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Introduction Beginnings Making sense of the information Deciding what to do Reviewing the plan

Stage 1 - Beginnings

Case Information

  • Kristina Popova (all names and identities are fictitious) aged 27 who has Down's Syndrome, lives with her pensioner parents in their rented flat in Westport, a small coastal town in the south west of England.
  • Kristina's mother Marta has cared for Kristina since she was born.
  • Kristina's father Jan was given compensation from the police force following an accident on a training course which has left him permanently disabled. Jan was diagnosed as having diabetes five years ago. He recently suffered a minor stroke which left him slightly paralysed and able to walk with difficulty, and only with a stick, which he carved from a sapling in the hedge near their flat.
  • Marta, aged 59, turns up at the local social services department office asking for help as a carer. Until now, Marta has coped. She now feels the strain of caring both for her husband Jan (66) whom she refers to as 'not able to do much for himself' and her daughter Kristina whom she describes as 'a bit slow in the head'. Marta and Jan migrated from Poland to England 30 years ago.
  • The worker sends the request to the local authority community team for people with a learning disability (CTPLD). This provides borough-wide learning opportunities and activities. The team works within the legal framework of the Local Authority Social Services Act 1970, NHS and Community Care Act 1990, Carers and Disabled Children Act 2000, accompanying statute law, case law, Guidance and DoH circulars. The team draws its strategy from the government White Paper Valuing People: A New Strategy for Learning Disability in the Twenty First Century. A White Paper Cm 5086 (SO, 2001) This emphasises respect for persons, inclusion, independence and choice.
  • The only social worker available to take on the referral is Tom, a male, white, able-bodied social worker half Marta's age. The worker sent by this team to meet Marta specialises in carrying out assessments for the care management team. It is the duty of the local authority under the NHS and Community Care Act 1990, Section 47, to carry out a comprehensive assessment of needs for community care services. Also, on grounds of her age (anyone over 16 is entitled) and because the person cared for is over 18, under the Carers (Recognition and Services) Act 1995, Marta is entitled to an assessment in her own right as carer. This assessment will determine how able Marta is as carer.

A number of questions are generated by the process of evidence based practice. These are practice-linked (Key Questions) and evidence-linked (Research Focused).

Key Questions

The practice-linked questions broadly follow the sequence of the evidence-based approach, focusing in turn on theories and concepts, needs, outcomes and services. In other words, they illustrate the ideal process the social worker goes through of clarifying what the situation is about, seeking information about the needs of the person receiving services, identifying the level and intensity of the justification for intervention and specifying the response, in terms of services provided. This suggests three separate but linked questions, embedded in the practice throughout this case:

  • What did the social worker consider?
  • What did the social worker decide?
  • What did the social worker do?

Moving on, here are the key questions triggered by this paragraph, bearing in mind this is a preliminary list, before the social worker proceeds, largely focused on clarifying how to proceed further:

Preliminary Questions

At this preliminary stage, and certainly before assessing begins, the practitioner needs to ask:

  • What are the apparent circumstances and what may lie beyond what is presented to me?
  • What information do I need to proceed further?
  • Have I permission from the client - in this case other family members - to seek further information from other sources and share it with others?
  • Do I need to explain my role in a multi-disciplinary team and that this implies information is shared between practitioners within the team?
  • Can I have permission from family members to contact Primary Care, since the parents have been in England for many years?
  • Am I sure about the level of intellectual functioning of Kristina?
  • Should I take the label of 'mild Down's Syndrome' supplied by Marta for granted or probe for a medical/psychological assessment?

Further Questions

Values-based Questions

Values questions come first and arise from the social worker's personal and professional beliefs and assumptions. These will be threaded throughout the work the practitioner does with family members:

How can the practitioners work so as to ensure respect for persons, inclusion, independence and choice?
How can the practitioner manage tensions, and even contradictions, between accountability to the law, agency policy and procedures with commitment to an emancipatory approach to research and practice in work with disabled people?

For example: An emancipatory research-based approach to practice would share responsibility from the outset with people receiving services for tackling the following questions:
What should we research?
How should we research it?
What key messages from the research?
How best should we share these, learn from them and use them in better practice?

