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 through Medical Nutritional Therapy, preventing a prolonged impairment will qualify providing you spend "enough" time on your therapy. 14 or more hours a week. Let's explore this some more.

For most people diagnosed early with PKU or a related disorder through neonatal screening and treated successfully for life, you are not disabled – this is the whole purpose of the therapy/diet, every day. And you, as an adult or your dependent child, are eligible because the DTC has a pathway called life-sustaining therapy. Time spent preventing disability qualifies you for this tax credit. So, in fact and in law, this is a federal tax credit to help prevent disability and to assist others who, unfortunately, have a physical or mental impairment.

We have created an information package to help you navigate the process, which includes tips on the 6 easy steps for a successful application. Since we launched this package and campaign in 2015, every person who has followed our advice has been approved, even if they were initially rejected. Let’s put it another way:

Our success rate is 100%, meaning we have directly helped over 150 families and adults living with PKU or Allied Disorders get approved!!!

This package is available ONLY to MEMBERS, i.e., those who hold an active membership.

The annual membership fee to CanPKU+ will be the best investment you can make this year and in the years to come when you see the upcoming tax refunds – and up to ten years back – that come from DTC approval. And approval for the DTC opens the door to other benefits and tax credits. We will send you this information and suggestions as soon as you notify us of your DTC approval.

What are you waiting for?

Am I eligible? I don’t believe I (or my child) am disabled. Following our clinic, we are "normal" people with a rare disease. Here’s a letter from a mom about her feelings on this matter. It’s direct. It may be hard.

It’s real. This will help explain why this is not a benefit for “just” those with a disorder, but those preventing one.

Letter from a mom regarding the (misnamed) disability tax credit.

How would someone know if they’ve already applied and succeeded?

Please check last year’s taxes, particularly line 31600. If this field is blank, you have work to do and probably money coming. If it contains a number – congratulations – you are already registered for the Disability Tax Credit!

What happens if I applied and didn’t succeed?

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

Not a member? Join now!

It all started when Nicole Pallone, Vice President of CanPKU+, applied on behalf of her daughter, Rosie. Here’s her story:

At one of our events last year, the father of a patient with MSUD asked me if I had applied for the DTC. “No,” I answered. I had heard of other PKU patients applying unsuccessfully, and I don’t have much time to waste in my life. I also admit I struggled with the idea of "labeling" Rosie as disabled.

Still, this dad had successfully applied and when he talked about the financial benefits… well frankly, I didn’t care about the label! So, he shared his application with me, which included a letter describing the condition and why the diet is an essential part of management. The letter, I believe, is key. Let’s face it, few CRA workers will be familiar with PKU, MSUD, or any other IEM unless they’ve been personally affected. And that little checkbox asking “Provide details on how you provide care” is not enough!

Long story short, we applied. Our clinic doctor was great at filling out the forms, I wrote a sincere explanatory letter, and we mailed it by the end of May. And we waited. And waited. And waited.

By the time I received a response in early August, I had almost forgotten about it. But here it was, in my hand: a letter stating that our application had been accepted! The letter stated that we could now claim the CIPH until Rosie turns 18, and a reevaluation of previous tax years would follow.

Then, a few weeks later, it happened: we suddenly had $3,000 more in our bank account! Cautiously optimistic, I called the CRA for an explanation. I learned it was an adjustment to our child tax benefit paid over the last three years. For previous years, we had to request a revision in writing. And the same would happen with our income tax – they would automatically reevaluate the last three years, but anything prior to that, we had to request in writing. So, we did.

The process was finally completed in December 2014. More than 6 months after submitting our application, everything had been reevaluated, and we received a huge $25,000 refund!

CanPKU+ immediately realized that we needed to help other Canadians make successful applications, and I’m excited 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, retroactive refunds will vary significantly based 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 the years to come.

And yes, adult patients must apply. It’s important to note that not all IEM patients will be eligible – those with high tolerances, whether due to Kuvan or not, will probably not meet the requirements. The key is to show that the eligible activities – doing blood tests, tracking phe intake, preparing and administering formula – take 14 hours or more per week. Preparing meals, shopping for food, attending appointments, and the hundreds of other things we spend time on with this condition are NOT eligible.

In the first year since launching our DTC information packages, we have distributed over 100 kits. Among those who reported back to us, about 50% were approved. We plan to work with the CRA to educate them about the disease and ensure that PKU applications are reviewed fairly and knowledgeably. You can help by sharing your feedback on your own experience by emailing us.