A mother enters a world of utter madness seeking nonexistent “community supports.” She tells her story — and suggests some solutions.
By Jacquelyne Kancir
In a home in an all-American subdivision in middle Tennessee, huge holes are kicked into the bedroom walls. The neighbors wake to loud wailing all hours of the night. The dogs having been hit before, know to exit the room as soon as they hear the energy rise in anyone's voice. Mom is bruised on her legs and arms, her scalp still sore from her hair being pulled the day before. The family's 17 year-old daughter is bruised, too, mainly on her arms, where she bites them in fits of rage, and she often says her foot hurts, likely so, after all the kicking she's done of walls, door jams, people, tables, dogs, cupboards, or anything else she can find in her path. Two nights ago, the respite worker stopped the daughter from jumping off the back deck balcony.
This might sound like a story about domestic violence, but it's not. It's a psychiatric medical crisis of an adolescent who has a severe genetic disorder called SYNGAP1, which caused Lennox-Gastaut Syndrome (intractable epilepsy), severe autism, profound intellectual disability, hyptonia and neuromuscular disorder, sleep disturbances, swallowing disorder, and yes, severe aggressive episodes.
This family is in crisis. This isn't the first time. Every year around the same time of year, they've met the same circumstances. This family is my family.
Because it can appear from the outside like a criminal domestic dispute, families are reluctant to call for help. In our city, you cannot get EMS response without police escort for these calls, even if you refuse the police escort. Recently, one of our providers reached out to a local officer proactively to discuss the situation in our home and what an appropriate response would look like if we had to call for help. He asked why we hadn't thought of admitting her somewhere. (I'll get to that next.) It just goes to show that this isn't the police's fault when they treat these situations like criminal disputes because no one has filled them in on the canyon size gap in services to this demographic. Even the police believe we have someone, somewhere to call for help if it's truly medical.
Two years ago, we transferred her out of state to Georgia in a desperate attempt for stabilization to a center recommended by crisis support. At that center, she was bitten, hit, pushed down, smacked, left unattended at least an hour, and kicked by other patients. We had to work diligently to have our daughter released as soon as we realized the advertised ratio of 1 staff to 2 patients was in reality 1:8, that it was a co-ed unit. Our daughter was placed on a unit with adult size males who had just as much if not more raw explosive aggression as she did. The staff could not keep the patients safe from each other on those ratios. It was one more let down in a long line of trying to find solutions for our daughter.
Last year, our daughter shattered a 55" tv in a rage. She's head-butted me so hard I've had to eat soft foods for days. The doctors and I called every facility in the state of Tennessee last year this time of year trying to find an acute stabilization for the child in crisis. Every single one denied admission.
◦ Has to be seizure free 30 days. (Most kids with LGS never go 30 days seizure free in their lives. Their seizures are managed, though, as hers are.)
◦ Has to have an IQ above 50 or even 65. (Hers is <20)
◦ Must not be dependent in ADLs (She needs assistance toileting, bathing, brushing teeth, dressing, eating, and at times, walking/transferring)
◦ Must have the cognitive capacity to reasonably keep herself safe from other patients. (Isn't that what staff is for?)
Tennessee does have psychiatric units, even adolescent psychiatric units, but those are suited for substance abuse, sexual abuse, depression, people who are otherwise healthy and functioning well. Tennessee does not have a single bed in a single facility set to allow treatment for someone with complex medical needs, someone with both psychiatric and physical medical needs, a neurobehavioral psychiatric stabilization unit. Not one.
Parents are told over and over — by doctors with a full 24/7 staff of medically trained people, fully stocked pharmacies on site inside facilities set up with coded doors to prevent elopment, and padded walls to prevent injury — that they aren't equipped to handle their child. So parents with none of those things, maybe even with just a high school education or not even that, with no resources, are told to just "keep doing the best job you can. We're sorry. We can't help you."
So the home gets more holes. The neighbors hear more wails. The siblings and parents become more traumatized. The disabled person who desperately needs medical treatment continues to decline in emotional dysregulation and escalates the aggression more and more.
