My 19-year-old daughter is profoundly deaf and severely impacted by autism and developmental delay. She’s been in supported living for the past three years – a single home that whole time, with one housemate in the other bedroom, run by an agency licensed by the state for her care. This past summer we experienced one of those incidents that I live in fear of at most times – fear kept tamped down to levels that don’t interfere with my everyday life, but still always calling out “present” when I check to see if it’s maybe taken some time off for a bit.
I had her out on her favorite Sunday lunch outing, a fast-food spot where she eats “cheese grilled sandwich french fries” as she invariably types into her iPad TouchChat app. It was just the two of us that day, and she was in one of her best moods, wide grins and lots of interactive communication about her new swim lessons on Thursdays and tomorrow’s planned outing with her grandparents.
While we were sitting and waiting for our order, a young woman came out from behind the grill – I recalled her from the cash register at previous visits, and she obviously recognized the far more memorable us. We’d never spoken before, though, and she started by asking if I was “her mom,” pointing to my daughter. “She was here last week,” the young woman told me, “with another girl who was, you know, disabled like her, and two older women with them.” She added descriptions that were clearly of my daughter’s housemate and some staff members. “I wasn’t happy with how the girls were being treated,” she then said, and paused, uncomfortable I think with saying more than I might want to hear. “Could you tell me more?” I asked, through the haze already rising up in my brain, hot and choking.
Pushing, shoving, impatience, food gone uneaten and taken away from the girls. “And you know how sometimes she” – pointing to my beloved girl – “kind of shrieks and flaps her hands really fast?” she asked. In fact, she had started doing it now, in happy anticipation of our meal. “Well, one of the staff people hit her up the side of the head when she did that
Always, always, my first focus in any situation is on my daughter and what she needs in that moment. Even though what I needed was to Get. My. Hands. On. Those. #%$!&$, what she needed was to unwrap her soggy white bread grilled cheese sandwich and gleefully peel away the crusts to eat first. She needed to carefully fill a cup with as many french fries from our shared order that she could, and place it out of my reach for her later attention. And yes, she needed to whip her head back and forth, flap her hands and let out a few shrieks as the meal progressed, just to express her excitement.
By the time these immediate needs of hers had been met, I’d honed my response down to the phone calls I needed to make right then, to figure out the next 24 hours and how to keep my daughter safe. This process was complicated by the chronic management upheaval at her home – there was currently no house manager in place, and the new “program director” (who oversees two or three houses run by the same agency) was literally starting in this position the next day, Monday. I had only met her and been given her phone number the week before.
The bare bones story of the weeks that followed include these scenes: my daughter “sleeping” (ha!) at my home Sunday night, because (I was told) there was insufficient proof to remove the staff in question from her home. Me waiting at the police station to file a report on Monday morning, and explaining to the officer in reply to his question that no, there was no possible scenario where physical restraint or coercion would be appropriate in caring for my daughter, even if she is developmentally disabled. It being safe for her to return home when the staff in question were finally suspended. The phone call where I learned that the hoped-for video confirmed the group’s presence at the restaurant on the reported date, but that the camera turned to their table was broken and there was no footage to “prove” what had happened.
What we ended with was two people’s word (two staff at the restaurant) against two others – the house staff who insisted that the whole story was a lie. Unless my daughter or her housemate could describe, themselves, what had happened that day, the case was closed
The supported living agency had conducted its own “investigation” and we met with them to hear their findings. “She didn’t want to eat her hamburger,” began the bigwig regional supervisor whom I’d never met before but who emerges in full defensive mode to run these conversations.
(“Why did they get her a hamburger??” was my younger daughter’s first question when I caught her up on what I’d learned, later that day. “Exactly,” I said.)
“Why did they get her a hamburger?” I asked the bigwig supervisor. “My daughter would never order a hamburger there.” Bigwig said there had been “miscommunication” and “misunderstanding” but “everyone meant well” and “there was no wrongdoing.”
I called bull!*@#, in so many words.
Here’s what I know. I know that if staff ordered a hamburger for my daughter, it means they hadn’t asked her what she wanted or given her the chance to say for herself what her choice would be. If ANY opportunity had been offered her, she would have typed “cheese grilled sandwich french fries” which is clear communication to anyone with even basic English, and difficult I believe to misunderstand.
I also know that she would have been agitated and unhappy about this. Not only does she not even LIKE hamburgers – but also, she has autism. People with autism don’t like changes to their routines. Not having a grilled cheese sandwich is a big deal change to that restaurant’s routine. My girl was entitled to be unhappy about all this, and to show it.
I don’t know – strictly speaking – whether staff pushed her around and hit her up the side of the head. But I don’t need to know that to know that she was abused that day.
And I don’t know when our society will learn to understand this – that people who have more difficulty communicating their needs have the same rights as anyone to having those needs heard and understood and met.
For my daughter, having a hamburger handed to her that day was just a different version of a slap up the side of her head.
The bigwig supervisor certainly doesn’t see things this way. She has stuck fast to her “misunderstanding” story and added for good measure, “staff in our homes across the state face accusations on a weekly basis, that are almost always unfounded.” Her definition of “unfounded” clearly doesn’t match mine – nor very likely that of the clients or families who bring the other accusations she brushes off so dismissively.
This “miscommunication” versus “mistreatment” description is not just a question of semantics, though I think that’s what the residential agency wanted to imply. I need those caring for my daughter to understand that without appropriate communication, they are not providing her with adequate care. I need them to acknowledge this and be accountable to it. This is something I will watch carefully for in the future, as she continues to rely on others to meet many of her most fundamental needs.
