Beef #1 (of many) with being a Special Needs Parent

Tonight I attended a board meeting for a severely disabled special needs summer camp program in Calgary that Reilly is going to go to this year for 5 weeks.  One of the issues that came up was Transportation. The summer camp pays for the transportation costs associated with those campers that take Access Calgarycity transit.  According to their web-site, Access Calgary is responsible for managing the eligibility, booking, scheduling and dispatching shared-ride, door-to-door public transportation services for Calgarians with disabilities.  The cost is nominal to the camp and a non-issue. What is the issue is apparently the service.  

One parent told of a horror story from last summer, where their non-verbal, highly disabled child was on the bus for over 4 hours when a direct drive would have taken 20 minutes.  Apparently it was a nightmare trying to track down where their child was and although no one else’s child experienced a crazy ride like that one, what was still echoed around the room was a complete dissatisfaction with the service. They said their kids were often subjected to be on milk-runs with multiple pick-ups, with an average commute of over an hour each way, not to mention pick-up delays, and many drivers did not seem to possess any special needs sensitivity skills let alone training.   For many parents this is the only transportation option available for them.

After hearing these stories, there is no question I will be driving Reilly to and from the camp despite the not so ideal  location of it and the timing of the camp (camp runs from 9.00 am to 2.30 pm).

Some people might be saying how is this different from what you would do with a typical child, oh let me count the ways….

1)  As indicated the special needs camp runs from 9.00 am to 2.30 pm.  Camps for typical children or ones that can accommodate milder disabilities usually run from 9.00 am to 4.00 pm and most have a before and after camp child care option.  The shorter special needs camp hours still create a child care gap for parents  – making it difficult for both parents to work full-time jobs.

2) Camps for typical children are scattered all across the city and I can easily slot my typical child into one of many within a 10 minute drive radius. It doesn’t hurt that with typical children you can easily set up car pooling arrangements with other parents.  Whereas, this special needs camp for severe disabilities is the ONLY one in the city.

3) A typical child usually goes to a camp type environment because both parents work.  When there is a stay-at-home parent, sometimes a typical child will go for a couple of weeks as an enrichment opportunity but not for the entire summer simply because of the cost factor.   In most cases the other weeks the child is at home, where the parent or caregiver is scheduling different types of activities – bike rides, swimming, going to the park, play dates, etc.  When you have a severely disabled child, summer camp is not a luxury item but often a necessity for not only the parent but also the child’s overall well being for they can’t typically engage in the same summer activities most other children can freely enjoy with little effort.

4) How many parents would allow their typical 7, 8, or even 9 year old take city transit to get to their summer camp destination? Let me guess, very few if any? Plus, any typical children of this age would be able to communicate exactly where they needed to go.  So why would anyone think it is acceptable to subject our most vulnerable population to taking public transit when these workers are not specially trained to work with this segment of the population and/or the driving times be kept to minimal stops?

At the end of the day, I am thrilled to have found a camp that suggests it is going to be a good fit for Reilly. One that will engage and stimulate her in ways that I or any one-on-one caregiver could ever accomplish at home over an 8 week period.  I truly am grateful.

As I drove home though, I was also livid, frustrated and disappointed that I am part of a society that has created such an unfair burden on families like mine.

 

 

 

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