Denied: Province Cuts Off Muscular Dystrophy Sufferer From a Special Diet Allowance

“I’m asking Dalton McGuinty to help me,” she says. But so far, there hasn’t been much from her Ottawa South MPP and Ontario premier.

By Hugh Adami, The Ottawa Citizen September 7, 2011  

Brandon McCarthy, 21, seen here at home with his mother Liliane Robinson, has Duchenne Muscular Dystrophy and weighs only 67 pounds. He was recently cut off from $250 his mother, Liliane, receives to provide him with a special diet. One of his doctors wrote the ministry of community and social services to protest, but the ministry still cut him off.

OTTAWA — What the Ontario government has done to Brandon McCarthy is thoughtless, shameful and cruel.

The 21-year-old Ottawa man has Duchenne muscular dystrophy, a degenerative disease of the muscles that has him confined to a wheelchair — with a host of other related ailments, including heart and respiratory problems. He weighs all of 30 kilograms and requires a special diet, high in nutrition and one that permits him to swallow without choking. He cannot afford to lose weight. His diet, much of it prepared by his mother, Liliane Robinson, keeps that in check.

He needs round-the-clock care from his mother, with whom he lives in a two-bedroom highrise apartment on Halifax Drive, off Walkley Road.

When he turned 18, Brian qualified for financial help from the Ontario Disability Support Program that included a modest allowance for living expenses and $250 to help pay for the diet.

But the Ministry of Community and Social Services decided — against the recommendations of its own panel of health professionals — that Brandon and other muscular dystrophy sufferers with weight-loss issues will no longer receive the allowance. Muscular Dystrophy Ontario and Nunavut says it has received numerous complaints from sufferers who have been cut off. “It is a huge concern,” says executive director Stacey Lintern. While not everyone with MD might need a special diet, she says the policy “can’t be black and white.”

Brandon’s monthly cheque arrived last week, minus the $250 allowance.

“Why is he not covered?” asks Liliane. “He’s 67 pounds. It doesn’t make sense. Brandon really needs this.”

Community and Social Services Minister Madelaine Meilleur was not available for comment.

After Liliane realized last spring that Brandon might lose the allowance, his doctor and a registered nurse at the Ottawa Hospital Rehabilitation Centre
co-signed a letter to the ministry.

“(Brandon) is dependent for all his care and is also vented,” wrote Dr. Nancy Dudek and nurse Anne Fortier. “His body weight is low (and) he requires a
high nutrient density diet to prevent deterioration of his already frail nutritional status which could effect his skin integrity and quality of life.”

The letter fell on deaf ears.

A ruling by the Ontario Human Rights Tribunal in early 2010 forced the province to pay additional retroactive and on-going benefits to three complainants,
whose medical conditions were not covered under the special diet program. Following the ruling, an internal memo from the Ministry of Community and Social Services suggested the government was going to scrap the program to save money. Instead, changes were made in which “some medical conditions” would no longer qualify for a special diet allowance, “while other conditions might be eligible for a larger allowance.” The revamped program lists 14 diseases that are eligible for the allowance, including anorexia nervosa, cirrhosis, congestive heart failure, cystic fibrosis, HIV/AIDS and multiple sclerosis.

But Cynthia Wilkey, staff lawyer for the Income Security Advocacy Centre and a legal counsel at the tribunal hearing, says the government ignored what it had been told a few years earlier by its own experts, who recommended that weight-loss illnesses such as MD and others be eligible for special diet allowances.

A few of the diseases were picked at random to be on the list, she says, but others such as MD were left off. Wilkey suggested that Brandon may have been receiving the money under an old policy that included weight loss. That policy was changed in 2005 to specify by disease only. MD was not on that list
then either, but a public backlash forced the government to look at the issue further. Recommendations were made in 2008, but not implemented. Another
run was taken to revamp the policy following the tribunal’s 2010 ruling, and the changes came into effect this spring.

Not having the allowance will hurt, but Liliane says she will find the money to pay for her son’s dietary needs. At this point, it’s all about Brandon’s
quality of life, she says.

Liliane is a single mother who worked for the City of Ottawa until the mid-1990s when Brandon was diagnosed with the disease. He was five. Two years earlier, her daughter, Candice, then seven, was diagnosed with diabetes. Candice lives on her own. Liliane went on stress leave following Brandon’s diagnosis and now receives some income from the city’s health-insurance plan as well as some Canada Pension benefits.

Brandon appears to be a well-adjusted young man who is coping well despite the rapid ravages of the disease and his life expectancy, usually the mid-20s.

His condition forced him to quit school during Grade 10 — “I was getting too tired. There was no point. I just want to live.” He manages to stay as active
as possible, going for “walks,” shopping or to movies with his mom. He also spends time on his computer, playing his favourite video games.

Sleeping is a problem. He suffers from sleep apnea, a respiratory disorder characterized by abnormal pauses in breathing. Liliane says an afternoon nap for her is usually the longest sleep she gets day or night.

“I’m asking Dalton McGuinty to help me,” she says. But so far, there hasn’t been much from her Ottawa South MPP and Ontario premier. His constituency office suggested she start a petition and have it presented to the legislature by an MP who isn’t the premier or a cabinet minister — as rules require.

Meilleur’s ministry says she or senior bureaucrats cannot interfere with government policy to have Brandon’s allowance reinstated. Unless his ODSP caseworker can work magic, the next step is an appeal to the province’s Social Benefits Tribunal.

Ministry spokeswoman Sandy Mangat says a review of social assistance programs will revisit the special diet allowance again “to see where the gaps are … and how we can improve the system as a whole.”

In Brandon’s case, the ministry only has to look into McGuinty’s backyard.

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