I gave this speech a few years ago - it is still as relevant today as it was then:
When they asked me to be the “key note” speaker for an FASD workshop on the topic of “falling through the cracks”, my ego was greatly flattered and I said “I can do that, no problem!” And then I saw the flyer and realized the audience was you all that I would be speaking to and every insecurity I own said "holy s#*t! You can’t do that!!” After I did a whole lot of positive self-talk I started to think, “I can do this”. I am not able to contribute in medical terms, but I can talk about what I know, which is the people I see every day who have fallen through the cracks. So I shall make my one apology for my lack of political correctness, though my heart is always in the right place I am not always as current as I should be on appropriate word choices. And a few of my stories have some controversial elements. Keep in mind as I speak what is really at the core - who these people are. Their stories are what will make this speech worth listening to, because they are real people.
I am the Executive Director of Victoria Manor Housing with Supports home, which we call HOWS for short, which if you are not familiar with, was formerly called domiciliary hostels or rest homes. There are 11 HOWS homes in the City of Windsor and almost as many in the County that collectively house close to 500 people with mental health diagnosis, complex physical health care issues, ABIs, developmentally disabled, frail seniors and a host of other people who cannot live independently. Only two homes in the HOWS systems are not for profit, the rest are privately owned and the City or Counties subsidize the residents living there. It is an imperfect system. HOWs homes are what lie beneath; we are the ones who collect those who have fallen through the cracks. It was not until this last year when the City drafted its 10 year LTAHS plan that the HOWS actually were recognized as an integral part of the housing spectrum. And that is AWESOME; we have been on the outside looking in for a very long time. Problem is that housing and health care are looked at as separate entities and are funded separately. HOWS are BOTH. If you are familiar with HOWS homes you know there are some better than others and that’s the reality of privately owned assisted living. We are governed only by municipal by laws and standards set by social services for the subsidy component. That is not really what I want you to take from this though, the majority of the HOWS in our City and County communities are doing the best we can with very limited resources while also trying to be a profitable investment for an owner. When you walk down the halls of Victoria Manor you will see how we have become the catchall for the most marginalized of our City’s people, we are the biggest of the HOWS homes with 109 residents. In my home, we have around-the-clock nursing; only one other home provides that type of care, so between us we have the most complexly ill. Every resident in my home at present has a mental health diagnosis. It has been said that 95% of those with FADD also have a mental illness. But not one of my residents has a diagnosis of FASD. I believe at least 5 present with signs of FASD. In the last few years I have had several others who I would say without hesitation also have undiagnosed FASD.
I want to tell you a story about a young man we’ll call Cory. Cory came to Victoria Manor on an emergency placement as he was being evicted from supportive housing because of behaviours, which is a lovely way of saying he trashed his apartment and was non-compliant. Cory had a degenerative neurological disease; he had almost no use of his legs, strong arms - but limited control of his hands due to the spasming. He had a power tilt chair that he drove like a Camero. His speech was greatly impaired but he knew how to get his message across. His eyes bright blue but they were that little too far set that made me first think there was more going on with him than his neurological disease. He was 21 years old. He was a right bad ass, or he wanted to be, which was heartbreaking in itself. He came from a biker culture and his parents were involved but they had their own issues so they came when they came and that was the best he good get. He was hard not to like, but he was unlikeable in a lot ways – he was a chronic pot smoker, and I really couldn’t blame him though it messed with his meds and he had problems with paranoia. He hung with a bad crew of boys that used him, feeding off of his need for company, but he needed them so in ways he used them as much as they used him. I chose not to fight that battle. Cory attached himself to me fairly quickly, Cory said he only felt safe with me - and good lord if you just made a mental note to talk to me after this speech about boundary setting then save yourselves the trouble, I suck at it – but I do keep trying I promise. A lot of times when he wasn’t out doing bad stuff with his boys he’d hang in my office while I worked until I’d have to kick him out. I also spent a little time with Mom. Mom was hard core, had a hard life and I she knew had some addiction issues.
