Where to begin? I feel as though Ella’s care under the BC Centre for Ability and the BC Ministry of Child and Family Services has crashed and is sitting in a smouldering heap. Okay, maybe that is a bit of an exaggeration, but tonight, as I play over the communication over the past few months, the absurdity of the whole situation has come to light.
**CAUTION: rant post full of first world problems**
Okay, so technically, Ella should be entitled to care through the BC Centre for Ability. When we moved from Ladner she was transferred from REACH development (which was awesome) to the BC Centre for Ability in Vancouver. It didn’t take long for somebody (whose name I can’t remember) to contact me over the phone to get the ball rolling…I don’t think I have heard from them since. Under Reach we had one person who facilitated all of Ella’s “team” but through the BC-CFA, there are various people who handle different areas. Under Reach, I felt no need for pursuing private therapy, because Ella was well cared for and lacked for nothing. She had OT, Speech, an aid at Preschool and a REACH worker who was there for any questions or support.
When we moved to Vancouver, I knew that things would be difficult because it was mid-year. Funding had already been allocated and therefore, Ella would not get an aid and probably not make it off the wait list for speech therapy or occupational therapy. Fair enough…but here is where the problem comes in. Knowing that we wouldn’t be able to receive services through the BC-CFA, I thought it time to look into other sources of funding. Well, in reality, I did some research as soon as we moved to BC but it didn’t take long to find out that the BC government had nothing to offer us. You see, in BC there are 3 ways to get additional funding for a child with a disability.
1.) Qualify for the “At Home” program. In order to qualify for this program Ella must be “dependent” in at least three of four categories (eating, dressing, toileting and washing) Strike one. Dammit Ella, we shouldn’t have potty trained you so early, or worked so hard to get you to feed your self, or brush your teeth or taught you to dress yourself.
2.) Have Autism – Strike two. Ella definitely doesn’t have autism.
3.) Have an IQ of under 70….alright, here is our chance. So, on the recommendation of our OT, SLP and Reach worker we had our paediatrician, who was reluctant, refer us to Sunnyhill to have a Psych ed assessment (aka: an IQ test). We were flat out denied. They said that based on their assessment Ella was a “typical child with Down Syndrome”….whatever the hell that means. Truth be told, they never even saw Ella in person. They asked for no reports from SLP or OT and I did not once, speak on the phone with someone from Sunnyhill before receiving the template letter complete with [name] still intact telling us the case was closed.
So no government funding for us. I spoke with somebody from the Ministry and they said to pursue other charities for funding. For example, the Variety Children’s Charity. Not my first choice, because I don’t like to take advantage and do believe there are others out there that need it more than us, but I strongly believe that Ella would benefit from both the Early Reading program at the Down Syndrome Research Foundation and their SLP services. Unfortunately, both programs are $850 for a 10-13 week session (standard fare for a private tutor or SLP, but way beyond our budget). The fact that we are well below the poverty line works in our favour when filling out these applications, so I thought, why not? Here is the catch though – you need a referral for the program and when I asked the BC-CFA for the referral, they said that they couldn’t give one. They couldn’t give one for speech because they could offer Speech services – and by this, they meant a GROUP session every two-three weeks, which would not run in the summer and we would be handed over to the school district in September when Ella starts kindergarten. And they couldn’t offer a referral for the reading program because it isn’t speech? I don’t know. It’s all a little confusing and I feel like we are being jerked around.
A friend of my articulated this for me the other day: she said, it’s like they are punishing your for being an attentive parent who has worked hard with their child in all areas of development. Ella is caught in the middle. I have heard other BC parents complain about this – she is too dependent to be grouped with the “typical” children and not dependent enough to get the benefits of being “disabled”. We have been handed off to so many different people since moving to Vancouver, I don’t even know who is who and no one can, nor seems to want to help us get a little support for our daughter. The thing is, is that if Ella didn’t have a diagnosis, or was diagnosed with Autism she would be treated so differently. And this, my friends, is why the BC government, and our so-called welfare state is failing Ella and us, as parents. We are just trying to do what is best for Ella, and yet, it would seem that we have almost done too much. Take note, new parents of a child with Down Syndrome – don’t try so hard and you will have a better chance of getting what you need.
|Shooting ourselves in the foot – once they see she can make her own pancakes we’ll be really up a creek without a paddle. They probably will try to tell us next that she won’t even get an aid in school….