Sustaining the right quality of life for individuals with challenging needs in ageing

The elderly: Caring for them can be a viable
industry with expanding job opportunities. 
Source: Johannes Jansson, Wikimedia Commons 
 

By Teoh Ai Hua, Jim Lim Teik Wah & Dr Thomas Khor

MANY ELDERLY people, suffering from age-related disabilities, some of which are substantive, rely exclusively on family members and close community organisations to help tend to their daily needs and well being. A significant number will continue to remain in their own homes and live with their family members. However, it is not uncommon, judging from media reports, that many older people are neglected, living out their twilight years in miserable circumstances or in situations of severe indifference within their households. There have been cases of abuse too. This paper aims to highlight key responsibilities that the government should assume in improving the support and care services for the elderly, including ways to encourage and facilitate new “service providers” to address the needs of this growing vulnerable population. This paper argues that these measures, when comprehensively put in place, will expand and improve services as well as develop the social care industry as a viable sector for new job creation. More importantly, we believe it will eventually lead to improving and sustaining the quality of life for older people living in the community.

• Teoh Ai Hua is Senior Lecturer, School of Applied Psychology, Social Work and Policy, Universiti Utara Malaysia
• Jim Lim Teik Wah, Former Director of Social Services in the UK
• Dr Thomas Khor, Managing Director, Home MediCare, Penang
• This paper was presented at International Social Work Symposium organised in collaboration with a number of universities and the Malaysian Association of Social Workers (MASW), April 27-28, 2019. Read here.

This is the full paper (3,200 words in all):

INTRODUCTION

Malaysia is estimated to become an “aged” nation by 2030 when 15% of its population will be over 65 years old (United Nations, 2015). The majority of older people will be living with and cared for by their families. In Malaysia, it has been reported that between 60% to 70% of the older persons live with their children or extended family (Pala, 2005; Hamid, 2015; Kooshair, Yahaya, Hamid, Abu Samah and Sedaghat, 2012). While living with their children does not imply dependency on the part of the older persons, there are differences between the main carers for older men and older women. Older men normally rely on their wives and/or daughters while older women rely mostly on their children only (Hamid, 2015). However, the biggest challenge for most families is coping with the care-giving burden for older persons with certain degree of dependency due to frailness or dementia (Choo et al., 2003; Nikmat, Howthorne and Al-Mashoor, 2015)

It is not uncommon to read in the media about older people being neglected, living out their twilight years in miserable circumstances or in situations of severe indifference within their households. The burden of care on caregivers may lead to the abuse of the elderly (Choo et al., 2003). One particular research has shown that 26% of the respondents (older persons) have experienced at least one incident of abuse, with emotional abuse being the most prevalent (Hamid, Abdullah and Yahaya as cited in Hamid, 2015) yet the health professionals demonstrated poor understanding of signs of elder abuse and neglect (Ahmed et al., 2016). Nevertheless, the absence of data on such matters in Malaysia is an indicator of low awareness and priority of the subject matter (Hamid, 2015).

Past research in Malaysia have also focused on the quality of life of older persons in institutions or at their own home, the burden on caregivers, and nursing care and social care services (Aziz and Ahmad, 2017; Choo et al, 2003, Nikmat, Howthorne and Al-Mashoor, 2015, Tey et al, 2016). One report pointed out that having a maid or providing nursing care for the elderly living with their families may not reduce the burden on the caregivers (Choo et al., 2003). However, most were focused on the public sector perspective, and not much has been written on social care services provided by  independent players or the private sector where the elderly or their caregiver can pay for services as an option of care. There is certainly a need for care services for those who can afford to pay for them.

METHODOLGY

The growing population of older people can have a major impact on health and social service provision, including social care. The repercussions, both social and economic, will be major and far reaching if resources are not planned or distributed properly. Some questions that need to be addressed are:

1. Who can older people with challenging needs (and their families) engage, if they can afford paid home help services?
2. Are these services available?
3. Are these services regulated?
4. What are the qualifications of the caregivers or care workers, if available?
5. What can the government do to ensure quality and availability?

This paper aims to examine the existing ecosystem of social care services, relevant legislation and training programmes for elderly care in Malaysia. At the end, several recommendations will be presented and implications for social work practice will also be discussed. 

FINDINGS

THE PRESENT SCENARIO

(1) Underdeveloped social care services for elderly care

In general, social care services for the elderly provided by the public sector, i.e. the Department of Social Welfare, can be divided into three types, namely, (i) cash and in-kind benefits, (ii) institutional care, and (iii) home care (Hamdy and Yusuf. 2018). However, the government direct services (provided by its own welfare officers or assistants) are mainly from category (i) and (ii), while home care services are indirect services where the government giving funding to non-government organisations and volunteers to run free home help programmes, activities centres (e.g. Pusat Aktiviti Warga Mas, PAWE) and transportations services (e.g. Unit Penyayang Warga Emas, UPWE). The volunteers involved in home help programmes are mainly retirees or old persons themselves, and the service is still limited to a few areas. As at March 2017, there were 2,150 volunteers providing services to 5,892 older persons (Mohd Salleh, 2017).