A powerfully painful story Joy. I’m sorry this happened to your child. This is unfortunate beyond words but please know it’s rocket fuel for all of us who advocate for living wage and proper training for caregivers which should include education on autism—not to mention basic human kindness and dignity. Wishing your daughter some peace and comfort and for you as well.
I’m so sorry you are going through this nightmare!
When I read the title of this piece I assumed it was going to be parent bashing for allowing the special child to have unhealthy food. I almost deleted but felt angry at that someone would do this so I read on.
Only to learn of a much worse situation.
Fight for you kid❤️
Haha! There was a time years back when chicken nuggets were the healthy alternative I was trying to teach my daughter to eat…
So sorry to read this story. Kudos to the restaurant staff for sharing this with you. It is the responsibility of all of us to speak for those who can’t speak up for themselves.
So true Susan. And I think it’s no coincidence that (as I learned) the young woman who reported this to me is familiar with the DD world via her own family. That gave me extra motivation to share – to help us all learn to really see the people who are in our communities, and care about them.
I’m so sorry and upset to hear your story. It is something that we, as parents, worry about every day when our children are in the care of others who may not understand how our children communicate. Even though it is their job to understand, unfortunately, many do not and just go through motions without “knowing” the person they are caring for.
The issue of allegations being unfounded is not particular to this agency. While my son was at Fircrest and there were several allegations of neglect that when investigated by Residential Care Services, were deemed “unfounded.” Nevermind that the nursing policies were not followed, med errors went on for years at rates of up to 80% error with nurses signing off on meds they stated they administered but didn’t (proven by pharmacy records). The response I got was that since it was not observed, it was not a medication error.
Due to these medication errors and inability of nurses to do assessments and advocate for my son’s healthcare needs, he experienced complications and injuries. He now has lifelong complications requireing medical treatments 3xweek at his physicians office for one of these complications – yet the investgators (who were by the way not any type of healthcare provider) found the allegations unfounded. There are systemic problems that DSHS refuses to acknowledge and so there is no solution since they do not see a problem.
It drives me crazy that the very people who are responsible for doing these investigations pretend there is no problem. The lack of accountability was astounding and unvelievable.
I can say that my son lives in a supported living arrangement now and the accountability and attention to quality of care is more than I had expected given my experience with the “bigwigs” at Fircrest. When there has been a problem, I am contacted and we collaborate to solve the issue – sometimes it works and sometimes we need to try plan b or c. But I do feel that if I report a problem it will be taken seriously and not swept under the carpet as a non-issue.
Again, I’m so sorry that you and your daughter (and her housemate) experienced this and that your concerns were not taken seriously. You can report to APS if the agency did not do that – it sounds as if they didn’t since they only did their internal invesitgation.
I just wanted to reach out and say that my husband worked at Fircrest for a (thankfully) short time and was, frankly, traumatized by how poor the management was and the treatment of their residents. Our own autistic son is fairly “high functioning” and does not need any residential facility help, but my husband was in training for a nursing degree and took the job. He reported that managers routinely ignored diabetic restrictions and fed the special needs residents french fries with ketchup at the bowling alley, packed them into vans above capacity without seat belts for their excursions, allowed autistic residents to watch TV for endless hours without engaging them at all, and he himself was punished for bringing up concern about physical abuse toward a resident. He complained often about the lack of knowledge or even caring displayed by his manager. I even wrote to Seattle Times in response to an article they ran about the place a while ago, encouraging some kind of investigation into the situation there. This type of (or lack of) care to our fellow citizens with special needs is heartbreaking, and it’s so hard, just like in this article, to wage a battle with defensive power-holders in a case of “my word against yours.” I just wanted to say, we’ve got to keep fighting and holding people accountable, and there are people out there who get it. Words meant for Joy, the author, as well as for you.
Thank you, Emma, for your comments. I am a RN and was told that I needed to separate being a nurse and being a mom when I first started noticing some medical problems that needed to be attended to. It was a continual issue and I was not allowed to train or show staff how to do any of the treatments because they are the experts and I’m not – according to them (administration.) Sometimes I felt as if they didn’t do things to spite me. I do know there are some great people working there who do care but as with any place there is a mix of conscientious and caring providers and those who are there for other reasons.
No matter where a child or adult lives, I do think that it is important to have family close by who also help keep a tab on what’s going on and communicate with the team – I see it all as a collaborative effort in providing person centered care –
Your point is well made Cheryl – I don’t think any aspect of this story is particular to any one agency. I think this entire sector is suffering from neglect and chronic underfunding. I believe the chronic staffing and management issues these agencies face are a major cause of these types of abuse and lack of accountability that my daughter’s story represents. Not to excuse any of the individuals involved – but the system is broken and, as you say, the lack of attention to this by the responsible administrations and ultimately our political representatives is where the buck ultimately stops.
I’m so sorry to hear your story and your son’s! And I’m glad he’s in a better situation now.
Final clarification: this was reported to CPS and to the local police, but those investigations found no “proof” of wrongdoing (conflicting stories but no video). I didn’t speak with CPS but I filed the police report. I believe the officer investigated to the full extent that he thought he could, but also that he had a bias towards believing that caregivers who’ve been in this profession for 10+ years “would have been let go before now if they were bad apples”. As your story shows, and as all of us who are familiar with this sector know, that is a very naïve belief to have…
So sorry this happened to you and your daughter. I loved your point about how, when it comes to autism, miscommunication and mistreatment often equate to the same thing.
Thank you Lynn! That is my biggest takeaway that I think I can influence in the future. There are lots of lessons I learned here, but one of the main ones is to be even louder and pushier than I was about my daughter’s need for (and right to!) supported communication. Which is simply a reality of autism – often – that is hard to get people to understand.