Aged Parents, Aging Children--The Challenge for the Families of the Intellectually Impaired

In an old apartment building in a small alleyway somewhere in New Taipei City, the sun slanting in through the open front door is the only light in a dark and narrow living room. The family of 85-year-old Mr. Gu sits in front of the television set, and the laughter and chatter coming from the TV contrasts sharply against the silence of the family members.

Mr. Gu is one of the old veterans who came to Taiwan in 1949 as part of the Nationalist army fleeing the Communist victory in mainland China. Thirty-three years ago he married a woman who was moderately intellectually impaired, and the four children they gave birth to ranged from moderately to profoundly mentally handicapped. All four children also are victims of cerebral palsy. Over time they have virtually lost any ability to speak or take care of themselves, and even walking has become a trial.

The only economic supports the family has are government subsidies for the elderly and for low-income families with mentally challenged children. Each day Mr. and Mrs. Gu make three simple meals, after which Mrs. Gu, who is 51, washes the children. All their remaining time is spent sitting together as a family watching TV. Day follows day, and they grow older and older along with their dark and silent house.

Old Mr. Gu, speaking with a thick accent from his native Guangdong, tells us this story: Last year he went out on his bike to go to the grocery store and took along his 30-year-old eldest son "Ah Qiang" (a pseudonym). But when he just turned his back for a moment, Ah Qiang disappeared. In a panic, Mr. Gu looked everywhere until his legs were aching. Finally, after two days of non-stop searching, he finally found Ah Qiang in a nearby bus terminal.

A social worker who is present asks old Mr. Gu if he has ever considered sending his wife and children to a home for the handicapped. He shakes his head continually as he listens: "Whatever you might say, they are still my own children, and as long as we can all be together safe and sound, that's all that matters." For him, despite having never heard his children utter the word "Dad," they are after all flesh and blood, and there is a link of parent-child love that can never be severed.

As soon as this young man sees the visiting social worker, he rushes forward to show his affection. Intellectually challenged people also need companionship and love.

According to the Ministry of the Interior, there are about 150,000 intellectually impaired persons in Taiwan at the present time. About 29,000, roughly one in five, are aged 45 or above. Moreover, this figure is rising every year.

Medical studies show that intellectually impaired people, because of innate factors, are highly susceptible to cerebral palsy, epilepsy, psychological problems, and other illnesses. Such diseases cause their biological functions to deteriorate, and they decline about 20 years faster than the average individual. The conclusion is that they can be considered "elderly" at age 45, and in fact caregivers generally begin systematically watching for symptoms of aging as early as 35.

"So what you have," explains Liu Jia-chi, vice director of the Parents' Association for Persons with Intellectual Disabil-ity (PAPID), "is a person who is mentally a five-year-old child, living in a 45-year-old body, but with the physical functioning-or dysfunction-of a 65-year-old."

Since the parents of these prematurely aging intellectually impaired children are usually themselves in their 70s, the result is "double-elderly" households.

Migo Chen, a social worker at The First Social Welfare Foundation, points out that these seventysomething parents are mainly "old school" in their attitudes, and mostly believe that a mentally handicapped child is a problem that should be handled behind closed doors, strictly within the family. This attitude is only aggravated by the lack of understanding they receive from outsiders who look at them askance. Thus these parents, who may well be illiterate or poorly informed to start with, are not very motivated to seek help from the community. As a result many "double-elderly" households just grit their teeth and bear it, struggling along on their own.

According to a study by Wang Kuo-yu of the Department of Social Welfare at National Chung Cheng University, 93% of adult intellectually impaired people live at home, dependent on their parents and relatives. Only 7% live in institutions. The study adds that, considering that it takes about 15.77 man-hours per day to take care of a moderately mentally disabled person, after deducting sleeping hours this means that at least one member of the family must be with the disabled person at virtually all times, without any break or rest.

Liu Jia-chi says that many parents look after their children very well yet ignore their own health. Then eventually they are afflicted by old age and illness, and can no longer carry this "burden of love." Yet still there is no end to caring for the afflicted child, and they don't want to cause trouble for their other children, so all they can do is scrape by one day at a time worried that the worst might happen at any moment.

Households with intellectually impaired full-grown or middle-aged children urgently need suitable residential services for the mentally challenged. Only then can the parents gain peace of mind and their sons and daughters find a reason to smile.

Five years ago, PAPID launched a program of "planning and support services for families with aging intellectually impaired persons." They began fundraising and gathered together 33 related social welfare organizations, such as the Lan-chui Social Welfare Foundation in Yilan and the Sacred Heart Home in Chiayi, to collectively focus on the problem of families with full-grown or middle-aged intellectually impaired children. Thus far they have visited and provided service to over 1000 such households.

Liu explains that the problems faced by such households only become more complex and severe as the family members age, and the services her group provides must encompass medical care, home care, economic security, planning for the future, and quality of life. For example, take the case of a family in which an intellectually impaired adult has taken a foreign bride through an arranged marriage. When this couple has their own children, who will raise them? Won't it all be left up to the grandparents to really raise and educate the third generation? Obviously different kinds of households will produce greatly varying needs for assistance.