The health service also provides care services for older people in the form of outpatient care and hospitalisation. Although there are more private hospitals compared to public ones in Malaysia, over 70% of all admissions are to public hospitals where older persons make up over 20% of the total admissions (Tey et al., 2016).  However, the health service also faces limited resources and they are not able to provide a continuum of care including home care, day care and respite care (Ambigga et al., 2011).

As a result, scarce medical resources may be directed inappropriately. One example is the need to care for older people following admissions via accident and emergency facilities, resulting in what is termed as “bed blocking”. Many hospitals are facing difficulties in discharging these people, sending them home. This is mainly due to the lack of supporting services in the community.

In addition, most of the services provided by the voluntary and private sectors are residential homes (free or low fee) or nursing homes (more expansive). They do not cater to the needs of older people who want to remain at home. In essence, services for older persons with challenging needs who live independently or with their families are rather limited. 

Due to an under-developed aged care infrastructure, many private unlicensed residential homes have sprung up, especially in big cities, to meet the demand. There are glaring examples of such establishments operating without due regard to safe environment or operating safeguards despite the existence of the Care Centre Act 1993 and the Private Aged Healthcare Facilities and Services Act 2018 (Serving seniors requires passion, 2019: para 9). Stories of elder abuse are not uncommon. Other problems include inadequate staffing ratio, depersonalised rooms and unattractive environment and sometimes, they use public hospitals as dumping grounds for residents they are unable to care for.

(2) Undefined qualification of caregivers under existing legislation on elderly care

Offering shelter and care on a commercial basis and operating at standards as yet  undefined or unquantifiable, the care facilities have left many elderly people at some risk. This problem is compounded by the lack of choice. Although the Care Centre Act 1993 and the enactment of the Private Aged Healthcare Facilities and Services Act 2018 have provisions for the government to regulate the service providers in terms of number of residents, staff-resident ratio, health and safety measures etc, monitoring and enforcement remain wanting. 

Moreover, the qualification requirements of staff and care workers remain ambiguous. For example, Section 7 of the Care Centre Act 1993 gives power to the Director General of Social Welfare to impose conditions for registration yet it was undefined when comes to qualifications of persons employed as in 7(b) and 7(c), and without additional schedule or by-law:

“7(b) to ensure that any person employed at the care centre, whether in its management or otherwise, is a fit and proper person, whether as regards age or otherwise, to be employed at the care centre; and 

7(c) to ensure that the care centre will be adequately staffed by a sufficient number of persons with suitable qualifications or experience.”

On the other hand, the Private Aged HealthCare Facilities and Services Act 2018 defines caregiver as “anyone, other than health professionals, who provides personal care to any care recipients” and all licensee of healthcare services must ensure that caregivers are trained and competent (Section 20(b)) and the training of caregivers in basic life support (Section 26(4)), and the licensee can be revoked of his or her license if the licensee employs unqualified person as a caregiver (Section 30(e)). However, it only spelt out healthcare services provided by health professionals and para health professionals (Schedule 1) and qualifications of those healthcare professionals that are currently being regulated by legislation (Schedule 2). Again, no specific qualifications are mentioned for the caregiver.

While nurses are seen as qualified in providing nursing care, experience on the ground has shown that many of the elderly who require home care services may not need nursing care all the time. Research has also shown the importance of social support in achieving better quality of life for those living at home (with proper support) in comparison with those at nursing homes (Nikmat, Howthorne and Al-Mashoor, 2015). The role of caregivers must be valued and their capacity must be enhanced.

(3) Underdeveloped and unregulated training courses for caregivers or care workers

Currently, only one university, Universiti Putra Malaysia, offers a postgraduate programme in gerontology. It does not address the needs of trained care workers. Such needs are normally not addressed at the tertiary level (Hamid, 2015). The National Council of Welfare and Social Development Malaysia (MAKPEM), in collaboration with the Open University Malaysia (OUM), has offered a Professional Certificate for Caregiver which is a 16-module programme (MAKPEM, 2014). However, only one module is on elderly care. The MAKPEM-OUM Professional Certificate serves more as a self recognition for NGO workers. It is not accredited by the Malaysia Quality Agency (MQA). It is also not getting any recognition from the underdeveloped social care sector.

 

Seeing the lack of training and recognition of qualifications in the social welfare sector, the Department of Social Welfare has actually started an initiative to develop relevant training and standards through the National Occupational Skill Standards (NOSS) framework several years ago (Jabatan Pembangunan Kemahiran, 2016). Elderly care (27.4) is placed under Sector 27 Care and Community Services, and three (3) levels of NOSS have been identified: 

• Level 3: Elderly Care Centre Operation
• Level 4: Elderly Care Centre Administration
• Level 5: Elderly Care Centre Management

From the titles given, it seems that the skill standards set for the three (3) are meant for operators or managers of care centres, and not so much for caregivers or care workers. The latter needs Levels 2 and 3 competencies in providing direct care and support for the elderly. In Australia, one needs a qualification in Certificate III in Individual Support (Ageing, Home and Community) to become an aged care worker (www.opencolleges.edu.au). In the United Kingdom, it has set standards at Level 2 and Level 3 Diploma in Health and Social Care (Adult), as well as up to Level 4 Diploma in Adult Care that can be offered through many accredited institutions like City and Guild (www.cityandguilds.com).