You may be thinking, there must be something for this demographic, right? Tennessee claims there is. They call it the Employment and Community First waiver (ECF). ECF on paper looks very promising, toting of in-home and in-community support, parent training, respite, home modifications, assistive technology, all kinds of things. However, ECF has a significantly inadequate provider network. Parents sit on the program approved for years without a single hour of support because "sorry, we're still looking for providers." Most disturbing, when the year runs out, and the allotted budget hasn't been spent because the family sat another year with "no providers available," that money doesn't roll over to the client the following year. It gets to "roll into funds". What funds? No one seems to have a concrete answer they're willing to share with me on that. Sounds like an audit is needed to ensure there aren't people profiting off leaving these families in crisis. As it stands, if they get through a year with a client allotted $15,000 in a budget, but only spend say $5,000 on other things, they get to roll that $10,000 somewhere else, wherever else, it's not to the client. Times that by thousands that are on the ECF waiver, and you are looking at millions of dollars that were intended to help to prevent crises like the one we're in just "rolled into funds" somwhere else, not to the client.
As it stands right now, we're treading water to survive. For months our nursing agency was only able to staff 8 of the 20 hours a week we are approved for CNA coverage. They did just recently hire a second CNA, so hopefully that lasts. The doctor ordered 40 hours. The insurance company only approved 20. ECF does not allow any CNA coverage on their waiver, only uncertified personal attendants. CNA coverage has to go through insurance. My daughter's medical complexity requires no less than CNA-level care. We just received another letter of many from ECF that our community integration hours are approved but it "may take longer than we'd like" to get it started since they are "still looking for providers".
Our home modifications were "approved" but as assistive tech, not home mods. Home modifications is a separate budget ($6,000 per project, $10,000 per year, $20,000 per lifetime), not to be taken from the annual $15,000 budget. Assistive tech is in the annual budget. So if they get to use almost $6,000 to install mats on her walls so she no longer kicks holes in them and claim it is assistive tech, then when I continue to complain she hasn't received a single hour of community integration, they get to say, "Oh sorry, you used up your budget on the mats."
Can anyone out there in internet land explain to me how stable mats screwed into a wall that don't light up, don't make a sound, do nothing but stand there are technology assisting her? Assisting her in what? What exactly is she going to be doing more of with mats? Assistive tech is actually things like her AAC communication device, a propriety device that talks for her, something we had to go through insurance for, not ECF, because it would have been beyond her budget in ECF. No, permanent mats installed on a wall is a home modification. Period. So, we still don't have mats on the walls.
They denied increasing space in the bathroom for us to successfully assist her toileting. The CNAs and I are still squeezing into a tight space. They claimed that was a "home remodel". It would actually devalue my home, not improve it, and is solely to make caring for her easier. Yet, hey, if we wanted them to remove all the walls and the tub, they'd put in a walk in shower for us. Huh? She can't stand some days. We have to use the tub still. I don't want a more expensive walk-in shower. I wanted space to toilet her. This is the madness parents face trying to even use the ECF waiver which is touted as our saving grace. It's anything but.
And when you call them on this kind of garbage they dish out, you're just labeled the difficult parent. Well, I guess I could be called worse things. Yes, yes I am difficult because I'm not just going to roll over and stay silent while my child is in crisis over and over because the services she's supposed to have so she can live a safe quality life are never filled. If that makes me difficult, call me Queen Difficult because I will never stop this fight until she has the services she needs. She doesn't deserve this. We don't deserve this. Our children don't deserve this. And there are people making salaries in positions with missions to make it so we don't have to live this kind of life. Do your job.
𝐒𝐎𝐋𝐔𝐓𝐈𝐎𝐍𝐒
1. Develop a national code system for police response. (Like "Code J") One that would let officers know that they are responding to someone who is developmentally delayed in psychiatric distress, that it is not a criminal domestic dispute, but that they are to allow EMTs in to do their job and administer medication to sedate the patient, that the patient may not respond to commands, not because they are resisting arrest, but because they are cognitively incapable of understanding nor do they have the verbal ability to respond reliably. They are not to be questioned, simply treated by EMTs and transported to the hospital. Police are only there to keep EMTs safe and may use force only up to restraining the patient, nothing lethal. Because many of these patients may have pace makers or other complex medical needs, stun guns should not be used. Additionally, police should be made aware of this major gap in services so they understand coming into the situation that the person may be in need of hospital admission but there are no hospitals willing to accept the patient. Employ a social worker on call (literally on a call, not needed in person) to help advise police in deescalating the situation if necessary.
