PRINCE EDWARD ISLAND LEGISLATIVE ASSEMBLY

Speaker: Hon. Carolyn I. Bertram Published by Order of the Legislature

Standing Committee on Education and Innovation

DATE OF HEARING: 7 OCTOBER 2014 MEETING STATUS: Public

LOCATION: POPE ROOM, COLES BUILDING, CHARLOTTETOWN

SUBJECT: LEARNING DISABILITIES AND AUTISM

COMMITTEE: Gerard Greenan, MLA Summerside-St. Eleanors James Aylward, MLA Stratford-Kinlock Kathleen Casey, MLA Charlottetown-Lewis Point Olive Crane, MLA Morell-Mermaid Charles McGeoghegan, MLA Belfast-Murray River Robert Mitchell, MLA Charlottetown-Sherwood Pat Murphy, MLA Alberton-Roseville

COMMITTEE MEMBERS ABSENT: Steven Myers, Leader of the Opposition

MEMBERS IN ATTENDANCE: Colin LaVie, MLA Souris-Elmira

GUESTS: Prince Edward Island Learning Disabilities Association (Martin Dutton, Dr. Heather Keizer); Stars for Life Foundation (Carolyn Bateman, Rhea Vardy MacPhee); Parents from the Autism Society (Andy Arsenault, Maude Desjardins, April Ennis, Krista MacGillivray)

STAFF: Emily Doiron, Committee Clerk

Edited by Hansard

Education and Innovation 7 October 2014

The Committee met at 9:30 a.m. husband’s family, and have been here since 2006. There you go. Because everybody has to have a pedigree in PEI so I got to get that Chair (Greenan): Okay, ladies and out of the way. gentlemen, committee members, we’ll bring this meeting to order. Chair: Thank you.

I want to welcome all of you to today’s Martin Dutton: And I’m Martin Dutton and meeting on the Standing Committee of I’m from away. Education and Innovation. We have a number of presenters. Ms. Casey: Islander by choice.

First of all, I would call for the adoption of Martin Dutton: By choice. the agenda. Dr. Heather Keizer: All right. Ms. Casey: So moved. Chair: Welcome to both of you. Chair: It’s been moved by – you got it? Kathleen. Dr. Heather Keizer: I entitled this Vision of Hope. I wanted to present to you the Ms. Casey: Thank you. issues around learning disabilities in Prince Edward Island. I reference a number of Chair: Our first presenters today are the studies that have been done on Canadian PEI Learning Disabilities Association and statistics in this presentation. You’ve got we have the newly appointed executive copies with you there. We have presented to director, Martin Dutton, and the president of various and sundry committees on education the association, Dr. Heather Keizer. I’m in the past, specifically 2005, 2007 and going to turn it immediately over to you 2011. Sadly, the situation for learning two. When you speak for the first time just disabled children in PEI hasn’t changed a announce who are for our people that are great deal and I’m hopeful that it shall in the recording, and we’re away. Welcome. near future.

Dr. Heather Keizer: All right, thank you. First of all, who are we? We are a non-profit organization affiliated with the Learning My name is Dr. Heather Keizer. I wanted to Disabilities Association of Canada. extend my thanks to the standing committee Currently our board of directors includes and the Chair for inviting us to present people from a variety of professions. today. Before I get into my main Myself, I’m a psychiatrist. I diagnose presentation I think I need to sort of fulfill children with attention deficit disorder. I an Island tradition and tell you who I am. work in the emergency room. I’m in fact on call today so you’ll have to excuse me if I I am Dr. Heather Keizer, the wife of Dr. get buzzed. I work with adolescence and Sterling Keizer, eldest son of Mr. Lorne children as well as adults, and I’m well Keizer. My maiden name is Heather aware of the issues regarding mental health MacDougall. I grew up on Upper issues and justice issues. Hillsborough Street. I was the daughter of Teddy MacDougall of Upper Hillsborough Dr. George Mallia is on our board of Street. Graduated from Montague Regional directors. He is a psycho-education High School, graduated from UPEI twice, in consultant regularly assessing children with 1984 and 1990, trained at Dalhousie learning disabilities. Dr. David Wong is a University, graduated in 1994 in medicine pediatrician on our board. He is affiliated, as and then 1999 in psychiatry, went on to train I am, with Dalhousie University, trained subsequently at Harvard in post-traumatic students from Dal, and he works out of stress and finished a master’s there, and did Summerside and, again, is an advocate and some additional studying there, and worked works directly with children with attention as the director of psychiatry for Huron Perth deficit disorder and learning disabilities. County in Ontario, and subsequently came back to PEI because of family illness in my

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Mrs. Mary Lou Griffin-Jenkins is our former Despite my reading to him daily from birth president and she is a curriculum consultant and his completing the Reading Recovery with Holland College. Ms. Elizabeth Jeffery Program in West Kent Elementary School, is the president of the Early Childhood he was reading orally at a grade 1 level in Educators Association. Actually got an grade 4. He agonized to write one sentence award last year, I believe, for educator of the where his peers wrote three paragraphs year. Ms. Kira Salonius is a business though he could easily understand and management consultant. We have another explain the topic of conversation. So you member standing next this month from can see there’s an enormous gap between his (Indistinct) the board of the legal profession ability, his potential and his actual but I can’t include them because they’re not performance in reading and writing. voted on yet. And of course, Mr. Dutton is our newly hired executive director. One in five to one in six PEI students are performing below their potential. This is a We have a wide variety of people statistic given to me by Sandy MacDonald, represented. Some of the members of the our deputy minister. LD individuals have a board are also parents with children with great potential to achieve due to their learning disabilities or have learning intellectual abilities and gifts of average or disabilities themselves. superior IQs. They have great potential. Many perform at or just below class What is our vision? To advocate for learning averages and so they miss being identified disabled individuals and their families by the and are unhelped. provision of advice and services, and to act as a clearing house for information Currently we are not investing in this regarding learning disabilities for the population of students who could make community at large. significant contributions to our community in the future if identified and supported. What are learning disabilities? Learning These people have great potential given the disability is a very difficult label. It has been right teaching interventions because of their defined a number of ways, and in any of the high IQs, because of their creativity, but background literature you read you’ll they need to have appropriate identification discover this. For instance, in the United and intervention. Kingdom learning disabilities imply intellectual delay, so pervasive Learning disabilities are diverse, they span a developmental delay. In the olden days it wide variety of deficits, and are often was called mental retardation. Learning mistaken for slowness or willfulness. Sadly, disabilities, as defined in Canada and by our there are a number of sad cases of this, my association, is not that. It refers to people son being one, in the public system. When with normal or superior intellect who, he would struggle to write out his homework however, the high IQ have poor the teacher wouldn’t wait for him because performance in reading, writing, calculation, he was supposed to be – you’re going to processing or communication below what have to be prepared to go on into the next you would expect in an otherwise grade, you have to be fast, and he couldn’t intellectually capable individual: somebody physically do it. Very frustrating for him and who is obviously bright, is able to absorb very discouraging for him, and that’s just information, comprehend information, but one small example. can’t write a sentence or can’t read a book easily, or can’t read out loud or can’t do Children know that they are struggling and math. Yet you know that they obviously often hide their distress. Example, my son have a lot of abilities. knew that he did not read well in a family of prolific readers. He told me and admitted to Here’s an example. My son received a me that he typically chose easy picture psycho-educational assessment at the age of books in grade 3 so that the teacher wouldn’t nine. He had an IQ of 136. His perceptual suspect he couldn’t read them. He picked the reasoning skills were ranked in the 99th easy books so the teacher would never ask percentile, that is, he was more capable in him because they obviously looked easy. He this area than 99% of the population still couldn’t read them. internationally.

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I’m going to reference some research that’s of Canadian principles rank accommodating been done by Canadian researchers. There diverse needs important, but only 8% of was a pan-Canadian perspective on principals felt that current graduates are professional knowledge base for learning prepared to do this. There’s a big gap there. disabilities. I strongly recommend you pull this up. I was going to print it for you but What is the cost of learning disability being it’s 32 pages. You can (Indistinct) on the missed in our population? This is a study Internet, it’s easy to find, the references are done by Wilson, Furrie and Walcot-Gayda. there. What this was was a study done in Wilson is a professor at Mount Allison 2008, a review of pre-service training of University, Furrie is an assistant and teachers and psychologists and policy Walcot-Gayda is from Ontario. guiding their work regarding assessment and intervention protocols for learning They did a quantitative study correlating the disabilities. statistics of StatsCan with regard to outcomes and success in the community and Focus groups were had and they made direct statistics on learning disabilities. They found questions to 13 provincial and territorial that learning disabled Canadians are twice as registrars for teacher certification. So every likely to quit school. Learning disabled province, every territory, they contacted the Canadians underachieve in functional registrar for teacher certification because literacy. Learning disabled Canadians report you can’t practice without a certificate in a higher levels of stress, depression, anxiety, province. They also contacted 13 provincial suicidal ideation and poor mental and and territorial registrars for the boards of physical health than the general population. examination in psychology. They made I can attest to this. That is why I’m on this direct questions to these organizations board of directors as a psychiatrist. regarding the training and knowledge of learning disabilities across Canada. This was Missed and unsupported learning disabled the result. people become mental health, addictions, social service and justice cases. I can give They asked a direct question, of the registrar you case study after case study. I’m not for teaching certification in every province going to waste your time with that today, but in Canada – 92% of these organizations if you want to know, I can give you local responded: Do you require a specific course anecdotes about that one. or training in learning disabilities for certification as a teacher in your region? What is the cost of learning disability being Zero of 13 registrars required this. missed? Again, this is from the study by Wilson and Furrie. Only one-third of Do you require a course on developing families with identified learning disabled academic accommodations for students with children can afford the supports needed to learning disabilities for certification as a help their children. teacher in your region? Zero of 13 teachers’ registrars required this. They also got a 70% How long does it take to assess a child for response from psychology, zero of 13 for ADHD or learning disability in PEI? I ask training, zero of 13 for accommodation. you that question. You should explore that question. The conclusion of this study, and it’s a rather large study, and this is the acronym Once assessed, do the psychological for it, was this: “teachers enter their recommendations get implemented by the profession with little… awareness of the school board or by the specific schools the nature of LD” as – oh sorry. Learning – child attends? Also an important question. what learning disabilities – it should be learning disabilities are – “or knowledge of What recourse is there for families who their role in accommodating… students.” cannot afford the technologies or tutors needed by their children to succeed in Ninety per cent of Canadian school school? principals rank education assessment as very important, but 7% rate current graduates as Do learning disabled children have a right to well prepared to do this. Eighty-one per cent support? In 2012 there was a Supreme Court

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ruling in BC after a 15-year study – I again Unfortunately, the teacher, who was well- urge you to look up this case on the Internet. meaning, there was nothing wrong with the It was the Jeffrey Moore case, Jeffrey Moore teacher, but untrained, didn’t know how to against the Crown. The conclusion of the incorporate this into her lesson plans, didn’t case was that students – when this went to do so, so my little guy, who was an the Supreme Court – so it went into appeal enthusiastic learning, a bright little fellow and it went to the Supreme Court – students was put at the back of the classroom beside with disabilities are entitled to have the the cloakroom on the computer to listen to a accommodation measures they need to story while the rest of the class carried on access and benefit from the service of public without him. She had no idea what he was education. In this regard adequate special listening to, she didn’t monitor it, there was education is not a disposable luxury. They no intervention. went on to talk about how they needed to better allocate the budget to accommodate Yes, the technology was there, but perhaps these children because we’re talking one in we need some help with integration and six, one in five sometimes. accommodation.

They found in BC Supreme Court ruling – The department of education is looking at there is precedent now – there was adopting a response to an intervention model individual and systematic discrimination of teaching. Again, we’ve had the against students with severe learning opportunity, and we’re very thankful for it, disabilities in general for which the province to talk with the student services department and the school district were deemed of the English Language School Board and responsible. The Moore case was awarded with the deputy minister and this is a very costs of his education. He was forced by the hopeful change in the current manner of school board to go into private school teaching. Really, the idea here is that they because they felt they couldn’t have ongoing assessments of students and accommodate him, they didn’t have the then, if the intervention that’s being funds to provide him with additional provided isn’t working, they change it. Now, accommodations, and in the end the school that sounds very logical and it is, but it is a board had to pay for his education. new model of care.

