Kids are expensive. I’m going to go out on a limb here and say kids with CP are more expensive (regular trike $150, adapted trike $4900). I recently read over at Mama Lewis about the cost of raising a child with additional needs in the UK, a country with national health care like us in Canada. Where we get some help from government programs. Compared to the US which is insurance based and usually comes with a fight. We also have insurance to help out with additional costs not covered by the government which helps pay for private therapies while Seb is on the long wait list for publicly funded therapies. Ha. Unfortunately, it was not created for parents of a child with a disability. It was created for someone who might get a sports injury.
Our plan covers $500 a year for PT. One session of PT privately costs between $120-125 an hour. An hour. In Egypt it was $80 an hour and our insurance covered 80% of all costs/therapies (except alternative ones). Hippotherapy is $70 per half hour session. It is covered under PT. We’ve used our yearly allowance on that alone already. ABM is not covered. We stopped going shortly after school started. School costs $505 a month, prorated for starting in November. Our plan does not cover OT. One session privately is also $125 an hour. We did half hour sessions every two weeks once school started to help minimize costs. SLP/Feeding therapy, that’s $125 an hour too. We’ve been doing 45 minutes every two weeks. We just started doing an hour. Our insurance covers $1000 a year. Better. But if you do the math you’ll find weekly visits, which are better, would put us at our limit in just a few months.
Let’s talk about equipment. This is the department where we come out on top, so to speak. There is a program here called ADP which can fund up to 75% of equipment costs depending on your salary and you are required to pay the remainder. So, let’s say we want to get a manual wheelchair for between $5-6000. We (hopefully) pay around $1200. The wait for the funding is about 3-4 months after applying. Not too bad. There was also a 5 month wait for the seating clinic which would put all of this in motion. I called our insurance company today and it looks like they will help cover the cost of the wheelchair. I’m almost jumping for joy; I am so very excited about the possibility that the cost of the chair may be fully covered. That would pretty much make my month.
We are finally on the wait list for PT and OT at the hospital, which means we could look at applying for ADP funding for a walker/gait trainer by summer too. Our costs for that with funding hopefully don’t go over $1500. Which we have set aside from our Calendar Fundraiser last year. I will also submit an estimate to the insurance company with a letter from Seb’s PT to see about getting additional help from them. The reason for the wait in getting on the wait lists for OT and PT? First we had to wait for an appointment with a developmental pediatrician. That was about 5 months. Then she had to discuss Sebastian with his therapists at school. Her belief was that since he is in school he gets therapy there and thus doesn’t qualify for additional therapy covered by OHIP.
Sebastian’s school therapy is on a consultative basis. There is an OT, PT, and SLP (or SALT) at the school once or twice a week for all the kids at school who need their services. They come in to see Sebastian in class and sometimes try new things with him or work on skills he’s developing and then show the teacher what to do. Any therapy he gets at school is mainly carried out by his teacher in bits throughout each morning, over the course of the week. Making sure he is in the right positions, trying different equipment, activities for fine motor development, etc. In the beginning the therapists spent more time with Sebastian so they could get to know him and his needs. I think the therapists at his school are fabulous and his teachers are wonderful. For one-on-one work he needs private therapy until we get it from OHIP, which is organized to start when school is over for the summer.
Before moving to Canada I had heard nightmare stories about waiting to be seen by doctors. Well, that has not been the situation for us. Yes, we have to wait to get appointments with specialists but we have a pediatrician that I can call up in the morning when Sebastian is sick and they will fit us in that day. If we need advice, the nurse will call us at the end of the day. We’ve been to the ER a couple of times. Thankfully we have not waited in the waiting room either time. We waited 6 months to see a gastro-ped, but then she didn’t have anything new to tell us. We were meant to wait 3 months to see a neurologist, but after Sebastian had an increase in seizures and we ended up in the ER, the neurologist on call that night got us in to see a specialist the NEXT day. Before we had OHIP our insurance reimbursed these visits 100%. Now that we have OHIP, we pay nothing.
Medications. Sebastian takes a lot of medications. Our insurance helps with that so we pay very little every month, depending on the script. Name brand ones cost a little more. I read a post from a mom in the US that paid thousands of dollars last year on her daughters prescriptions. Our previous insurance in Egypt covered 80% but when we were in Egypt we couldn’t get the medicines he needed!
I am so thankful we live here in Toronto with national health care in place. We do struggle to afford all of the additional therapy Sebastian needs but he is also very well taken care of by the system. We go to a feeding and nutrition clinic every few months at the same place where he had his seating clinic and (hopefully) soon his OT and PT. It took time to get ‘into’ the system and Sebastian being in school helped fast track many, if not all, of his services. No situation is perfect and there are times when I feel worried about whether he is getting enough therapy because of what we can afford. Then I find out we get help with some of the equipment he needs and things start to balance out a little.
There are some people in the US that are afraid of a national health care system. This makes me sad. I’m pretty sure that we can’t afford to live in the US on a single income with Sebastian’s needs. If we had lived in the US when Sebastian was born, we’d likely still be paying on tens of thousands of dollars from his 16 days in the NICU. You could argue that it’s also possible it may not have happened. It could too be possible that had we been at another hospital in London, where the maternity care was better, it wouldn’t have happened either. But I digress. It did happen. And this is what it cost. And this is how we do it. One day, one therapy, one piece of equipment at a time.