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Published by Radio-Canada
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Published by: Radio-Canada on Jun 12, 2014
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06/12/2014

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CAS MODDERMAN TOMLINSON SON WAREHOUSED 26FE 0001 concatenated 185930 JOSEPH AND ANNE SPAGNUOLO 17;01;12;29 JOE: My son is a 31 year-old boy with special needs, autism spectrum disorder, he has cognitive uh cognitive disabilities as well, and also he's also non-verbal, so he does communicate but people have trouble understanding him 17;01;42;25 He is trapped in a body that doesn't really work well and I suspect he is somewhat aware of that and it is having some sort of emotional effect on him as well 17;01;58;24 I just can't imagine what's going through his mind. HE's really not realizing what's going on 17;02;09;22 All I know is that he looks at me with big teary eyes quite often, points to the window, starts counting his fingers and you know I have to basically tell him it's only going to be a few more days and soon he'll be going home and I just have to carry on that lie 17;02;34;21 And the next day we repeat and the other thing that's going on of course, is that he's not getting any stimulus that he's used to when he's out in th e community, he's not as physically active cuz he's confined to his room 17;03;06;19 His physical activity and any type of stimulation depends on family vists MOM: He's basically confined to his room. He has two guards stationed outside his room. It's no place for humans 17;03;39;16 Mom: Sheer frustration first of all. I think it's just adding to what he's going through. He must just be totally depressed 17;03;50;27 JOE: At home he has free reign to do what he wants whether it be go outdoors the back yard, go for a walk, go for drives that sort of thing 17;04;07;05 INteract with family friendsa nd visit, of course all that now is very limited and his free reign of movement consists ofhis room and going out into the hallway 17;04;37;19 He's being kept safe, his phsyical needs are being tended to somewhat in terms of being fed and water and a bed to sleep in . but as far as his personal hygene and that sort of care that that sorta falling down by the wayside 17;05;09;09 Simple things like brushing his teeth every morning and night, he needs help with going to the bathroom, he needs some assistance when it's mealtime, dressing, showers, showering. HE can be incontinent at times that's not always addressed readily 17;05;44;09 The worst thing I've seen when he does do bed wetting, because staff are no't comfortable going in helpikng him, or knowing you know really how to communicate with him or know
 
when to help him, they basically leave him unattended for long periods of time. So he can be sitting in wet clothing for a few hours 17;06;17;25 He's basically someone who consttantly needs care and supervision 17;06;53;03 He's um you know he doesn't have a lot of things he's interested in doing anymore, so we're constatntly struggling to stimulate him with stuff that do interest him, like read books, playing wiht interactive toys... swimming, playing ball... 17;07;45;20 That's a big concern, the situaion now with the confinement to his room and having his security personel stationed outside ihis room is creating a reputation for him as someone dangerous I guess 17;08;05;12 People see him and they do see an adult and they dont' know him 17;08;14;00 I think a lot of the staff have become uncomfortable because of the staging and the staff there a lot of them just donw't have the experience the background with people with special needs like my son 17;08;58;08 MOM: Exhausting JOE: VEry frustrating MOM: Wearing us down. VEry sad to see Nicholas in that position though 17;09;08;12 JOE: It's very frustrating when we look at the amount of money being spent to contain him in that room right now as opposed to providing him with a personal care worker 17;09;24;05 IT's really scary because we don't know how long it's going to be for a long term placement type of situation in the community where he's living in you know a good quality of life. We have no idea how long that situation will take until that will materialize 17;10;06;28 Just not enough money thrown at this problem. The ministry needs to fund more long term facility. Right now there are long waiting lists, I don't know how long they are but I'm told they can be years 17;10;39;23 I can imagine a private double-bed room which is basically what he has now costs quite a bit everyday I'm told about 1200 dollars a day. SEcurity personel we're talking two of them around the clock so whatever that is 17;10;58;12 That compared to having a personal careworker and having him out in the community with uh in a proper facility surely must be cost effective than whaty's going on now 17;11;43;09 We see the frustration in the people htat tell us this. They're just dealing iwth a huge bureaucracy 17;12;05;21 MOM: Oh my gosh it's overwhelming. Nicholas has been with us for 31 years and our intent was for him to stay with us forever. We didn't expect us not to be able to take care of him up until this point. And when things went south for us with nicholas, he's been on a waiting list for this past
 
year and realizing this system is saturated and there's no where else for nicholas to be. THis is just crazy we didn't expect this to happen 17;12;46;20 We didn't expect this to happen 17;12;58;12 **MOM: First of all I have to be there everyday, someone has to brush his teeth and it's  just heartbreaking, especially when you have to leave, you're leaving part of you behind. It's really heart-wrenching 17;13;18;24 **It's like leaving a two year-old behind that wants to come home with you.**And you get the odd nurse, some of the staff has been amazing, they have big hearts they go beyond what they need to do are beyond amazing, and some of them are uneducated they're not equipped to care for someone like nic. people need to educate themselves, the hospital is just not equipped to care for someone with special needs bottom line. Even if nicholas went in with a broken arm, or a appendicitis for a few days parents have to be there with these children, they just can't be left unattended 17;14;07;15 mOM: We are just not now equipped to care for Nicolas here 17;14;33;03 JOE: Part of the issue with nic's condition is that he's prone to having aggessive outbursts and that has escalated recently. And that has become an issue of safety for mom and safety for nic as well being here so thats a big problem and unless that's addressed 17;15;12;03 MOM: He has these, we'd call them episodes or seizures, rage seizures whatevr you would call them, it's like someone with dementia frontal lobe dementia, he would just you know, MAMAMAMA, and he would like Mike Tyson and BOOM to the head no rhyme or reason then he would start crying. Or he would take something sitting on the counter and just throw it 17;15;48;26 This escalated. We looked at medications from his GP and from the community from the roh our gp trying to calm his brain down and nothing was working. We're still looking at having that addressed 17;16;15;16 It's difficult being alone for sure. Something Nicolas couldn't control for sure. I mean it wasn't continuous. He's not a monster he just couldn't control these things. 17;16;43;14 MOM laughs JOE: There is nothing out there. That's basically what the problem is. 17;17;09;00 That's part of the reason why we're coming to you. There are people coming up the ranks who are going to be in the same situation we are now and uh some of them are going to besurprised and it's gonna be a huge problem 17;17;35;17 JOE: That is very costly very cosytly and for us that would mean, a caregiver that would mean a live in person because we'd have to have him here around the clock, so that's pretty cost-prohibitive 17;18;10;21 WE're activiely looking for another one of him because it's good to have a back up and he has other employment obligations as well... he's only avaialble a few hours at a time...

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