The Pitfalls of Home Care Assessment

The Barthel Index was developed in 1965 by the American physical therapist D.W. Barthel, and is used throughout the international medical community to evaluate 10 items that measure a person's daily functioning. The items include feeding, moving about, grooming, transferring to and from a toilet, bathing, and dressing. Examinees are scored on a 100-point scale, with higher scores indicating a greater ability to function independently. A score of 20 or below indicates total dependence, while 21 to 60 indicates severe dependence.

In the 19 years since the government began allowing the hiring of foreign workers to provide home care in Taiwan, eligibility rules for such hiring have gotten tighter as the number foreign hires has risen.

Fig. 2: Projected numbers of functionally impaired persons over 40 in Taiwan, 2011-2026

There were close to 100,000 foreign care-givers in Taiwan in the year 2000, but their number has since risen to 180,000. Reports of working illegally or doing overtime beyond the legal limit are not uncommon. Tsai Meng-liang, director of the Foreign Workers Administration Division under the Council of Labor Affairs (CLA), acknowledges that "the public feels that the government is not administering the market for foreign labor very well, and that the foreigners are making it more difficult for unemployed locals, who tend to be older, to get jobs." Tsai adds that after joint deliberations by the CLA and the DOH, the two agencies decided in 2000 to adopt the Barthel Index to distinguish between total dependence (20 points or below), severe dependence (21-60), moderate dependence (61-90), slight dependence (91-99), and total independence (100). Under the new system, a foreigner could be hired for home care only for persons scoring 30 points or below on the Barthel Index.

Yang Rongda is a sales manager at Lida Human Resource Agency, which won an award for excellence from the CLA in 2009. He feels that "the regulations are too strict," and cites the case of a customer with a 99-year-old father. The customer is worried that the father, who lives alone, might fall down at home and hurt himself, but he scores above 30 on the Barthel Index, so the customer has been complaining bitterly: "Do we have to wait for an accident to happen before we can get permission to hire a home care helper?"

Apart from an overly strict index, many have also commented that not all illnesses are amenable to assessment using the Barthel Index, and point to such conditions as dementia, motor neuron disorders (which result in gradual atrophying of muscles in the legs and back), and rare blood disorders (such as Glanzmann's throm-basthenia, which inhibits blood coagulation and prolongs bleeding in the event of an injury). Such diseases produce no readily visible symptoms in the early stages, so the sufferers can go about their daily activities just like anyone else, but the danger of a sudden emergency exists, with potentially disastrous consequences.

Lin Li-chan, a professor at National Yang-Ming University's Institute of Clinical and Community Health Nursing, points to dementia as a good example: "People suffering from dementia get around just fine, but they are often moody, imagine things, hallucinate, and the like." Sufferers often leave home and then can't find their way back. They hide things, forget they've already taken their medicines and then grouse at family members for not bringing the meds, or take medicines on the sly and end up overdosing. Eating can be a problem, too, because they may have trouble using chopsticks, or forget to chew before swallowing. They have to be watched 24 hours a day.

Senior citizens account for 10.7% of Taiwan's population, and average life expectancy is 79 years. The quest to enable the elderly to enjoy healthy golden years is a big challenge in an aging society.

In 2006, the CLA amended its standards, making the Barthel Index a secondary factor in deciding whether to permit the hiring of a foreign caregiver. The amended standards also included a newly added list of over 10 conditions-including severe joint problems, cerebrovascular diseases (as well as brain injuries and cerebral palsy), and dementia-that constitute automatic qualification (even when the Barthel Index score is over 30) to hire a foreign care-giver so long as a doctor's diagnosis (corroborated by a second opinion from another doctor or a physical therapist) indicates that the sufferer requires 24-hour care.

Tsai laments that, even though policies on the hiring of foreign caregivers are gradually being relaxed, a crush of demand is nevertheless leading to gaming of the system. Shady labor brokers and desperate customers, for example, have been charged by prosecutors for producing fake Barthel Index certificates.

The general public has a different lament-families dealing with the burden of long-term care say they are skirting the law only because they are forced to. The government isn't providing enough long-term care resources, policies are not keeping pace with real-life realities, and government agencies are not acting in a coordinated manner. That is why, they say, people are turning to low-paid, hardworking foreign caregivers.

Foreign caregivers

Some labor brokers ask why Taiwan does not take the same path followed in Hong Kong and Singapore, which place no restrictions at all on importing foreign caregivers. Hong Kong, for example, has only one-quarter of Taiwan's population, yet has 300,000 foreign caregivers, versus 180,000 in Taiwan.

