Freedom of Information?

For the last little while, we have been trying to access a government program which would pay for C’s equipment and walker. We have been wait listed for a few months to be assessed, far beyond what I was told is their usual time. I’ve written letters and called people, but I also thought I’d do a Freedom of Information request to find out how long wait lists are. This wait period is a problem not just for C, but for many kids in the province.

I would add that everyone at the Ministry we’ve dealt with, when we’ve actually been able to talk, has been very sympathetic and very understanding of the urgency. The problem is not that they don’t want to help, but so far as I can tell, that the resources allocated to assessing kids is just way too low.

So anyway, to get some information about waitlists so I could write my MLA with all the facts, I filed this Freedom of Information request. And got stonewalled. What’s funny is that I used to do FOI requests as a lawyer, on letterhead, and believe me the responses were not like this. But I wrote this in a layperson’s voice. Anyway, I thought some law geeks or FOI nerds might enjoy reading this ridiculous exchange. It’s probably only funny if you know a bit about Freedom of Information law, but I think most Canadians know that under the law we have a right of access to public records, with some rather limited exclusions. The way this has been dealt with is amusing, but also a little scary. Named and identifying details redacted.


From: FOI Form Handler [mailto:xxxx@gov.bc.ca] 

Sent: Monday, September 8, 2014
To: FOI Requests MTIC:EX
Subject: FOI Request – General Records

FOI Request Submitted on Monday, September 8, 2014 at 21:06:48

DESCRIPTION OF RECORDS REQUESTED
Preferred Method: Email
Request:

I am wondering if there is any recent document summarising average wait list times for children waiting to be assessed for the At Home Program.
Date Range – From: 2013-09-01 To: 2014-09-08
PROCESSING ORG: Children and Family Development
APPLICANT DETAILS: redacted

On Tue, Sep 9, 2014, IAO Intake Team MTIC:EX wrote:

Good morning;


Further to my voicemail just now and in order that this request may proceed clarification is required. At present your request reads like a question, which is not the role of FoIPPA – should you wish to ask a question of the Ministry you will need to contact them directly.

 Alternately, should you wish to make a request for access to records perhaps what is being sought is:
 Any recent document summarising average wait list times for children waiting to be assessed for the At Home Program. Date range is September 1, 2013 to [September 9, 2014].


 To submit your request directly to the Ministry directly their contact details are below for your convenience.

 Ministry of Children and Family Development
http://www.mcf.gov.bc.ca/contact_us.htm




Regards,
[Redacted]| Intake Analyst | Information Access Operations | Shared Services

Yes, that’s right they just told me that in lieu of the request, I should use their “Contact us” page. Ever tried that??

From: Me
Sent: Tuesday, September 9, 2014
To: IAO Intake Team MTIC:EX

Subject: Re: FOI Request – General Records

Yes, the request is for Any recent document summarising average waitlist times for children waiting to be assessed for the At Home Program – between September 1, 2013 and today’s date. If such a document exists, please provide it.


On Tue, Sep 16, 2014, IAO Intake Team MTIC:EX wrote:
Good afternoon;


Further to our previous email, please note the Ministry has confirmed it will respond directly to this request and as there is another method to access this non-personal information a formal request under the Act is not required.

Should you wish to contact the Ministry to attain the information you are seeking please forward this email to [Name Redacted].

Ministry of Children and Family Development
[Name Redacted] Executive Director of [redacted]
email: xxxx@gov.bc.ca
phone: xxx-xxx-xxxx 


Please note no request file will be opened in this office at this time.



Regards,
[Redacted] | Intake Analyst | Information Access Operations | Shared Services BC

So they won’t open an FOI request because I could instead get the info from some guy whose name they give, who is not accountable in any way to the time limits etc. set out in the Act. By the way, this person whose name they supplied never got back to me.

From: Me 

Sent: Wednesday, September 17, 2014 11:26 PM
To: IAO Intake Team MTIC:EX
Subject: Re: FOI Request – General Records

I object to your decision not to open a request file. Please point me to the section of the Act or regulation which stipulates that if there is another method to receive non-personal information, that I am not permitted to make an FOI request. I would like the Ministry to confirm whether a document exists within the last year, which summarizes wait list times for children waiting to be assessed for the At Home Program, and if so, to provide it to me. My original request was discrete and provided sufficient detail for an experienced employee to identify this record. I consider the 30-day time limit to run from my original request on September 8, 2014.

