) Since then, the state keeps offering new dates and then those deadlines pass. A month or two ago, you might remember a flurry of news articles about the draft plan they put out, which would have severely cut services to kids and been detrimental to families. They say they're listening and withdrew that plan, which was good, but? Now we still have no plan in place. There's still no new legislation to replace what expired a year ago. Families are being served under the old waiver, but some services - like vehicle modifications - are frozen or limited for now.
Let me word this another way: Because our state government can't or won't do their job, families are being penalized.
In the image above, she had just gotten her purple chariot, aka her motorized wheelchair. So far, the chair hasn’t left the house. We don’t have a lift yet for our van, so she can’t take it to larger places than our home to practice, much less to church or school. Most of her physical therapy IEP goals for next year are based on using her motorized chair at school. We're even changing her school placement to a larger location from a smaller one to better accommodate the chair. But we can't get her chair to school or church or larger spaces to practice without a lift for our van. So it's stayed home since its arrival in January.
Under CAP/C, getting a lift for our van should be no problem. Vehicle modifications are a service covered by CAP/C. But there’s not a new waiver in place. Because of that, they're refusing to even process our vehicle modification request, which means we don't even have a refusal to appeal. The request has been sitting and waiting for more than a month. We're stuck, and our kid doesn't have what she needs, because for the past 12 months, the state has failed to do their job to put a new waiver in place.
This isn't okay. This isn't acceptable. On my watch, this isn't going to continue.
Ironically, earlier this year after we had gone more than 90 days without staffing Zoe's in-home health care aide - a provision covered by CAP/C - DMA tried to remove her from the program. We appealed, taking the case to court, where we learned in cases like ours, law places the burden of proof on the family while the state has the resources and controls every aspect of the process. That didn't strike me as fair or family-centered, as CAP/C claims to be, but my summer job as a legal assistant in college served me well as I prepared briefs of my own - citing both current law and the proposed draft at that time - to support our side. Ultimately, on the day we were before the judge, DMA and the assistant district attorney representing their case asked for a settlement discussion prior to presenting the case. So the judge stepped out, and they conceded that I had provided sufficient documentation so they were reversing their decision to threaten Zoe's position in the program.
In other words, a few months of delay in filling Zoe's home health staffing meant a months-long court battle with the state. But a year of delays from the state means we're supposed to just wait patiently with no recourse. That's why I'm speaking out now. The double standard is appalling.
(Furthermore, I didn't feel like I could speak out before because they were trying to remove my child from the program, and she needs and deserves those supports. We didn't want to rock an already rocky boat. And our efforts in the appeal meant we didn't even have the time to start working on the vehicle modification request - which requires a long process of the family getting a minimum of three similar quotes from state-approved vendors who are notoriously hard to contact and work with - until after we won our case.)
If you're in NC, contact anyone you can in the state government - the governor, state senators, state representatives, the NC Division of Medical Assistance (DMA) office which is part of NC Health & Human Services, anyone - to ask when the state plans to meet a deadline that passed 12 months ago to reinstate full CAP/C services to help our state's most vulnerable kids. This is NOT okay.
This is my daughter Zoe. She deserves better than this.
Update 1, July 19: We were told yesterday that our county's nurse consultant from DMA told our case manager that in June, the federal government - which, from what I understand, provides some of the funding for CAP/C - stated that everything in queue has to be approved under the previous waiver's approved amounts with no new funds available. As such, while Zoe should have a full budget for this cycle, she's limited, they say, to $3,000. (That said, we don't even know if that's accurate or not, because our request hasn't even been processed in more than a month. So it hasn't been denied, which means we can't appeal.) Meanwhile, a mom from another county just contacted me through Facebook to share that they began their van modification a month and a half ago and just dropped it off for the work to be done this week, having been approved for around $18,000 in modifications. (Meanwhile our full request, for the lift as well as a valet seat which would allow transfers to go more smoothly and - ultimately, hopefully - be more independent for Zoe without our help as much, is for $12,280, of which $3,532 is the lift. So if we only got the lift at this time - which is the more pressing need - then we're only fighting the state over $532. But, again, since our request hasn't even been processed, we don't even have the promised $3000 available to us.
