Article 19 Independent Living and Integration in Society
Support Services Distant, Burden Continues to Fall on Individuals and Families (in response to Paragraphs 130 to 132 of the State Report)
: Even though our “People with Disabilities Rights and Protection Act” clearly states that PWDs should receive various support services to promote independent living, However, there are no mechanism to involve and consult PWDs as to their specific needs. This results in service options being unsuited to practical subsistence needs or overly stringent criteria for qualification that cause difficulties for PWDs to access needed resources and underutilize services.
In 2009, almost 80% of PWDs didn’t know that government provided personal care services and family support services. For those who used the services, the most popular was ‘home care services’, accounting for 4.43% of PWDs, followed by ‘daytime and residential care’ services, accounting for 2.01%. Only 0.7% of the PWDs utilized ‘independent living support services’ offered by the government. According to another set of data from the Ministry of Labor compiled in 2015, Taiwan has 208,600 family caregivers whom families and individuals pay out-of-pocket, which implies that roughly the same number of PWDs are unable to receive Government support. In addition, as the Ministry of Health and Welfare replied our letter of inquiry, there are only 370 PWDs who are using personal assistant service in the year of 2016, a number that is less than 0.03% of the population of PWDs. Support that PWDs require continued to fall on individuals or families, while support from the government in providing services remains low.6
PWDs who currently live in their “residential homes” stand at 92.84 percent, those who live in “educational and care facilities” account for 6.82 percent. According to studies 69.56 percent of PWDs who live in stay-in facilities do so because family and relations are “unable to provide care,” while 7.96 percent do so were under “Government arrangements.” Neither group chose their living arrangements voluntarily. In recent years, incidents of caregivers committing suicide, or caregiver killing or starving to death the person under their care due to family burdens or excessive pressure from caregiving occurs once every three months on average. These violate Paragraph 3, Section 2 in Article 28 of the Convention.
Restrictions on Application Eligibility: Those who wish to apply for government support face eligibility restrictions that include the location of registered residency, family assets and income conditions. If PWDs employ foreign caregivers out-of-pocket, they are prohibited from applying for residential services. In particular, limitations in the design of need assessment tools often exclude PWDs with psychological disabilities, the vision impaired, and intellectually disabled from opportunities to access residential services, personal assistant services, and other personnel support services.
Limitations in Service Content: Most assistive devices are expensive and Government-provided personnel services have many restrictions attached, making support for truly independent living by PWDs in the community difficult. For example, financial assistance for Government-approved personal assistants are too low, while sign language translation services are only open to application through specially designated programs. Such conditions make it hard to meet the varied needs coming from different aspects of routine daily life. Residential services do not include assistance to PWDs for bathing, application of medicine, food preparation, and other basic daily needs. To facilitate vacation-time and avoid complications, service agencies are often unwilling to arrange service personnel shifts at night and during state-designated public holidays. The Government has yet to exercise its proper responsibility for oversight and willfully ignores the situation. Moreover, given that existing rules stipulate that pay for such services during nights and public holidays must double, PWDs are often forced to drop service instead.
Recommendations
Since the Government initiated the “independent living support service” for PWD, statistics regarding its implementation, such as the budget used and the number of people served, are dispersed among the local offices of social welfare. According to professor Chou Yueh-Ching and the survey by the Peace Foundation, only 0.025% of PWD are in use of personal assistant in Taiwan. The Ministry of Health and Welfare should collect and release the official statistics as soon as possible and show the rate of PWD utilizing the support services.
When the government establishes services for PWDs, it should consistently ensure that processes are open and transparent and have PWDs with different conditions participate in discussions. PWDs with different conditions should make up more than half of the persons involved in discussions. This should apply at the policy formulation, standard setting for applicant need assessments, and discussions about the content of different assistance programs. There should also be effective monitoring mechanisms to ensure service quality.7
Services should widen eligibility criteria: Firstly, household registration restrictions should be abolished. The location of residency registration should not be a reason PWDs face exclusion from the right to apply for services. Secondly, since PWDs are often among the most economically vulnerable in society, any review of financial assistance for different services should be based on separate assessments of the assets and incomes of adult PWDs, as well as the size of their households. Please see Article 28, Paragraph 229. Fees for services should have a ceiling set at a reasonable out-of-pocket amount to avoid situations where PWDs with more serious conditions are made to pay a higher proportion of fees out-of-pocket, leading to unequal treatment based on disability. Thirdly, the eligibility criteria and financial assistance standards when applying for personal assistant should be amended to include persons with mental disabilities who also require such services.
