While life expectancy for people with disabilities is below average, progress in advanced healthcare is giving parents more time with their children with disabilities. However, they face a double challenge as elderly caregivers.
More than 1.23 million people in Taiwan have disabilities and more than 60 percent of their caregivers are 55 or older, Ministry of Health and Welfare data showed.
The government defines “double-aging family with people with disabilities” as a family structure where there is a person aged 35 or older with a disability, with their parents being the main caregivers and aged 60 or older.
Photo courtesy of the Yu-Cheng Social Welfare Foundation
Two situations that highlight the issue of “double aging” involve families with children with Down syndrome.
Seventy-four-year-old Lai Kuang-lan (賴光蘭) has a son with Down syndrome. As she often has lower back pain, she can no longer crouch down to help bathe her son, who is 45, Lai said.
Her 96-year-old mother is looked after by a migrant caregiver in Yilan County, Lai said.
When her mother had a high fever from urethritis, Lai had to travel from Taipei to Yilan and back in one day to handle the complicated procedure of administering medicine to her mother, she said.
While friends and family had offered to help, she said it is a growing concern to deal with medical emergencies with her mother, her son’s disability and her own issues from aging.
A 79-year-old mother has a 54-year-old daughter nicknamed Hsiao-ling (小玲), who has Down syndrome.
Hsiao-ling graduated from a vocational program at a special-education school, but her mother said she is worried about letting Hsiao-ling live independently, so has kept her by her side.
Hsiao-ling’s father died a few years ago after developing dementia and Hsiao-ling’s mother did not want her to become a burden for Hsiao-ling’s brother’s family, so she cares for her on her own.
However, she is feeling weaker and less capable of taking care of Hsiao-ling as she ages, the mother said.
“Double-aging family with people with disabilities” often face economic problems, too, Lai said.
Her family worries about the cost of living when the son is old, she said, adding that they are considering setting up a trust fund for him.
Lai, who established and is director of the Yu-Cheng Social Welfare Foundation, said that it has held seminars on the issue.
Groups from Japan and Singapore invited by the foundation have shared their experience, such as having an external oversight unit manage the parents’ properties that would be inherited by the child, to protect their rights and prevent them from being scammed, she said.
Such issues are likely to become more common in Taiwan.
The number of people with disabilities has increased to more than 1.23 million last year from more than 1.19 million in 2022, ministry data showed.
The most common disabilities include disease and illness, at about 63 percent, and congenital factors (about 13 percent), with other causes including accidents, traffic incidents and occupational injuries.
People with moderate or severe disabilities account for more than 60 percent of the total, the data showed.
Nearly 80 percent of people with disabilities are 45 or older, they showed.
A ministry survey on living conditions and needs of people with disabilities showed that 57 percent needed assistance in their daily lives, while nearly 70 percent were taken care of by family members.
However, about 32 percent of family caregivers were 65 or older and 62 percent were 55 or older, the survey showed.
Social and Family Affairs Administration Deputy Director Chang Mei-mei (張美美) said that the government has for many years promoted support centers in local communities for people who care for family members with disabilities.
Considering the needs of a super-aged society, the agency began promoting integrated support centers for long-term caregivers and family caregivers of people with disabilities last year, Chang said.
The centers provide respite care services and short-term care services, allowing family caregivers to relieve some of the pressure from long-term caregiving.
The ministry said that it has issued guidelines for planning for double-aging families, and it encourages caregivers to plan ahead for the care of people with disabilities.
The care services operate independently, but the government’s Long-Term Care 3.0 program, which is scheduled to be launched next year, would break down the boundaries between the systems, allowing elderly people and people with disabilities to live together in local communities, Chang said.
Those with special care needs would be allowed to choose a subsidy plan after an evaluation to ensure their rights, she added.
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