So there is a need, there is legal precedent. Again, I think this is a wonderful We need to do this better. But there’s hope. opportunity for us to not only assess and adjust interventions for individual student Currently the department of education on needs who are not learning disabled, but also Prince Edward Island is focusing on to integrate learning needs and assessments professional development of Island teachers. for children who are learning disabled into This is a golden opportunity to enhance the classroom. This is a forward, and I think educators’ knowledge of learning disabilities a hopeful, move on the department of and appropriate in-classroom education’s part. accommodations. It’s not just being able to identify these children, because We, as the Learning Disabilities Association identification’s only a very small portion of of PEI, have launched an Island-reader the battle. It’s being able to integrate them program. It is an evidence-based program. and provide appropriate supports and It’s owned by Barton Reader. Barton Reader accommodations in the classroom. owns the rights to it, we’ve got a licensure for that. It’s based on what’s called an I’ll give you an example. When my son was Orton-Gillingham, if you can look that up, in grade 6, because this is my field of study I an Orton-Gillingham model of training for obviously went for it and did lots of students in reading which means that they research. I discovered they would help him get taught phonemes and rules of grammar, if he had some assistance in reading. There’s that sort of thing. What’s lovely about it is a program called Kurzweil that you can scan that anyone who has difficulties with books into a computer and the books will be reading can take it. You don’t have to have a read by a horrible robotic voice to you. I label. If you have difficulties reading at any pushed and prodded and got the school to age – so children to adults can take this allow my son to read (Indistinct) Kurzweil. program. What’s nice is that they start at the

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beginning and they get progressed from their solutions consistent with the professional level of ability up through the program, and resources of the LDA PEI board of directors they get progressed only when they’ve and its membership. mastered each level. This is our ask: that the Province of Prince We’ve launched this with good success and Edward Island officially designate learning we’re hoping now to decentralize it and disabilities as defined, by LDAC 2002 as a provide it Island-wide. We’ll provide it at disability in PEI. I believe we may the only cost which means that, because we’re a the province that doesn’t acknowledge it is a volunteer organization, we’re not going to disability. take a profit on this, which means it’s hopefully affordable to as many families as That’s it, folks. Thank you for your time. possible in PEI. Chair: Thank you very much, Dr. Keizer. The other thing that has happened to date, and we hope for more of this, we’ve had We’ll begin with questions. Olive Crane and some sponsorship by members of the board then Kathleen Casey. and from others in the community for children and individuals for individual seats Ms. Crane: First, thank you for such a great so they don’t have to pay for it at all, and presentation. I’m very familiar with learning hopefully we’ll be able to increase our disabled individuals and their struggles in sponsorship for seats in this program. It’s a my own family as well and – one-on-one tutor-to-child program. Hopefully, as time passes, if we can get Dr. Heather Keizer: It’s very prevalent. some more sponsorship we’ll provide the service free to as many families as we can. Ms. Crane: Yeah, and it just hasn’t changed by the sounds of it. I’m curious. The As well, we are looking to launch an Island definition, is that because of tax reasons or math program very similar to the Island what’s the rationale why we don’t have it reader program. It’s based upon jump math, here? which is again an evidence-based program which is tailored to the child’s or the Dr. Heather Keizer: Because at the individual’s learning and assessment when moment autism and physical disability and they begin, and it’s to assist those with intellectual disability are all supported in the difficulties with math and calculation. school system, but these children are not. Again, we’re hoping eventually to launch this but also to decentralize it and have an Ms. Crane: Okay. Island-wide program. Dr. Heather Keizer: Because they’re not LDA PEI looks forward to providing defined as disability in PEI. support, LD individuals and educators, to allow them to reach their full potential Ms. Crane: So it’s for services? academically and professionally. I’m going to read that again. We look forward to Dr. Heather Keizer: For service. providing support to LD individuals – so learning disabled individuals – and their Ms. Crane: Okay. educators to allow them to reach their full potential academically and professionally. Dr. Heather Keizer: And possibly for tax reasons, but really for service. Tax reasons This is what we offer. As advocates for become an issue because this is extremely learning disabled individuals, their families expensive to families if they have to hire and their caregivers, LDA PEI offers its private tutors and buy equipment to do support to aid the development of voice-to-text and that sort of thing, so yes, appropriate policy and the delivery of there’s an advantage to – but they actually appropriate interventions in training of PEI have to have a psychological evaluation to educators and learning disabled students. be able to qualify, I think, on tax forms. We look forward to pursuing both long-term Yeah. outcome studies and short-term practical

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Ms. Crane: (Indistinct) for sure. necessarily all principals and not necessarily all school districts. Dr. Heather Keizer: But the province itself has chosen, as far as any (Indistinct) I can I think there’s obviously room – there’s a find, to not include them as a disability at great deal of room when you consider that the moment. I stand to be corrected. If you zero on 13 registrars don’t require teachers can correct me I think it would be to be trained in learning disabilities. wonderful. Chair: Thank you. Ms. Crane: In terms of the length of assessment to get an actual diagnosis, is that Kathleen Casey and then James Aylward. still three years? You mentioned that – Ms. Casey: Great, thank you, Mr. Chair. Dr. Heather Keizer: I ask you. Dr. Keizer, during your presentation you Ms. Crane: Okay. referred to the Philpot and Cahill study in 2008 where all the provinces were asked Dr. Heather Keizer: I personally, because I specific questions about: Do you have have a learning disabled son, paid for it specific course training for your teachers? because I can afford to pay for it. I’m a That was in 2008. Is there any result now professional. I would have probably that – has there been any improvement? Are mortgaged the house to do it anyway, but I there any courses, any provinces that – paid for it so I didn’t have to wait. Dr. Heather Keizer: It would be very easy Ms. Crane: Right. to discover that. All we would have to do is contact – and I haven’t today contacted the Dr. Heather Keizer: That doesn’t registrar of Prince Edward Island for teacher necessarily mean that the recommendations certification, but we could easily do that and were enacted. At the moment, I understand they could tell you whether or not Prince it’s somewhere between two and three years. Edward Island requires that. I suspect not. I don’t know, I don’t actually know. It seems to be a moving target. Ms. Casey: Oh.

Martin Dutton: We do have an example if Dr. Heather Keizer: But I don’t know that somebody coming through saying that they for a fact, but it would be very easy to just received their assessment as their child’s discover ourselves. Should we want to find leaving the school system, and that’s not out we would contact the registrar for unusual. teacher certification in PEI and ask. There is in that study that I referenced, the Philpot Ms. Crane: The last question before I turn it study, there is actually at the end of it – back is when you talked about having actually, I think it’s the – yeah, there is training for educators, does that include the actually their list of questions that they use. principals that apparently they are going back to school to get specialized training to Again, I was going to print it off for you but be more of a professional principal? If so, I it’s 32 pages, I thought it was a bit was just curious if it’d be a part of their cumbersome. But at the very end there’s an curriculum. Apparently they’re supposed to addendum that shows the specific questions be going back to (Indistinct). that they asked of every school district in every region. That’s available to us if she Dr. Heather Keizer: I think we’d be open would want to do that. about that. I think if people want to expand their knowledge base I think it’s a valuable Ms. Casey: Sure, I was just curious that thing. As you noticed from the statistics after – if the study was done in 2008 and the regarding one of the studies, principals, questions were posed – because they’re managing teachers and coordinating teachers, often are well aware Dr. Heather Keizer: I suspect – of the need for these skills because they’re in a position of administration, but not Ms. Casey: – was there any improvement?

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Dr. Heather Keizer: – no. disabilities are not the same, they’re not a homogenous group. They’re quite a mixture Ms. Casey: Okay. of different things and so there’s not a rubber stamp solution for every child. It Dr. Heather Keizer: I don’t believe so, but requires of a teacher a great deal of analysis again, I hope I’m wrong. and flexibility, really, which is, again, not something that you can really teach per se Ms. Casey: Okay, thanks. Thank you. but you could maybe – we could certainly integrate it as basic knowledge and Chair: Okay, thank you. awareness. It’s very difficult, and I have done this repeatedly if anybody – once a James Aylward. child is labelled as learning disabled, a parent must go regularly, perhaps on a Mr. Aylward: Thank you. Again as well, weekly basis, to the school to enlighten and thank you very much for your presentation. inform and stay in contact with what’s going on. Similar to what Olive said earlier, I’m very familiar with your organization and the Initially at the beginning of a school year I resources that you provide. My son actually do continually have to go and make contact, graduated from Charlottetown Rural about a for instance, to say: No, my child is not year and a half ago and what you talked intellectually delayed, he’s actually bright, about, your son, we went through that exact he can do the work, he doesn’t need less scenario. It was a very challenging period of work, he needs accommodation to do the time for him, particularly during the junior work. This is a – every school year, every high years. teacher, we have to do this because people don’t know what it means. Dr. Heather Keizer: Very difficult. On top of that also, what does it mean – Mr. Aylward: Charlottetown Rural was a what’s fair and what’s not fair. Is it fair for tremendous experience, and I give a huge him to have Dragon Naturally Speaking to amount of credit, well, to my son and my do voice to text to write his essays when the wife, but also to individuals like Susan child beside him is laboriously writing it Willis, the administrator of that school, and out? Is that fair? Is that allowable? the teachers that my son had. They were Depending upon the teacher, you end up phenomenal individuals and they really with a bit of a discussion around that issue. worked hard to get him in a good place. Is it fair – well, we wouldn’t deny him glasses, right? We wouldn’t deny him Now Kathleen talked about the registrar and medication if he’s got attention deficit the mandatory courses, and you had said disorder, but we would deny him means to there’s hopeful news for learning disabilities be able to write an essay. So that becomes here on PEI, and you talked about the an ongoing, annual, bi-annual, sometimes department of education is currently monthly effort on the part of parents, and focusing on professional development days. you would be aware of that I suspect with Can you tell us: Are we any closer to having regard to your own situation there. mandatory courses coming through the education program at UPEI? I think that that could improve if we included some educational content in the Dr. Heather Keizer: As far as I’m aware, curriculum for training our teachers that’ll no. However, we as an organization – I have graduate from UPEI. I think that’s doable. good ties with UPEI and I know members of It’ll take some negotiations with the the faculty at the department of education. department of education – not the That is sort of – we were chatting about this department of education, but the faculty of at our last board of directors meeting. But education at UPEI – but I think that’s very this is I think a direction that we would like doable. to go as an organization as well to provide support to UPEI and its educational training Mr. Aylward: I guess my concern around program. This isn’t an easy field, it’s very the question is that, yeah, it’s wonderful the complex. Individuals with learning

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department of education is going to devote The minister of education in the last year some PD time for – and a half stood in the Legislative Assembly and started talking about stats of students on Dr. Heather Keizer: They have not said PEI that are assessed with learning they will, but they could. disabilities, and it was shocking actually, because I think he was saying as high as – it Mr. Aylward: And again, at the top of your was getting close to 30%. slide, it says hopeful news – Dr. Heather Keizer: Yes, that’s right. Dr. Heather Keizer: That’s right, so it’s hopeful. Mr. Aylward: Then he compared us to New Brunswick, Nova Scotia, who were Mr. Aylward: So we’re hopeful that that somewhere between 15 to 17%, and the will happen, but we know that half a day of question was asked to him: Does that alarm PD is not going to get them where they need you? What are we doing to find out why? to be. There was no answer there.

Dr. Heather Keizer: The reality is that – Dr. Heather Keizer: True. and this is true for any change, right? It’s the stick and carrot sort of phenomenon, right? Mr. Aylward: Do you have any answers If you do not require it with registration and around that? certification, there’s no motivation to pursue it. That’s our reality. Dr. Heather Keizer: Well, I mean –

Mr. Aylward: Just one other question right Mr. Aylward: I mean, in your professional now, Chair. field.

Chair: Okay. Dr. Heather Keizer: – answers in regard to what? I think there are some difficulties Mr. Aylward: So on basically your last around labels, right?, and I think – and I slide, the ask: a simple but important first know in our discussions with the deputy step, that the province of PEI officially minister about this, he is accurate in designate learning disability as defined by suggesting that it’s very difficult to enact LDAC 2002 as a disability on PEI. change without assessment. Unfortunately what is labelled as learning disability or – What action so far has your organization or (Indistinct) I gave you those statistics, one in your association done to lobby the five or one in six, that is children performing government to – below expectation, right? That could encompass a number of different things Dr. Heather Keizer: This is it, I guess. I including learning disability, including a think – number of other issues. We have not studied and teased that out. Mr. Aylward: So is – this is the first attempt? We need to do something like that, but before that happens, or as that happens, we Dr. Heather Keizer: That this – while – I still need to help the children who are in the think it may be, it may be. Certainly there’s system now. If we wait for a study, if we been plenty individual quiet movements this strike a committee, we will be at this – and way, but I think it may be our first official there have been committees struck and there attempt to do this. have been reports written, but the actual delivery of service to children has not Mr. Aylward: Okay. Sorry, I do have one changed. Then I guess that’s where we’re more, and I promise this is it. coming from. We’re trying to intervene with some delivery of something. However Chair: Okay. modest it may be, at least it gives hope to the families because up until now they’ve Mr. Aylward: This is it. been trying to tolerate this and intervene on their own individually, case by case.

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No, this is a huge issue and we do need – it Dr. Heather Keizer: Yes. is important. These are children who have great potential to achieve. These are people Mr. Mitchell: – as we speak today – who have very high – well, not all very high IQs, but average to above average IQs who Dr. Heather Keizer: Yes. initially are enthusiastic about learning but then get into a system that they don’t know Mr. Mitchell: – with a learning disability. I how to manage and don’t perform well in. know that you’re promoting some kind of a There are many factors that play into that long-term solution. However, in the which it’s too much to get into today, but I immediate short term solution, what would think it could be something that could be be an action today? Is it software programs integrated into curriculum for a degree in that help these children to learn? What’s education, certainly could be integrated into immediate that could be – PD day curriculum, and certainly we need to be aware of this in our province. Dr. Heather Keizer: This would be very helpful today. It’s a huge loss of great potential in our youth. I mentioned this before: these Mr. Mitchell: But what would that bring children as they move into high school and us? junior high school become discouraged if they don’t have intervention. These are the Dr. Heather Keizer: That would mean that children who end up skipping class and the school system would identify learning smoking up. These are the children that I see disability as a disability and would allow the in the emergency room with suicidal province to designate funding for this ideation and hopelessness because they disability. At the moment it’s not on the cannot achieve. They believe that they’re agenda. stupid, and they’re not stupid, and so they do whatever they can to survive. We complain Mr. Mitchell: I guess getting back to my about addictions in PEI, we complain about original – so if there was funding – not having enough child psychiatry and enough interventions for mental health Dr. Heather Keizer: You can’t get there – services. This is a factor. It’s not the only you can’t justify it unless you actually factor, but it’s an important one. define it.

Mr. Aylward: Thank you very much. Mr. Mitchell: If there was funding available, though. I guess that’s my Chair: Thank you. question. Is it more teachers, is it software programs, is it – like, what is the – what Robert Mitchell. would you like to see immediately?

Mr. Mitchell: Thank you very much, Dr. Dr. Heather Keizer: Immediately we need Keizer. It was a very informative the teachers to be trained as to what a presentation for sure. learning disability is so that it’s on their radar, so that they actually acknowledge it Most of my questions have been asked by and intervene for it. We need to support the Mr. Aylward, but I just have a couple of teachers and we need to support the little things or comments, I guess, maybe. principals in helping these children. That’s Based on your numbers, one in five or one important. in six, and that seems to be supported by Dr. MacDonald (Indistinct), it seems any teacher I cannot give you a specific intervention. It in any classroom on Prince Edward Island would be helpful, however, for those would have three, four, five children – children who get a psychological assessment by those who are trained in that like Dr. Dr. Heather Keizer: Yes. George Mallia on our board, that the school would be somewhat compelled to enact that Mr. Mitchell: – working with on a daily assessment and the recommendations basis – thereof because at the moment they’re not.

