Virginia Regulatory Town Hall
Department of Medical Assistance Services
Board of Medical Assistance Services
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3/30/23  10:09 am
Commenter: Anonymous

We need things to get better, not harder.
We are commenting to state that we really need to be able to keep parents as paid PCA, and real, functioning respite.
Our child is autistic, and has severe ADHD and multiple other medical conditions.  Despite this, she is a joy.  She's bright, creative, has an incredibly impressive memory, and has so much energy that it can be exhausting just to watch.  She also frequently has major behavioral challenges, sleep issues, toileting problems that require assistance (which she will only let us help with), sensory seeking and avoidance behaviors, a very high need for routine and predictability, and impulse control challenges that require 24/7 supervision to try to prevent her from eloping, causing property damage, or most crucially harming herself or others. 
So far, she has not fully responded to any of the medications or all of the other interventions her medical team has recommended, despite our fighting as hard as we can for years to get and maintain her access to these treatments.   She currently requires multiple weekly therapy sessions and many, many medical appointments in the process of trying different therapies and meds to see if any of them will work to help improve her functioning level. 
Many things that other families of kids older than toddlers take for granted, like the ability to just run to the store without risking an hours long meltdown, make a meal without having to worry that their child may run in out of nowhere, grab a hot pan off the stove, and try to throw it, hold down any kind of normal job, use the bathroom without backup supervision, or even keep everyday things like pencils or hand soap out rather than locked up are just not options for us right now. 
We are also homeschooling her because she kept coming home from public school with unexplained injuries, and her behaviors kept worsening, possibly due to trauma sustained at school.  She has communication impairments and could not tell us what happened herself.  The school refused to tell us exactly what happened or how these things kept happening, take any real steps against it happening again, or make any other arrangements to help ensure her safety, and we cannot find (much less afford) her a school placement that is willing to both meet her safety and supervision needs as well as ensure that her educational needs are actually being met as best as is possible.  When she in a good space, she does very well with homeschool.  When she isn't, we do the best we can to help her through it and try again the next day.  Meanwhile we are still paying school taxes to educate everyone else's kids (when she's been shut out) as well as the costs of homeschooling ours.
Given that we also have to be very vigilant about her frequent night wakings (when she often will try to get into things she shouldn't have, or sometimes even attempt to leave the house unattended), it gets exhausting and is not a one person job.  Despite multiple locks and alarms on the doors, my husband and I frequently have to sleep in shifts to try and make sure that at least somebody is awake as much of the time as is possible in case she does get up and decide to try and wander off.  Often we'll have one of us in the bedroom and one of us on the couch just so that she'd have to make it past both of us on her way to try and climb up and undo the locks.  She does wear a 24/7 ankle bracelet, but that doesn't prevent her from getting past the locks, it just helps buy a little more time to try to hopefully find her before something bad happens if she does.
We don't want pity, or a medal, she is our daughter and even on the worst days, we are still immensely grateful that she pulled through the NICU in her first weeks of life.  Also, we are not alone in this.  Many of the other families we know of who have kids with high support needs are in very similar situations, and have to go to similar lengths to take care of our children.  Some therapies and meds work better for some kids than others--when you can even access them--but when they don't, it doesn't always leave families with a lot of options, and we all need help.  I am here with her all the time, but again, this is not a job any one person can do 24/7.  We have to be able to take some kind of break sometimes to be able to keep doing the best we can at what we're doing here. 
We tried to find a PCA for months through consumer directed, and couldn't.  We put up ads online and through all of the local universities with special education programs, and didn't get a single applicant.  Nobody who has the training and experience to do a good job at being a PCA or even a respite worker for a child with high support and supervision needs wants to do this job for what it pays.   We do not have any kind of local family who could, or would be willing to do it.  Most of the people we interact with on a regular basis are therapists or doctors of some sort or another, our situation doesn't really much allow for going out and meeting new people, and so much of the time, people who are not living in this situation just do not get it anyway.