Fuller discussion of issues arising in relation to using an emancipatory research approach in work with people with disabilities is found in Ward and Flynn (1994, pp. 29-48).

Practice-led Questions

Complicated situations generate very long lists of questions. The social worker should not be put off making a long list of questions at this beginning stage. Some can be tackled more directly and quickly. Others may be kept open as a reminder of continuing uncertainty about aspects of the situation.

  • What are the likely dynamics of power between Tom - as social worker - and family members?
  • What should happen next in order to ensure family members are empowered?
  • Who in Marta's household - Marta, Jan or Kristina, or all three - has the information Tom needs in order to move forward?
  • Are there other sources of information, including Primary Care professionals such as the GP, neighbours, and friends?
  • At face value, what needs does Kristina present?
  • If, as Marta implies, Kristina has a learning disability and Jan is physically disabled, should Tom be considering involving an advocate for one or both of them from this early stage?
  • Before Tom and the agency decide to proceed, what are the apparent needs of Marta and her family?
  • At this stage, what are the likely risks to members of Marta's family? What are the likely protective factors?
  • At this point, what are the thresholds of concern? That is, how serious is the risk of harm to one or more family members, if the agency takes no action to intervene?
    Note: Even if the practitioners believe thresholds are not reached (this is unlikely in this case) policy normally requires them to assess.
  • What contribution can the social worker make, in the multi-disciplinary team? Apart from emphasising the value base and practice issues associated with the user-led approach to disability, the social worker seeks the strengths in the circumstances of family members.
  • How can the social worker encourage and build on strengths?
  • What strengths are there in this family? Identifying and building on strengths involves:
    • identifying what people have achieved
    • encouraging and building on Win-Win situations, where everybody gains from a decision or action.
  • How can the risks be coped with so as to meet the expectations and hopes of Kristina and her parents?
  • What practice needs developing in order to avoid contravening Vulnerable Adult policies (concerning Adult Protection)?
  • Can the social worker share and hold some of the risks, rather than practising purely defensively?
  • What outcomes are the social worker and colleagues likely to seek to achieve? What are the likely objectives, given the desired outcomes? Over what timescale are they likely to seek these?
  • What are the practitioners' legal duties, powers and responsibilities?
  • How does the social worker ensure the practice is according to
    • values and ethical standards
    • cultural, religious requirements
    • agency policy e.g. on confidentiality
    • National Occupational Standards
    • National Service Framework (NSF)
    • Codes of Practice for Social Care Workers and Employers?
  • What combination of services provided by which agencies do we envisage will achieve the agreed objectives and outcomes?
    Such questions are likely to be answered by discussion between team members and the lead care manager. These reflections are likely to generate further questions:
    • Am I the appropriate practitioner to take on the case?
    • Should a health practitioner do the assessment?
    • Despite the additional complications it creates, should a separate practitioner be allocated to each family member, with co-ordination to ensure individual as well as the family's needs are met?
    • If it is decided I should be the keyworker, can I work with a practitioner from a health background, e.g. a district nurse, in view of Jan's diabetes, for instance?
    • If a health practitioner is working with me, what other information can they help me with?
  • It is likely I and my colleague/s will feed back to the multi-disciplinary team (MDT). At that level, the team will decide which practitioners from which disciplines should be involved and who should be the keyworker. Questions likely to be taken into account include:
    • What issues of gender are there?
    • What ethnic origin are family members?
    • Are any family members black and if so should at least one black practitioner be involved?
    • Are there issues about culture and language?
    • If so should a worker be involved from a similar cultural and language background to the family member/s?
    • If the practitioner is from a different background, are family members happy for the assessment to proceed on this basis?
    • In this particular case, even if the family appear happy for the practitioner to proceed, what cultural factors are there?
    • What steps should I as practitioner take to prepare myself, inform myself about Polish issues, related religious, cultural and migration issues, for instance, before proceeding with the work?

Research Focused Questions

We turn now to the kinds of evidence which will link with, or back up (if we are fortunate) the thinking, decisions and actions of the social worker about whether, and if so how, to proceed. You should bear in mind the evidence based approach is just that, an approach, not an answer. Research-mindedness is an attitude to cultivate. Just as research findings often are complex and generate further questions and debates, so practice cannot rely on them to justify decisions and actions and close doors to further discussion and doubt. Research will make those discussions better informed.

