We Still Need To Talk About The New DDD HNT: An Open Letter to Governor Katie Hobbs And The Arizona Legislature

Our son Tony requires 24/7 safety monitoring. He’s 14. He needs frequent reminders not to elope in public spaces and if the front door is open. We have to have a double key lock on our doors so only the key can unlock it because of that. Currently he will listen to those most of the time if he trusts the person, but he still has to be constantly monitored.

He tries to put all sorts of things he shouldn’t in his mouth, like the sharp ends of scissors, glue sticks, small counting manipulatives, water bottle caps, seltzer water can tabs…it’s actually a very long list. He’s had to be given the heimlich maneuver in the past because he got one of his counting bears stuck in his wind pipe. Thankfully, he’s been watched carefully enough that this was our only choking incident. He is a heavy oral stimmer with the risk assessment of approximately an 18 month old who will try to put several lacing beads in his mouth at a time (one of the few functional toys he likes). We have to remove any unpopped popcorn kernels from his popcorn bag because he likes to chew on them and has broken at least one tooth doing so on a missed kernel.

He needs to be constantly watched if a ceiling fan is on because he will make multiple attempts to reach up and try to stick his fingers in the blades, he’s tall enough to succeed at that. If a cleaning chemical bottle were to be accidentally left out, he might try to spray it in his mouth…we’ve managed to catch those incidents just before any chemicals made it in. He can still become dysregulated enough to engage in minor self-harming such as pulling his hair or knocking on his chin with his open palm, and he constantly needs to be monitored for that.

I could go on. He can read some words, he can spell some words. He understands both english and spanish. But he still has profound safety challenges.

Just a few days ago I met with Tony’s current DDD Support Services Coordinator (SSC). This is only the second time I met with her, Tony’s last planning meeting was covered by someone else. When I asked her what to expect from the upcoming changes for his next planning meeting with the new HNT, she stated that she hadn’t paid attention to what was being said during their staff meeting explaining upcoming changes because she had been working on something else she needed to do paperwork-wise instead. So she couldn’t really tell me what exactly would be changing or what the extraordinary review care process would look like. She stated that she anticipated at the next planning meeting that probably the biggest loss to our son’s hours from the upcoming change would be to his attendant care.

Currently he gets 41.75 hours of attendant care based on the fact that he does truly need 24/7 safety monitoring. She stated that parents could just do the work for free with their kids for the additional supports needed. She said that this was just like ordinary parenting. Let’s pause here for a second. Does what I described to you above sound like normal parenting for a typically developing 14 year old boy?

She then told me that she couldn’t find the assessment his a previous support service coordinator did for the attendant care, but that all of that support service coordinator’s caseloads were having to be reworked anyways because that worker did a bunch of things wrong and implied that this support service coordinator had given people things that she shouldn’t.

I have it in writing from that support service coordinator she was talking about who did the current attendant care assessment that we were receiving a new SSC because she had just received a promotion, an email I still have and I looked it up to verify before I wrote this post. So I’m not sure what to do with this discrepancy. I do know however, that that previous support service coordinator was more experienced working Tony’s case because she’d been on it longer (she had been his SSC for two different periods of time over the past few years) and she was much more aware of the 24/7 safety needs. They haven’t really come up in detail with this newer support service coordinator because she’s not really asked.

There was another SSC that was working Tony’s case for about a year around the time the new HNT was initially implemented, and we actually went through that assessment process at the time with her, and she had marked his attendant care at 25 hours and his hab at 14. Even the SSC that covered our son’s last planning meeting since this new SSC was out told us we would likely retain most of his hours owing to his safety needs. This newer to us SSC, however, indicated to us that we would likely see greater cuts to his attendant care hours than that and that she didn’t see that previous assessment with the updated HNT either.

This newer to my son SSC stated that the attendant care and habilitation programs didn’t exist to provide parents a job. My thoughts about this are that this isn’t about giving anyone a job, it’s about medical necessity.

I would like to reiterate to our incoming legislature what I have reiterated time and time again when it comes to funding for DDD. These hours that the parents are working as “paid caregivers” are therapy hours that were previously approved based on medical necessity for attendant care and habilitation but just weren’t getting worked because a provider couldn’t be found to work them. To do habilitation therapy or attendant care you just need to be 18 years old, pass a level one fingerprint background check, go through the 3-hour article 9 class, and have first aid and CPR certification. That’s it. You do not need a specialized degree. So in hiring someone else, if someone else can be found, that doesn’t mean they’re actually more qualified. I would imagine that some of these parents know more about therapeutic approaches for working with their child because they’ve had to.

