"We are not just patients with medical needs. We are also citizens who have the right to be an integral part of our society!"
1980.06.02 Announcement
2001.11.21 Listing of rare diseases under the disabled classification
Before the 5th amendment of the Physical and Mental Disabled Citizens Protection Act, rare disease patients weren't protected by the law. Patients with physical and mental disability were categorized according to their disabled situations. However, it was extremely difficult for rare disease patients to fit into any particular category. For instance, patients with metabolic disorders couldn't be described as disabled, and could only be defined as "chromosome disorders." For patients of Multiple Sclerosis, their syndromes may vary each time the disease strikes them. Therefore, TFRD lobbied the government to include rare disease patients into the Physical and Mental Disable Protection Act, and furthermore, to establish a new category as "rare diseases." This way, patients of rare diseases, no matter what their syndromes and different disability situations are, they can all receive the same protection under this act, including financial assistance, social welfare services, medical care, rehabilitation, special education subsidies and so forth. Also, for future policy makers, they would have to take rare disease patients into serious consideration.
After long periods of lobbying and promotional efforts by the TFRD, in October of 2001, the "Disability Protection Act" finally covered people afflicted with rare diseases and thus unveiled a new era in the rights of rare disease patients. This highlighted the fact that patients are not only patients with medical needs, but more importantly they are citizens with the fundamental right to be an integral part our society!
Currently, with the confirmation from a medical doctor, those who have been adversely affected by a rare disease can receive the disability pamphlet specific to the level of their disability (extremely disabled, seriously disabled, disabled, mildly disabled), to use as proof to apply for relevant benefits.
Consequently, not only can rare disease patients receive medical support and protection through the Rare Disease Control and Orphan Drug Act and be free of barriers and injustices, they can also, as a result of the revised "Physically and Mentally Disabled Citizens Protection Act". Actively participate as a member of society in areas such as employment, education and long-term care. Subsidies are provided as follows:
Assistance for social insurance and insurance deductibles
Community care, family services, temporary care
Compulsory quota for hiring and its reward system
Discounts for leisure costs of the disabled and their companions
Discounts on transportation costs for the disabled and their companions
Early treatment and care for developmentally challenged disabled children
Employment promotion
Financial assistance for low-to-medium income families
Home schooling and scholarship for studying at social services organizations
Individualized professional services
Loan assistance for entrepreneurs
Medical rehabilitation therapy
Medical and hospital-stay cost assistance for low-to-medium income families
On the job training and subsidized training expenses
Promoting foster care and subsidizing costs
Protection of the rights of blind massage therapists
Quota for charitable lottery ticket vendors
Reduction and exemption of schooling costs at various school levels
Respite service for caregivers
Scholarship Assistance for study abroad: general or special talents
Social services
Special education
Special examination for disabled civil servants
Special parking space, rehabilitation buses
Subsidy and development of assisting equipment
Supportive employment services
Tax reduction and exemption, special income tax exclusion
Transportation services
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