THE ROLE OF SOCIAL WORK IN CARING IN HANDBOOK FOR CARING IN HUNTINGTON’S DISEASE

THE ROLE OF SOCIAL WORK IN CARING by Alison Ball was written in 1985 as Chapter 18 of the Handbook for Caring in Huntington’s Disease Edited by Edmond Chiu and Betty Teltscher.

2003 Introduction

At the time I wrote this paper I was working at the Arthur Preston Centre for Huntington’s Disease set up by Wesley Central Mission in Balwyn, Melbourne Australia. This was the first nursing home and day centre in the world specifically for people with this illness. In 1981 I became the first Social Worker employed by Wesley there at the Centre. It should be noted that since this paper was written the gene for Huntington’s Disease has been found and a predictive test has been developed. This still leaves many people currently with the illness and many people who will still develop the illness. There is still no cure for Huntington’s Disease once it has developed.

[(*)Throughout this paper the examination of roles and tasks of a social worker employed in an adult residential centre setting are based on those explained in lectures during 1978 by Mr. Cliff Picton, then Senior Lecturer in Social Work at Monash University.]

Social work roles are largely determined by the goals of the employing organisation and are underpinned by the values of the personnel and professions involved and primarily by the personal and professional values of the social worker.

In this instance the social worker acknowledges the values set by Wesley Central Mission whose underlying philosophy is indicated in its motto “People Caring for People”. Specifically in relation to this particular Care Centre these values involve beliefs that sufferers of Huntington’s Disease have for too long been the “forgotten people”, that quality-of-life issues are most relevant and that increased knowledge and awareness of the disease and its implications will ultimately benefit all concerned. The particular thrust of social-work values is to place as paramount the self-worth and dignity of each individual sufferer or family member.

The Arthur Preston Centre is a centre specifically devoted to the care of sufferers of Huntington’s Disease, and, in many respects the role of the social worker is similar to that of a social worker in any adult residential care setting (*). However, there are important differences in emphasis due to the particular nature of the illness, the current state of knowledge of the disease and to the unique nature and newness of this particular institution,. The inherited aspects of the disease, the lack of a predictive test to determine future sufferers, the lack of a cure, the long drawn-out course of the illness and its devastating effects on both sufferer and family mean that care of the sufferer cannot be divorced from concern for the family. Additionally, the fact that the centre is the first in the world where so many sufferers of Huntington’s disease are cared for under the one roof means that the entire project is largely experimental with little knowledge and few known guidelines to direct its programme, policies and procedure.

The primary goal of the Care Centre is to offer an improved quality of life to sufferers of Huntington’s Disease. Other goals of the Care Centre are to make a study of the most appropriate care for sufferers, to encourage and participate in research and to support, educate and act as a resource for families, the community, to professionals and related institutions in regard to Huntington’s Disease.
These goals and values therefore dictate that the social worker in the Care Centre must first and foremost, focus on the needs of sufferers. At the same time the needs of families, the community and of professionals must be borne in mind. The prime roles and tasks of social work in the Care Centre must be directed toward planned change which is aimed at improving the policies and practices of the Centre in the best interests of those the Centre serves.

This necessarily involves the social worker for H.D. in concern for staff and volunteer workers and for home and institutional carers as well as sufferers since, “caring for the carers” is an essential element in the provision of good care for sufferers. It also involves the social worker in a concern for the working relationships between individuals and between groups involved in the care and, as well, involves the social worker in the provision of support, education and resources for families, the community, professionals and related institutions. Finally, it involves the social worker in an interest in research programmes, so that they work in the best interests of sufferers or prospective sufferers.

Specific Social Work roles and tasks must begin with the perceived and expressed needs of the people to be served. The perceived needs of sufferers of Huntington’s Disease often vary very little from others who may eventually be unable to care for themselves. Sufferers need to be able to continue to give and receive affection, they need to be able to make choices and decisions for themselves, they need to be acknowledged as having a history, to be adequately cared for, both physically and psychologically, but primarily they need to be valued as individuals. Huntington’s Disease is a progressive deterioration of mind and body such that sufferers at first can remain in their jobs or care for their families but eventually will require total care for themselves. Each individual is then to be found on continuums of involvement/disengagement, of activity/rest and of independence/dependence.

Families require personal, professional and community support services, they need education relating to the disease and in caring for sufferers and themselves and they need recognition of the difficulties of the life they lead.

