From: AlanBaggett@volcanomail.com   
      
   Canada Revenue Agency discriminates against PKU sufferers : CRA SOTW   
      
   By EvidenceNetwork.ca on September 4, 2017    
      
   The federal government routinely denies the Disability Tax Credit to those who   
   need it – and are eligible by law   
      
   This story began when I offered to represent the mother of a three-year-old   
   with PKU, a rare genetic disorder, in a federal tax court. She had never even   
   fought a parking ticket before she went against the federal government. We   
   won. It turns out,    
   evidence matters. But the story doesn’t end there.   
      
   We went to court because the Canada Revenue Agency (CRA) refused to meet with   
   the non-profit association I lead, Canadian PKU and Allied Disorders Inc., to   
   discuss the ways the CRA has systematically denied applicants with this rare   
   genetic condition the    
   Disability Tax Credit.   
      
   The Disability Tax Credit is a federal benefit worth $2,000 to $4,000 a year   
   for families affected by qualifying disabilities. And it’s the gateway to   
   the higher Child Tax Benefit and the Registered Disability Savings Program.   
      
   As father of a child with PKU, I know how critical the credit can be for   
   affected families. With proper supports and treatments, individuals with PKU   
   can thrive. My son is age 30, doing well, is a university graduate, living   
   independently, working as an    
   arborist with the training and goal to be a firefighter.   
      
   PKU stands for phenylketonuria. It’s a daily, lifelong threat to the brain.   
   Although there are fewer than 2,000 people with PKU in Canada, governments   
   ensure that every baby born across Canada is tested for PKU. Untreated or   
   poorly treated PKU leads to    
   intellectual disabilities and other complications. There’s no cure for PKU   
   but there are treatments.   
      
   PKU is a rare genetic (inherited) disorder where one gene produces a defective   
   enzyme in the human liver. The defective enzyme means a person can’t eat   
   protein without a serious risk of harm – no meat, cheese or milk, no breast   
   milk for a baby, no    
   legumes, nuts or soy, etc. This severe restriction is because the defective   
   enzyme can’t properly process one of the 20 amino acids that make up food   
   protein – in this case, the amino acid called phenylalanine (Phe). High Phe   
   levels are poison to the    
   brain.   
      
   The gene mutation and defective enzyme qualify as physical impairments towards   
   Disability Tax Credit eligibility.   
      
   The protein restriction in PKU is so severe that it’s incompatible with   
   life. However, PKU became treatable in the 1950s when a breakthrough made it   
   possible to make medical formulas with 19, but not the 20th, amino acid. These   
   formulas are synthetic    
   protein without Phe.   
      
   Manufacturers developed foods designed to be low in protein or low in Phe.   
   Governments pay for these medical formulas and foods as part of necessary   
   therapy. A person with PKU is prescribed a precise amount of Phe for growth   
   and development affecting    
   every cell in their body. Without that individually-calibrated amount of Phe,   
   they will die or be damaged.   
      
   So why does the government deny the Disability Tax Credit to many diagnosed   
   with PKU?   
      
   It seems the CRA doesn’t understand the difference between a conventional   
   diet and the complex PKU therapy, which includes frequent specialized blood   
   tests. The Income Tax Act states that “therapy” qualifies for the tax   
   credit, but “diet    
   restrictions” and “diet regimes” do not.   
      
   When the CRA lumps PKU therapy into “diet,” it’s unfair – and legally   
   wrong.   
      
   There is good news. A recent decision of the Tax Court of Canada overruled the   
   CRA and found as a matter of law that PKU medical therapy is nothing like a   
   conventional diet restriction or regime.   
      
   Those with PKU also fulfil the criteria for a Disability Tax Credit for   
   persons who “would be markedly restricted in activities of daily living but   
   for therapy.” These activities include mental activities.   
      
   So problem solved?   
      
   Not quite.   
      
   Unfortunately, the CRA still refuses to meet to discuss its systemic   
   discrimination against many people with PKU. And those on therapy to prevent   
   real harm are still being denied their legal right to a tax credit. The CRA   
   has until Oct. 1, 2017, to    
   appeal the judge’s decision.   
      
   As the judge commented in his decision, the CRA should “think hard” about   
   improving the wording of the Disability Tax Credit application and the online   
   explanatory guide to better deal with applicants – like those with PKU –   
   who would have marked    
   restrictions in everyday life “but for therapy.”   
      
   The CRA also needs to listen to the PKU community, rethink its approach and   
   consider PKU much like it considers diabetes, which typically qualifies for   
   this tax credit. Or we will face the CRA in court again.   
      
   There are at least five other PKU tax credit cases before the courts. I know   
   because I’m the agent representing them.   
      
   John Adams is an expert adviser with EvidenceNetwork.ca, a co-founder and   
   president of the Canadian PKU and Allied Disorders non-profit. A seasoned   
   management consultant, he has worked as a reporter for The Globe and Mail,   
   lead assistant to an Ontario    
   cabinet minister and was elected three times to Toronto city council.   
      
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   Miss a Tax Tale Miss a lot!    
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