The option to have my husband be a paid PCA, and for him to be able to cut back some on his work hours so that he can be backup through the PCA flexibility has been a lifesaver.  It has enabled both of us to do more to try and keep ourselves healthier (including somewhat less stress about the massive financial impacts of having a child with disabilities), so that we can better support our daughter, and her right to live in her own home and community while receiving the support she needs.  We know her.  We know her needs.  I don't have any idea what we are going to do if this stops being an option.  The agencies are not functioning well and we need to be able to pay bills.  We have to drive all over the state multiple times a year just for her doctor's appointments, and it is generally not reimbursed by her insurer.  Things like social skills groups, therapeutic equipment to handle sensory needs, spectrum day at the trampoline park, most of these things are not covered without a fight (if they are at all) and even if we have the time and energy to go to battle over them, it's still not enough. 
Agencies do not have the staffing to even come close to meeting the demand.  We do consumer directed for PCA and agency directed respite.  As it is, we have only been able to get respite maybe twice in the last few months, despite a standing request that the agency send someone every weekend.  At the beginning of the fiscal year, we were concerned we might go through our respite hours too fast and not have them if we needed them for an, it seems more likely than anything that the new fiscal year will start and we'll still have a ton of hours left that we'll lose not because we didn't need or try to utilize them, but because the agencies have nobody to send. 
When they do actually find somebody, we have only had a very few workers come back more than once.  They almost never get sent here with any real idea of what her needs are or how to address them beforehand.  Almost every time it's a new person that we have no choice about, and every time I have to spend half the time explaining my daughter's needs to them from scratch.  Out of those few, it's never been more than a few times before the good ones find less demanding jobs that pay far better.  Every time that happens it's incredibly hard on my daughter.  It is very difficult for her to get used to new people and if there is someone she happens to like right off the bat, then they're just gone with no notice or explanation. Sometimes we don't even find out they're not coming until it's an hour past the scheduled time and nobody's shown up yet. She'll ask for months, when is the specific lady going to come play with her again? So then I have to try and explain to her that no, the lady isn't coming back, and no, it's not her fault--and it ISN'T her fault that most of these respite workers have zero training whatsoever in how to keep a child like my daughter safe and supervised--and then I get to take her to her therapist so that we can try to get her to stop banging her head on the wall while having a massive screaming meltdown about how she feels like she's bad and everyone hates her and why don't the ladies want to come play with her?
We've also had attendants show up smelling strongly of marijuana, had items going missing (including the contents of my child's piggy bank!), and even had one so bad we had to send her away halfway through the shift.  She behaved erratically, lied to us, was argumentative and not good with our daughter, sat there on her phone most of the time, and eventually just informed me she was leaving for lunch and took off, which as per the agency they are not allowed to do.  When we called the agency to let them know we didn't want her to come back, the aide came back banging on our door an hour later wanting to get back in our house and yelling at me through the window, while my daughter was melting down over the whole situation.  
If this is what it's like now, what is it going to be like if we are all forced to get not just respite but PCA through the agencies? 
We don't need more hoops to jump through or barriers or restrictions.  We already have a service facilitator, case managers, doctors, and therapists we are in contact with on a regular basis for support and oversight.  I understand that obviously there has to be some kind of oversight to make sure people with disabilities aren't abused, but it is insulting that parents are the ones who are assumed to need increased scrutiny rather than the agencies who hire people that are obviously untrained and totally unsuitable for the job because they have to basically take anyone they can get who says they're willing to do this work.  Who is checking to make sure the agencies are actually doing what they're supposed to?
Maybe it works out better on paper for somebody to be able to say the agencies have all these new attendants on their payrolls, but why should our family, and most importantly our daughter, be paying for that out of what should be going to her, while the state threatens to make it even harder for us to keep providing the stable help she gets from us now and puts everything in the hands of the agencies, which we already know aren't functioning well?
We're just asking, if the point of all these programs really is to serve people with disabilities, why would the state choose to make this harder, rather than truly improving things?
CommentID: 215282