Victoria Manor is a supportive care home meaning our ultimate goal is to provide assistance to our residents encouraging them to live with as much autonomy as possible; we are not equipped to deal with the level of care that Cory required. The agency that had assisted him while he lived in their supportive housing continued services within my home alongside my staff. Of course, Mr. Bad Ass started refusing supports for his myriad of reasons. I started to pay attention more then to how he made these decisions and why. As the service providers we had case conference after case conference trying to figure out how we could meet his needs and also meet his demands. Our biggest fear was that this 21 year old would end up in Long term care and I knew that even though his disease was going to end his life, a placement in Long term care would end it first.
I’ll digress here for a bit because this is a huge systemic frustration of mine and you’re a captive audience. The options for Cory were only these: supportive housing for persons with disabilities, and yes he burned that bridge, but for many others its years and years spent on waiting lists, rest homes - that are completely ill equipped to deal with that level of care need or LTC. I had a hard time when writing this speech trying to time it so my ideas all come together and culminate in a well-planned ending but my brain doesn’t work like that – so here’s one of the things I want us as a community, as a society, to think about – why do we not separate out eldercare and long term care? We should give reverence to our seniors and create homes that celebrate their lives and allow them to age in place to end of life with the respect and dignity they deserve, and I know that a number of LTC homes do this well – but why do we not have homes that provide long term, high level care for those people who suffer with debilitating illnesses? A few years ago a man accidentally walked into my office when he was meant to be at the nursing home down the block. He had a tour scheduled at the nursing home, he was looking to place his 48 year old wife, and she had multiple sclerosis. When I explained he was in the wrong place, he started to cry. He began to tell me about his wife and I simply listened. He told me that they had had two children when they were young and those children were now young adults, but then they had a third child, a son, HE was only 10. He said the older children did not grow up with a sick mother. Now they were out of the house with jobs and college, but the 10 year old was at home and he only ever knew a sick mother - and he had been her confidant and her caregiver for most of his young life. The man realized that he couldn’t let that be the son’s childhood, it was going to quickly, and also that she couldn’t be managed in their house any longer, but he loathed to put her in a nursing home with seniors in their last years of life. I could do nothing for him, but his story has stayed with me - and many others like his - with different details but still the same, people like Cory who need long term care in environments that make life about living and not about dying. The question I ask you is this, how do we tear down a system that is so entrenched? Likely you’ve instantly said to yourself “we can’t”, but we can, we just have to brave enough to try. The people we elect must be shown that just because we’ve always done things one way doesn’t make it the right way and they too must be brave enough to make the changes that are so badly needed.
I’ll get back on track - Because Cory continued to refuse services the attending agency had to discharge him and CCAC then began supplementing his care. Cory refused any male support staff to attend to him, which I thought was just bravado, but in retrospect I knew there were several reasons for it. He had a condom catheter; this was our staff’s first experience with this type of catheter. When Cory first came to us I was helping dress him while my nurse was putting on a fresh catheter sleeve. As my nurse was changing the catheter Cory got an erection. She continued what she was doing, these catheters as you may or may not know require taping which can be challenging, and as she was new at it she took even longer. She ignored the erection but he started getting very agitated. I tried to calm him and then realized that he had ejaculated in the condom unbeknownst to my nurse. He was enraged and screamed for her to take it off, take it off and as she protested that it was done correctly I had to intervene and tell her just change it now. And she did. This happened on several other occasions and my staff took it in stride but he began to refuse to even have the catheter put on asking us instead to toilet him each time, and because that required up to 3 staff we simply could not accommodate that. And still he was refusing bathing, only allowing clothing changes. I observed him many times getting enraged, frustrated by his limitations, frustrated with ours, but there still was this almost manicness to his anger that felt very much not just situational but in line with the other FASD indicators I had counted.