At this point, we need to recognise different sorts of evidence relate to and are inherent in practice. Some relate to values, others to concepts and knowledge and others to skills. They are all research-based, and thus constitute the evidence justifying practice. But the messiness and complexity of the situations social workers deal with means there is no single piece of scientifically conducted research, with proven results, which guarantees that doing the job this or that way will produce the desired outcome.

Values Questions

  • What perspectives on disability inform the variety of practice in relevant agencies?
  • Which model or approach to working with disabled people - medical, social or rights - is most likely to empower them and their carers and maximise their independence?

Practice-led Questions

  • What are the main factors predisposing disabled family members to risk?
  • Is there sufficient knowledge to hand about how Vulnerable Adult (Adult Protection) affect work with this family and with Kristina in particular?
  • What are the main factors affecting the performance and quality of life of carers for disabled other family members?
  • Are there indications of poverty in this family? How should the social worker respond to indications of poverty in the family? Tom may need to contact the Welfare Rights Department in your agency. Or he could arrange for a family member to contact the local Citizens' Advice Bureau (CAB) office.
  • What legal knowledge is necessary to work with disabled people and their carers?

Skills-related Questions

  • How do we judge the risks of significant harm?
  • Who is the client in this case (Kristina, Marta, Jan or all three), and whose rights should take precedence, the rights of the disabled person or the carer?
  • How best can the needs of the parents, as older carers, be met and their situation, as possibly neglected carers, valued?
  • What person-centred assessment tool might be best in this situation?
  • How should Vulnerable Adults work be carried out?

Relevant Knowledge

The particular value of grounding practice in research is that it reinforces critically reflective practice rather than an unthinking practice which does not go beyond a slavish adherence to guidelines and standards. (Chapter 1 of Adams, Dominelli and Payne 2002, pp1-12). Such critical practice celebrates diversity rather than reluctantly acknowledging it.

Carl Rogers (1984) makes a relevant comment about adopting procedural methods without a commitment to questioning and criticality which is at the heart of research-mindedness. In the account of the process of therapy in chapter 3 of his classic book on client-centred therapy, he states 'the counselor who tries to use a "method" is doomed to be unsuccessful unless this method is in line, or congruent, with his own attitudes' (p. 19). Note: Congruence is that state of being where the worker's thoughts and feelings correspond with his or her actions towards the client.

Rogers shows how on one hand, too great an emphasis on techniques at the expense of genuine empathy between the worker's and the client's circumstances, and on the other hand, an empathy for the client without knowledge of techniques, does not make for good practice. A balance is necessary between attitudes and knowledge.

Person-centred theories

Person-centred theories are influenced greatly by the writing of the humanist, Carl Rogers (Rogers, 1961, 1965). Rogers formulated conditions necessary for effective therapy. Malcolm Payne summarises these conditions as 'clients should perceive that workers act as follows:

  • They are genuine and congruent in their therapeutic relationship (that is, what they say and do reflects their personality and real attitudes and is not put on to influence clients).
  • They have unconditional positive regard for clients.
  • They empathise with clients' views of the world.' (Payne, 1997, p. 178)

The strengths of person centred theory are twofold:

  • It focuses on the present, whereas theories of abuse, self-abuse and loss draw on the past.
  • It empowers the person using services and the carer to take control of their own circumstances.

The weakness of person-centred theory, Payne notes, following Patterson, (1986), is that there is not sufficient evidence to prove it works. Also, 'unconditional' positive regard may be viewed as unrealistic in a social worker's relationship with a client.

Person-centred planning

Person-centred planning is the process of practitioners, people using services and carers, working together to make changes that will improve the service user's quality of life.
Person-centred planning is a requirement in the Department of Health policy document Department of Health (2001) Valuing People, London, Department of Health. This emphasises the elements of the important Valuing People policy.
One important source for discussion of the person-centred approach to planning, when working with disabled people, is Sanderson, H., Kennedy, J. and Richie, P., with Goodwin, J. (1997). Practical guidelines for everyday work also can be found in Martis (2000, chapter 4 pp. 25-45).