On Fri, Sep 26, 2014 at 12:12 PM, [Redacted] ‪‬ wrote:
Good Afternoon,

Section 2(2) of The Freedom of Information and Protection of Privacy Act states that the Act does not replace other procedures for access to information or limit in any way access to information that is not personal information and is available to the public. Please see this link for a complete copy of the Act: http://www.bclaws.ca/EPLibraries/bclaws_new/document/ID/freeside/96165_00

We have been advised that the information you wish to obtain is available to the public without going through the formal FOI process. Please contact with the individual mentioned below, and/ or see the Ministry of Children and Family At Home website at: http://www.mcf.gov.bc.ca/at_home/index.htm

Regards,

Redacted| Information Access Operations| Shared Services BC

Now they’re telling me to look at their website instead of filing an FOI request, as is my right. And of course, the website contains no information about wait lists.

From: Me
Date: Fri, Sep 26, 2014 at 2:30 PM
Subject: Re: FOI Request – General Records
To: [Redacted]

The meaning of section 2(2) is meant to protect the public and ensure they can use other means in addition to, not instead of, Freedom of Information processes. It does not grant the government the right to deny a request simply because a person could possibly try to contact someone in government and get the information. If that was the test, no request would ever be granted. With respect, I suggest that you seek a legal opinion on this section of the Act.

In the meantime I continue to dispute this denial of my request.

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Equipment!

Today I am a happy camper. After struggling for months to fit C into a newborn bath ramp she had long outgrown, and then giving up on it entirely and having to bathe with her so she didn’t get stuck in an involuntarily reflexive movement she often reverts to when stressed, we finally have a safe bath seat. She can sit up in it and play. Now, I’m told that she didn’t actually love being in it during bath time. I was out doing something selfish, er, I mean, doing “self-care”, at the tennis court. But she’ll get there.

We also borrowed a walker. It’s an old walker – I’m going with the description “vintage” – but it works for now. In the meantime we’ll wait for the interminable bureaucratic processes to occur so that the funding agency can confirm our child is indeed disabled enough to qualify for funding so we can buy a different one that will grow with her to preschool age at least. So things are moving!

I’d put up a video of her using the walker we’re going to get, except she was wailing, and I was frantically singing “Itsy-Bitsy Spider” to calm her down. She did eventually settle into it, but of course she has no idea that it IS a walker, which will allow her mobility and independence. To her it’s just an annoying thing mum put her down in, when she really wanted to be held. For a child who can’t move independently, being held is far more comforting than sitting somewhere where you might end up slumped in a position you don’t want to be in, and won’t be able to get out of. But I’m optimistic that will change.

Posted in At Home with Preemies, Preemie Stuff | Tagged | Leave a comment

Summer Days

Yikes, sometimes I have so much to say I have to schedule posts and then a week or two goes by and nothing, nada, zip.

We just got back from vacation, which was lovely. We stayed on a farm, in an old log homestead. I was thankful again, that despite C’s CP, she has been very healthy. She got a fever on Day 6, and if she’d had a shunt, we’d have had to race to a hospital to make sure it wasn’t malfunctioning. Thank goodness, she seemed to just have a virus, and I just dealt with it the way we do with the others. But she was so sad and so much weaker. She couldn’t even tolerate holding her head up in her high chair. Thankfully she’s on the mend and she is back giving her patented Coco smiles.

I knit a lot, but didn’t count on no web service, so I couldn’t access my Ravelry patterns. That means, I just did about 20 more Pop Blanket Squares, but I won’t bore you with pictures. Instead I’ll bore you pictures of the kids.

Coco on Hols

Bea

Beets!

I also read two books. The first was Four Walls of My Freedom, by the mother of a now-adult child with CP. It was a good read – first just because it’s interesting to read the perspective of someone looking back on the early years. With the benefit of hindsight, she questions whether all the more intense therapies or medical treatment was worth it in the long run. The balance between “fixing” and “accepting” is a constant moral dilemma I have. It’s sobering too, as she explains some of the trials they’ve gone through, such as when she thought the doctors were finally understanding the pain her child was in, and instead she was investigated for giving her child too much pain killers. It’s more than a memoir though, as she makes some interesting arguments about the way we value people with disabilities, offering a sort of a primer on some of the philosophical thinking in this area. She discusses controversial figures like Peter Singer, who has argued that infanticide may be warranted in the case of children born with severe disabilities. The prejudice and stigma faced by people with disabilities is very real – perhaps one of the last areas in which it is socially acceptable to make that kind of argument. She proposes a very different approach, based on the thinking of Amartya Sen, which values experiences and relationships as measures of well-being. She works with someone to develop an index of well-being that applies to her family.