The last two habilitation providers that were placed in our home with our current organization had never done this before, had no experience in therapy, and needed total training in all techniques, provided by me. The last one three months in I was still having to demonstrate every task because this individual wasn’t remembering what to do. They quit shortly after that. The messaging from the support service coordinator in this last meeting seems to be saying out loud a quiet part given this that I personally had wondered about. Basically now I’m being told that care he has medical necessity for needs to be provided by me for free. Voters turned out in massive numbers for this past election in part because in this economy, nobody can afford to do that. Literally it would mean that a parent cannot work outside of the home for that to happen with a kiddo who has the level of need our son has.

Those hours were approved based on his level of need, not because anyone was asking them to employ the parents doing this. Other children would have been approved for their hours either way based on medical necessity, it’s just they may have gone unworked as well for lack of a provider to be found before the parents as paid caregiver program was implemented, and this type of program had already existed in other states before Arizona moved to adopt it as well.

This newer to us SSC told us that many parents don’t document as well as I do and they just can’t verify what is really being done with those hours and that’s part of why services need to be restricted for everyone at this time. My husband and I were talking about this, and he felt like then the appropriate remedy then would be to address potential removal of hours from individuals who aren’t documenting session notes appropriately and that does make more sense than just blanket targeting everyone.

On eloping and safety scanning, I had been told by a previous BCB A that those tasks could not be mastered out until they reached 100% without prompts and without reinforcement because of the attendant safety risks. We are nowhere near that. This newer SSC said that no, DDD will now want that mastered out at 80%. Does that mean for that other 20% it’s ok if he gets out of a home, or runs off in public, or gets hit by a car because he’s not fully there yet?

When I mentioned the guidance from that BCBA, who was administering care under DDD at the time, this SSC indicated that of course we’re going to have to still keep working on it, they will just master it out as a goal. If I have to still keep working on it, it’s because you can’t consider an important safety skill to be obtained until it is at 100% and they’re just basically saying we no longer want to pay any one to work on this essential skill and we are now expecting you to work on it for free. On any giving outing into the public, our son needs multiple reminders to stay with me (usually 10 or more for a 30 minute outing). And the good news is he’s actually doing it, whereas in the past he wouldn’t. But he still has to be constantly watched for not walking off.

On the elopement goal in the house, somebody still has to be reminding him can’t walk out the front door and we still have to have a double keyed lock on the door because you can’t trust that that’s actually what he would do is stay in the room if you weren’t in the room because he will still try to walk off without regular reminders or try to do something he shouldn’t when a parent is in the bathroom.

We have been told we can try to get more of the hours he needs by going through the new extraordinary care process. I feel that parents who have been unable to find another provider to work with their child for attendant care and habilitation are going to be at a particular disadvantage potentially for this review process when it comes to the clinical documentation portion as they have been the main person in home and their word will be discredited as being just the parent. Those safety needs still exist, it just appears to me to be a possible excuse to distance the state from any sort of financial responsibility for assisting in the care thereof.

Tony had 9 months of safety data taken in the school that was taken and added as an addendum to his final IEP which is a legal document that we are planning on including in our documentation, but I am still waiting for input from his new SSC as to what kind of documentation they will be looking for because she didn’t know. We may ask for statements from his previous teacher. We definitely will involve his developmental pediatrician (she is well aware of his safety needs) and his in home OT and his current ESA teacher.

The discrepancies between what the four different support service coordinators we have spoken with about our son over the past year have said as to the level of attendant care he would receive without the extraordinary care review under the new HN T was a little bit concerning to me and left me feeling like this process might be heavily influenced by the personal opinion of the current SSC and not medical necessity.

If we are really looking at budget explosions and areas of overspending, maybe we should go back to limiting ESA to families with disability like it used to be as that spending has also gone through the roof. I think that could allow for more of the funding necessary for those with developmental disabilities. I realize I can’t do your job, but I am hoping that what you will take from this long, rambling open letter is that there are medical necessity needs behind those services, and it shouldn’t be framed as parents abusing the system.

Those budgets were being met before this program because people like my son couldn’t find providers to cover them. 30 of the 40 hours he was approved for based on medical necessity weren’t being worked for many of the years he was approved before the parents as paid caregiver program was announced. Even now with the hours he has, if I wasn’t working them, they would go unworked. This isn’t just like raising another kiddo, and nobody should frame this level of need as the same thing any parent would need to do.