The Government should not contribute to the exploitation of migrant labor as a means to shirk the responsibility for care: The Taiwan Government imports large numbers of foreign caregivers who work long hours with low compensation to resolve the high demand for caregiving. This shifts responsibility to individuals and families. Applicants for service must also personally bear the costs and risks associated with a foreign caregiver. Recent years have seen numerous incidents of foreign caregivers being put under virtual house arrest, beaten, verbally abused, and sexually assaulted. This year, the case of an Indonesian caregiver being put under virtual house arrest for fourteen years emerged. Ill-treatment of migrant workers is becoming an increasingly serious problem. The Government should abolish restrictions that prevent PWDs with foreign caregivers from applying for residential services, establish a comprehensive service for dispatching residential services, and create a labor oversight mechanism in light of migrant labor policies. This can help prevent migrant workers from being exploited by agents and experiencing abuse of their human rights.8
Unstable Financial Status of Care and Support Services: The Taiwan government refuses to comprehensively adjust redistribution policies, and instead rely on returns from tobacco tax and the charity lottery to fund long-term care and personal assistant services. This creates instability in revenue streams. Users are also unable to successfully apply for adequate services given the lack of resources. The Government should establish a fair taxation system to reduce the wealth divide and increase Government revenues. Personal assistant services and other activities that support community life should be formally incorporated into the Government’s official budget.
Common living environment full of barriers and segregation, government social housing should further promote community integration (in response to Paragraphs 133-5 of the State Report)
General home conditions: For PWDs currently living at home, most live in “detached houses without elevators” (51.88%), followed by “residential complexes without elevators” (17.67%). Persons with limited mobility find it difficult to go out, and may be trapped at home for decades, unable to go to school or find work.9 However, PWDs who wish to apply for financial assistance for barrier-free access to their homes often meet opposition from inadequately informed members of the community and landlords. See Paragraph 70, Article 9 on Barrier-Free Access.
Government-run public housing: The proportion of Government-provided public housing is inadequate, rentals are high, and locations out of the way. There are many barriers and obstacles in these housing units and their surroundings, which make them unfavorable to PWDs.
Recommendations to the Government:
To fully implement Articles 53 and 54 of the “Housing Act” to ensure equal rights to housing for PWDs, the Government should amend related rules and regulations or approaches to managing financial assistance in order to protect the rights of PWDs to live in a community.
Housing support: Rent for social housing should not exceed one-third of the monthly incomes of PWDs, while the out-of-pocket payment for rental housing should not exceed the monthly income of a family with PWDs by more than a third. Government financial assistance should make up the difference. Housing support should include the Government becoming a mediator between and supporter for landlords and PWDs.
Social housing: The Government should consider the construction of social housing as part of urban renewal programs to increase social housing to above 5 percent of the overall housing stock. Social housing should be situated in locations accessible by public transport and adopt common design, and be mixed use to promote social integration and avoid stigmatization, labeling, or antagonism among groups.
Community planning: The overall planning of a community should include comprehensive barrier-free facilities, transportation, and include possibilities for the upgrade of community services. Planning should also include facilities, services, and management means necessary for persons with psychological and social disabilities to integrate into the community.
The Government should plan for concrete timetables and methods to promote de-institutionalization and toward a community service-based approach: There is an increased reliance on institutional services to care for PWDs in Taiwan. PWDs suffer forced control in institutional settings, and may be tied to their beds or wheelchairs, causing them to lose freedom and dignity. There have even been many cases of abuse in recent years. Taking the Taipei City Municipal Yangming Retirement Home as an example, studies by scholars such as Chou Yueh-Ching show that it cared for 357 persons with intellectual disabilities and has a budget that reached NT 299 million in 2016. A rough averaging puts spending per person per year at NT 840,000. However, the investment of Government resources does not focus on community service-based approaches, violating the spirit of independent living emphasized in the Convention.
Other personnel support services
Insufficient personnel (special education assistants) to support students with disabilities in school, see Article 24, Paragraph 181 of this Report.
PWDs face difficulties in receiving personnel support during medical treatment, see Article 25, Paragraph 190-192.
- 2009 Demands Assessment Survey for PWDs，p. 160，Table 5-62。
- 2016 Study by the Peace Foundation; Chou Yueh-Ching, “Difficult for Persons with Disabilities to Live with Dignity in Communities,” June 7, 2017.
- “Caretakers’ Shattered Dreams! Under House Arrest for 14 Years, Migrant Worker Toils Days and Nights,” TVBS, February 2017.
- 2011 Ministry of Health and Welfare Assessment and Study Report on the Living Conditions and Various Needs of Persons with Disability.