Therefore services must be "tailored" by each social worker to fit each household. Social workers must seek out and bring in the appropriate support re-sources from outside providers, including: applying for government subsidies and, in the event of emergencies, placement in shelters; hiring and providing guidance to home care professionals; getting identity bracelets attached in case the person goes missing, and arranging links to emergency rescue services; getting meals delivered daily; finding professional legal advice, and more. Social workers may also be called upon to accompany family members to visit doctors or go to the hospital, to provide professional emotional support, and to assist the family to make concrete plans for the future.

This 85-year-old man has been struggling alone for many years to raise his mentally challenged children. Now he really needs help from outside.

Intellectually impaired adults need professional care, so the severe shortage of care institutions in Taiwan poses a major challenge for "double-elderly" families.

Ruirui (a pseudonym), 48 this year, was diagnosed with Down syndrome at birth. After The First Social Welfare Foundation (TFSWF) was founded 30 years ago with the purpose of educating and training the severely mentally disabled, Rui-rui was brought under the guidance of the teachers of the foundation, and he learned how to cope with his daily needs on his own and get to school and back by himself. He even progressed so much in the foundation's food-preparation class that he was able to cook on his own.

But as he got older, not only did his reaction times and physical strength sharply decline, he became unable to maintain his balance and often fell down, eventually requiring a wheelchair to get around. Since Rui-rui's mother died -seven years ago, only his 80-year-old father is left on his own to look after his every need and stay by his side 24/7.

Last May, Rui-rui moved into the Xiang-shan Group Home, an institution founded by TFSWF. During the day, he gets training in practical skills for daily living at the TFSWF's Yung-Ai Development Center, while after 4 p.m. he stays in the group home, and his dad takes him home on the weekends.

While its services were initially focused mainly on therapy for children, TFSWF has adjusted its mission in light of the aging of its patients into adults and the special needs of families with intellectually impaired adults. Several years ago, seeing as their initial facility, The First Children's Development Center, was aging, cramped, and not fully accessible for the disabled, they decided to begin raising funds to construct a new complex. This new building, The First Family Gardens, located on -Xinyi Road Section 5, which was completed and formally opened in 2009, houses The First Children's Development Center on floors one and two, the Feng-qiao and Xiang-shan group homes on floors three and four, the Yung-Ai Development Center for adults on floors five and six, and The First Assistive Technology and Research Center on floor seven.

Anyone over 15 who is moderately, severely, or extremely severely intellectually impaired can register on the waiting list for a spot. The price for the daytime development center is NT$14,700 per month, while it costs NT$9800 per month to stay at the group home. However, fees can be discounted by up to 100% depending upon the household income and severity of disability of the individual case. Right now the Xiang-shan Group Home houses 18 persons, with an average of about one teacher/caregiver per four residents at any given time.

In addition to TFSWF, there are 30 social welfare organizations in Taiwan that provide "community living" services, such as the Syin-Lu Social Welfare Foundation, the St. Joseph Social Welfare Foundation, and the St. Theresa Opportunity Center.

TFSWF director Denise Lai relates that the Xiang-shan Group Home is divided into three smaller "family" units, each having its own living room and two or three bedrooms. This allows the residents to learn basic living skills in an environment that closely approximates an ordinary home, and, supervised and accompanied 24 hours a day by professional staff, to enjoy adequate care and all the warmth and comforts of a family setting.

However, not everyone can be as lucky as Rui-rui. There is a long waiting list of parents who are frantically hoping to get their child admitted, and the supply of beds cannot meet demand. At present there are 279 care-giving institutions in Taiwan, and these can take in only about one in 10 of the mentally handicapped. And it is even harder to find space for older persons, who require more money for medical costs and more manpower to care for them, so not all institutions are willing to accept them.

After dinner, each takes care of his or her chores-washing dishes, wiping the table.... Residing in a group home helps the intellectually impaired to learn practical skills for daily living.

In the densely populated Taipei metropolitan area, for example, there are about 40,000 intellectually impaired persons, the most in the country. But the geographic distribution of care institutions is out of balance, so the waiting lists for ones in Taipei are gigantic, and there is only the remotest hope of admission. Though middle-aged intellectually impaired children could be sent to institutions in central or southern Taiwan, this is not an especially appealing option considering that the best medical resources are in Taipei and elderly parents will have difficulty traveling to visit their children.

Denise Lai notes that in wealthier places, like Western Europe, Japan, and the US, there was already a trend well underway by the late 1990s to close large facilities and replace them with more geographically dispersed small family-style institutions more suitable to providing residential services. This is exactly what "double-elderly" families in Taiwan so urgently need. However, it will not be easy to meet this demand by relying only on private social welfare organizations to raise money, buy land, and build facilities. She urges the government to face up to this need and provide buildings, funding, or other support.