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Mr. Mitchell: Like I said, that’s a great Chair: (Indistinct) right spot. point and I meant to ask that as well. As far as assessments – I’m not sure when you in Martin Dutton: It would be interesting if your own situation or even in yours, James, somebody actually got the research together when did you decide: my son has an issue? to say if you front load the cost, if you Was it in kindergarten, grade 1, grade 2, actually put the interventions in at the grade 3? When does the teacher actually earliest stage and said how much would it say: Parents, I think there’s a concern here? cost to support that person at that particular When (Indistinct)? (Indistinct), and then project and say how much could you have saved potentially from Dr. Heather Keizer: This is discussed in a front loading, purely in business terms, front number of the papers. Again, you could read loading would give you the best result. them in more depth when you look at the references. I think the chamber did a presentation where they mentioned something like $1.9 million One of the things that’s discussed it the pan- would be needed in the course of Canadian assessment for education and the somebody’s lifetime by giving supports impact of learning disabilities is that the (Indistinct) stage. Take some of that, put it at ideal is a collaborative approach, so that the earlier stage, and see how much money there would be collaborative team that potentially you can save, but improve the would support these children, and that’s sort course of life well. of the national ideal. That collaborative team would include parents. Parents are the first Dr. Heather Keizer: I’ll give you an stop. Parents know their children as well as example, all right? For me to purchase anyone, and parents identify difficulties Dragon Naturally Speaking for my son in before teachers ever see them. To include grade 8, which he’s in now, I got a newest parents in the learning plans and for their version of it, and a laptop. To do that cost opinions and their issues to be taken me $2,000, all right? The Dragon Naturally seriously is an important piece. Speaking cost $200, it’s the newest thing. It takes him two days to train on that. If he We talk about collaborative intervention, so were in grade 8 and hadn’t had support and parents, teachers, sometimes psychologists, he was smoking marijuana and got psychotic sometimes pediatricians, sometimes on marijuana and came to the emergency psychiatrists even, may all be important room and I kept him overnight, it costs members of a team that could intervene or Prince Edward Island 750 to $900. One be an advisory board. That’s recommended night in emerg and an assessment by a nationally. How many provinces enact psychiatrist. collaborative educational programming for learning disabled children? Zero. How many You know how many children are out there are trying to now? BC. I wonder why. in the emergency room right now waiting to see me when I leave here? Not all of them Mr. McGeoghegan: Because of their court have learning disabilities but my point is, is case. that I know it’s different allotments of funding, I recognize that mental health Dr. Heather Keizer: You betcha. Because services and education come from different the province and the school district were pots of money, but it’s all the provincial held accountable for the law and had to pay budget, and the thing that I find the most because they didn’t provide education for distressing is the lost potential here. that child. We have capable young people who are of We don’t want to be in that position because normal to above average intelligence who we have precedents now nationally. Why do are quitting school and getting discouraged we want to go do that? Why do we want to because they haven’t been supported. Some lobby for every child that has to become a families have had the resources or the court case? We don’t want that. We want to insight and the enlightenment to support be forward thinking, we want to be their children and fight for them every year innovative. You’re an innovation committee. at the school. Not every family has those We need to be ahead of the ball here. resources, not every family knows how to go

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about it, and many families get discouraged. psychology do it here for a fee and it’s Many children get discouraged. I think unnecessary for me to do that. where we start is with our educators and giving them adequate support and move Learning disability is often comorbid, as in, from there. you can have both. It’s very common for a child to have both attention deficit disorder To be fair, Mr. Mitchell, do we know the and a learning disability. My child has that. exact intervention for every child that’s My child has both. Many children have going to work perfect? We don’t, but it both. Not all children have both. They’re not needs to be on the agenda, it needs to be on defined as the same thing. the radar. Attention deficit disorder, frankly, if it’s Mr. Mitchell: Thank you very much. adequately treated and quickly treated, is very responsive to medication. There’s an Chair: We’ll go to Olive and then Kathleen. issue around Ritalin. I’m going to take a side step here off the board and speak for myself Ms. Crane: Thank you. and Dr. David Wong. Both of us prescribe children medications for attention deficit This is so important because what you’ve disorder. spoken about, too, is the resources you personally have, and often there’s so many I know my colleague, Dr. Wong, has been parents there that – lobbying the province for the last 20 years to have Concerta put on the formulary, because Dr. Heather Keizer: They don’t have it. Concerta is a long-acting medication for attention deficit disorder that does not allow Ms. Crane: – have zero resources. I know I abuse. You can’t abuse it because of the way worked with a parent back even in the spring it’s delivered. He was been resisted at every of the year who – her child has been lost, turn to get it on the formulary. and every year she has to fight, and the issue of computer technology in the classroom. This is not a Learning Disabilities One teacher says no way, and that’s the only Association issue, but it is an issue, and as a way that her son is able to learn. result, any child who has attention deficit But my question goes back to a comment disorder who is on social assistance or is on that you made about the justice system and limited income must by definition be put on mental health system. We had a presentation Ritalin. That’s why there’s Ritalin on the actually – or back in the Legislature, may street. have been a year and a half ago – when the minister of health gave us a sheet of drug Yes, we do have high incidence. In fact, usage in the province. I believe it was Prince Edward Island has a somewhat Ritalin and perhaps the generic form of unique genetic pool here for a variety of Ritalin had gone up something like 750%. reasons, but we have a small genetic pool such that, for instance, Dr. Bassett has My question to you and the organization is – identified Prince Edward Island for all her attention deficit compared to learning research on schizophrenia. The best research disabled. Are some of these people done on schizophrenia in the country is in misdiagnosed? It just seems like an awful following families on PEI because we’re high amount of children on PEI supposedly small, the genetic pool is tight, and you’re have attention deficit and I’m curious able to follow families for generations. PEI whether or not they could be learning has a higher instance of schizophrenia than disabled children. Any comments? the national average. It’s a real thing.

Dr. Heather Keizer: That’s a very good Do we have a higher incidence of attention question. So I do diagnose attention deficit deficit disorder? I don’t know that. It is disorder. I actually have accreditation possible – and this is your point – that a through the American Psychological teacher who is on unfamiliar with learning Association to diagnose learning disability disabilities but has heard of and is aware of as well. I do not because my colleagues in attention deficit disorder might assume that some of this is – a learning disability may

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also be attention deficit disorder because this Thank you. is a new area of issue. But I know that’s a conjecture. Chair: Thank you.

Ms. Crane: What I was trying to get at is Charles McGeoghegan. sometimes – because in the public sphere, it appears easy to give someone medication – Mr. McGeoghegan: Thanks a lot for your presentation, it’s very enlightening. Dr. Heather Keizer: Yeah. Most of my questions I think have already Ms. Crane: – in comparison to the been asked, but it kind of revolves around resources they may need – the one in six. Some of those are learning disability students, some are autistic, some Dr. Heather Keizer: True. are ADHD –

Ms. Crane: I’m picturing a nine-year-old – Dr. Heather Keizer: Right, exactly.

Dr. Heather Keizer: The medication works Mr. McGeoghegan: How does a dandy, though, to be frank. professional hone in on what the difference is when they’re doing assessments? How do Ms. Crane: Sure, for sure. But there could they – be a lot of children that if they don’t have the right support, even with the medication – Dr. Heather Keizer: That’s a pretty technical question, to be frank, perhaps Dr. Heather Keizer: Good point. beyond the scope of my ability to answer it here today. There are a variety of tests that Ms. Crane: – if there’s a learning disability we do. We do nationally accepted testing – is really missed. (Indistinct). WISC – a number of different psychological tests to do that. Dr. Heather Keizer: Absolutely. Good point. Excellent point. Yes. In Prince Edward Island autism is identified as a disability, so those children can – we Ms. Crane: (Indistinct). know those numbers, we can remove those numbers. Children with intellectual delays, Chair: Okay. i.e. low IQs, are identified as a disability, they’re removed. Children with physical Dr. Heather Keizer: You can concentrate, disability are removed from the number. but if you can’t – if you can concentrate but you can’t read, then it’s still a problem, You still remain with a significant number right? of learning disabled children. Of those children, the ones that get identified Chair: Kathleen? typically at first are the children who are performing well below the average in the Ms. Casey: Thank you, Mr. Chair. class, which means they may have average IQ and they’re performing below the May I be so bold as to ask the clerk to flag average. Children with above average IQ the ask by the Learning Disabilities may be performing at average, or just at Association that the Province of Prince average, and so they’re missed and they Edward Island officially designate learning would rarely be referred. disability as defined by LDAC 2002 as a disability on Prince Edward Island so that The people who know the difference are the we will make sure that we discuss as a parents. The parents usually identify this recommendation on our final report. I don’t before the teachers ever will because they think there’s anybody around the table who know what their child’s potential is, they’re would disagree that this wouldn’t make a with the child every day, and they’re with wonderful recommendation to the the child before they ever went to school. Legislative Assembly.

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What happens now is a teacher would tend, I Chair: Thank you. would suspect, to flag a child who was a behavioural difficulty in a classroom. Colin LaVie. They’ll tend to flag a child who has shown a significant change in behaviour or Mr. LaVie: Thanks, Chair. performance, but if a child is adjusted socially, does not have a psychiatric illness Thanks for coming in. One thing about and is not misbehaving, is able to memorize going last, all your questions get answered, as opposed to read, they’re going to be but one question: Other than BC with the invisible except for the parent noticing court case, what’s the progress in the other something. provinces? Is there any progress (Indistinct) – Once a child’s identified, let’s say they are this difficult child, they’re flagged, then Dr. Heather Keizer: Progress with regard their name is forwarded for a potential to educational interventions? psychological assessment. The wait for that may be long and may be arduous if the Mr. LaVie: Yes. parents are not willing to pay. It costs about $1,500 for an assessment in PEI. Dr. Heather Keizer: I know that the Learning Disability Association has Mr. McGeoghegan: Yeah, I actually had representation in a number of provinces. We some cases of that where parents – and one all continue to lobby, we all continue to in particular where they didn’t want to wait provide outside school support for families. for the assessment for two – and I think their I think that that’s the tack that many of us daughter was in grade 3 at the time. They have taken, organizations have taken, had to go to Halifax I think to get the because there has been a lot of need around assessment and then enrolled their daughter the departments of education to be aware in Sylvain and it actually paid off. The and to be able to intervene appropriately, student is one of the top in the class now, is and I think that that’s tended to be the tack in high school now and doing quite well, but of Learning Disability Associations have it cost the parents – been to kind of step outside the public school system and provide support within Dr. Heather Keizer: Absolutely. their own organizations.

Mr. McGeoghegan: – money to – both for In terms of movement in terms of the the assessment and for the Sylvain training, departments of education, the registering of but it did work. But, again, why does it have teachers and requirements of training in to come to that, yeah. learning disabilities, the study in 2008 is the last one done on this. Dr. Heather Keizer: In the Moore case in BC the parents had the child assessed early Mr. LaVie: How many provinces have on in elementary school. They went through organizations like yourselves? 15 years of fighting. They were told by the school district that the child had to go to Dr. Heather Keizer: I believe we’re private school because it wasn’t within the represented in every province, or are we budget ability to cover this education. The not? child went through and ended up going through private school and getting an Martin Dutton: Most provinces and one intervention, not unlike Sylvain I suppose, territory. but every child is different. At the end of those 15 years and when they won the court Mr. LaVie: Okay, Chair. case, they deemed the department of education and the school district to be Chair: Okay. On behalf of the committee I responsible for the child’s education, that it would thank both of you for coming and was discriminatory. This is a number of providing us with this information and students who actually should be educated in definitely it’ll be used in our concluding end our school system. We need to provide report to the Assembly this fall. intervention.

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Dr. Heather Keizer: Thank you very much. presented to caucus at that time the number Thank you for your patience. was one in 88. The National Epidemiologic Database for the Study of Autism in Canada Some Hon. Members: Thank you. shows an increase in children from 39% to 204% from 2003 to 2010. That study, I Chair: We’ll have a brief recess while the believe, only included children up to age 15. next presenters get ready. There’s nothing in the study at all about those that are already adults or older [Recess] teenagers.

Chair: The committee will reconvene. Based on the numbers in PEI, we could have as many as 1,000 individuals with autism. I want to welcome our next presenters, Stars We know that there’s 330-plus pre-schoolers for Life Foundation, and I’m going to turn it and school age children with a diagnosis. right over to you, Carolyn. You can identify The total number of adults is unknown. We yourself at the beginning when you speak know that there’s six living in Hillsborough and then we’ll proceed. Hospital, one in Sherwood Home, five adults who do live in the Stars for Life Do you want us to let you go through the House. The Stars for Life supports 30 more presentation? adults in our day programs.

Carolyn Bateman: I think so. That would This year there are 17 individuals with be best. Asperger’s going to school at UPEI and six of those are supported by the Stars for Life Chair: Then we’ll ask questions afterwards. Foundation with – as educational assistance to help them through their school and Carolyn Bateman: Right. navigating the university levels. We also have 14 families still on our wait list. Chair: The floor is yours. There’s immense pressure on families. Carolyn Bateman: Thanks very much, There’s concern about the child’s education, everybody, for this invitation. I’m Carolyn there’s no end in sight for the need to Bateman, I’m president of the Stars for Life around-the-clock care and supervision, and Foundation for autism, and this is Rhea what are the opportunities for their child’s Vardy MacPhee, she’s our director of autism future once school ends? There are constant services. concerns also about what happens when parents die, which has already in some Later on, when you have more direct families. questions about education and our role with the education department and schools, Parents now find that they’re forced these Rhea’s the one that has more direct work days to have their autistic child leave the with them so I thought I’d bring her along so school system at age 18. When my son went she could answer your questions. through we had an option to leave him there till age 21. When they come out of a school Some of you have heard this presentation system with no services we’re just moving before, there are a few little updates in it, but the education budget over to social welfare for some of you who maybe have not heard budget and it’s not really helping the child in me speak before, there is a link between any way, shape or form. Most are autism and the challenges that they have and developmentally not ready for an adult the link between education and the rest of world and most are not ready and their lives. unprepared for the workforce. How are they going to live in society and how are they Just a really quick recap. The Centers for going to continue their education? PEI has Disease Control, and Developmental no cohesive plan for all these children that Disabilities Monitoring Network, in 2014 are leaving the school system. updated their stats on autism and they now indicate that one in 67 children with ASD No child should be left behind, especially and one in 42 boys. So in March when I not those with autism. As we know, a child’s