I also started, and am mostly through, Andrew Salomon‘s Far From the Tree. At first I was puzzled by this book, which deals with a concept he calls horizontal identity – children who are different from their parents due to deafness, dwarfism, severe disability, or even things like being born of rape. I wasn’t sure what it all had in common, or whether I should be insulted by the idea that having a disabled child was similar to having a child who commits mass murder. Anyway, I put it aside and read it and accepted perhaps we shouldn’t place these experiences in a hierarchy. Each chapter stands alone and simply recounts the experiences of families dealing with these “differences.” He tends to the extreme – his examples on disability were all families of kids with multiple severe disability, and I found his chapter on autism particularly bleak. But he resists easy, pat summaries – discussing the controversial Ashley Treatment with sensitivity and compassion to both sides of the debate. His strength is that he lets the stories speak for themselves, and they in turn speak to the larger human experience. I felt profound empathy for what they were going through, even in stories where parents walked away and said “Sorry, I can’t do this.”

Posted in Blankets, Knitting, Stuff I Like, Travelling | Tagged | 1 Comment

Abate

I fell in love with this yarn at Knit City last year, and with another Knit City pending, I realized I better work my way through what I bought last year! I just love the crazy neons and how you can get a single stitch in one colour. It kind of reminds me of the crazy variegated acrylics you can get, but this is hand-painted loveliness. I hate knitting with acrylic, so this is as close as I’d ever get.

I started to knit a Purl Soho placket sweater. (Must add that I’m not convinced the pictures currently featured on Ravelry do it justice – it’s a very cute pattern and when I made it, the collar didn’t flare) But I had been a bit too casual about swatching it, and it turned out much larger than expected. Miss M announced she did not want another sweater, so I tore it out to make it for some more willing creature. The yarn, a Blue Leicester DK, knits up more like a worsted. I inadvertently blocked part of it by leaving it under the sprinkler, so I can confirm it puffs up nicely too. Anyway, I chose a worsted pattern instead, Abate, which has been in my favourites for ages. I bought three skeins so I am hoping I have enough left over to make some socks or a hat for ME.

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Is it Just Me?

If you’ve read this blog before you might remember that I have a pet peeve about articles written in the second person, particularly parenting ones. (See how I just did that? Used the second person?) “If your child won’t sleep through the night you should…” “You know you’re a twin mom when…” It attempts to universalize experiences that are, in most ways, pretty individual. The most recent manifestation of this phenomenon that I have noticed is on pages or in groups aimed at “special needs” parents. It’s the ubiquitous special needs inspirational post. (This blogger did a send-up of this issue recently.)

These listicles or memes are posted frequently in some of the groups I check. There was one I saw recently, and I realized I could not relate to anything on the list. I’m not saying these emotions are invalid, or wrong or that some “special needs” parents don’t feel them, but it certainly not a feeling we all share.

One was: We are good at keeping secrets. Um, no. I have a blog about my daughter’s disability. A PUBLIC blog. Shortly after the girls got home, I was chatting with a young guy at my local coffee shop, and before I knew it I was launching into my daughter’s brain injury. I cried with mothers at my son’s school whom I barely knew at the time. I find it comes up occasionally at the lunch table over work, because, guess what, I spend a fair amount of my home life dealing with it. So I am not a secret-keeper. Not that there’s anything wrong with that, but I’ve never been able to keep much in for long. What can I say – I like to talk about myself.

Another was: We are jealous of other families. Again, NO. Before I had a daughter with CP, I probably assumed people in my position did feel this way. Do I sometimes wish my kid didn’t have to deal with her disability? Yes. Do I sometimes wish I could change that rocky first few days when this all happened? Of course. Do I feel jealous of other people’s family? Wish I had some other snotty-nosed kid who could walk instead of my delightful gal? Wish I had YOUR kid? No. I will, someday, get to the point where I stop wishing this hadn’t happened. Because it has.

Another meme you see a lot is that special kids choose special parents. Having spent quite a bit of time in the Neonatal Intensive Care Unit watching many desperately ill children and their parents, I can say that, sadly, that’s not true. As one of the nurses said though, a lot of them just rise to the occasion. I do feel like I am a good parent and a good advocate for her. Not perfect though. Not born for this. Just dealing with it because, well, I have to.