CLA statistics show that the number of foreign caregivers has risen by about 8,000 in each of the past five years, and now stands at 180,000. In the manufacturing sector, where Taiwanese companies have been offshoring operations for some time now, the number of foreign laborers has dropped from roughly 220,000 in the year 2000 to about 177,000 today (Fig. 1).

Based on the rate at which Taiwan's population is aging, the Council for Economic Planning and Development (CEPD) estimates that persons aged 65 or older will account for 14% (3.22 million) of the total population by 2017, thus qualifying Taiwan as an "aged society," and that by 2025 Taiwan will have become a "very aged society" (with 20% of the total population aged 65 or older). The severity of Taiwan's aging is worrisome.

But just because the number of old folks is rising, does it necessarily follow that the number of foreign caregivers must also increase? The problem is clearly not amenable to such an easy solution.

From Da'an Forest Park in Taipei all the way south to the streets and lanes of Ping-tung County, senior citizens are everywhere to be seen out for a stroll in their wheelchairs, pushed along by hired help from the Philippines or Indonesia. Young foreign caregivers play a big role today in the Taiwanese family, but our society's distorted values have given rise to many complications.

Scofflaw labor brokers have been known to confiscate passports and withhold wages. Employers often exploit care-givers, and even abuse or injure them. The paucity of protection for the interests of foreign caregivers has elicited strong criticism from human rights groups at home and abroad. Isolated, overworked, and emotionally distraught foreign laborers, for their part, are also prone to break down and hurt others.

Noted author Liu Hsia suffered from the age of 12 with the pain of swollen and disfigured feet caused by atrophic arthritis, and for many years was cared for by Vi-nar-sih, her Indonesian caregiver. The two lived together peaceably until one night in 2003, when the mentally disturbed Vi-nar-sih had a nightmare about an earthquake. She awoke with a start and dragged her charge out of bed, causing serious injuries. The resilient Liu, who had helped found the Eden Social Welfare Foundation and the League of Welfare Organizations for the Disabled, passed away the next day.

According to figures released by the CLA, as of the end of July 2010 over 29,000 foreign laborers have fled their jobs and not been found since. Of these, some 70% worked as domestics. The CLA worries that letting workers enter Taiwan without any vetting at all would bring even greater chaos to a situation that is already quite bad enough.

In addition, it bears noting that both Hong Kong and Singapore are cities. Compared with Taiwan, their land area is quite small and access to medical services is very convenient. A hospital is never far away, so there is no need for a long-term home care system. Taiwan, however, is more like Japan. Senior citizens and persons with disabilities are scattered across the land in many remote areas, and medical care is not nearly so easily available in the countryside as it is in the cities. To handle a wide variety of situations, it is necessary to develop a long-term care system based on the household and community.

Foreigners have been providing home care in Taiwan for over a decade now. By taking their charges out shopping, doing mundane chores around the home, and keeping an eye on progress made in physical rehabilitation, to name just a fraction of their duties, foreign caregivers have become indispensable assistants.

Taiwan has been working out a set of long-term care policies for over a decade now. The Department of Health first set up "long-term care coordination centers" in counties and cities throughout Taiwan. Then in 2007 the Executive Yuan adopted a 10-Year Long-Term Care Program to tap into private-sector resources, set up a network of home care providers, cultivate human resources, and provide for robust funding. The intent is to establish a domestically based long-term care system that will reduce dependence upon foreign caregivers, but the program thus far continues to fall short of its goals.

The CEPD and Ministry of the Interior (MOI) estimate that roughly one in 10 (245,000) of all elderly people in Taiwan are functionally impaired, and 54,000 of them are already living in nursing homes (the supply of nursing home accommodations in Taiwan exceeds demand; the average occupancy rate is 74%). In addition, there are about 120,000 people in Taiwan with extremely severe functional impairments, of whom some 9,000 live in care institutions. All told, there are at least 290,000 functionally impaired persons in need of assistance with their daily living activities.

Since there are already 170,000 home-based foreign caregivers looking after nearly 60% of those in need of long-term care, it ought to be enough for the government to concentrate its resources on low-income and other disadvantaged households, but there are simply too few locals willing to work in the field to provide for everyone in need.

It is not hard to understand why so few are interested in providing home care. Just as in the manufacturing sector, people are loath to put up with "the three Ds" (work that is dirty, difficult, and/or dangerous).