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education doesn’t stop at age 18, so why Canadian Association for Community should it be for this population. Most are Living’s ready, willing and able initiative. going to require assistance to continue their education, so without it the vast majority There’s an assumption that when you will remain unemployed for the rest of their graduate high school you go on welfare, and lives, dependent on the welfare system, and that was a quote by Michael Bach, the increase costs to the health care system and executive vice-president of CACL. But in often the judicial system. the next number of years we’re told that there’s going to be a million jobs that What you may not realize is that a lot of Canadians will not be able to fill. people with autism can learn and function productively and show gains from I’d like to tell you a little bit about a appropriate services and continuing company called Specialisterne, and the education. They can become productive impact on the Denmark economy. It’s an IT members of our community with the proper company. It was started by a dad who was a support systems put in place. computer scientist and he had a young guy with Asperger’s, and he realized that as his Autism has been in the news a lot over the child grew that there was no place for him to last number of years, but more recently it’s go or to be employed. He started a company been about autism as an untapped employee called Specialisterne. Based on employing potential. Many individuals with ASD have 29 to 35 employees with autism – he special interests and talents at which they employees only those with autism – a lot of excel and these skills are often transferable them would be the high functioning form of to the workplace. They have great attention autism, Asperger’s. to detail. Strong structured ways of thinking and working, perseverance in repetitive From 2008-2012 the social economic value tasks where their non-disabled peers become to the Denmark economy was $49.4 million. frustrated and quickly lose interest, are The savings were created through savings prime environments for success with made in the Danish welfare system, through individuals with ASD. Individuals with income and personal taxes and pension ASD are reliable, truthful and can make contributions. After deductions from the excellent employees. public investment made by government to support the individuals with autism in their We don’t see many individuals with autism jobs, the net value to the Danish economy in the workplace and it’s not that they can’t was $13.5 million. That is kroner, by the work, it’s that they can’t handle the way, not US dollars or Canadian dollars. interviews or the work location may be very For every krone that was invested in noisy and hectic. But research shows that employees by government with autism, it unemployment for this population is much generated 2.2 kroner in taxes and lower than it needs to be. A University of contributions to the Danish state coffers. Calgary professor sites that in the first two years after high school more than 50% are Specialisterne has expanded to the USA and unemployed, and I would hazard a guess in is now in Canada. It’s headquarted in PEI that’s probably a lot higher. They Toronto with offices in Vancouver, Quebec struggle to find any work despite their City and Calgary, and their goal is, remarkable talents. worldwide, to hire a million people with autism. There’s a national movement to address this ever-growing social issue and PEI really, I We believe that the PEI government has a believe, has an opportunity to join this possibility here that they could look into national movement as a leader in our opening a location here. If you want some community towards employing persons with more information on that specific interview, ASD. The federal government recognizes it was on The Current with Anna Marie ASD employment potential. In the federal Tremonti, and the website is there that you budget there’s $26.4 million over four years can hear the whole interview. There’s a connecting Canadians with intellectual large amount of information on disabilities and employers. The funding Specialisterne on the website right now. included $15 million over three years for the

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Adults with autism have rights, the same as opportunities to live outside of their family anybody else. They have a right for a quality homes. of life, protection that respects their vulnerabilities, dignities, safety and self- Our current role in the community is that we worth, and an education that meets their have 30 clients, as I said before, from severe needs. They also need a place to live outside to high-functioning individuals, plus 14 their family home as families age. They more on the waiting list that do not have any have a right, really, as anybody would to job services. The families we serve come from opportunities to become contributing across the Island, from Miscouche to members of their community. Montague to Morell, and Rhea travels to all these schools and to all the family homes. There are services in Canada. CommunityWorks Canada is an evidence The Stars for Life is contributing to the and informed vocational training program economy of PEI through the employment of that helps youth and young adults make the our university and college graduates as transition to independent adulthood, higher educational assistants for our clients. We education and/or employment success. It have over 20 full-time positions that have was developed in Southwest Autism been created. Resource and Research Center in Phoenix and is now replicated in Calgary at the Health care doctors are now referring Sinneave Family Foundation’s the Ability patients to the Stars for Life for services and Hub. we’re involved in the education system. We are called into schools at least once a month Over 500 individuals with ASD have been assisting with transition planning from all served through the Ability Hub and there’s the various communities, but we get no been significant outcomes noted in funding for this work. The Stars for Life vocational success, staying on task, operates our social skills and employment initiating social interactions, asking for readiness programs through our fundraising assistance and appropriately engaging in efforts, currently with no support from important social exchanges. This substantial government, and this is not a sustainable output, personal and community source of funding, as we all know. development and employment readiness comprises an important and efficient social Just to give you a highlight of some of the return on government’s investment. clients that we work with. We have two clients who are now in the workforce full- But for those with autism, care begins at time, one who is part-time in Minister birth and it doesn’t end until life ends. It Vessey’s office who has been very doesn’t go away. The Stars for Life was successful. I think I mentioned him to you in founded because of the lack of services in caucus. Where the average person could do the province when our children left the 400 data entries he can do 1,000, and he’s so school system. The one mom that we started good that they have extended his work and this service with has since passed away, and have kept him on. He’s been there how long as my husband has passed away, both now, a year and a half? families are now left with just one living spouse. That need in PEI is growing daily. Rhea Vardy MacPhee: A year in June.

Our mission was to safeguard the future of Carolyn Bateman: A year in June. Six, as I children with autism by providing integrated said, are now attending post-secondary lifelong living and learning opportunities for education with one-on-one support from them and to help them keep connected to Stars for Life. We have one individual who their communities when they leave the was aggressive in high school who is now school system. Our goals were to provide working two days a week at Sporting continued education, create employment Intentions and is volunteering at Habitat for training and job opportunities, and that is Humanity. One is graduated from UPEI with with hands-on programs, train and support a history degree for whom we’re now educational assistants, provide job coaches assisting to find a job coach. He would be and caregivers with training, and provide great in a library environment, he’s awesome with computers, he’s a workhorse,

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and if anybody has a job, we need one for that goes into preparing and creating him. One is attending Holland College who programs, travel time, for which we get no was failing high school but is now at the top funding. of his class, and that just highlights a few of the individuals that we work with. Also, the Stars for Life now has to raise $150,000 per year to fund our current level Our Asperger’s clientele are the most under- of services and our day programs, and as I served individuals on the Island: 73% of our said before, fundraising is not a secure current clients now have Asperger’s source of funding and it’s not a long-term syndrome and 45% of these did not receive solution for the required services for those their diagnosis until after they high school, with ASD on the Island. Over the past so they never hit that 330 number. Because decade there’s been little change in the they appear on the outside to be very disability support program plan funding and competent, they received the least amount of there’s been increased cost in wages, and support from our education and social we’re at a limit as to what services we can services systems, and these are the young provide to Island families. people that are often bullied, ostracized and Due to the extreme growth and demand for are very often broken and depressed by the our services, the foundation has had to hire time we get them. These are the individuals an executive director and a full-time who, as a result, are now becoming administrative assistant, and due to our increases stresses on the health care and budget constraints the board of directors has social services system, yet these are the passed a motion to freeze new intakes individuals that have the best chance of including emergency services requests to the getting a job and becoming independent, and 30 committed clients. As I said before, we yet they’re the ones that get the least now have 14 on our wait list and that grows support. monthly.

Successful employment requires interviews What is the solution? There needs to be a and it’s based on social skills and network of agencies, public and private communication, and those are areas that our partnerships, that can make access to individuals really do poorly in. The existing appropriate opportunities available to federal and provincial programs that everyone regardless of where they live in employers can use to hire employees really Canada, and that’s a quote by Dr. Wendy disqualifies our population. Roberts, developmental pediatrician for the Integrative Services for Autism and The Stars for Life have a lot of operating Neurodevelopmental Disorders. stresses. We were encouraged to build the home by minister – or not to build a home, Our recommendation is that there needs to but when we built the home Minister Currie be a continuum of services with a was minister of education at the time – to collaborative approach from education, expand our services beyond just a home for health and social services. It’s ultimately a few people, to serve those living in the one budget – PEI. We need reliable access community, so we tailored and developed to specialized psychologists to help those our services in the areas that families needed with ASD, especially Asperger’s, in the most: day programs, continued education school years. and job readiness skills. A realization that our work is not done at The Stars for Life currently supports four age 18. There’s still a huge amount of full-time positions at the program growth that has to take place in order for development supervision and family support those with ASD to become independent, level, and these positions are crucial to contributing members of our community, developing and sustaining clients’ individual and a realization that educational assistants programs and deal with the day-to-day crisis are needed to assist young people with ASD in working with individuals with autism. All to continue their education. The Stars for individual (Indistinct) from the disability Life needs funding to support individuals support program go directly to pay the who have left the school system to learn client’s one-on-one educational assistant appropriate life and job skills, to ready them hours, but there’s a huge amount of work for the workforce, educational assistants to

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continue their formal education, job coaches Ms. Crane: (Indistinct) because I’m just and job readiness programs. curious, when you’re trying to help so many people and you mentioned that there’s such Doing nothing is really not an option. a variety in people’s situations, that again, if employers out in the community have the We recommend, as well – through potential because they know they can hire – Innovation and Advanced Learning, we need government to look at the possibilities of Carolyn Bateman: My first thing I’m Specialisterne expanding into PEI and what thinking – it depends on what that situation programs we can develop here. We need of that – in that company is in. If they’re assistance for the Stars for Life Foundation growing and expanding they may not be to follow their example and to find paying taxes because they have so many tax employment for those with ASD on the credits, as it were, from the expansion, so Island. giving them an additional tax credit may not have any effect on them at all. With government’s support, the Stars for Life Foundation’s initiatives for education Ms. Crane: What I was trying to get at is and employment services will align with the the – it would go with the person, right? If national initiatives. With proper support, you’re going to hire Johnny or Susie or Stars for Life will assist in creating a net whatever because you’re hiring them, that positive effect on the Island economy. company, whether it’s a co-op or whether Please don’t let their school years go to it’s a – no matter kind of business in the waste. With government help we can make a private sector – when they file their difference, be a leader in the country in corporate taxes, they actually get an employing those with ASD, create a better incentive to be able to hire. Because you’ve quality life for all those citizens and got a high unemployment rate. You said ultimately save the PEI economy money. yourself it’s well over 50% and it’s Island- Please don’t let our children be left behind. wide, and with the number of people coming into the system it looks like it’s going to Thank you. grow quite a bit as more people end up graduating. It was just a thought that it Chair: Thank you very much for your might be able to help employers out there. presentation. I open the floor for questions, creating a list. Rhea Vardy MacPhee: From my experience, it takes somebody who Olive Crane. understands our situation to give an individual the chance, right? So I would go Ms. Crane: Thank you. around and if I see a position that’s available, making that connection with the My first question, I guess, you talk about an person. Having them understand that we’ll intervention in Denmark that’s helped find have support with them, the benefits of employment and in one of your having somebody on the autism spectrum. If recommendations you also talk about the there is an incentive that makes it a little bit need for employment. How does your group more favourable for this person being hired feel if PEI government actually provided a – for example, I’m currently in the process tax initiative for any employer that would of getting some Skills PEI funding for a hire anybody that has the diagnosis of person to work at a position. It is definitely Asperger’s or autism in the private sector? incentive for them to hire them with So if someone, for example, needed and everything else being equal. If we don’t go could support on their own eight hours, that through the interview route and the employer in the private sector would pick interview – them up and instead of putting extra resources, they’d get a tax incentive to be Ms. Crane: Sure. able to do so, and it’d be ongoing no matter how many years. Rhea Vardy MacPhee: – would be discounted, but if I can make the appeal to Carolyn Bateman: Difficult question for somebody who’s interested, then we me to answer.

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certainly – offering any incentive would do I’ve done a number of presentations to – that. when they have PD days, that they don’t – the EAs don’t necessarily have structured Ms. Crane: Just because in the general presentations like the teachers would so they population there’s so many other services would call us in to do presentations to the you’re competing against, not to mention EAs. They’re asking specific information – I how specialized the need is for your client, have this kid and this is what his scenario is, right? what do you suggest? Giving them some advice on some of their more challenging Rhea Vardy MacPhee: Correct. So there cases that they haven’t been able to figure would be a benefit on a case-by-case basis out. I’ve had EAs calling privately, not of having that to offer I believe, yeah. disclosing who they are because they don’t have the resources that they require for the Chair: Kathleen Casey. challenging child that they require. That has kind of been the majority of what our Ms. Casey: Thank you, Mr. Chair. involvement is.

My question is for Rhea. Stars for Life With the transition process, at that point, if Foundation has been so successful, and I the family decides that they want to continue know Carolyn mentioned it in her services with us after school, we would presentation that Stars for Life has 30 work with the resource teacher in having clients, 14 on the waiting list, and now you some visits at the end of the year, making have doctors referring their patients or that move from school to school system to clients to your organization. our program as smooth as possible. One other opportunity we have is we get some of I know you’re a product of your success and the – they’re not educational assistants, they that’s great, but can you explain to our have a different title, they would be around committee what your interaction is with the the co-op programs, the workplace school system and how often – do schools – assistants, I think they are called – calling and I know you said that we’re not – you’re looking for volunteer time. We try to set up not getting any support or funding. Just different volunteer opportunities within our enlighten the committee on how much time services to kind of help them with their co- you spend with the school system and op placements when there is a challenge of dealing with people who have autism finding a co-op placement. spectrum disorder. Chair: One more? Rhea Vardy MacPhee: At present, the majority of my contact with the school Ms. Casey: Rhea, can you tell me how system is through word of mouth. I’ve been much you are compensated by the education with Carolyn for quite some time. We’ve system? When you go into the school never officially advertised our services system, how much are you paid by the because there’s always been a huge influx of education system to help them with the people coming forward. The school system children who are involved in their system has found out about our services through now? word of mouth – families requesting us to come into transition meetings. So that’s Rhea Vardy MacPhee: Nothing. when kids are in high school, when they’re ready to move out on their own. They have Ms. Casey: Nothing? meetings a couple of times a year that they would have different agencies come in to Rhea Vardy MacPhee: No. My salary is see what’s the best match for individuals fundraised by the Stars for Life Foundation. with all different sorts of disabilities. Ms. Casey: So the education system’s Usually the fall and the spring I’m two to calling you in to ask for your expertise but three times a month on average that I would they’re not paying for your services? be called in to kind of sit in on these Interesting. Thanks. I’ll leave it there for meetings. That’s the majority of what my now, but then I – if there’s others who have contact is. Doing presentations to the EAs. questions I’ll come back, thanks.

