Disability Tax Credit

The Disability Tax Credit is available to Canadians of all ages with PKU or allied disorder.  The name Disability Tax Credit is unfortunate. Applied to PKU or allied disorders treated by diet therapy, it should be renamed the Prevent Disability Tax Credit. Let us explain.

For most people living with PKU or allied disorder diagnosed early through newborn screening and on successful treatment for life, you are not disabled – that is the whole point of the diet/therapy, every day. And you as an adult or your dependent child are eligible because the DTC has a pathway called life sustaining therapy. The time you spend to prevent disability qualifies for this tax credit. So in fact and in law, this is a federal tax credit to help prevent disability, and to help others who unfortunately are impaired physically or mentally.

We have created an information package to help you navigate the process which includes advice on the 6 easy steps to a successful application.  Since we launched this package and campaign in 2015, every single person who followed our advice has been approved, even if turned down at the first step. Let’s say that another way:

Our success rate is 100%, meaning we have directly helped +150 families and adults living with PKU or an allied disorder get approved!!!

This package is available to MEMBERS ONLY, that is those who hold current membership. If you are a current member, or once you are, you can access these documents and our further personal assistance under the MEMBERS ONLY tab.

The annual fee for CanPKU membership is going to be the best investment you can make this year and in future years when you see the tax refunds going forwards – and going back as many as ten years – that flow from DTC approval. And DTC approval opens the door to other benefits and tax credits. We will send you that information and suggestions as soon as you inform us of your DTC approval.

What are you waiting for?

You can start the process by completing this intake questionnaire You will still need to have membership to continue from this point and be assigned a worker.


The self serve information can be found when logging in to your member portal and access the Members Only Area.

Do I qualify? I do not believe myself (or my child) is disabled. Following our clinic, we are "normal" people with a rare disorder.

Here is a letter from a mom regarding her feelings on this. It is direct. It can be harsh. It is real. It will help explain why this is not a benefit for "just" those with a disorder but those who are preventing a disorder.

Letter from a Mom about the (poorly named) Disability Tax Credit.

How will someone know if they already have applied and been successful?

Please check last year's taxes, specifically Line 31600  If that is blank, you have some work to do, and likely some money coming your way.

If it has a number in it - congratulations  - you are already registered for the Disability Tax Credit!

What if I applied and was not successful?

We are here to help! You will need to become a member, but for $25 you can get back thousands - sometimes tens of thousands!

Still not sure?

Check out this website. This is a known lawyer to CanPKU. He is aware of our track record on DTC wins. He outlines very well the disability tax credit. It's easier to send you to his site then recreate the same information he lays out so well! Check it out

https://www.resolutelegal.ca/disability-tax-credit/

Not a Member? Join now!

This all started when Nicole Pallone, Vice President of CanPKU, applied on behalf of her daughter, Rosie.  Here is her story:

At one of our events last year, the Dad of a patient with MSUD asked me if I had applied for the DTC.  “No,” I replied. I had heard of other PKU patients applying without success and I do not have a lot of time to waste in my life. I will also admit that I struggled a bit with the idea of ‘labeling’ Rosie as disabled.

However, this Dad had successfully applied and when he talked about the financial benefits… well, frankly, I didn’t care much about the label! So, he shared his application with me which included a letter describing the condition and why diet is an essential component of management. The letter, I think, is key. Let’s face it, not many CRA workers are going to be familiar with PKU or MSUD or any other IEM unless they have been personally touched by it. And that small response box to the “Provide details about how you provide care” question just doesn’t cut it!

In a nutshell, we applied. Our clinic doctor was great about filling out the forms, I crafted a heartfelt explanatory letter, and we mailed it off at the end of May. And we waited. And waited. And waited.

By the time I received a response at the beginning of August, I had almost forgotten about it. But there it was, in my hand: a letter stating that our application had been accepted! The letter stated that we can now claim the DTC until Rosie is 18, and that a reassessment of prior tax years would be forthcoming.

Then, a few weeks later, it happened: we suddenly had an extra $3,000 in our bank account! Cautiously optimistic, I called the CRA for an explanation. I learned that it was an adjustment to our Child Tax Benefit paid over the last three years. For prior years, we would have to request a review in writing. And the same would happen with our income taxes – they would automatically reassess the last three years, but anything before that we would have to request in writing.  So we did.

The process finally ended in December 2014. More than 6 months after submitting our application everything had been reassessed and we had received a whopping $25,000 in refunds!

CanPKU realized right away that we needed to help other Canadians make successful applications, and I am thrilled to announce that the CanPKU Disability Tax Credit Information Package is now available. It includes instructions, examples and tips for making a successful application. Remember that retroactive refunds will vary greatly depending on your income and taxes paid over the years but even if you are accepted and don’t receive a refund, you will still pay LESS taxes in future years.

And yes, adult patients should apply. It is important to note that not every IEM patient will qualify – those with high tolerances, either because of Kuvan or without, will likely not be able to satisfy the requirements. The key is illustrating that eligible activities – doing blood tests, tracking phe intake, preparing and administering formula – take 14 hours or more per week.  Preparing meal, purchasing foods, traveling to appointments and the hundred other things we spend time on with this condition are NOT eligible.

In the first year since launching our DTC Information Packages, we have given out over 100 packages.  Of those who have reported back to us, approximately 50% have been approved.  We plan to work with the CRA to educate them about the condition and ensure that the PKU applications are being reviewed fairly and knowledgeably.  You can help by giving feedback about your own experience by emailing us.



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