MOI statistics indicate that government agencies from 2003 through 2009 trained some 62,000 home care workers, of whom 10,000 have taken jobs at nursing homes and 4,900 in home care. In addition, others have taken jobs in hospitals and long-term care facilities, but it is difficult to determine how many have gone this route since a lot of caregivers work for hourly wages or for firms that provide such services on contract.

In addition, roughly 150,000 spouses from mainland China have obtained permanent resident certificates that permit them to work in Taiwan, and many of them work as caregivers, so there is no shortage of caregiver manpower in Taiwan. The problem resides in high turnover and the large number of people who leave the field altogether.

To safeguard caregiving jobs for locals, and to accommodate the long-term care system, the CLA has adopted a rule whereby before a family can apply for permission to hire a foreign caregiver, it must first contact the local government's long-term care center to seek a referral for a locally based caregiver (the family must get referrals twice, with three persons referred each time). If a local caregiver is hired, the government will kick in NT$10,000 toward his or her salary each month for a year. Statistics from the CEPD indicate that over 3,000 referrals are made each month throughout Taiwan, but they only lead to the hiring of 30-plus caregivers. The success rate of 1% basically equates to failure.

In 2007 the government adopted a 10-Year Long-Term Care Program that provides a wide variety of services, including buses for the disabled, meal delivery, home care, and community-based senior citizen daycare. Extra manpower is badly needed for the long-term sustainability of the system.

The MOI has rolled out one subsidy after another to encourage families of the functionally impaired that have not hired a foreign caregiver to take advantage of the resources provided by the government to hire a local. How have these efforts been working out?

The government's 10-Year Long-Term Care Program provides a comprehensive range of eight different subsidies, comprising: money for care services; purchase and rental of care equipment; meal deliveries; transportation services; in-home care; respite care; community-based rehabilitation; and in-home rehabilitation. Low-income families are subsidized for the entire cost of these items. For a medium-low income family, the subsidy comes to 90%, and for all others it is 70%.

With a moderately impaired person receiving ordinary home care, for example, if we assume six hours of service per day (NT$180/hr) and 20 days of service per month with the government subsidizing the maximum number of hours (50) per month, the person receiving care would have to pay NT$15,300 per month out of pocket. With a severely impaired person (government subsidizes up to 90 hours per month), nine hours of service per day would mean that the person pays NT$21,060 per month out of pocket.

The out-of-pocket expenses of the preceding paragraph differ little from the wages paid to a foreign caregiver, but the latter is on call 24 hours a day, and can even be asked to take care of other household matters. It is obvious which is the better deal.

Taiwan has some 250,000 functionally impaired persons aged 65 or older, many of whom are looked after by 170,000 home-based foreign caregivers. Wherever you go in Taiwan, you are sure to see senior citizens out for a stroll in their wheelchairs, pushed along by foreign caregivers.

From the standpoint of fairness, it is important that scarce long-term care resources be directed to those most in need of them, but Lin Li-chan at National Yang-Ming University (NYMU) found in a 2009 study that the severity of people's impairment tends to get exaggerated under the Long-Term Care Program, and there is also a gender gap in the allocation of resources.

For starters, to decide which functionally impaired persons are eligible to receive long-term care, personnel from the local government first visit the applicant's home to do a needs assessment.

The Long-Term Care Program doesn't use all the factors covered in the Barthel Index, but instead pares it down to the applicant's ability to feed, move about (i.e. get out of bed and into a wheelchair), use the toilet, bathe, walk on a level surface, and get clothes and socks on and off. An applicant unable to perform two of these six functions is deemed to have mild functional impairment. Inability to do three or four constitutes moderate impairment, and five or six means severe impairment.

Wu Shiao-chi, a professor at NYMU's Institute of Health and Welfare Policy, points out that a person who has had a stroke may be unable to walk on a level surface, but will not necessarily be incontinent. As for bathing, mere inability to reach one's own back is not taken overseas as grounds to deem a person dependent, but under Taiwan's Long-Term Care Program, a person thus limited is categorized as partially dependent in that category. In some cases, this could tip the overall score such that the severity of the applicant's condition is exaggerated.

In analyzing the cases of 6,612 persons receiving assistance through Taipei County's long-term care center in 2008, Lin Li-chan found that 59.8% of the people whose Barthel Index scores indicated no functional impairment were actually adjudged as mildly impaired, and another 5% were even categorized as moderately impaired. Of those whose Barthel Index scores indicated mild functional impairment, 13% were classified as moderately impaired and 1.8% were deemed severely impaired.