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Chair: James Aylward. I got a little sidetracked. I don’t know if I answered your question. Mr. Aylward: Thank you, Chair, and thank you both for your presentation as well. Mr. Aylward: No, you did. I mean, you gave a very good overview of financially My first question or comment would I guess where your organization is and what you come on the heels of what Kathleen was just need to provide the essential services that talking about. So you fundraise $150,000 a you do provide. year. You had a very interesting slide on Carolyn Bateman: Try to. I don’t know if Specialisterne, the company that was we’re going to make it this year. founded out of Denmark and you told us that they’re branched now into the US and Mr. Aylward: And that’s your entire budget Canada – I believe you said Vancouver, for all of the work that you do? Calgary and Toronto – and one of your recommendations is for the government or Carolyn Bateman: Yeah. For day for the province to look at seeing if we can programs, yes. To operate the house itself bring them here. we get 150 to – just for the overnight and weekend staffing for the home. Have you had any discussions with this company to see what their appetite would be Mr. Aylward: Right. to branch into PEI?

Carolyn Bateman: All the money that we Rhea Vardy MacPhee: I did back in the operate – the individuals’ programs – come spring. I talked to I think their general from DSP, so somebody might have five manager of their Toronto site. They were in hours a week and we bill $19 an hour for an the works of getting established there, and individual. Some people – there are a few they are very pleased to have the invite to that have full day programs, so then they get come to PEI to look at what opportunities the maximum from DSP but we have to they would have here. work within that. We’re at point now that wages have gone up, EI has gone up, CPP Mr. Aylward: Is there any indication what goes up, so the only thing we can do, resources they may require in order to set up because the DSP hasn’t changed in 13 years shop here? or more, is to cut back on their hours. If we give an employee a raise – and these are Rhea Vardy MacPhee: I’m trying to university grads that we’re hiring, a lot of remember. We did have a bit of discussion them – about how their funding – and it was provincial government funding that they did Rhea Vardy MacPhee: Teachers. receive to (Indistinct), but I can’t remember exactly what she said. We didn’t get into a Carolyn Bateman: – teachers who are whole lot of that side of it. looking for jobs and we’re paying them starting out between $15 to $17 an hour, and Mr. Aylward: Okay, and just one last with all our payroll related costs then we bill comment – at $19 an hour and we’re really stretched to do that. A lot of the extras that happen Chair: Okay. around if a family comes to us to ask for services, they may not be in the school Mr. Aylward: – or suggestion, Chair. system or they may be but then Rhea goes out to Summerside, Miscouche, Montague, You talked near the start of your and there’s mileage to be paid for Rhea, and presentation about an individual, I believe, there’s all the time that she’s involved in that’s working with the Department of dealing with the intake and getting to know Transportation and Infrastructure Renewal – the client that haven’t even started on our services yet, but we still have to pay for that Ms. Casey: Huge success. cost of doing that. So it’s a great challenge. Mr. Aylward: Pardon me?

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Ms. Casey: Huge success. There needs to be a huge education for employers on the benefits of hiring those Mr. Aylward: Yes. So on average, the with ASD. typical person can do data entry of about 450 and this individual is excelling at Mr. Aylward: I definitely think that’s around 1,000. where the message needs to be, is we need to get that message out of the advantages of Unidentified Voice: Right. hiring these individuals and employing –

Mr. Aylward: What I’d almost suggest is Carolyn Bateman: We have some rather than maybe looking at tax credits for individuals who are – most of them I think companies, we provide funding so that that are so computer savvy it’s mindboggling. can become an education program and so There is one company here, Sculpin, that it’s communicated. does game testing, but I don’t know that we’ve approached – actually, I sent an email I mean, how many employers out there a week ago to the owner of that company, realize that – I mean, that’s an incentive but it’s to educate them about the benefits of alone, to be able to get an employee that can hiring somebody with ASD. I actually sent excel from 450 data entries to 1000. I mean, them the information on (Indistinct), hoping I would want that person working for me. that we can open that door, if they would – the biggest problem, like I said, is the Rhea Vardy MacPhee: Yeah. interview process.

Carolyn Bateman: We have another young If we could get companies like them to work man that’s working part-time at Kwik Kopy with us, then I think we can find a lot of jobs and he doesn’t have a high level job, he’s, I for some of these guys. guess, stuffing envelopes and doing a lot of – Chair: Thank you.

Rhea Vardy MacPhee: Putting pamphlets Mr. Aylward: Thank you. together in packages for different – Chair: Robert Mitchell. Carolyn Bateman: Yeah, but there again, they gave him a job and it’s done in a flash, Mr. Mitchell: Yes, thank you, Carolyn, and they’ve promised to keep him in work. once again.

Mr. Aylward: Keep him, yeah. I’ve been involved in your presentation many times over the last few years and Carolyn Bateman: These guys will work, every time you’re so passionate. You’re you know. If you give the average person a such a passionate advocate for those with job like that – they’re just so thankful to ASD. The work you do is tremendous. have a job. I guess when I look at where you are today, Mr. Aylward: Yeah. and I know your fundraising is what carries your dollars through, if all things stay the Carolyn Bateman: And they don’t have same, and I know you have 14 adults on the that sort of like: Oh, this is boring. They just waiting list, in reality when would your next want to work and they’re great at it, and person be able to come in that you’d be able they’re so – if we looked even within our to assist? How far out is that before you can own government departments or any data actually say somebody new is coming in? entry job, library type recording, filing jobs that – you have a hard time keeping an Carolyn Bateman: We’re stuck right now. individual employed in because for most of We can’t do any more. For the number of us we get bored by it, but they can latch onto employees we have that supervise – I guess that, and if that’s their thing they’ll love to one of the things that we do is we’re not do it and they’ll do a bang up job for you. bringing people in, like, into a room where they worked with every day. These people are going out into the community, they’re in

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various places around the community doing have available, employees that could add so their programs because that’s where they much to your companies and that type of need to learn it. We have one staff person thing? And just have a kind of a discussion who goes around and just supervises, checks with the whole chamber as a group to say: in, to see how things are going. Here we are and this is what we could provide if (Indistinct)? It’s difficult to do because it is an individualized program. Everybody’s Carolyn Bateman: We have not gone to the program is different. (Indistinct) is different. chamber. It’s time consuming to do that type of a program, and with the number of employees We’ve done presentations to Rotary in the we have we couldn’t do that. We would past, I’m trying to think where else I’ve need another day program supervisor before done presentations. I think we grew in the we could ever expand anymore, and we last two years so much that we’re can’t expand anymore because we don’t continually playing catch up, and when all have the funds. of our focus is on fundraising so that we exist, it’s affecting our ability to grow. In Mr. Mitchell: Yeah, so typically your other words, to do these presentations to the budget would have to push to over 200K chamber of commerce or to go to employers, probably before – or even the amount of time that we spend on an individual’s program, because we’re just Carolyn Bateman: Yeah. tied up all the time.

Mr. Mitchell: – you can make any Another way we look for funds is operating advancement at all. grants from different organizations. It could be Autism Speaks, it could be Telus. Any Those 14 individuals you have waiting out one of those – none of them will give you there, right – like currently, they’re at home any capital costs, none of them will give you with families and just using supports that are any operational costs. It has to be a new coming that way. Is that where they are? Are program, so then we have to get inventive they coming into you at all for – about what would be good for us to have that would be convenient and really assist Rhea Vardy MacPhee: No, not at this our programs down the road. But it’s that point, and they don’t have anything at home. staff, then, that has to create that document, which takes away from the programs again. Mr. Mitchell: Okay. Mr. Mitchell: I understand that, too. But I Rhea Vardy MacPhee: They’re sitting think there would be a positive response home doing nothing, a lot of them. A lot of from the business community all over Prince the times they come to us, they’ve got their Edward Island from both chambers or, I nights and days turned around because they guess, all, tip to tip, actually. don’t want to socialize with other people. They have nothing to get out of bed for in I know the success story within government, the morning. Families are frustrated and and I think that’s resonating through other pulled to a point that they’re at breaking departments and people in other departments point and they’re looking for help, and I are looking for ways to assist, but I think it have to say: Sorry, we don’t have any room. would be very beneficial to at least have at least one presentation with the chambers. I’ll Mr. Mitchell: Yeah, it must be very bet you – difficult for you as well. Carolyn Bateman: It’ll be on the list for One other last comment just as I leave. The January 2nd. private sector on Prince Edward Island is so willing to step up to the plate all the time, Mr. Mitchell: Perfect. I think they will all especially in your fundraising events, which step up to the plate to assist. I see many private sector companies at it. Have you brought a plea to the chamber of Thanks. commerce to say: Look, this is what we

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Carolyn Bateman: Thank you. than it just going back to general revenue. Maybe that’s something we can put for the Chair: Olive Crane. clerk for us to have discussion with because the projections will be taken – government Ms. Crane: Just a quick question. Has your from now on their spending until the end of group ever put in a proposal to Community March, and if there is surplus money there it Services and Seniors for core non- shouldn’t – government organizational funding or NGO funding? Carolyn Bateman: It would be lovely to think we could get a little bit. Carolyn Bateman: Yes. Ms. Crane: Well, $3 million is a lot of Ms. Crane: What was the result? money, (Indistinct) backlash –

Carolyn Bateman: We put in a budget Carolyn Bateman: We could do a lot with every year – because we get the $150,000 to that. operate the house, it’s that. Ms. Crane: Yeah. Ms. Crane: So is that considered an NGO? Chair: Charlie McGeoghegan. Carolyn Bateman: Yes. Mr. McGeoghegan: Thanks a lot for your Ms. Crane: Okay. presentation.

Carolyn Bateman: That portion is I guess just to be clear, the home does get considered an NGO. We submit our budget. $149,000 provincial funding to run the basic Every year we put in for more money. home itself. Actually, before the ink was practically dry on the very first $150,000 that we were Carolyn Bateman: That provides just the promised, we got it for a few months and overnight and weekend costs. The extra then the 5% cutback hit and so we were money that the individual gets – the three reduced to $145,000. I can’t remember individuals that live in the house – actually exactly the timeline – six months to a year there’s five – two are in independent suites. later that amount, 5%, was given back to all They only get five hours a week of staffing the NGOs, but 5% of $145,000 is not time from us, they don’t need supervision. $150,000, it’s $149,000. So we’ve been We have three that require 24-hour care. Of operating for less than what we started, and those three, each individual gets their DSP that budget when we started to operate the to the maximum – house was so bare bones that we had to scrape by. Mr. McGeoghegan: Right.

Another thing we’re fundraising for is the Carolyn Bateman: – and on top of that, that food that we put in people’s mouths in that takes care of their day, the same as anybody home because they only get welfare and else’s day program, so then it’s weekend and they can’t eat off welfare and we can’t take overnight care that we need, that it can’t be them down to the food bank. Every year we covered by the DSP. So that’s the funding operate such that we’re requesting more we get to operate the house. money for our budget but we never get it, and I don’t think any NGO is getting any Mr. McGeoghegan: Okay. Each individual increases or has recently. Times have been that gets provincial DSP funding, that tough. funding goes directly to you guys for programming during the week but not on the Ms. Crane: Just last year community weekends, and that’s where the other services was left with a $3 million surplus, funding – and I’d be curious if you touched base with them now to see what their projections are Carolyn Bateman: Yeah. for the rest of the year because it’d be great if you could get some of that money rather

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Mr. McGeoghegan: Okay. So there is some Mr. LaVie: And was it $150,000 or provincial funding, it’s not that there’s none, $149,000 then? it’s just – Carolyn Bateman: A hundred and fifty. Carolyn Bateman: No – Mr. LaVie: It was $150,000 then? So it Rhea Vardy MacPhee: It’s attached to the hasn’t increased any? person, not to us. Carolyn Bateman: No, so we’re going Mr. McGeoghegan: Exactly. behind because we’re not keeping up to the cost of living. Carolyn Bateman: Yeah. Chair: Pat Murphy. Mr. McGeoghegan: Yeah, so there’s the – Mr. Murphy: Do you have any affiliation Mr. Aylward: It’s like they’re their or alliance with other such organizations? landlord, essentially. Like, I know up in western PEI there’s the Community Inclusions program and they Mr. McGeoghegan: Yeah, the home operate the Alberton House and they operate funding and then the DSP funding. a workshop in Tignish and in O’Leary –

Carolyn Bateman: Yeah, it’s like we’re Carolyn Bateman: I think – operating two separate things. We have the home and we have the day program. Mr. Murphy: Actually, they have a bakery there in O’Leary where they bake goods and Mr. McGeoghegan: Right, okay. sell them and it employs people. I’m just thinking, like, as far as funding goes, would Carolyn Bateman: And we also do respite it not be better for everybody that’s dealing care. with this same issue to go to the province for more funding? Mr. McGeoghegan: You do? So that would be, 1ike, one-off – Carolyn Bateman: Well, why we started Stars for Life itself is because the existing Carolyn Bateman: Yeah. communities, either QCRS or Tremploy Inc., weren’t specifically meeting the needs Mr. McGeoghegan: On weekends? of those with autism.

Carolyn Bateman: On weekends. Isn’t it What a person with an intellectual disability mostly? may be able to cope with is not necessarily the same as what you’re looking at for a Rhea Vardy MacPhee: (Indistinct). person with autism. Many of our guys with autism don’t have good fine motor skills so Mr. McGeoghegan: Okay. they won’t be good in a bakery. Tremploy has a workshop with machinery. They can’t Chair: Okay? handle the noise so that’s not good for them. So there are a lot of those issues. Mr. McGeoghegan: Okay. The way some programs – I know Chair: Colin LaVie. Tremploy, they rotate their staff every six months. That’s not good for a person with Mr. LaVie: Just one simple question. How autism, those types of changes and rotating long ago did you start getting the funding staff all the time. There’s a lot of differences from the government, provincial? and it’s why the Stars for Life started itself because to address – the same way we have Carolyn Bateman: When we – 2011, I in the school system. We need specific think it was. autism services and we have autism specialists. That doesn’t go away when or change when we leave the school system.