The needs of the community and professionals is for education relating to the disease and its sufferers and information regarding ways in which they can be of help. When community members become involved they need support and education as volunteeers while related professionals, organisations and staff require education relating to the disease, its sufferers and the problems for families. They also need the support of competent resources when they care for families and they need to be imbued with hope so that they, in turn, can project a more positive attitude to families and sufferers.

As with the elderly and those suffering from any chronic terminal illness Huntington’s sufferers and their families can be thought of as requiring a continuum of care and in Victoria there are three organisations which are the principal bodies offering specific, though sometimes overlapping, services. At one end of the continuum are families without a current sufferer who still suffer the effects of living with the aftermath of having had a sufferer or of living with the spectre of being statistically at risk of getting the illness. It is these families which provide the most relevant primary focus for the Australian Huntington’s Disease Association in Victoria. The Wesley Central Mission Care Centre, on the other hand has, as its primary focus, the families and people at the other end of the continuum – the person with the disease now and the family trying to cope with that person who may or may not be in permanent care.

The Department of Psychiatry at Melbourne University which has long been the fountain-head in Victoria for all interest and research into H.D. and also offered the beginning of care for sufferers and family spans, from a different angle, the full range of the continuum. The University still conducts some research projects and offers an Out-patients’ Clinic open to anyone concerned about H.D. Throughout the 1970’s the Department also employed Mrs. Betty Teltscher as research social worker to draw up the Register of family pedigrees.This Register is currently maintained by the Arthur Preston Centre social worker who thus has the dual roles of Care Centre social worker and medical social worker to the Outpatients Clinic in the Department. This brings the social worker in touch with families other than those associated with the centre and although many are referred to the welfare worker for the A.H.D.A. the social worker is directly responsible for making contact with these families on behalf of the Register and the Outpatients Clinic at the University.

In this, the first year of operation of the Care Centre, the newness of the venture has meant that the roles of the social worker have been concentrated in particular directions by the necessity of the momentary pressures or that disproportionate amounts of time and energy have been spent in some areas at the expense of others, sometimes due to initial gaps in the system, sometimes by direct choice.

For example the social worker has spent an unexpectedly large amount of time as an educator of outside students and professionals but would expect this to be modified as the educational programme is rationalised. Conversely the social worker has spent almost no time in explicit education, support or as resource person for staff when that role now shows signs of emerging as more significant in this setting. The social worker has spent a great deal of time dealing with the financial concerns of residents related to admission, with organising various procedures related to transport, professional appointments and so on and with the ramifications of the developing organisational structures both within the Centre and between the centre and other bodies involved in the care of Huntington’s disease in Victoria.

Many of the normal tasks of social work related to direct service have been time-consuming but have been shared amongst members of the team with policies and procedures often developed in an ad hoc manner and clearly recognised often only after something has gone wrong. For example, admission procedures to day care are only now being clarified and while the need for individualisation of treatment plans for residents and day care participants has been a subject for discussion at many levels and stages, no complete solutions have as yet been found. On the other hand individuals were quickly involved in constructive activities and specific therapies and medical attention as required was quickly mobilised on their behalf. Again, when three people died in the first few months, rituals were quickly established which have already shown our sufferers that their deaths will be handled with dignity and honour.

The ad hoc manner for development of policies and procedures, tempered as it has been with the best interest of the sufferers always to the fore, has meant that cognisance has been taken of the feelings of workers in the Centre and policies and procedures have grown out of a ground swell of opinion that is shaped and moulded by the personnel involved. The Centre is thus developing a style distinctly individual if sometimes a little stormy in the making. Although we ourselves may become impatient with the imperfections it is interesting to note that outsiders coming into the centre mostly comment on the obvious warmth shown and the fact that residents are treated as individuals.

A major though rather nebulous role taken by the social worker has been to constantly assess and reassess the impact on all concerned of the care services offered to H.D. sufferers and families. This has meant the bringing in of outside expertise and constant liaison with the other organisations and personnel involved in H.D. in Victoria. Within the Centre it has focussed on a constant awareness of how this organised way of providing physical, psychological and social care to a very special group affects all people connected with the Centre. There is, as can be expected, sometimes an incongruence between stated aims and the actual practice of care.

The dilemmas are innumerable at many levels. For instance, good physical nursing care is essential for the well-being of sufferers, the Centre is funded as a nursing home and therefore staffed mainly by the nursing profession and yet the aim of the Centre is to provide as home-like an atmosphere as possible. A stated aim also is to share the care with families or other carers and to maintain the sufferer in his own home and amongst his family for as long as possible but the very presence of the Centre makes it easier for families to hand over total responsibility for their sufferer to the centre.