While I’m complaining, I’m also not in love with the term special needs. I feel like it’s just so broad. People with gifted children are calling themselves special needs parents. Do they face challenges? Sure. Do they deal with the stuff we do? No. Should we get inspiration from the same insipid quotes? Probably not. I do love reading special need parent blogs and I learn a lot from *some* of them. But I don’t even necessarily relate to parents of other kids with CP, as in some cases their CP might only affect a few very minor things, whereas C is classified as “quad.” And even among people with four limbs affected, there is a huge range. So wouldn’t it be fitting to embrace the diversity and stop trying to assume we all have the same feelings?

Posted in At Home with Preemies, Preemie Stuff | Tagged | 1 Comment

Milestones

At 14 months (er, 16.5 adjusted – is it strange that I NEVER think of them in terms of their actual age?):

Bumbo
I can play my keyboard, pick up a spoon and chew on it, and sit with support (though I do find it tiring after a few minutes)

AFOs
I can also roll from front to back (and probably from front to back, except I hate to), pout when my therapist comes, and laugh at my brother’s silly jokes. I can stand if my waist is supported. In my AFOs I can also stand if you are just holding my hands.

Toy Car
I can also ride in a toy car (but make sure you lock that door!) kick in the swimming pool and I am starting to babble lots more.

Bubbles
As for me, I can sit independently, climb stairs, crawl (though I prefer the bunny hop), say Mama, Dada, Mah-go (Margot) (a few other words too) and sing along to Roly-poly

Ride on Toy
I can also have tantrums, pull apart my mother’s purse and scream louder than anyone in the house

Swing
Oh, and I can steal my sister’s toys or sit on her play tray, but I also give her lots of zerberts and pats.

Posted in At Home with Preemies, Preemie Stuff | Tagged | 2 Comments

Sweet Little Shrug

Okay, this is a bit of a cheat, because I knit this months ago when I was on maternity leave, but I finally got around to sewing buttons on, and I don’t think I ever posted it, so here you go! A sweet little short-sleeved cardigan.

Shrug

This was a super easy knit, basically made because I wanted to use up some Cascade I had kicking around from my aborted attempt at a blanket. But it’s a practical little item, and I think it would even fit Miss M as a little shrug over a dress. Oh, and without sleeves it knits up so quickly!

C in her baby shrug

Posted in Knitting, Sweaters | Tagged , | 1 Comment

Crochet

The pop blanket continues…

Pop Blanket Progress

Also, I’m learning a new needle art – crochet.

Crochet

It’s a bit of an adjustment for me. I’m at the point in knitting where I can “read” my stitches – recognise mistakes, purls, increase and decreases. I can count rows and can figure out how to get where I want to go. With help from Youtube, I feel pretty competent at most projects. But I can’t do that with crochet, so this is a challenge for me. If I make a mistake, I just rip it all out. Casting on is much harder than in knitting, at least if you want to make sure you have the right number of stitches. I recognise now that this may be a function of the yarn, which contains merino, and has a tendency to stick together. It is not very forgiving. That said, once you get going, it’s very quick, so that’s appealing.

I originally wanted to learn to so I could use it to seam my pop blanket, and also to do edgings and stuff. But now I’m starting to be intrigued by stand-alone projects too.

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Pop Blanket Update

Well, I’ve got nearly enough little squares for a baby blanket, but I don’t have much use for a baby blanket. I’m thinking I want it to be at least throw size, but that would mean, by my calculation, about 80 squares to make it 50″ by 60″. Which means I have a lot more knitting to do.

Also pondering whether I should do it rainbow-styles, or random. Decisions, decisions.

These squares are upside down as I was drying them in the sun.

Blocking the POP Blanket

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Summer

I’ve been off knitting for a while – hard to deal with bulky wool when it’s 30 degrees. But I have a new project perfect for summer. The pop blanket! Wee little colourful squares that are fun to knit, knit with Noro so you never quite know what colour the next square will be.

Pop Blanket
Okay, these two look kind of like boobs, but imagine more! In blanket shape!

What else is up? The garden is growing.

Garden - July

The big kids took horseback riding lessons, which Miss M in particular adored.

Riding

C and I had fun in Stanley Park. Not sure why my hair looks so ’70s unwashed here, but since the Coco-monster looks cute I will post anyway.

Fun in Stanley Park

B learned to climb and torment her sister. Darn, thought I had a better picture of her riding in my new front-bike seat, but I can’t find it.

Bea climbing
And since it’s late and Flickr is being finicky as usual, more later!

Posted in Knitting, What Life is Like | Tagged , | Comments Off