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We’ve done some training with QCRS on with these young guys. I shouldn’t say autism because they do have or have had young guys, there are girls too. some clients in their system that are on the autism spectrum. Have we done anything Chair: And final question. with up west? I don’t think so, have we? Ms. Casey: Thanks, Mr. Chair. Rhea Vardy MacPhee: No. Chair: (Indistinct). Carolyn Bateman: With Community Connections I think it’s more of a distance Ms. Casey: Thank you. thing there. I’m still reeling from the fact that you give I know there are some families up west who consultation to the education system but are are accessing services from Community not receiving any compensation for that. Connections. One dad I talked with the other Have you ever thought about sending them a day has one – I think his son is quite severe bill? and basically he’s there because he has – that’s the only place for him to go and Carolyn Bateman: Could we? they’re not necessarily equipped to deal with some of the issues that folks with ASD have Ms. Casey: The only other thing is when I or even – I don’t know about the knowledge listen to your presentation, it’s obvious that to address it. I shouldn’t be presumptuous you need more staff so that you can take at there but just as I said, there’s a reason why least the 14 off your waiting list. we started this. It’s because these kids don’t fit into the regular group home the way You talked about the continuum of autism they’re operated or the regular day program services and the collaborative approach. that existed in the province. The needs were How do you see education helping the social quite different. services department working collaboratively with your organization? For instance, I guess to make a point, one of our young guys that came to us, he Carolyn Bateman: I think there has to be graduated from high school with an some sort of a committee struck within each academic diploma. His mom didn’t know department to sit down with the community what to do so he went to day – K & K at large – us and the Autism Society – to see Quality Care. He had Asperger’s, he was what are the issues. When everybody works pretty high functioning, not really mature in in their own little pocket, you’re not really his social skills or anything but he took naps solving the problem, you’re just taking one with the rest of the people who had an issue and moving on to the next department. intellectual disability who were there. He We really do need to look at how we’re had a little job wiping down tables. After a going to continue the education because couple of years of that his mom felt that he ultimately if these young guys don’t get wasn’t growing and he wasn’t getting jobs, it’s going to cost us a whole lot more anywhere, so he came to us and the money if we don’t look at that, and transformation in that young man is especially for some of the young people who phenomenal. He’s the one with the are higher functioning. We have to look at (Indistinct). He could teach the professor in psychologists in the school system. university and can correct the professor if he made a mistake in class. I’ve been to a lot of conferences in the States where a school has a psychologist That’s the type of – we’re dealing with right in the school. A teacher addresses an people – over 70% of these kids don’t have issue, she sends the email off to the an intellectual disability of the sense that psychologist and the psychologist comes you could think normally, it’s social, it’s and works with a group of kids. It’s communication, it’s very different. The phenomenal some of the things that can stresses that they have in operating in daily happen, and it may not be a possibility here, life with noises and sensitivities and but I think we still have room that we can obsessive compulsive, it’s very different and improve things greatly. Because if we don’t there’s a very different approach to working fix it in the school system, let’s say with

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psychologists and if they – you know, these Because I know of one case where this kids are depressed or – there’s one young individual’s put in the hospital so he man that we did work with in the past who is couldn’t get day services, and that’s what he now dealing with the judicial system needed. They locked him in a room because because – we need to talk start with these they were afraid he was going to hurt young kids early to deal with these issues, himself, but we couldn’t have our day not as adults. It’s too late then. program staff accessible to this person because the funding was shut off because he If we deal with them appropriately in the has gone into the hospital. school system – and I’m not saying that we take those kids and let’s give them life skills There needs to be more of a continuum of – because they do need academics because care instead of: No, okay, it’s not my we’re never going to be able to get them a problem now, it’s gone into medicine, it’s job unless they’ve got that. But they also gone into education. They need to be able to need the supports to work their way through flow back and forth. From my experience. the academics. Ms. Casey: Thank you. I’ve always said that you’ve got one kick at the can for your education, your formal Chair: Just a little question. education in the school system and we can work on the job skills and the life skills Mr. McGeoghegan: I’ll be very brief. when they leave the school system but we can’t work with kids who are by that time Chair: Charlie McGeoghegan. depressed and have had a really rough time through the school years and really needed Mr. McGeoghegan: I think your last that support, more support than just – comments are probably some of the most (Indistinct) the psychological support, I important today. I found that with guess, is really important and the individuals where that situation has communication. happened.

Rhea Vardy MacPhee: So can I talk to that In your opinion how do we get beyond that? too? What I’ve experienced is that each How do we get either two or three department has the policy that if you fall departments working together instead of just into one department then the services from one saying: This has happened so this cuts another department closes. So, for example, off and this funding has to kick in, but you if we’re providing support through DSP, don’t get this anymore? What’s a way their mental health issues kick in, they have around that? to be hospitalized, then the DSP is cut off, so we can no longer provide services for Rhea Vardy MacPhee: Is it a policy them. change? I don’t know if it – that’s where it comes down to, where each department has If they’re in the education system – and that policy that they can’t do that. Is it that there’s a gap with some of the services for a simple? I’m not the one to know because I lot of the higher functioning people like don’t know the background, unfortunately. Carolyn talked about from 15 to 18 when they graduate, there’s not been a lot of Mr. McGeoghegan: Maybe that’s suitable resources in the school system for something we can (Indistinct). them because of their high functioning needs, it’s more of the lower functioning Chair: That’s something we should – that have the services. So if they’re in that education between those years, we can’t Mr. McGeoghegan: One other thing is the provide services through DSP. It’s the United Way – school age funding for autism. They are in separate silos and the funding shuts off if Mr. LaVie: You have more – you move into another one instead of us working together. Mr. McGeoghegan: The United Way, do you guys get funding from them at all?

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Carolyn Bateman: We’ve tried. We didn’t An Hon. Member: (Indistinct). succeed. April Ennis: Yes, please. Chair: Make the application. Chair: I believe you’ve been sitting in the Carolyn Bateman: We came close on one gallery listening to us. grant but never got it. It depends on the year and what their focus is. One year we put a April Ennis: I have been here before. lot of work into a proposal and they score the proposals and we came out just that far Chair: You know the procedures. Just state below, so we never did get funding. who you are and you may begin your presentation as a parent with somebody who Chair: Okay. has autism.

Carolyn Bateman: (Indistinct). April Ennis: Okay. My name is April Ennis and I am a mom of two boys, eleven-year- Mr. McGeoghegan: Thank you. old Brandon who is with me here today and nine-year-old Benjamin who is in Vernon Chair: I want to thank the committee for all River School. We are from Kings County, their questions, and especially want to thank we live in the Vernon River area, and I’ve you, Rhea, and you, Carolyn, for coming come to speak to you today about two and presenting the Stars for Life important issues that I feel I would like to Foundation’s presentation to our committee. share. I obviously have more things that I Thanks once again. would like to share, but given the short time allowed I will follow up with a longer Carolyn Bateman: Thank you. document and send it along to the committee. Chair: We’re going to have a brief recess and then we’ll start with the parents from the Chair: We would appreciate that. Thank Autism Society. You can choose how you’re you. going to present to us, whether the four of you want to come to the table, or one at a April Ennis: I’d like to start with Brandon time, but you can do that while we’re would be in grade 6 this year, but I actually breaking. pulled him out of the school system from Vernon River. It was a really hard decision [Recess] to make. The school system was – well Vernon River School was very supportive in Chair: We’ll get reconvened here. We’ll all the needs that I addressed with them have to wait for the clerk, but anyway. concerning Brandon. Both my boys have a diagnosis of autism as from back in 2006, so We have reconvened, so I’ll ask the parents they were two and three when that took from the Autism Society to step to the table, place. What happened was Brandon was whether you’re coming as – I think April is pushed through and got a social pass too the first one? Oh, there she comes. April, are many times, and I didn’t feel that the school you coming first? system was the right place to meet Brandon’s needs. April Ennis: Yeah, we were just killing time waiting for you guys, so – If I look back to what happened to his grade 1 year, he was pulled out of the classroom Chair: Oh. more times than he was in and he was in a four-walled room a lot of the time by April Ennis: (Indistinct). Where am I himself because of his extreme behaviours. allowed to sit? You wouldn’t know that looking at the very well-behaved mature boy that I have today. Chair: You pick the chair. He’s a very bright boy and he’s quite capable of doing the school work that is An Hon. Member: Front and centre. required.

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Some of the challenges in the school system oversee the nurse? Chances are you are obviously resources. I’m not 100% on wouldn’t be very comfortable. Right now board for a full inclusion because some what the province does is they only provide children obviously need a little more support the funding for our one-on-one support in certain areas. Brandon’s challenges are in people and will not extend that funding to the core areas of math and language arts, allow us to hire specialists or consultants to and if you don’t have those foundational oversee that person. skills, then it’s going to be very hard when he graduates high school to be a productive So, yes, it’s wonderful that – and I’ve member of society. looked at the budget line. There’s almost three-quarters of a million dollars that is As a mom I took it upon myself because he spent on front line support grants to families wasn’t required to meet the outcomes of his for the pre-school and school age. It’s a grade level anyway, that I couldn’t do any huge amount. My question is: How can you worse than the school system and home- spend all that money and not provide as school him for one year. We’ve only been much as you can for these families? home-schooling for a month but there is a huge, very strong support system in the Yes, other provinces have more money. I’m home-schooling community. Everybody not asking for more money, I’m asking for home-schools for different reasons and more flexibility within those funding that’s wonderful, but next year I plan to pull guidelines. We are not able to use the my second son out as well. It was only funding for music therapy, materials have because I wanted to make sure that I was been stripped away, and if we don’t have strong enough to home-school two children access to other professionals outside of at the same time. My second son doesn’t Prince Edward Island – we don’t have require any supports in the school system. access to professionals on Prince Edward He’s like a little sponge, he loves learning, Island, but even so, we’re not allowed to use and I don’t have a lot of challenges with that funding to hire professionals away from Ben. PEI that could be beneficial to our children.

The second item I would like to address is Case in point, I put in a request for a tutor the autism funding guidelines that we have who was actually from British Columbia to access to for school age supports. We are work with my son and they were going to be allotted, as you know, $6,600 a year and doing video conferencing live on Skype or since I have two children, I’m allotted twice Google Hangouts. The person is still one- that amount, but in the last year, because of on-one with the child, but because the tutor all the restrictions, I didn’t even utilize half had an address that wasn’t on Prince Edward of that. As a family of one, really, one full- Island they denied my funding. But they time parent, it’s not because we don’t need were going to be doing the same thing as if the money to support my children’s needs, somebody on Prince Edward Island would it’s because of the various restrictions that be doing. are placed on the funding. Right now you can use the funding for a one-on-one tutor This is the 21st century. I work part-time within the home or the community and then teaching a child in another province through the other is a community support. If my son the same online video conferencing, and in needed an aide to attend a camp or a social this day and age it’s kind of silly how we program, it would pay for the individual to can be so restrictive on a little island and not go with my child, but not the actual fees be collaborative and open up to the associated, which I’m fine with, but my worldwide world. challenge lies with that autism is a medical condition and the fact that it’s not being Chair: Okay. treated as such is where the fault lies. April Ennis: I’m going to keep it at that. I If you were a patient and you needed have so much more I could share but I know surgery or you needed medical treatment time is limited. and you only had funding for a nurse, would you be comfortable for the nurse to provide Chair: We’ll open the floor for questions. surgery on you instead of having a doctor

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Robert Mitchell. of the $6,600. That is something that I would like to address. Mr. Mitchell: Thank you, April. But not all relationships are going to be I guess I probably share some of your employer – they’re not necessarily frustration in some of the things I’ve learned employer/employee because some tutors over the last number of years as an MLA. could actually have the experience and be When you look for flexibility from where able to be self-employed, right? Because if the funding comes from, what is the reason you hire a carpenter and a plumber and that you’re given that it can’t be flexible, they’re contracted, they have the expertise, first of all, number one, I guess? but all along we’ve been hiring staff that may or may not have been qualified, and in April Ennis: I think it’s a control issue, some cases glorified babysitters, with that because you can’t control what families funding and we haven’t had to cut the spend the money on, right? Because if they employer/employee – so I did fight for that do allow us to spend the money on things because there is a fine line there. outside of what they can provide, then they have absolutely no control. That’s my Mr. Mitchell: You see that as a positive, personal opinion. Another part of it is that a then, is that – lot of times when families do bring in professionals from outside of the province April Ennis: Depending on the situation, they are not welcomed with open arms as a but if families are required to do it to it to part of a team member in the best interest of access the funding then there’s a challenge, the child. Really, it’s not about going against because some families do not have the the system locally, it’s just that the resources training or the skills to be an employer. are not here for us and I don’t want to leave PEI. My family’s here. Mr. Mitchell: I guess that’s ongoing right now from what I understand. There’s Mr. Mitchell: I guess, in listening, I think (Indistinct) – most of the families are the same as yourself. They’re not saying the funding – April Ennis: Absolutely. They’ve just we need lots and lots of dollars more. I agree extended the period till April 2015. with that – Mr. Mitchell: I think that was a wise April Ennis: Yes. choice.

Mr. Mitchell: – that for the most part what April Ennis: Absolutely. I’m hearing is the funding’s good, but we’re not able to exactly use it the way Mr. Mitchell: From what I gather there. (Indistinct). Now I know there’s some Also, too, I know that some of that was the changes coming up with how anybody you discussion was CRA is requesting this and use for service, you’re now their employer, those types of things and that’s probably all and there’s changes coming out there how fair ball, I guess, but I have heard from other that – families in regards to the flexibility issues and who they’ve been able to utilize is April Ennis: Can I speak to that? probably not a fully qualified person, but is seeing progress in their child, so therefore, Mr. Mitchell: Absolutely, yeah. you know, maintain that –

April Ennis: I’ve actually been fighting this April Ennis: Absolutely, but if that person for quite – I won’t say fighting – advocating had supervision above them, how much this for quite some time because when I was more could – in the pre-school system, the funding actually was in the Disability Support Mr. Mitchell: Excel, yeah. Program. During that time we were still allowed to get the $6,600, but the MERX April Ennis: – how much more positive were paid on top of that. Now that it’s in the benefits could they see, right? There’s no education system the MERX will come out measurement to that three-quarters of a

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million dollars that is going out. How do autism. That was one of the you justify – recommendations that we actually made that night was this change doesn’t kick in until Mr. Mitchell: I guess at the end of the day the start of the new fiscal year, so why are I’m on your side – you putting so much pressure on the families and the parents to get set up by November April Ennis: Yes. 1st when we don’t even have all the answers yet? I mean, literally the people that were Mr. Mitchell: – in that regard and will there from the department of education continue to advocate in any way I can, but I couldn’t answer the simplest questions that know it’s a process. night and they were continually just referring to CRA versus doing this together April Ennis: It is, and my son will be of – breaking the silos down, as we always talk legal adult age in eight years, so I’ve only about – and making sure that somebody got eight years to – from CRA was there, and making the transition as seamless for the parents and the Mr. Mitchell: One other thing – can I ask families as possible. one more question? I’m curious. I hear over and over again that Chair: Please. music therapy is not covered under the $6,600 funding. Mr. Mitchell: In regard to the home-school, you mentioned it’s a strong support from April Ennis: It’s not. those – Mr. Aylward: Is there a reason why? April Ennis: It is, yes. Because I hear from so many parents that it is so beneficial. Mr. Mitchell: Are there many children affected by autism that are being home- April Ennis: If you look at the latest schooled today on Prince Edward Island? document that came out, they list – actually Because I don’t know that number. I found it really interesting because they talk about evidence based therapy – April Ennis: I wouldn’t say that there’s a large group, but there is a segment of them, Mr. Aylward: Right. whether it’s autism or another learning disability. April Ennis: – and they will fund evidence based interventions. Then they show a list of Mr. Mitchell: So when you say support, do things that are covered and then they show a you mean like people come to your house list of things that are not covered, and music and help you – therapy is not in either list. It’s been brought up in sessions from back in 2011 that music April Ennis: No, I mean other parents that – therapy is needed and it has been covered in it’s just a strong community that they help the past in certain occasions under the each other, yeah. Disability Support Program, not when it was in the funding transferred over into the Chair: James Aylward. department of education.

