Many thalidomide survivors find accessing medical fund stressful, ‘degrading,’ report finds. Despite the financial support provided by the government to ameliorate the negligence that led to their disabilities, survivors often face a grueling process to access these funds, riddled with bureaucratic red tape and demeaning scrutiny of their personal medical histories. This article delves into the struggles faced by these survivors in accessing the support they deserve, and contrasts the Canadian approach with that followed in Scotland.
Contrasting Experiences of Thalidomide Survivors in Canada and Scotland
David Fullerton, a thalidomide survivor from Scotland, receives an annual health grant of about $20,000 from the government as compensation for the negligence that caused his disability. Born with a shortened arm and malformed hands after his mother was prescribed thalidomide during her pregnancy, Fullerton can spend the grant on whatever he deems necessary for his health and well-being, including personal training, regular massages, and singing lessons. Fullerton appreciates this approach, stating, “It’s a dignified situation. We deserve not to be told what to do by the system that failed us.”
However, the experience of Lee Ann Dalling, a thalidomide survivor in New Glasgow, Nova Scotia, contrasts starkly. Dalling, who has severely shortened legs, no hip sockets, malformed knees, and misshapen thumbs, has to fill out pages of paperwork to claim money from Canada’s version of the medical fund. This often leads to appeals as the rules are constantly changing, compounding the stress and difficulty of her situation. Dalling finds having to justify her needs “degrading and humiliating.”
Canadian Support Program for Thalidomide Survivors
In 2014, the Canadian government announced a support program to help thalidomide survivors “receive the care they need to live the rest of their lives with dignity.” This included a lump-sum payment, annual pensions, and access to a health fund. As of December, 133 survivors receive support through the program, with roughly half at the highest level of disability. However, a five-year review of the program found that many survivors found accessing money from the medical fund stressful and “degrading” – even as age and worsening health issues were increasing care needs.
Meanwhile, nearly three dozen Canadians potentially affected by thalidomide have been waiting, in some cases for years, for a final decision on whether they qualify for the program. The application process often takes between three and six years, a delay deemed “unreasonable” by David Rosenfeld, the lawyer representing these survivors.
Legal Battles for Fair Compensation
Six survivors, including Dalling, have filed a Charter claim against Ottawa, seeking additional compensation and more autonomy for survivors to use the funds as they choose. In recent years, the costs paid to the private company overseeing the program have increased dramatically – while survivors argue that giving them more self-determination over the funds could reduce these costs.
Challenges in Accessing the Medical Fund
To access the medical fund, survivors have had to get witness signatures and agree to quality control visits – measures that a Health Canada spokesperson said exist as a “safeguard” to protect survivors from fraud. However, Dalling argues that these measures perpetuate a pattern of survivors being treated as if they are unable to make their own decisions.
In British Columbia, thalidomide survivor Alexandra Niblock shares Dalling’s sentiments, stating that filling out the paperwork needed to apply for medical funds is an exhausting and humiliating process. Niblock and others suggest that the government could divide the medical fund into annual amounts paid to survivors, based on disability, to be used at their discretion – a system similar to the one followed in Britain.
Conclusion
While the Canadian government’s support program for thalidomide survivors is a step in the right direction, many survivors feel it falls short of providing the comprehensive care and dignity they deserve. The bureaucratic red tape and the demeaning scrutiny of their personal medical histories add to their stress and difficulty, making it an area that urgently needs reform.