Other dilemmas revolve around issues such as whether or not persons at risk of H.D. or sufferers in the early stage of the illness should be in contact with the very advanced sufferers. On the one hand some protection is needed, particularly if new sufferers are already depressed or acquainted with the course of the illness but on the other hand an argument can be made that it is better for people to come to terms with the worst of the illness while they still have the capacity to verbalise their emotions. Furthermore, there is an incongruence if on the one hand we say to our most disabled people “You are an okay person, you are acceptable” and on the other if we say to another group “These peple are too terrible for you to associate with”. In the event, and in concert with the opinion of the A.H.D.A.Welfare Worker, an attitude has been taken where early-stage sufferers are able to join groups separate from the more disabled sufferers and, generally, only slowly come in contact with the residents and other day-care participants. In addition, an important role for the social worker has been to meet and prepare persons at risk of the illness or sufferers admitted to short-term care for the possible trauma of being involved at the Centre.

Some facets of the social work roles and tasks which are peculiar to the setting or of particular interest are worthy of mention.

This residential care setting for sufferers of such a disabling, chronic and inherited illness seems to require of all its staff and voluntary workers an ability to cross the boundaries of their various jobs or professions. In particular, all persons working at the Centre need to be comfortable in being able to take care of the basic physical needs of sufferers. As regards social work, rather than try to eliminate time spent on so-called “nursing duties” (feeding, toiletting, holding cigarettes, changing clothes etc.) the social worker has, at least for a trial period, increased the time spent in this way by being available from 7.00a.m. several mornings weekly. This action provides many opportunities for social work. It demonstrates real support for nursing staff at the most difficult time of the day and means that the social worker can speak of the problems of caring from a position alongside the nurse, it allows more opportunities for trying varying approaches toward difficult behaviour and most importantly in building relationships with sufferers it demonstrates that their dignity can be maintained and that they are acceptable persons even at times of total dependence.

In many ways, too, the involvement above takes the palce of counselling or therapy with the sufferers. Although there has been some therapeutic group work tried and individuals sometimes require counselling, by and large the social worker encourages all carers at the centre to be listening ears and does not wish to encourage an atmosphere of referral to the social worker for problems which outside would simply be shared with a friend or family member. Opportunities arise for immediate therapeutic work when, in the normal course of each day sufferers experience difficulty in coping and, unable to verbalize problems, tend to act out their feelings.

There are some exceptions to this but verbal therapeutic work with sufferers is extremely difficult. Contrary to a normal counselling approach it is often necessary to put words in the mouth of sufferers and wait for a yes/no answer or be sensitive enough to assess the meaning of a non-verbal response. Sometimes behaviour suggests that the social worker’s interpretation has been effective.

The social worker is involved with families through both the care centre and the out-patient clinic but primarily work with families stems from the needs of sufferers. For example, with the primary goal in mind of improving the quality of life for sufferers it was decided to call meetings of the husbands of women sufferers. These men seemed a discrete group and appeared to be extremely isolated but with similar experiences and needs and much accumulated knowledge which could profitably be shared. By first building their support for each other and providing a venue for sharing their knowledge it is envisaged that, not only will they be able to be even more supportive of their families and wives but more able to lead fulfilling lives for themselves and in future give husbands and new sufferers the support they themselves have lacked. The group met four times in 1982 in a central venue away from the Care Centre. In future a similar group for wives of male sufferers could be formed.

The role of the social worker in the field of Huntington’s Disease calls for an innovative approach and an ability to assess and plan for the needs of the overall client population of the area to be serviced. Such overall plans must take into account the organizations and workers involved, the services already available and the potential resources for the future.

In Victoria the current situation would indicate that the Arthur Preston Centre will develop more and more as a disease specific, specialist care, resource and education centre with the growing professional expertise available to outsiders. On the other hand in Victoria it would seem appropriate and logical in view of the needs and the current funding situation that the A.H.D.A. continue their development as a low- key family oriented alternative mode of entry into the care systems.

The welfare workers employed by the Association complement the work of the centre and have forged an important role for themselves in support of families in the community. Families and sufferers in Victoria have got a third avenue of approach through the Department of Psychiatry at Melbourne University and indications are that in the future the three organisations will continue to work alongside each other so that an overall comprehensive service is offered and services are not duplicated.