Mr. Aylward: Thank you, Chair. Mr. Aylward: Okay. Chair, I just have one last – April, thanks very much for your presentation. I was very pleased to hear you Chair: Okay. say that the date that was originally set up for November 1st to become registered as a Mr. Aylward: April, you mentioned earlier small business has been extended to April 1st on in your presentation about materials have because I, along with Robert Mitchell, we been continually stripped or eroded away. both attended the information session back What type of materials are you talking several weeks ago that the department of about? education did for parents with children with

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April Ennis: It could be anything. It could as long as you fell into that support you be, say, an iPad that would help a child were going to get funding. I’m just curious communicate better, like, because it’s what your thoughts are. technology. Again, we’re in the 21st century. The technology has evolved so you don’t April Ennis: My thoughts are that it’s the have to buy the standalone programs and individuals who are making the policies that technology that that’s the only thing it does. are making the restrictions. It’s not based on You can get that in an iPad now, an iPad or any evidence. an iPod or whatever. Even simple things like that, materials such as curriculum, things Ms. Crane: Evidence based. Is it internal to that people – manipulables, like even one department or, like, in the beginning building blocks, do you know?, something (Indistinct) started – that would help a child learn whatever they were working on. April Ennis: Right now it’s internal to the department of education. Mr. Aylward: Something as simplistic as – Ms. Crane: (Indistinct). April Ennis: As paper. Chair: Three more. Mr. Aylward: – and I don’t mean to say it’s simplistic, but it’s – Ms. Crane: And you’re going to address more of that in your written report? April Ennis: As paper. April Ennis: Absolutely. Mr. Aylward: Well, paper, or building blocks. So that’s no longer – Ms. Crane: Okay, thank you.

April Ennis: No. Chair: Thank you very much, April.

Mr. Aylward: – allowable under this grant. April Ennis: Thank you.

April Ennis: No. Chair: We’ll have the next parent or parents. We have Andy Arsenault and Mr. Aylward: Wow. Maude Desjardins.

April Ennis: And we – I won’t bring – I’ll Maude Desjardins: Yes. add that to my document (Indistinct). Chair: Okay, welcome. Chair: Olive Crane. Andy Arsenault: Thanks for having us. Ms. Crane: Thanks, April. Maude Desjardins: Thank you so much for You covered a lot of ground in a short time. this opportunity. When (Indistinct) from the When you started, you mentioned about Autism Society sent an email out I replied wanting your son to have core competencies right back and I said: Oh my God, I can’t that any other child should have by the time believe this. I was so beyond myself. It’s a they leave grade 1, grade 2, grade 3 or great opportunity and we really appreciate it. whatever. You also talked about the technology and the funding guidelines that We have two children. Brianna is 16, are actually causing more problems than Gabriel is 18. Gabriel is our son on the probably helping. spectrum. Because he’s 18 I wanted to provide you with a little bit of context I’m curious, from your perspective, is it because we’ve been struggling from a long policy? Is it regulations? Is it someone’s time ago. I’ll try to be fast. I’ll try to read decision on this? Or does it go back to the my notes as fast as I can – original philosophy on how you help people with autism in the province? At one time it An Hon. Member: Take your time. seemed like we just had one philosophy, that

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Maude Desjardins: I have about 10 retrospect this was a godsend. Who else minutes, so if you will bear with me and knew him better than his sister, right? So then we’ll be happy to answer your although the school was on top of things for questions. teaching values and respect, Gabe was bullied in the school yard at recess and in Gabriel was born without incident. He was a the gym, which we did not know was textbook baby. He was content, he was happening. easygoing, a real little social butterfly when he was young, and then besides being In 2008, now Gabe is 12 years old and he’s sensitive to loud noises growing up – which in junior high. We’re still trying to figure kid isn’t, right? – and some separation out what’s plaguing our son’s learning, but anxiety, when he was in daycare we started by then we’ve gone to three pediatricians noticing some fine motor skill delays and and then some who were all convinced that eye-hand coordination problems. Later, he had ADHD. After too many some quirky little things started to get our misdiagnoses, failed medication attempts – attention and led us to believe that he had and I knew in my mom’s heart that my son Tourette syndrome, which was confirmed by did not have ADHD – I cut the ties with the an expert in the field. doctors and we dropped the medication. Gabe and I were still seeing a pediatrician In 2002 he started grade 1 in a French-only back then just to keep him on the grid. He school. He was the only French first- had a specialty in Tourette’s. We would sit language kid in a three-student classroom. in his office, listen to him, take the The school was just opening that year so prescription and walk away throwing it in there were three kids in the classroom, he the trash can on the way out. was the only French first-language, so we thought he would just breeze right through, Gabe was getting increasingly antagonized right? Lots of one-on-one time allowed his by him to the point that he didn’t want to go teacher to notice a difference in the way he anymore. We were baffled and Gabriel was processes information. That’s what she said: getting increasingly frustrated, discouraged He seems to have something in the way that and totally lacking self-esteem because of he processes information. the constant struggles and social interaction failures he was experiencing. We didn’t Then he was starting this long journey to have a clue then what was going on with his struggle to learn within the system, which at peer-to-peer dealings because we didn’t the time was really (Indistinct) ready for know what he had, right? him, and neither were we. At the end of his first school year we had to make a difficult Thanks to a special education specialist at decision to keep him in grade 1 the next year the École François-Buote we got referred to as he hadn’t progressed sufficiently to a neuropsychology clinic in Montreal in master the basics that would help him 2008. We were hesitant due to the high cost continue to second grade. Then our journey and the expenses, but she managed to supporting him in his struggles was starting. convince us she was confident that they could help him there. So we went, and after From 2002 onwards Gabriel has been a series of tests done at the clinic we finally, assessed countless times in every field in 2008, got the diagnosis: non-verbal possible: occupational therapy, speech learning disorder. That was the first language therapy, audiology, psychology, diagnosis that he’s gotten. behaviour, psychometry and so on here on the Island. We even went off-Island also. On the plane back to the Island I’m reading He’s having a hard time at school and the handouts that I’m given on NLD and I homework was a constant battle. He felt like I had 500 pounds off each shoulder managed to pull through elementary, and because finally we had something that could thanks to multilevel classrooms – I think explain Gabriel’s developmental problems. you are familiar with that – his little sister Realizing all the times that we’ve been came around to become his in-class support, inpatient or misjudging, that all was a result which was great. She was a quick learner, of our lack of understanding of who he was, she could work with him on things that he I felt terrible and then the tears were rolling was having difficulties with, and in down my face as I sat there on the plane

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reading those handouts. But that was a start us away towards other sources, mainly the of a good thing. At least we knew where he in-school autism support program, which stood. April addressed. It lacks flexibility, we know that. I’ll give you our specific NLD is not considered part of ASD, rather, example. There are gaps, it’s a gap that I it’s the other way around. Interestingly, wanted to share with you. Our experience NLD is defined within the field of new with the DSP is far from being stellar. psychology and is diagnosed based on a battery of tests that they administer to an Through the years until recently we’ve been individual. It’s not diagnosed based on the struggling to find a support person/personal subject of interpretation of observed social skills coach respite/additional tutor. behaviours, as it is in ASD. Asperger’s Because Gabriel is so high functioning and syndrome, and ASD, they’re diagnosed because we are parents and we all want the within the field of psychiatry and are best for our kids, we’ve been extremely defined in the DSM-V. I’m sure you’re all picky and we couldn’t find what we needed, familiar with the DSM. right? Outside of the school we’ve mostly provided all of the support ourselves for lack On that note, an eminent specialist, Dr. of being able to secure funding, find a match (Indistinct), he cites that several or someone we could afford to hire. neurological disorders and diseases result in NLD and classifies them as to how closely Finally this in April we knocked at the Stars each of them share the NLD profile. AS, for for Life Foundation’s door who found us a instance, Asperger’s syndrome, is perfect match. When it came time to put a considered a level one NLD, meaning that request to the in-school autism support fund virtually all of the NLD assets and deficits we hit a wall. Because of their guidelines are present, so it’s kind of the other way they were (Indistinct) and they kept telling around. As a result, though we knew why me that they could not fund an organization. Gabe was who he was, having a diagnosis of I kept fighting back, pushing back all the learning disorder didn’t open any more time, and I told them now that we had a doors for support for him other than the match made in heaven I was not going to awesome support we were already getting at back down. I picked up the phone this time the school. to call the program director. After a long conversation she said they were going to Since his brain was still plastic and Gabriel look into our situation. Finally they agreed was still developing as a child, what we did that the services I was going to get from in 2011 was we brought him back to the them were the same as if I were paying the clinic because it can move, right? We did worker directly, only they had to pay to do that for retest and this time we knew more the transaction to the SFL like they do for about what was going on so I was able to the DSP for instance, right? ask more, better outcomes or more, you know – them to be a little bit more precise in By the time the paperwork and the red tape their testing. He was 14 and a half then. This were done it was June this year. You time a clinician did a series of behavioural probably know the autism support program observations in the course of one week. only serves kids aged up to 18. Gabriel Comes the diagnosis: Gabe has Asperger’s turned 18 in August. We had support for less syndrome. He’s a very high functioning than two months. Technically speaking, person, and as you are aware of what according to the Stars for Life Foundation’s Asperger’s is on the spectrum, he’s at the by-laws, they only serve adults, but since threshold. Gabe was already in his transition for post- secondary and given his history, their Being high functioning brings a whole set of executive director had decided to make an additional challenges for a kid, particularly exception in his case because we went to when he’s in his teens. In 2010 we attended them early in the year, right?, and he was a Whole Life Expo and then we saw what not 18 yet. But the board and rightly so, was out there in the province for support. fearing losing their funding, they put a stop That’s when we had our first contact with to it. Who can blame them, right? That’s the DSP. Four years later we haven’t gone what happened. anywhere with the DSP. They kept pushing

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Now Gabriel’s in grade 12. He’s 18. We feel As you are aware, we do have some need he’s fallen into the cracks of the system there. Gabriel was so ill that we had to bring because he can no longer get support from him to outpatient clinics where they would the autism support program given his age, medicate him and we had to go numerous but he’s still in the school system. As per the times to just figure out the best course of Stars for Life Foundation by-laws, which pharmacotherapy. Meanwhile I demanded I’ve been fighting to get my hands on – they that he be put on an urgent waiting list for a should be readily accessible on the web psychiatrist and he finally saw one in July, which they’re not – he’s no longer able to and since then he’s been stabilized thanks to access support from his personal worker the help of this psychiatrist which we are because he’s still in the school system. You seeing this afternoon again. see where he is, right? He’s right in the crack, and I’m sure there’s more than just To compensate for lack of resources in the him that are like this. health care system, we brought Gabriel to countless alternative health professionals at Now he’s in a critical time of his life. He’s our expense: psychologists, naturopaths, having to decide what career choice he has acupuncturists, chiropractor, massage to secure for his future. He is without the therapists. You name it, we have been person that has helped him make the most everywhere in and off-Island. Gabriel even progress in years, the few little weeks that wanted to see a hypnotist because he had he’s been working with a support person. OCD and it was very violent, intrusive They and we connected with him on first thoughts that would prevent him from contact. It was incredible. I couldn’t sleep functioning, it was that bad. that night when we met, it was just a match made in heaven. In the short time they’ve Gabriel is physically fit, but mentally he has been working together Gabe and his worker, a very long way to go. He’s a wonderful, they have developed a strong bond, and kind, caring, charming young man. He anyone who has a child on the spectrum works really hard. He has jobs. He goes to knows how hard it is to navigate through school. He is in his third job since he was change, yet Gabriel is just facing this again. 15. He needs a lot more help socially. He’s He’s without his worker. constantly on edge, and who can blame him, right? Just the mere fact of getting up and We’re disconcerted that he has lost his getting through his day each day of his life support and now we worry that he won’t be is a battle in itself. able to access this person again. As you heard, there are people on the list for the Also as parents we’re tired, but we’re still Stars for Life Foundation. fighting for him and we’ll never give up on him, never, ever. I’d love to see a stop to his In the last couple of months he’s been on his plight firstly by seeing all those gaps that we own, Gabe started to get more and more encountered in our situation addressed, and confused from his social interactions and of course by seeing more resources for ASD increasingly frustrated and angry as a result. and older kids on the spectrum in this His peer interactions are failing at this time. province. Also Asperger’s syndrome, it doesn’t usually manifest itself alone, and it often As you’ve seen the stats from the Stars for comes with a number of what we call Life Foundation, research now shows that comorbidities, the most prevalent ones being approximately one out every 68 new anxiety, depression, obsessive compulsive children born will develop some form of disorders and so on. Gabe has been plagued autism and that new cases are diagnosed at a with all of these conditions. The worst of it rate of one every 20 minutes. Research also manifested early December and we just got shows that effective early diagnosis, early him to stabilize this August. Needless to say, intervention and appropriate treatment and those nine months were the worst of our support services can have a significant lives. I would never want to see any parent positive impact. We know that and now we go through what we have gone through. have that in place, but we didn’t have this luxury with Gabriel. Lack of mental health support in the school and community system didn’t help either.

