Advocacy

This girl is worth it!

Earlier this month when I was busy caring for Ashley in the hospital while she was fighting  H1N1 and the nasty side effects.    A number of services Ashley receives from CCAC (Community Care Access Centre) or our government came in question. Such as why does Ashley need to receive the level of physiotherapy?  She gets 20 visit every six months currently and has been for a while now.   Her  case manager thought perhaps Ashley should get 10 visits every 12 months like less then one a month.

CCAC also believes it would be better for  Ashley's CME therapist to  be  teaching me how do physio with Ashley ?   Rather then do weekly treatment.  You see Ashley has a new case manager since Ashley started school who doesn't understand how CME therapy benefits Ashley.  Or  how taking this away would put her at risk of not reaching per potential to walk.

 I have no idea what would give them such an idea.  Obviously this case manager does not understand CME therapy, have a child that does not walk, or think I'm super human and if I could be Ashley's Mom and her CME therapist I would but  I'm NOT!!  Ashley's CME therapist that is provided by CCAC is one of the absolute best and is determined to see that Ashley is walking as her mode of transportation. This is a a hugh goal that Ashley has made tremendous gains with thanks to her help as well as Ashley private therapist help.

Ashley has been seeing these 2 therapist weekly since she was less then one year old.  It is expensive therapy and worth every penny we have spent on this privately.  The government is under pressure because there is not enough therapist or funding to provide adequate help to everyone.  Which is really too bad  however my child is making developmental gain that will lead her to live a much more independent and happy live. It is critical now that she continues to receive the same level of therapy in order to reach her walking goal we have been working on this for 4 years now.  She is getting closer and closer every day so now is not the time to make these kind of changes. What were they thinking??

However the shorter version of this story is Ashley amazing CME therapist is a great advocate and went to batt for Ashley and managed to get  another 20 visit for the next 6 months.  Thank god!  She is very worried what will happen six months from now.

In the mean time I went searching for some advice on how to best advocate for Ashley in case her service level is in question again. Which I'm sure will come up again in 6 months time however I will be much more prepare. This is what I learned...

When you get those unexpected question like about decreasing nursing  hours.  I was told to  respond with... "I'd like to consult with Ashley's Doctor on that if you don't mind and get back to you with his input".

 Same goes with questions about reducing  PT or OT get letters from everyone professional involved they hold a lot of weight and make it easy for your case manager to grant you what you need since he or she needs to plead our kids case to her manger.   If  provide  back up from our Doctors, therapist, Early Interventionist, you are more likely to get what we are looking for.

Here's some important content I was told to include in these letters...

- The letter needs to state the benefits my  child gets from the therapy giving our child the much needed developmental gains.

-Be  specific if you know who the therapist is you want or need state their name and why  they are  trained and the best person to help.

- Without this service CCAC is  putting my  child at RISK if she loses these supports.

- It would detrimental or counter intuitive to take away or make changes to her services at this time.

Gather letters of support from everyone on your team that can help, your EI, PT,OT, all involved Doctors, nurses.   The more the better they don't have to be long.

Also in question was Ashley need for home nursing but nothing has been changed so far. I definitely worried about this but  plan to be better prepared next time I get a call about services.  If anyone has any advice for me on this I'd love to hear it .