Monday, 28 January 2013

Carter's Story Part 3: More Waiting

Part 1        Part 2

Carter with the Vantage device borrowed from Aroga.
Armed with my research about Minspeak and the Vantage Lite voice output device, I got in touch with Aroga, Canada's distributor for Prentke Romich products. They shipped us a Vantage device for Carter to try out and they treated me to a webinar to explain the ins and outs of the device (as well as two other devices that were comparable in functioning).

Shortly after receiving the Vantage device and seeing Carter's success in using it, I requested that the speech language pathologist (that had done Carter's AAC evaluation) write up a prescription for a Vantage Lite for Carter. With the SLP's prescription, we would be eligible for funding through Ontario's Assistive Devices Program (ADP). The funding would cover 75% of the monthly fee to lease the high tech device.

The SLP informed me that the Vantage Lite had recently been recommended for approval by ADP but it had not yet been approved and was not on the list of devices available for lease.

Back to researching. I needed more information, more details about how the Assistive Devices Program worked and more specifically, how long it would take for a device to be approved.

I called the ADP office to find out about the status of the Vantage Lite and to try to gain a better understanding of the approval process. I also wrote to my local MPP to see if she would intervene on our behalf and help move things along. I did all that I could to see that my son get what he'd been without for too long - a voice to call his own. 

My inquiries eventually lead to an answer: the Vantage Lite 'should' be approved within the next few months. 

Meanwhile, Aroga was kind enough to offer the loan of their Vantage device until the approval took place, which turned out to be two months later - but, as I would find out, just because a device is approved that does not mean it is immediately available for lease.

After being approved, the devices need to be purchased by the Centralized Equipment Pool (CEP) and given a catalogue number (i.e. put into the system). The Vantage Lite was not the only type of device that had been approved at that time. ADP had approved several other types of devices and due to budgetary restrictions, the integration of the devices into the ADP program would happen gradually (it costs a lot of money to purchase several devices all at once, let alone several different kinds of devices).

Again, I placed phone calls to get clarification on this new information. I found out that the device purchases would be staggered. It was possible that the Vantage Lite devices would be the first to be purchased but it was also possible that they would be the last to be purchased. There was really no telling when the Vantage Lite would be available for lease. I asked if a single device could be purchased for a client that knew exactly what they wanted, but I was told that's not the way the process works.

Initially thrilled by the prospect of having access to a government program that would fund the costly speech device that Carter needed, I soon began to question how helpful the program actually was if the device we wanted was not available. We had the option of getting Carter a device with lesser capabilities but my feeling was, why settle for something that's not ideally suited to Carter's needs?

The Assistive Devices Program offered some wonderful benefits including the fact that we could lease a device for Carter for a minimal monthly lease fee and if anything went wrong with the device it could simply be exchanged for a fully functioning device. However, the benefits didn't erase my concern about having to settle for a device with lesser capabilities than what Carter needed.

My husband and I considered waiting a further three to four months to see if things would fall into place in our favour. Maybe we'd get lucky and the Vantage Lite would be the first device to become available. After weighing things out, we agreed that we'd waited long enough. Carter had waited long enough. We went ahead and used our ADP funding to purchase Carter's Vantage Lite outright (the funding would cover 75% of the cost). 

This meant several things. 
  1.  We would not be eligible for any further funding for the next 5 years.
  2.  If anything were to go wrong with Carter's device we would be responsible for getting  it fixed on our own (this happened last year when Carter dropped his device at school. You can read that story here.)
And finally, the most surprising and disappointing thing of all:
     
     3. We were immediately discharged from AAC speech therapy service at the children's development centre. "As Carter's device is purchased, per ACS policy, he is discharged from ACS at this time." (from Carter's Augmentative Communication Services (ACS) Discharge Report dated Jan. 27, 2011)

Like so much of what we'd experienced throughout this process, this made no sense. We were extremely frustrated. Finally, Carter would have his own speech device but we would have no support in helping him learn how to use it.


Click here for Part 4 of Carter's Story: A Device for Carter But Who Will Help Us?

6 comments:

  1. grrrr...the system is enough to make you scream...we too have dealt and continue to deal with ACS...Todd had a Dynavox for 5+ years...a regular dinosaur...but we had to prove that we had a clinical reason for replacing it..and we too had to wait until iPad's ( the device we wanted) were available to lease...sigh...he finally got one...and it is all that i want and more for him!!! Now we just have to wait for it to break so he can get a newer version with a camera in it! LOL...how much did you have to pay for Carter's device..the 25% part?

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    1. It wasn't cheap but when we did the math on lease payments over a five year period it made sense to go ahead and make the purchase. I'm really glad we did - other than the hassle of getting it fixed (which has only happened once so far...knock on wood) it's been money well spent.
      The bureaucracy is so very frustrating. If you take a look at Barb's comment below she mentions several of the challenges that go along with leasing a device (which you've also experienced). As she says, there has to be a better way. Have you ever read about how it's done in BC? SET-BC loans devices to students and then collaborates with the school district to provide training to students and teachers. Take a look at this link: http://www.setbc.org/service%5Fdelivery/

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  2. Wow, thank you for sharing. There are a few things I would like to add. 1)Even though you lease the device there is no way to guaranty that there will be a device waiting for you when yours is not working. I believe they have 3 weeks that your child can go without having a device.I may be wrong in the time frame, but I know from experience that my son was without his voice. 2)Whether you lease or purchase you have 5 years before you can apply for another device. There are also factors that come into place.. 1) Has the users needs change, if so what are the changes, 2)how do these changes affect the user from using the current device, 3) Just because 5 years have passed it does not mean that you qualify for a new device,4) You will need to be re-assessed to see if you meet the criteria for a new device.5) This being said even if you qualify for the new device it does not mean it will be NEW.. meaning the device you get could be a used device, unless you purchase it.. 6) It comes down to whether there are funds available to purchase devices and how many people are waiting..... This is the first time my son has received a new device and he is 20 years old.. We too waited a year for his device to be approved, and yes we had to go through testing to see if his needs changed, and we had to prove why his old device didn't meet his needs.. it's very sad and frustrating that our children need to wait to have a voice of their own, and very upsetting that we need to prove what they need to be succsseful communicators. There has to be a better way to get devices into their hands. Now to address what happened to you with Carter being discharged.. that is WRONG... VERY WRONG.. because you purchased a device instead of leasing it your son lost his services... this should not of impacted your son in anyway. I have never been told if I purchased our son's device this would happen. My heart goes out to you as I know how hard it is to learn a device and to make sure it is set up to best meet your child's needs.. Shame on them for doing this... I'm not a happy person to see what they have done to your son..

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    1. I'm still shaking my head about being discharged from ACS just because we purchased Carter's device. If I didn't have it in writing I wouldn't believe it myself. The next part of Carter's story (which I will post in a few days) talks about moving our family to where we live now in order to get better support for Carter with his device.
      You are absolutely right when you say that there has to be a better way to get devices into the hands of our kids. And there has to be a better way to provide our kids (and their caregivers) with adequate support around using their device.
      Waiting lists, having to prove that your child needs a device, these things are simply unacceptable. Communication is a fundamental human right that should be made available to everyone, in the most suitable form, as soon as humanly possible.

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  3. Always rooting for Team Carter!...Claire

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    1. And we thank you, as always for your support! :)

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