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First off, we all know we need more mental bumped into this. This, I don’t know, it’s a health specialists. Also the pediatrician, I person in some kind of an entryway and then think, should be trained to some extent on he has: selfish, monster, feel crazy, angry, ASD. The pediatricians that Gabriel dealt useless, anxious, depressed, worthless, tired, with, they didn’t have knowledge, they pathetic, alone, broken, weak, feel fake. didn’t know. That’s why he always kept Then there’s a kid crying and says: Just coming back with ADHD. My son doesn’t leave me alone. Do I deserve this? Why? have ADHD. You idiot, you’re hurting others. I don’t know what’s happening. Stop being so damn A few years ago I was asked by the minister selfish. of health to sit on the PEI Reproductive Care Program as a consumer rep. I filled two two- Just by accident I went to this and I just lost year mandates. I sat at a table with health it. I just lost it. That’s my 18-year-old son care professionals and provided my input expressing himself as to how he’s feeling from a consumer’s perspective. That was right now. quite an interesting and productive experience. This was a good practice. I’m Thank you very much. not sure if it’s still happening. This should be replicated in the field of mental health, Chair: Thank you very much, Maude and child services and so on. This is so great. A Andy, for sharing. Did you want to take person gets nominated by the minister and questions from the committee? sits as a consumer rep, and then provides this perspective from the consumer’s side of Mr. McGeoghegan: She didn’t hear you, things. Mr. Chair.

PEI’s a small province. I think we should be Chair: You’ll take some questions? able to implement changes with a bit more ease. I think that there are a number of Maude Desjardins: We will, yeah. examples where we did successfully do that: kindergarten, tracking bracelets, for Chair: Okay. instance. Those are just a couple of examples. I think that if we don’t have a Maude Desjardins: We will. framework in place to see into the school and the social success for those individuals Chair: Olive Crane. like our son, who is able to function independently to some extent, then we’re Ms. Crane: Not so much a question as a missing out on an important economical and comment. Thank you for coming in and social aspect of our future. helping us get a better understanding of what the gaps are really like. Making sure our people are succeeding is important as people are our number one In terms of your son’s picture, I don’t know asset in this province. There’s strength in if the clerk could have a copy of that being small. We could become an example because – for the rest of the country, and that’s been said before. Maude Desjardins: Yes, of course.

In conclusion, we’ve given so much of our Ms. Crane: Again, when you look at the time and money to support him. We’re not numbers – and I don’t know, 20 years ago it bankrupt, but I can tell you we’re exhausted was like one in 1,500 kids, right? Or one in and we have no life savings. We hope that 10,000 it started at, one in 1,500. I really sharing this story was going to be helpful to believe part of our big issue in all these the committee. Thank you very much. different departments is how many of us were trained when circumstances were so In closing, I would just like to read to you – different and the reality of what’s it like. Gabriel has taken back to drawing because he thinks he would like to do a program at You said you weren’t bankrupt but close to Holland College in design. I was going it, and the exhaustion and he’s just 18. through his drawings just last week and I Could you make a comment of what your

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hopes or thoughts or dreams are for Gabe? the way to the Olympics and she’s well on He wants to go on and have employment, if her way. She’s whole heartedly a he’s looking at Holland College, but what functioning person, but we – about his living situation? Will he still be at home? Are you trying to get him into an Andy Arsenault: She’s very strong apartment? What are the hopes and dreams mentally. for his living? Maude Desjardins: She’s very strong, but Maude Desjardins: There are days that I’m we know that, of course, it does impact all extremely optimistic and there are days that of us, yeah. I’m not so optimistic. Right now, for myself, I’m just thinking I was home until I was 20- Mr. Aylward: Watch her, yeah. whatever, maybe 20 years old, and I’m just thinking: You know what? I don’t mind Thank you again. keeping him home until he’s done schooling, at least, and if he needs a few Maude Desjardins: Thank you. more years just for adapting. We’ll always be there but I don’t – socially speaking, he’s Chair: Kathleen Casey. not mature, that’s pretty obvious, and he is so not ready to go living on his own. That is Ms. Casey: Great. Maude, thank you for definitely a fact, yes. your presentation.

Andy Arsenault: I guess it all depends on You’re the second presenter that we’ve how much help we get between now and heard today to talk about the lack of then. Depends on when he’ll get out on his flexibility in the DSP funding. I think that own (Indistinct). our committee has heard that loud and clear so we’ll make sure that we discuss that as Maude Desjardins: Yeah. we make our recommendations.

Andy Arsenault: So – I’m a mother as well, so you always want the best – Chair: James Aylward. Maude Desjardins: Yes. Mr. Aylward: Thank you, Chair. Ms. Casey: – for your kids. So I enjoyed Again, thank you very much for coming in your presentation. Thank you. and sharing your experience with us today. My question isn’t so much about Gabe, but I Maude Desjardins: Thank you. mean it’s about your entire family unit. But, I’m curious as to how your younger Chair: I want to thank you for coming and daughter is coping and where she is right putting a face to autism here. now. What kind of space? Is she well? Maude Desjardins: Thank you for the Maude Desjardins: Thank you for asking invitation. this question because she is a part of this family cell and she is the big-little sister. Andy Arsenault: Thanks. She is so mature, independent, understanding. She’s his number one Chair: We’ll invite Krista McGillivray to support system out there in the school. She the table. stood up for him. She’s been supporting him, and of course we realize it’s taking a Thank you, Krista, for coming. A couple of toll on her, although she’s not showing it, our committee members have other but definitely, you know? Because it has a commitments so have left the table, but that toll. It’s taking a toll on us, so we know it is of no indication because you have joined does. The pressure is on her too. You know us. It’s just that they have other things. So what I mean? But she’s a successful student, I’ll turn it over to you. she’s in the top of her class, she’s a successful athlete, and she wants to go all Krista McGillivray: Thank you.

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Thank you for your time. My name is Krista Thank you. McGillivray. My eight-year-old son is severely affected with autism. He is in grade Chair: I want to thank you for that very 2. brief presentation –

Today I would like to talk about two issues. Krista McGillivray: It was – First, occupational therapy provided for school-aged children, and the second, home Chair: – but – and school collaboration. Krista McGillivray: – given the time I – A pilot project which began in 2009 allowed children over six to have occupational Chair: – very powerful, and you’ve left us therapy service in school. This program with three very good questions. ended in 2013. A recent announcement has provided one OT in the school system. This You will entertain questions from the position has never existed and is a welcome committee if they have any? step in the right direction. Currently one preschool OT provider has 144 on her Krista McGillivray: Certainly, yeah. caseload with 40 new referrals, a total of 184. More is needed. Mr. Aylward: Chair?

The next topic I would like to talk about is Chair: James Aylward. home and school collaboration. To quote a resource guide titled Effective Educational Mr. Aylward: Krista, yes, like everyone’s Practices for Students with ASD: Parents are said around the table, thank you very much. advocates for their child’s best interests. It is You’re very direct and to the point, and the essential that they have opportunities to be three questions that you left us with are involved as partners in the ongoing planning already beginning to resonate with me and and review of educational programs for I’m just (Indistinct) it through. students with ASD. A strong partnership between school and families is the What would you say is the biggest challenge foundation for a student’s ongoing, currently for you as a parent trying to access successful experience at school. Ideally resources and support for your child? home and school partnership invites meaningful input from parents and involved Krista MacGillivray: Of course, home and professionals. school collaboration is the top issue at the moment, and in the past. Julian’s school has In my experience, the lack of collaboration been difficult from the beginning. between home, including involved professionals, and school has resulted in an One major concern kind of relates to what extremely difficult first few years of my April and Maude talked about with regards son’s education. to the $6,600 funding. I have accessed a private professional, an autism consultant in To conclude, I ask these questions: When SLP, who provides us direction for our my child is unable to be included home program. This is necessary. Julian’s successfully in school due to aggressive non-verbal. He has extreme behaviours. For behaviour and lack of communication, who us to do this on our own wouldn’t be in government should I hold responsible for beneficial to Julian. One concern I have is not allowing me to get him the help he when we’re trying to collaborate between desperately needs? Second question: When a home and school, the policies, if you will, in parent at school complains to me that my place that outlaw this outside expert to child has bitten him or her, who should I say coming in and having meaningful input into is responsible for me not being able to his programming at school are really prevent this? Finally: What is more challenging, to say the least. important, government’s desire to prevent supposed overlapping service by third Also, an occupational therapist in the school parties or the needs of my child? system for Julian specifically is required. He’s been referred to occupational therapy

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on the Island and there are no resources that input from the professional. It would service are going to reflect that in the school system, them, it would service the school, it would so like the private speech language service the EAs, it would service everyone pathologist and autism consultant which I involved, not just Julian. We’re talking pay for, if I want to access help for Julian in about a situation last year where behaviours that form, which he needs, that’s something got to the extreme, Julian was asked to leave that will be coming from my pocket as well. school. They worked what they call an It would take a great deal of time for me to initial line of inquiry and that’s when they specify all of the challenges, but right now all get together and we discuss things of in school I need that to happen. I need that what went wrong. He was then taken back meaningful input. into school, and unfortunately the solution was for Julian to spend six hours of his day I’ve had several meetings with student in a small room with his EAs. services, the director, the manager, to try to work together in a partnership to come up So my opinion, when you have a successful with solutions that are going to improve program at home, I would be hopeful that Julian’s situation at school. We’re at a point policies and decision makers can look at this where physically I’m almost unable to get situation and say well let’s build this him into school, and still I’m unable to partnership, let’s find ways to build this access the expert professional that comes partnership, which whatever form, whether into our home and provides home service, it – workshops, videos that we – we actually home intervention – which is very do videos to provide the school. successful, by the way. We have five therapists that work with Julian and they When I go into the meetings – for instance, range from someone getting their master’s in we potty trained Julian in the home special education, we have teachers, we programming one summer we had great have people who just graduated the human success so we videotaped it and we took it to services program at Holland College. These the school, and we said: This is what this are qualified people. They have input from looks like. Because video learning is, you the professional and it’s going well. know, it’s key. Most people are visual learners, so we did that. But so many times Our hope is to have the permission ability to I’ve requested that home intervention has actually work in a partnership form and had some involvement, if you will, on a communicate what we’re doing at home and consultation format just to impart try to have the curriculum at home be the information sharing and just give examples, same, have it merged together so we’re not video, of what we’re doing so we can merge dealing with Julian having – I can’t even these two. Because the situation at school is express how difficult it is for him right now. quickly unraveling, and at every point I’ve You would have to see video. attended since June, when Julian was dismissed from school – he was allowed Mr. Aylward: Thank you. back and then I took him out early because it was not – his wellbeing was at risk. Chair: Robert Mitchell. So, he finished school earlier. From that Mr. Mitchell: Thank you, Krista. point up until – well, I haven’t stopped, I’ve had meetings and meetings asking – trying Julian’s day at school Krista, does he have a to work with, to provide solutions – all have TA full-time all day long? been denied so far or I haven’t heard back so far. Meanwhile, just taking Julian to school Krista MacGillivray: He has two. today there was – I can’t even count the aggressive attacks that took place from the Mr. Mitchell: Two? The response from the van to the door. We have the ability to help TAs, from this expert, is positive and they this if we can communicate it to the school. incorporate it in Julian’s day, is that what We haven’t had that ability with policies. you said? It’s just really difficult.

Krista MacGillivray: I haven’t had the Mr. Aylward: Chair? ability to have them get any direction or

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Chair: Yes. Mr. Mitchell: At this point officially we have one person looking to present Mr. Aylward: Krista, not that overall it has (Indistinct) – a relevance on it, but I’m curious as to what school Julian is enrolled at. Committee Clerk: So the request that came in – oh, sorry, I’ll let you take – Krista MacGillivray: He’s currently at Spring Park. Chair: Yes, we have a request from UPEI so we’re trying to accommodate their Mr. Aylward: Okay, thank you. coming in. We had looked at the 21st, was it, and we – Krista MacGillivray: He has an older sister who’s there as well. Committee Clerk: The 21st doesn’t work -

Mr. Aylward: What’s the age spread? Chair: It doesn’t work –

Krista MacGillivray: Two years. Julian is Committee Clerk: – for (Indistinct) 10. committee members.

Chair: Krista, thank you very much. You’ve Chair: We’re trying to find another date for – UPEI, but then to add on to that we have –

Krista MacGillivray: Thank you. Ms. Casey: Is that the education program at UPEI? Chair: – (Indistinct) lots to think about. Chair: No, it’s the student union. Do we want to just continue on? Mr. Mitchell: Student union. Committee Clerk: We can. Ms. Casey: Oh right, that’s totally different. Chair: Okay. Next item on our agenda is a request to present from a parent. I think we Chair: Yes, the student union, and we have were trying to find a date when we could the parent, and now we have some others meet again in the month of October. from the Autism Society, parents.

Committee Clerk: Yes. I circulated to the Mr. Mitchell: I think we should find a date committee a request to present on the state and run it like today (Indistinct). of education. A parent had approached me at the last meeting for education, and so up for Chair: Is the 23rd of – discussion for the committee. Committee Clerk: October. Chair: Also, in talking with the Autism Society, there are a number of parents who Chair: – October in the afternoon – would like to see if there’s another opportunity to come in and present to us or Ms. Casey: Is that a Tuesday? if we would accept written – and I’m looking for some direction, if whether or not Chair: That’s a Thursday. – I would think the written is something that we can certainly entertain. Is that the wish of Mr. Aylward: That’s a Thursday, it’s the the committee? same day that Biz 2 Biz opens, just FYI.

An Hon. Member: Sure, absolutely. Ms. Casey: It’s the same day as what?

Ms. Crane: Absolutely. Mr. Aylward: Biz 2 Biz opens. Biz 2 Biz Expo. Chair: And can we – Ms. Casey: Yeah, that’s fine with me. I’m good for that day.

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Chair: Fine with me, the afternoon.

Committee Clerk: Is the afternoon (Indistinct)?

Chair: Okay, we’ll send that out. So it’s Thursday, October 23rd and we’ll – 1:30, okay?

Is there any further business?

Mr. Mitchell: (Indistinct).

Chair: In the morning. Okay?

Committee Clerk: So 1:30, October 23rd?

Chair: Any further business?

Entertain a motion?

Ms. Casey: So moved.

Chair: So moved?

Committee, thank you, everybody, for your attention.

The Committee adjourned

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