Friday, January 7, 2011

It's Always Hard: How I Spent My Day

 Letters out:
Dear Ms. R**,

I have a twelve year old daughter who is disabled. She had a stroke before birth, has poorly controlled epilepsy, emotional problems, physical problems, hearing and sight problems, and ADD. She has a very unique and complex profile.

For two years, I have been asking her school (and, by extension, the *SB) to provide me with recommendations for high school programs. My daughter cannot go to a regular program, she will be hard to place. I want to be able to go around with her to see the programs and make the best match possible. For two years the school administrators have, I have come to realise, "handled" me, for lack of a better term. They have agreed to do this while stalling and stalling.

Now I've been told that there is a program at B** Secondary they are trying to put her in. It is the only one they've mentioned, but I am not allowed to go see it, or know anything about it. I've been told the offer will be made in March, and then I can see it and ask questions. But if I don't feel it's right, I will have no other options in March, as this will leave me no time to see or apply to other programs. My daughter is routinely turned down from programs, including *SB programs. The B** program might very well be a great match for her, but unless I can see it, and take her down to show her and meet people, how do I know? I am the expert on her and what her needs are. The program may not be a fit for very good reasons that have nothing to do with the quality of the program.

I have learned through a therapist at Mental Health and the teacher at the Hospital who works on placements that I am not alone in encountering this issue. Apparently, the *SB has an unspoken policy to prevent "parental shopping" of disability programs. My issues regarding this are multi-fold:

1. It goes against the School Act, which states a parent's right to:
     "7 (2) A parent of a student of school age attending a school may, and at the request of a
teacher or principal, vice principal or director of instruction must, consult with the teacher,
principal, vice principal, or director of instruction with respect to the student’s educational

2. It goes against the stated promise to encourage a parent to collaborate with all involved stated here: (website given) 10 section B.4 (Parents)
and the promised environment of co-operation regarding planning promised on page 22, where it talks about the school based team.

3. If she were a "regular" child with a special interest, or a gifted child, I would only need to go here: (website given) to see all the programs on offer by the *SB and how to register for them.

My daughter is very ill right now. Her seizures for the last year have been really out of control, and now she will be assessed for brain surgery. I have precious little time and energy to challenge the school board, but I will. Not just for my daughter, either. This is a problem faced by many parents of disabled children, and it needs to change. We have as much right to make informed choice about our child's education as anyone else. When a disabled child is preparing to transition between elementary school and high school, there needs to be a team meeting, with all concerned parties to discuss options and to make sure everyone knows their rights and responsibilities. Parents need to be fully consulted with regarding their children's future educational path.

I have talked to the Vice Principal, and was turned down for a meeting with the person who is supposedly lobbying for my child (I've never met her) and the Principal. I am willing to seek whatever manner of remedy, inside or outside of the *SB realm, that I need to get my daughter's needs met. I do not want to, I simply want equal treatment and to have a non-adversarial relationship with the *SB.

Some direction would be great. I don't just want this changed for my daughter. It needs to change for everyone.

Thank you,
B's Mom
 Letters out: Request to know who I'd been dealing with from an advocate:

Well, last year and the year before the principal was Mr. (Principal) (I will check Monday for his full name).  I tried repeatedly to get invited to a School Team meeting, and was finally invited to one at the end of 2009, but it was cancelled at the last minute and I couldn't make the rescheduled meeting because I was in University. I was not invited to another one, even though I have talked about it regularly since my daughter started there in grade five.

This year we had a change and have a VP at the School (M** Elementary) with a principal who works at B** Elementary. High School placement was one of the first topics I brought up at with Ms. VP, and we had more than one discussion about it. I was very clear that I wanted to know my options and be able to see the programs. B's (my daughter) previous counsellor at Mental Health had recommended H** House, but Ms. VP said it was a horrible place. Why, I am not sure. I was disheartened, because it was the only suggestion I'd gotten. It doesn't matter now, they've turned her down. Everyone turns her down. That's why I am so very worried.

Ms. VP assured me this last fall that she would find recommendations and we would go together and see them, but the recommendations were not forthcoming. I talked to B's classroom assistant, and she in turn talked to  the social worker at the school. He promised to help, but every time I tried to talk to him he'd say that we'd talk later. And then his book was missing. And then he had to get it back. This went on for weeks.

Just before Christmas, Ms. VP told me about the program at B**, but she had very little information. A couple of days later I wrote and asked to see the program, and you can see the response below. I was very upset and talked to B's Therapist. I was also recently interviewed for the At Home Program, and I talked to the women who interviewed us, and she put me in contact with the teacher at the Hospital, where my daughter has had many assessments done. Both B's Therapist and the Hospital people were dismayed, but not surprised. Apparently, it happens a lot.

I feel that Ms. VP was honest at the beginning of the year about helping me, but that perhaps she found herself up against the same wall. Perhaps I am mistaken, but the whole thing feels like people trying to get out of between a rock and a hard place, and not being able to tell me about the cause of their 180 degree turns.

This year was very hard. My daughter is very sick, I became PAC chair, and we had to hit the ground running to fight the school closures. I am in the school everyday, talking to her teachers and workers. I attend every IEP meeting. The services from the school board have been virtually non existent. They have cut back the workers in her class to 1.5 for 8 kids. My daughter alone has two designations and is supposed to get full time help, but she's only going part time so I think they're using that as a justification to cut services. She is supposed to see speech and occupational therapists, but has not seen a speech therapist in eight years and only this year finally saw an occupational therapist. I am fairly inundated with specialists and doctors for her, so sometimes I am busy working on certain areas and other areas lapse. But I am tired of having to always fight for services, to always have a million miles of extra red tape, and I can only imagine how hard it must be for others with language problems or who simply don't know how to navigate the system. 

It makes me angry to think of other parents having to go through this. Our school is small, and has a student body that is 64% First Nations, 26% designated Special Needs, and has a high percentage of ESL students. I want to see a better procedure when I leave, because these students already experience enough challenges. Their parents need more ways to be involved, not less.

 I have also shared this information with J** B**, who is on the board of trustees, with the hope that that also will help affect change.

Thank you for your time, I will email you again next week.


Letters in: To me from the person who runs the special needs education programming at the school board.

This does not sound right at all – let’s meet to review the details. I am available on Wednesday morning at 9:30 am if you are able to make it – otherwise, I’ll send you additional dates. For now – what is your daughter’s name and the school she currently attends? Have you had any connection with a case manager?
Many thanks & see you soon.
Ms. R**.


So, in the end, with help and support of some great people that I don't know, I FINALLY got some movement. I am curious to see how the VP will be Monday. I hope she understands that it was not personal. And I hope she understands it was very personal. 

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