NC, it’s time to do better for our most vulnerable kids!

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,

[Tonya] started by apologizing for the delay and explaining that she had had a death in her family. She said that under the directive passed down from the federal government (CMS) in June, we can only be approved for the $3000 Zoe would have had available under the waiver that spanned from July 2010 to July 2015. (That waiver allocated more than $3000 per child, but the amount given is prorated upon entry to the program, so since Zoe entered in October 2014, she was only allocated a portion of the funds that would have been available to any child in the program on or before 2010.) She called this a “partial approval” of our request for $12,000 when I called it a denial, to which I pointed out that “partial denial” seemed like better language. I asked if any exceptions could be made, at least to cover the full cost of the lift, and she said no, because of the rules set by the federal government. I pointed out to her that if we had been having this conversation prior to July 2015, I would not be arguing that we should be entitled to anything more than the $3000 available to Zoe at that time. But under every single draft DMA has put out, Zoe would have more funds available under a new waiver. Once again, the issue at hand is that the state has failed in their duty to put a new policy in place to provide for families like ours. If they had done their job, Zoe would have the funds she needs. (Even in drafts that severely cut vehicle modification budgets, the full cost of the lift would be covered.) We discussed the appeal process, which I told her we would be using, and she said I could include those concerns about the state’s failures in my appeal but that she could not make any exceptions.

I then told her that as soon as I get home, I would get her the information for the family in Rockingham who has not faced the same issues, asking her to please look into that case to figure out if an exception was made and, if so, if one could be made for us. It was at this time that I asked if you had been in touch yet and shared about the news story. She said no, seemingly unaware that the media was involved. Then I also pointed out to her that if our request had been processed on May 31 when it was received, or at any time in June prior to when CMS gave new guidance that month about only authorizing funds that were available under the old waiver and not providing any new funds, we would have been approved without problem. Based on that, I asked if she could inquire about whether or not we could get at least a partial approval of $3582 - the full cost of the lift - as we are able to wait longer for remainder of modification, which would provide a valet seat modification that would eventually allow Zoe to transfer from her chair into her seat without assistance by lowered the whole seat out of the van and to the same level as her wheelchair (which also would make transfers from her chair to the car easier on us, though it’s not a big deal right now because she’s so small and doesn’t yet have the skills to transfer herself, though we are working on those in therapy). She said she would talk to her supervisor and get back to me. I’m pretty confident that the only reason she was willing to bring it back to her supervisor is because I told her that you were involved already.

I’ll keep you posted!
— my message to Diane Wilson at ABC11

[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,

I hope your afternoon is going well. The Community Alternatives Program for Children and the Community Alternatives Program for Disabled Adults continues to operate as it has been, and vehicle modification continues to be processed according to Division of Medical Assistance policy, found here:

Public comments received during the revision of these programs resulted in the Division of Medical Assistance pausing on implementing a revised waiver to seek additional stakeholder involvement. Listening sessions are being held across the state. Additionally, stakeholder workgroup meetings and one-on-one meetings are being scheduled with individuals and families to hear feedback about these programs moving forward. You can see more about stakeholder engagement here:

In the meantime, there is no change to how these programs are operating. Please encourage your viewers to contact the Division of Medical Assistance at 919-855-4340 for assistance in receiving services under the CAP/C and CAP/D programs as they are currently written.
— email from Kate Murphy, Senior Manager of Media Relations, North Carolina Department of Health and Human Services

Diane asked for my reply, and I had a lot to say:

This isn’t honest on several counts.

First, on page 39 of the first link, “The total cost of vehicle modifications may not exceed $15,000 over the life of the waiver. It is the responsibility of the Case Manager to track the cost of vehicle modifications billed and paid in order to avoid exceeding the limit. Participants not in the waiver for the full five years will receive this benefit prorated to $3000 for each year of participation, the total amount to be used over the duration of participation. Approval for vehicle modifications is based upon medical need; there is no entitlement of services up to the program limit.” This is true. This is why, now that they have finally processed the request, they are saying Zoe only has $3000 available because she was only part of the program for that last year of the previous waiver. However, another year has passed in which Zoe has been receiving services, therefore per a strict reading of their policy combined with her assertion that everything has continued per the terms of the old policy, Zoe should have another $3000 available for a total of $6000, which wouldn’t cover all the modifications but would cover the lift, which is most pressing.

Second, the waiver was designed to run from July 2010 to July 2015. As stated throughout the policy, the budgets for each participant are based on needs over the five year period. This is based on an understanding that new needs and budgeting are needed over time for families. For example, families under the CAP/C waiver prior to July 2010 had funds budgeted for them then, and then had a new budget provided under the new waiver period beginning in July 2010. In the same way, we should have had more funds available in July 2015 but the negligence of DMA to implement a new policy has prevented this.

Third, she is being intentionally deceptive with this remark. “Public comments received during the revision of these programs resulted in the Division of Medical Assistance pausing on implementing a revised waiver to seek additional stakeholder involvement.” Here’s the reality: That feedback happened in May 2016, 10 months after a policy should have been in place. She can’t blame parents and other stakeholders for their feedback stalling this when they had already failed to do their job for months at that point. Furthermore, that draft was horrible and severely cut services, because they hadn’t included the most important stakeholders - families - in drafting the policy. Yes, they paused implementation, as they should have. If they had done what they should have, the waiver draft would have been available in January of 2015 (not more than a year after that and many months after the previous waiver had expired) so that they could gain feedback, submit the draft to CMS (the federal entity over state Medicaid and Medicare programs) in March 2015 so that CMS could approve it and DMA implement it by July 1, 2015, so a new waiver could be in place before the previous one expired.

Fourth, this isn’t completely true either: “Listening sessions are being held across the state. Additionally, stakeholder workgroup meetings and one-on-one meetings are being scheduled with individuals and families to hear feedback about these programs moving forward. “ They didn’t release the info about these sessions and meetings in a timely manner. In fact, they buried it on their website without communicating the info to families in any direct way. When a group of parents stumbled across the web page on July 5, 2016, it stated that parents and other stakeholders had to register, but no registration info was available until they requested it. The first scheduled one-on-one meetings were, according to DMA, on July 6, 2016, but families are required to register for them in advance. DMA provided less than 24 hours for this registration to happen. Even worse, they didn’t notify case management companies (who, by law, are the line of communication to families) until July 9, after stakeholder engagement had already started. That doesn’t seem like they are really demonstrating that they want our feedback, does it? Furthermore, three of the five listening sessions are scheduled after their work group meetings end. How can they honestly claim they are incorporating feedback if they are holding most listening sessions after they complete their work?

Fifth, prior to June 2016, they were approving new vehicle and home modifications up to $15,000 for vehicle modifications and $10,000 for home modifications, as if a new funding cycle for 2015-2020 had begun. This changed in June 2016, which Tonya confirmed by phone today. Therefore, it’s not true to say that they haven’t changed anything about their implementation in the past year. In other words, this is also inaccurate: “In the meantime, there is no change to how these programs are operating.”

Does that all make sense?

Feel free to forward this to them to ask for their response to any of it. I don’t think they expect parents like me to do our homework so well.
— my email to Diane Wilson in response to the statement she received from DMA

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.