Lai points to the example of Hong Kong. Although there is no system there of issuing official documents that establish "handicapped" status, and the mentally handicapped and their families must take the initiative to register with government agencies and seek mediation in finding services and resources, the government nonetheless evaluates the demand in the city's different districts and gets an early start constructing care facilities, taking into account the numbers of persons who need care and balance among the districts.

Another problem in Taiwan is that by law, the teachers in care-giving institutions must meet strict licensing requirements. They must be graduates of at least junior college with degrees in healthcare, social work, education, or related fields. However, because of the difficulty of caring for middle-aged intellectually impaired persons, few such professionals elect to go into this line of work, making recruitment of staff a major problem even for the too few facilities that do exist.

Lai suggests following the Japanese model, under which the government has established training courses for caregivers. Even persons without advanced diplomas may be certified as caregivers, if they complete the required number of hours and pass the exam. Creation of such a certification system lowers the barriers to entry and allows persons willing to look after the intellectually challenged to more easily contribute to the system.

Group homes devote a lot of attention to a healthy routine. Sleeping hours are fixed, there is regular exercise, and the caregivers even help with teeth-cleaning. These routines can slow deterioration in the person's condition and prevent some adult health complications like high blood pressure.

When amendments to the Public Assistance Act take effect in July of 2011, the method for calculating the minimum cost of living will be altered and a definition of "middle-to-low-income household" will come into existence. The amendments will also raise the poverty line from NT$9829 to NT$10,244 per month, which is expected to make an additional 540,000 people in Taiwan eligible for benefits.

This is good news as far as it goes, but Migo Chen, a social worker for TFSWF who is on the front lines of serving disadvantaged households, notes that applying for benefits, as the current system requires, is not as easy it may seem. She explains that it is quite common that people who have lived all their lives in economic poverty also suffer from information poverty, and they understand little about what help is available, eligibility, where to go, what the rules are, or how to apply. Even when they do know what kinds of help to seek, they have great trouble navigating the current highly complex application process, which requires a lot of documents, and there are numerous barriers to overcome.

It also sometimes happens that even the ward chiefs, whose job it is to approve and forward initial applications for status as eligible households, don't really understand the rules very well and just refuse people because they don't want to be bothered to deal with the problem, leaving the applying household convinced that they don't qualify for assistance. After being refused once, they feel defeated, and are deterred from ever initiating the process again. These are the people we see on the streets as trash scavengers or other marginal workers, living hand to mouth. Chen would prefer a system in which the government takes the initiative to identify needy households and provide resources to them.

Liu Jia-chi adds that Taiwan has long operated with welfare for the handicapped, the elderly, and children with special educational needs handled separately, and lacks "seamless services." Even worse, the government has long neglected to deal with the family as the unit of signifance for cases of physically or mentally disabled people, drawing a bureaucratic distinction between those who give care and those who receive it.

Are NGOs a viable alternative to government? In the five years that PAPID has been promoting its program of long-term services to households, many of the families have been initially skeptical: "Will you come back again after the Chinese New Year?" This is because many social welfare organizations are able to provide only short-term programs, and once their government subsidies run out for that year, the organization and its promises vanish like clouds of smoke into thin air. PAPID, Liu says, is an exception, because it can rely on donations from the private sector and individuals, so it is able to stand side by side with these households through all their struggles, really creating an opportunity for them to turn their lives around.

However that may be, Liu also emphasizes that whereas there are about 30,000 "double-elderly" households in Taiwan, right now PAPID can only provide aid to 1000 or so, which is just the tip of the iceberg. What is needed is for this issue to get enough visibility to command the attention of the government and the general public.

In recent years, to ensure that the families of intellectually impaired persons can rest easy in both body and mind, PAPID has established 60 "At-Ease Associations" all around the country. These offer information to families about caregiving and making plans for the future. Temporary daycare services are offered during the meetings so that the parents have the time to really take in the information, while the disabled children can make new friends and add some activity to their lives, allowing everyone to widen their social networks.

Thus far TFSWF has established three group homes (Xiang-shan, Feng-qiao, and San-xing) and has taken in 100 mentally challenged persons. They hope to add two more group homes over the next five years and increase their capacity by 60. About 60% of their budget currently comes from government subsidies and fees charged to the families of residents, while fundraising activities (like baking or housekeeping services) account for another 20% and donations a further 20%. They estimate that even if the funding exists for the buildings and the staff of the new homes are in place, they will still need to raise NT$5-6 million a year for operating expenses. The bottom line is that they will really need to tap into charity from society at large.

As Ruirui's father talks about how he raised his son, at times there is a sense of pride and satisfaction in his voice, at others a sense of frustration. He says, "But no matter what, this is my child that Heaven has given me!" As he talks, his eyes fill with tears....

Each and every child is irreplaceable in the eyes of their parents. The families of intellectually impaired persons have very modest aspirations, and it only seems fair that they should not be left to struggle all alone to attain them. But only if government and social resources can be linked together and brought into play can we have a homeland in which all are cared for right up to their very last breath.