The last case conference I had with the CCAC case manager and Cory was in my office. She’s gorgeous and he had mentioned to me how he thought she was hot before. As she spoke with him he got an erection. She was the consummate professional and didn’t blink but I knew he was horrified but could do nothing to hide it. After she left he became irate. I just let him yell. What could I say? When he had exhausted himself I said, this is why you refuse services isn’t it? He said yes. He said he has no control, he says he sees a pretty girl and he can’t control it and he is embarrassed and he hates that he isn’t man enough to do something about it. And I understood. I went home that night and I thought a lot about our conversation. I think a lot – and due to some “personality quirks” you can call it, I can think all kinds of things at once, but that’s material for a whole different speech for a very different workshop. A lot of my job is just thinking, problem solving. I thought about Cory and how we talked so much to him, about him, but did we really know him? Did we take into consideration what a young man might need and want out of this very short life he was getting? I thought all kinds of things: Should there be paid sexual relief workers? I think there should be by the way. Maybe we could get one for him; we’d have to create the job first. Could I get a sex trade worker? Nah, not on $143 personal needs allowance you get a month while living on subsidy. And I thought about his anger, and I wondered how the FASD could be addressed in his care plan – I had never had access to FASD supports before but I thought that getting that diagnosis formally would maybe lead me somewhere I hadn’t looked for help yet.
Sadly, within weeks of that last case conference Cory had continued refusing services to the point where he was filthy and I had no choice but to go to the Justice of the Peace and form him into hospital. His physical and mental health was declining and he was clearly unable to make informed decisions about his own healthcare. I couldn’t watch when the officers came to get him to take him to hospital. I understand he didn’t fight it at all. Cory passed away at 23 years old this past December. In many ways he was his own worst enemy, but who isn’t really? And I know that every agency and every individual involved in his care did the best they could within their agencies mandates and with what we had to work with, but in the end I think we failed Cory first because the FASD diagnosis was missed, and secondly, we didn’t see him as a young man, we saw him as a sick young man. And that word “sick” directed the moves we made.
I want to tell you another story; this one is about a young woman, 26 years old. After being hospitalized for a short time due to an attempted suicide, Kate, as we shall call her, was discharged to a shelter. She had been living with her sister in an apartment but her sister had sold all of their belongings to feed her addictions, both girls are survivors of grotesque sexual abuse. The father was serving jail time for having molested both when I met Kate, he's since been released. Here’s where I struggle, because I want to tell you all the terrible details so you feel how real this woman is – but as evocative as the details are, they are also so very terrible that I don’t want to tell them to you either. Maybe saying that in itself tells you most what you need to know. Kate had night terrors; they were so profoundly terrifying that she would flee. In her sleep, she’d run, out the doors down the road and the police would have to be called to find her and return her. The support workers assisting Kate knew she could not live without supervision, she was of course far too vulnerable out in the streets sleep running – it was with a broken ankle from sleep running and then falling down a flight of stairs that she came to live at Victoria Manor. The shelter had tried putting bells on her ankles at bedtime so they’d hear her, but that hadn’t really worked. We tried everything we could think of to keep her in the building at night, without breaking the fire code - we did not acquiesce to her request to just tie her to her bed each night - the only way she would sleep is if she was around someone. My midnights staff took to doing their jobs with her asleep in chairs in their office, in the laundry room, anywhere they went she would go just so she felt safe enough to sleep – they found if she started to panic they just needed to touch her and whisper she was alright and she would sleep soundly again. There were times when she would be triggered by something or someone, on those nights she couldn’t be calmed and had to cling to your arm. There were even days where we took turns bringing work into her room and tried working with one had while she clung to the other so she could at least take a nap. In her waking hours she was a seemingly “normal” young woman. She needed no daily assistance; she wasn’t having any suicide ideations so she needed no monitoring in that regard. She frankly didn’t belong in our home but she couldn’t live alone either. She was a huge asset in my home as she loved to help the other residents. But I noticed things, once again, the set of the eyes. And there were other things, and I knew Mom drank. And there was never a mid-range emotion – everythign was intense for her. We know that children born with FASD will likely become adults that have inappropriate sexual relationships, mental health issues, addictive behaviours, Impulsivity and poor judgment. Often, so do survivors of sexual abuse. The signs were lost in the awfulness of her past. There was something though, because after a year of therapy, of social workers and medication, psychiatrists and psychologists working to help her heal and the night terrors did lessen in time, but the reactions, the intensity with which she felt everything and the velocity of her anger wasn’t changing.