The evidence base for work with disabled people is contested.

The complexity and untidiness of situations social workers deal with requires that the evidence-based approach relies on the practitioner drawing both on evidence and experience. If you have more experience and more knowledge of relevant evidence, you may be able to tackle the above questions without reference to further information. We can delve into each of these questions at length. Here are some selections from the issues raised, with indications of key reading should you wish to pursue a particular area further.

There is a diversity of models and approaches to working with disability

The values informing practice do not come in a single package, agreed by everyone. The two main sets of models and the diversity of approaches around these reflects this lack of consensus. They are medical and social models. There is no single set of beliefs and practices associated with one model, rather a cluster around each label.

Medical models

These focus on the impairment of the disabled person, in contrast with the so-called 'normal' person. According to medical models, the practitioners know best. They are likely to proceed to diagnose the problem, only referring to Marta, Jan and Kristina when information is required from them. They will 'prescribe' what is best for Kristina, based on their expert assessment.

Social Models

There is not one social model, but a number of linked ideas derive from the general argument that disability is socially constructed, partly from social factors and in part, perhaps, from biological differences between disabled and non-disabled people. These biological differences may be very minor. In one sense, no person is without them. It is a matter of what societies define and how cultures reject aspects of bodily life. Differences of age, race and gender may add to the discrimination experienced by people with disabilities.

Social models tend increasingly to be associated with activism and advocacy by disabled people, on their own behalf, campaigning for social justice. Ideas of justice are linked with emancipation or empowerment, rights and equality of treatment with non-disabled people.

Some arguments based on a social model take a social constructionist view which locates the 'problem' in the minds of people. Others take a social creationist view which targets the institutional practices of society. It is valuable to read Oliver on these and other associated perspectives on social models of disability (Oliver, 1990, pp. 22-3; pp. 82-3).

Since the mid-1970s, Britain's Union of Physically Impaired Against Segregation and, from the late 1980s, the British Council of Disabled People, have campaigned as disabled activists to redefine disability. This redefinition involves the awareness that over and above a person's medically defined impairment, their disability exists because society disables them. They are isolated and excluded from taking part in society (Oliver, 1990; Race, 2002).

Dilemmas arise in using the social model. It is acknowledged the model needs to be developed to take account of discrimination and prejudice in language, how disabled people are described and referred to and socialised (Fawcett, 2000, p. 23). But some critics argue while it is positive that the social model is beginning to tackle issues of difference, diversity, race, class, age, sexuality and gender, highlighting particular groups of people with disability stigmatises them further.

Rights and Equality

Movements and organisations of disabled people have incorporated campaigns for rights and equality of treatment by disabled people, for disabled people. These are based on the three components of

  • disabled people achieving empowerment and equal rights with others throughout the community.
  • disabled people not being seen as subject to special procedures just because of their impairment
  • achieving justice for disabled people.

Since the late 1990s, the Government has adopted inclusion as a policy to combat exclusion of some individuals and groups of people. Oliver and Barnes argue people's struggle for independent living implies a need for greater rights to services as well as legally enforceable grievance procedures to complain about shortcomings in services (Oliver and Barnes, 1998, p. 41).

User Emancipation/Empowerment Model

According to the equality approach, and campaigns by many disabled individuals and groups, the issue should not be how much welfare they are given. Community care is a matter of civil rights for disabled people.

From these social, equality and rights-based approaches, a shift to critical social research and action research, by and for disabled groups has developed.

Disabled people have campaigned to abolish discriminatory practices which treat them as different, and as less equal, than other people. They have had some success in arguing for equal rights with other citizens and participation in society on an equal basis.

This has led to what Barnes, in an article, refers to as the Emancipatory Disability Research Paradigm. (Barnes, 2003, p. 5) He discusses this in more detail later in the same article (Barnes, 2003, pp. 7-14).

Rights In her book on ethics and values in social work, Sarah Banks devotes Chapter 5 to clarifying ideas about the rights of people using services. (Banks, 1995, pp. 94-117). She points out the mixed outcomes of promoting users' rights. On one hand, there is increased participation by users in decision making. On the other hand, managers and practitioners may be so preoccupied with ensuring that all parties have their say that the procedures become the end rather than the means to an end. So progress creates further dilemmas and complications rather than simplifying the situation.