No one wants to spend their golden years committed to an institution. Taiwan's Long-Term Care Program seeks to oversee the establishment of "small but beaautiful" senior citizen daycare centers in every township throughout Taiwan. Shown here is a senior citizen daycare center in Taipei's Jingmei area.

The Instrumental Activities of Daily Living (IADL) scale, which is used to determine whether persons suffering from dementia or any of various rare diseases require assistance, is another good case in point. The Long-Term Care Program makes a determination on the basis of five IADL scale factors: the ability to do shopping, prepare meals, handle household chores, leave the home, and do the laundry. (The scale also covers three other factors-ability to use the telephone, keep track of finances, and administer one's own medicines-that the Long-Term Care Program does not take into consideration.)

Wu Shiao-chi points out, however, that most men in Taiwan would answer in the negative if you asked them whether they can prepare meals, do the laundry, or handle household chores. This is especially true among men of older generations, but it may simply be that they are unwilling, not unable. For that reason, these three gender-distorted factors are not used overseas as criteria for determining functional impairment. In particular, the meaning of the term "prepare meals" is much too fuzzy. Heating up leftovers, for example, requires nowhere near as much ability as shopping for groceries and whipping up a meal from scratch. When terms are not clearly defined, there is considerable room for mushiness in determinations of impairment.

Wu suggests that the Long-Term Care Program ought to base determinations on an applicant's ability to use the telephone, administer his or her own medicines, and keep track of finances, all of which are gender-neutral criteria.

Says Wu: "Resources are limited, so we should limit subsidies to cases of moderate to severe functional impairment. But it's set up now so that falling short on a single criterion already qualifies you as mildly impaired. That's too lax." Citing the example of persons who've had a stroke, she further points out that the first half-year after the stroke is key to the success of rehabilitation, and if the stroke victim is unwilling or has no need to do even simple household chores such as folding clothes, then the chance for rehabilitation is lost. "The point of caregiving should be to prevent functional impairment from getting worse. We need to keep the old folks from falling down, for example. What we don't want is for caregivers to be waiting hand and foot on their charges, because that enables further deterioration of their capabilities and atrophying of their limbs, with the result that reliance becomes a way of life."

Fig. 1: Number of foreign caregivers in Taiwan

Faced with a shortage of caregivers, the government for some time now has been casting about for a way to integrate the 170,000 home-based foreign caregivers with the locally based long-term care system.

To ensure fairness, the MOI does not allow families with a foreign caregiver to apply for assistance under the government's Long-Term Care Program, but this policy has been criticized by social groups, who feel it deprives such families of their rights as citizens and is punitive in nature.

But Chuang Chin-chu, chief of the MOI Senior Citizens' Welfare Section, defends the system. She points out that foreign caregivers have the right to time off work because they are on duty 24/7. On that one day a week when the foreign caregiver is off, she argues, the family should step in as caregivers and let the government direct its limited long-term care resources to people who are in much greater need.

In August, the CLA invited scholars, other experts, and social welfare groups to a meeting to discuss the feasibility of allowing foreigners to work as home care agency workers.

Tsai Meng-liang at the CLA's Foreign Workers Administration Division says many families in need of care services do not wish to be employers, because an employer has to find space in the home, supervise the caregiver, and contribute to the labor insurance system and the Employment Security Fund; but the system for hiring foreign caregivers is inflexible. If non-profits and other social groups with experience in long-term care could bring foreign caregivers to Taiwan, hire them, and provide them with management and training, and if such providers were integrated with the locally based long-term care system so that foreign and local caregivers could switch off caring for the same persons- i.e. if foreign caregivers were allowed to work as agency workers-then the public would be able to hire whoever they want depending on their needs. This is a viable option for Taiwan's long-term care sector.

However, government agencies would have to get together to build consensus and hammer out both the larger concept and the details of such an approach, and support would have to be built among social groups and the general public.

Aging of the population is one of the main challenges facing governments throughout the world in the 21st century. Building a robust long-term care system is a large and complex undertaking that encompasses many different processes, including home care, meal delivery, transportation, psychological counseling, and physical rehabilitation. A multilayered social system is needed to support something so big. Taiwan needs to act now to find a way to build an environment that is friendly to senior citizens. The need is urgent. The time for dithering is past.