2. Parents and in-home CNA staff all should have free CPI training made available to them through the ECF waiver. I've repeatedly asked for this, but they've "been unable to find anything". Another nugget written on paper I should receive but don't. Crisis Prevention Institute courses provide training on effective verbal deescalation and safe/humane restraining methods. Nursing agencies need to put in place an SOP for when a client becomes aggressive while staff is present. Currently staff have no SOP.
3. Wages need to be raised for direct support / CNA who work with severe psychiatric cases. Use the same model as nursing homes do for memory care units. Pay them a higher initial wage for taking the harder cases. They should be paid no less than $15/hr. Many are paid $8-12 currently. They can make more started at White Castle flipping burgers. This is a disgrace. They also need premium health coverage, as this is a job hazard. They need access to chiropractors, physical therapists, and even counselors to help cope with the stress of their job. If they are in-home providers, they should be paid mileage also. Doing these things will greatly improve the adequacy of the provider network.
4. Increase the budgets for the waiver. Tennessee has deinstitutionalized. There are no facilities to place those deemed to need facility-level care. Instead, they are supposed to be receiving equal or better than care they'd have received in an institution but in their homes and communities. The national average for in home health aide per month is $4,576, the national average per month of adult day health care is $1,603/month, according to a Genworth study. Thus no level's budget should be less than that x12, which is (4576+1603)x12=$74,148. That's what is needed to provide facility-level care in the home and community.
5. Establish ratios. Just as a day care center may have a ratio of 1:4, or a hospital may have a ratio of 1:7, establish ratios for ECF. The provider network MUST maintain at least 1 provider per mild-moderate client and must maintain at least 2 providers per severe client. Initiate mandating, just as a hospital would. Can you imagine going to the hospital and them saying, "Sorry, no providers today, you're going to have to set that leg yourself and stitch yourself up,"? Not only ensure that each client is staffed at all hours approved, but increase staff to two per client for the severe cases. My daughter is a two person job. I use my respite hours not to go grab a drank with friends. I use it to have a second set of hands to help me even get her in the shower. Presently, we are limited to one staff only...if you can ever even find that staffed.
6. Streamline the home modification process. Bring in experts in the field to train ECF on what are appropriate home modifications for this demographic, beyond their go-to walk in shower. ECF should have a list of things that are easy to have approved because they have been deemed useful and an improvement to independence and/or safety, such as guardian angel bars for windows, coded locks for exits, padded walls, etc. ECF should have a list they provide parents of contractors familiar with the process so they can call for bids easily. ECF should have a list of Occupational Therapists willing to come to the home to do the evaluation to determine what's needed. Stop asking parents, "Well what kinds of things do you want?" This isn't about what we want. It's about what the client needs. Parents aren't OTs. That's for an OT to decide. Let me repeat that. That's for an OT to decide. Once an OT submits a report, insurance companies shouldn't then just rip it to shreds and determine it isn't needed. Once a doctor, many doctors, renown doctors, order 40 hours a week of care is needed, insurance companies shouldn't just get to rip it to shreds and say 20 is enough.
7. Develop neurobehavioral psychiatric units, ones for adolescents and ones for adults, at least three spread out in the state of TN for acute crisis stabilization.
8. Mandatory Police Force Training. Once a year, every person in blue should be required to attend a training session that educates them on current resources (and the lack thereof) for the patients with the most severe complex cases. Many officers currently DO NOT KNOW that we can't just call to put her in a treatment center. They DO NOT KNOW the state has left these clients out flailing with no support options. So they come into a situation thinking it must be domestic because if it was medical, the parents surely would have put the client in a hospital already.
Jacquelyne Kancir is the mother of a 17-year-old daughter with the genetic disorder SYNGAP-1. You can see a recent interview with her at Voice for Joshua here, and read her Facebook blog, “What we need yesterday.”