In this regard, Malaysia has no social care qualifications set at Levels 2 and 3, the nearest equivalent would be the Professional Certificate for Caregiver by MAKPEM-OUM. Its relevant standards and competencies have yet to be examined and accredited by a regulatory body. 

 

(4) Historical and cultural factors

In Malaysia, as in many other Asian countries, looking after elders is a family duty. It is very difficult to send an elderly person to a residential care home. This familial responsibility is prevalent amongst all the races. Nevertheless, modernisation trends and societal changes are altering mindsets. Lower fertility, higher rates of childlessness, and increases in the number of divorces and people remaining single, have all contributed to a shrinking pool of potential care-givers within the family setting. 

Care for the elderly could be headed for a crisis in terms of the availability and accessibility of essential services. As mentioned earlier, services outside the family remain fragmented. They are also of varying quality and scattered inconsistently across the country. Many families now use foreign domestic helpers as “caregiver”, adding onto their other job tasks. Many of these helpers are not trained or properly compensated, resulting in the elderly person making do with a second rate service.

RECOMMENDATIONS AND IMPLICATIONS

The roles of the government

The government should undertake to improve support and care services for older persons, including ways to encourage and to facilitate new “service providers” to address the needs of this growing vulnerable population. These include:

 

(1) Developing a more active and diversified social care sector

This can be done by generating conducive conditions including developing business-friendly policies in the social care market that encompasses a mix of service provision by the public, private, non-profit and voluntary sectors. This diverse care provision, offering a range of care to meet different needs will be able to offer “choice, appropriateness and sensitivity” in the light of the country’s multi-diverse communities. 

(2) Setting and regulating standards for practice in social care

1. Enhancing existing legislation, such as the Care Centres Act 1993, by developing regulatory mechanism that sets standards for practice of care workers and for quality service by service providers. Skills applicable include managing elderly people with sensitivity whilst assisting with all aspects of daily living, hygiene, nutrition, mobility and basic one-to-one counselling. Caregivers would also need to cope with those with multiple medical needs. 
2. Therefore, we would like to propose the establishment of an Inspection and Registration Unit, within the Department of Social Welfare Malaysia. Its main role is in implementing, safeguarding and protection for elderly people living in residential care. As demand for care-giving inevitably rises, the unit must also have adequate powers to apply sanctions on underperforming organisations and on those who employ untrained staff.

(3) Setting and regulating the training courses in social care

1. The role of a caregiver or care worker must be a recognised occupation, assuming the status of vocational level standards under the National Occupational Skills Standards (NOSS) framework. These caregivers who are trained would have a recognised certificate which they can usefully take with them to another employer, an individual, a family or a residential home. In this regards, the Department of Social Welfare may seek to appoint established educational and training institutions to approve courses. 
2. Training and accreditation must follow and further education providers must be encouraged to provide basic short courses, encompassing syllabus which are fit for the purpose of individual care-giving. (There are any examples of such courses run in developed countries). Educational pathways should be created for qualified caregivers to pursue more advanced professional qualifications at the tertiary level when they want to move up in their career.
3. It is important to note that setting training and practice standard as well as creating occupational pathway for caregivers is to get more locals into the social care sector instead of relying on foreign workers or maids to look after the well being of older persons in the country.

(4) Establishing a Commission for Social Care

1. The government may not regulate social care qualifications through enacting legislation like how the health professionals and para-professionals are being regulated. However, the government can set up a Commission for Social Care as a national body for all forms of social care, so as to (1) ensure that standards are maintained, (2) regulate training of social care workers and (3) provide relevant accreditation. The commission will, through regular monitoring and inspections, ensure that providers undertake service quality improvements. 
2. Before setting up such a commission, the government may prepare a consultation paper for the care of elderly people and adults with disabilities and should review all current services for elderly people with a view of implementing positive changes to ensure long term sustainability and to enhance individual dignity and purpose.

Implications for social work practice

When the above suggested measures are in place, and the numbers of qualified caregivers have increased, it can actually help to enhance the practice of social work in the following way:

1. Assessment and care planning: Social workers will be able to do needs assessment which can be met with suitable services as there will be more resources or choices available for social workers to consider in formulating care plan with older persons. 
2. Interventions: Besides being able to conduct psychosocial assessment and interventions, the skills and practice standards in social care are essential for social workers who provide direct service to older persons. Even if the social worker is not the key worker to the older person, they would be able to supervise family members or other caregivers of proper ways in supporting the daily living of older persons at home.  
3. Inspection: This can be the role of the social workers in the Department of Social Welfare to ensure quality service delivery by trained caregivers or care workers in institutional or community care for older persons.

CONCLUSIONS

Our elders deserve more and should not be discarded once their working lives are over, as they are entitled to continuing support, care and love for as long as their bodies and mind can sustain them. With great shifts in attitudes and an accompanying increase in recognised community of caregivers, the quality of existence of elderly people will be immeasurably enhanced. This is without a shadow of doubt. We owe it to our elders.

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