Sigh. C'mon, North Carolina. This shouldn't be so hard.
Update 2, afternoon of July 19, 2016: A few news outlets are showing some interest in possibly doing a story about this. Nothing is firm yet, but I'm totally game for that. I hate to have to make some noise to get the state to do what they should, but I will if I have to. I'm speaking up not only for Zoe but for so many other kids whose parents might not be able to do so, because of lack of time for working parents or lack of education for those who don't even know they can challenge the state or any other reason. All our kids deserve better, not just Zoe.
Update 3, afternoon of July 20, 2016: Diane Wilson, aka the Troubleshoot for ABC11 News, just left our home I'm not sure when the story will air, but I'll keep you posted. She was a delight to work with.
Update 4, late morning of July 21, 2016: Tonya, the nurse consultant at DMA assigned to our case, called me. Moments later, I messaged Diane at ABC11 to update her, writing,
[Note: As of July 26, Tonya has NOT gotten back to me about what her supervisor said. Considering her supervisor, Sandra, should have reversed DMA's decision to attempt removing Zoe from CAPC at the time of our mediation months ago but instead was combative during that mediation call and then persisted in pushing forward to wrongfully remove Zoe from CAPC, I'm not surprised or hopeful that she will provide any help here. The assistant attorney general assigned to represent DMA in our case against them was the one who ultimately convinced Sandra that they had no case and should reverse the decision to remove Zoe from CAPC. Given my interaction with her during that case, I do not trust that Sandra upholds the principle of family-centered planning which is foundational to CAPC, according to their manual.]
Update 5, early afternoon of July 21, 2016: Diane replied that she had made an inquiry regarding the story at 3:53pm on July 20. (I have a copy of this email.) As such, she found it very hard to believe that Tonya was unaware of the news story. I remembered that something about Tonya's tone from the beginning of the conversation made me think she had to know about the story. I also remembered that I had asked Tonya if Diane Wilson from ABC11 had contacted her, and while her answer of no was technically honest, it was intentionally misleading, offering the implication that she didn't know about the story.
Update 6, later afternoon of July 21, 2016: Diane emailed me the response from DMA. It stated,
Diane asked for my reply, and I had a lot to say:
Update 7, July 25: Our story ran on ABC11 tonight. I think the story was fabulous, and I'm thankful Diane Wilson's involvement got us an answer from the state. That said, I have a few points of clarification:
- It's not true that the full cost of the lift was approved. The lift will be $3532, while the partial approval is only for $3000. We're still facing a $532 gap that wouldn't exist if the state had done their job by having a waiver in place back in July 2015 when the old waiver expired.
- That said, we did get the request processed, whereas before Diane got involved, we were being denied due process by the state as our paperwork sat unprocessed. Diane was told my DMA that this was an isolated issue with our nurse consultant, but that's not what I'm hearing from families across the state. Our story is not a unique one. Our state is letting families like ours down.
- At the end of the segment, the news anchor challenged viewers to imagine the families who are left waiting and don't have the resources to connect with the media to have their story heard and the state's hand forced. I wish they had made a bigger deal out of that. While part of our fight is still over (though our appeal means a new fight has begun), every family - not just the ones with our privileges of having a blog with wide enough readership to get attention - should get what their kids deserve under this law.
Here's the article, and the video can be found below.
Update 8, July 26: Someone kindly asked on the ABC11 Facebook page if we had a GoFundMe page set up for Zoe. Another friend commented offering to donate toward our vehicle modification needs. Our reply was, "Thanks for asking, but we're confident we can push to get funding through already established channels, so we'd rather not benefit from donations when others families are truly in need and with no other recourse. We've been the recipient of generosity from others in the past, so we're not opposed to receiving! We're just trying to hold the state accountable to providing what they've promised, not just to our family but so many other families in need. A fundraiser could meet our daughter's needs, but 2200 kids like her are served through CAPC, so we're fighting for all of them." And that's exactly what we'll do. I have the knowledge, resources, tenacity, and time to fight for my kid. Some parents don't have those privileges, so I feel passionate about using my voice and advocacy to benefit all medically fragile kids in NC.