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People with Disabilities Rights Protection Act
People with Disabilities Rights Protection Act

Physically and Mentally Disabled Citizens Protection Act 
"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.    

ICF Disability Evaluation - Continue to follow-up

  The amended disability evaluation was implemented in 2012. Under the amendment, holders of permanent disability identifications need to obtain the new identification between July 2015 and 2019. In order to assist patients to have better understanding of the amendment and to protect their rights, TFRD hosted three ICF Disability Evaluation Seminars for Rare Disorders on June 28th in Taipei in 2014, May 24th in Taichung and June 6th in Kaohsiung in 2015. Besides explaining the information and documentation required for the new disability identification, the seminars also introduced the subsidy and resources available in each county and city.

Convention on the Rights of Persons with Disabilities—Reviewing the laws and making changes
In order to protect the equal opportunities for persons with disabilities to participate in society, politics, economics, culture, etc., the Enforcement Act of the Convention on the Rights of Persons with Disabilities was publicized and implemented in December 2014. Under Article 6 of the Act, a committee for the promotion of the benefits of persons with disabilities was established under the Executive Yuan. The committee has drafted “Plan for implementing the Convention on the Rights of Persons with Disabilities” and held regular meetings to review potential violations of the CRPD in laws and regulations.
The founder of TFRD, Serena Wu, was invited to be a member of the committee due to her contributions to rare disorders and disadvantaged patients. The CRPD raised the rights from basic needs to the level of defending self-dignity. Persons with disabilities should have the same rights as normal persons. The committee demanded the government to adjust social structures and recognizing patients’ rights. During the committee’s meetings, TFRD actively participated in the reviews of laws and regulations and drew attentions to the challenges faced by patients. Together, the advocacy groups and TFRD spoke out for the persons with disabilities.
Lobbying is a challenging and time-consuming job. The accomplishments could not be done or demonstrated in a short time. But if we work together to advocate for the rights for patients, we can make step-by-step changes to our life and society.