In many ways Kate continued to appear to get better, her night terrors did eventually disappear unless she was confronted by something that made her think too much of the past. She eventually moved in with a boyfriend and out of Victoria Manor. Within months she was drinking excessively and the last I heard she had gone into a treatment program. 70% of women with FASD will develop drug or alcohol problems. Here’s the hardest thing to admit: she won’t get better. She’s struggled with eating disorders and before drinking she had used drugs. It’ll always be something because with all of the supports she’s been given, the treatment doesn’t take into consideration that she has FASD. And I believe she does. And saying that means there are inalterable pieces to her puzzle, we know with FASD that these behaviours are not in fact “behaviours” but wired into their being. And without recognizing her limitations, and I know that’s a bad word, but we need to honestly look at our clients for they are with all their gifts and all their flaws, and coordinate their care and support through that lens. I think sometimes the hardest part of my job is making the admissions out loud - the things that no one wants to say but everyone is thinking – that there are limitations with our clients. Maybe as agencies our mandates are too restrictive, the idea of client-centred service is extremely important, but, we must temper that approach with the understanding that they will have challenges. And then we find the ways that do work.
In the end, after our passing, our lives become the stories someone tells to someone else. It’s the way we are remembered and cherished but also how we become history and maybe a catalyst for change. Stories like Cory and Kate's are ones that need to be told and retold; and the other countless stories like theirs. I try to not be that person who always finds fault but never offers a solution to the problems. I want to be the person who asks the hard questions and challenges the system, but I also want to be the person who shares ideas and is part of a positive forward movement. When I think about the changes I want to see I think about more dollars overall for healthcare, especially mental health and addictions, for housing, for education, for social supports and system navigation, and the list goes on - but then what? And I do believe every dollar put into those things is valuable, but the cracks are the lines drawn between each of those sectors - and unless they become overlapping services, people will continue to fall through. And there are struggles within the individual sector for dollars, and those struggles tend to fracture service providers from each other, even more cracks. So we need more resources, and we need multi-disciplinary team approaches. As I mentioned in my opening, HOWS provide both health care and housing. Funding needs to be comprehensive and not be limited to a single designation or to one ministry. And as front line workers in all sectors we need to talk to one another and work with one another. In my home, my residents are on an average of 10 to 12 medications a day. That’s wrong. But the psychiatrists don’t talk to the physicians and they physicians don’t talk to the psychiatrists. A lot of what we do in social services is reactionary, we arrive to help after things have gotten bad – we need proactive solutions instead. Having a team of specialists and supports that cross reference and cross address different issues is the best solution I can think of. All parts of what defines a whole life must be considered to ensure we do the best to help those with FASD, but also to prevent FASD in any more.
Leonard Cohen said this about the line “There is a crack, a crack in everything, That's how the light gets in” in his song “anthem”, he said, “there is a crack in everything that you can put together, physical objects, mental objects, constructions of any kind. But that’s where the light gets in, and that’s where the resurrection is and that’s where the return, that’s where the repentance is. It is with the confrontation, with the brokenness of things.” for us, there is no greater opportunity then becoming the deconstuctors, the levelers of a damaged system. What would you want to see in its place? What would the new build look like? I don’t honestly know myself, but I can assure you, I’ll be thinking about it.