Equality Neil Thompson's useful book about the diverse ways of promoting equality highlights a paradox at the point where practitioners have to use legal powers to intervene. He points out that it should be possible to work in partnership with people even in situations where compulsory powers have to be exercised by the social worker (Thompson, 1998, p. 213).

Discrimination and Disability

Joan Orme's research into gender and community care is published in a major book (Orme, 2001). It is useful as a means of raising critical awareness of the need to develop equality of opportunity and access in relation to services.

It is necessary for the social worker to have an understanding of ways in which discrimination persists in society, and how this is reflected in practice. Awareness of discrimination needs to embrace diversities such as age, gender, sexual orientation, race, religious belief and disability. These should not be allowed to contribute to divisions between people and inequalities in services.

Disabled people from ethnic groups or who are female may experience double or triple discrimination, or as is sometimes said, double or triple jeopardy.

Discrimination in terms of race

The White Paper Caring for People (DoH1989) makes reference to the need for members of ethnic communities to be consulted to ensure services respond to their needs (Orme, 2001, p. 50) Race discrimination may be challenged under the Race Relations Act 1976.

Discrimination in terms of gender

Orme notes that although sex discrimination is subject to legislation, there is no similar legislation covering gender-based discrimination. There is no acknowledgement under the NHS and Community Care Act 1990 that women and men may have different needs. There is no requirement that women as users and carers should be consulted as part of the care planning process.

Adult Protection

Vulnerable Adult policies arise from legal and policy requirements that adults are protected from abuse.

Direct Payments for Services

One success for disabled people as self-advocates has been the granting of the right to direct payments for services which they can then organise and pay for themselves. Independent organisations run by disabled people have been influential in shaping policy and practice. For instance, they employ advocates to implement direct payments to disabled people under the Direct Payments legislation. Such work may be funded by the local authority from its community care budget. Independent Living Advocacy (ILA) is one such organisation, but there are many others, which can be sought in each locality.

Direct payments to the disabled person may be made under the Community Care (Direct Payments) Act (1996) and since April 2003 are required under the Health and Social Care Act (1991). Limitations in practice, though not in the spirit of the legislation, may include the fact that direct payments only used for services assessed as necessary and may not be used to pay relatives for caring. The Carers and Disabled Children Act 2000 extends direct payments to carers for young people aged 16-18. Under this legislation, direct payments have been extended to informal carers like Marta who qualifies on two grounds (caring for Jan) and (over 65).

The assessment process is driven by principle of equality and directs attention to aspects where a person may need assistance. These include advocacy, access to education, access to transport and access to work. There is recognition also that a person may need to employ a personal assistant (PA).

Jon Glasby and Rosemary Littlechild (2002) have written a useful book examining the barriers to implementation of direct payments.

Independent Living

This principle is linked with notions of choice, flexibility and control by the disabled person. It contradicts the traditional segregation and institutionalisation of disabled people. Independent living takes place where the person exercises the full range of human and civil rights and freedoms in society.

Carers and Personal Assistants (PAs)

Morris (1993) found care management delivered services which gave disabled people little autonomy, choice or control over their everyday lives and excluded them from participating in the community. She pointed out caring frequently becomes coercive and leads to restrictions in the autonomy of the person receiving the care.

Whereas the Carers (Recognition and Services) Act 1995 gave carers the right to an assessment where the person was being assessed, this neglected to guarantee the independence of the disabled person. The Carers and Disabled Children Act 2000 extends the right to all caring situations and requires the local authority to provide services to meet carers' needs.

The national strategy for carers (DoH, 1999) concentrates on attracting carers back into paid work. Some argue it would be preferable to provide a wage for carers as a way of formalising their crucial role in community care. Others assert disabled people should be compensated as of right, for their disability. Agency policy is often not to give services directly to carers, but via grants to local carer support agencies. Users' directly provided services all form part of the care package.

Independence and autonomy: a critical view

The principles of independence and self-reliance which drive policies and practices forward should not be accepted uncritically. Susan Wendell (1996) writes brilliantly and movingly of her experiences, developing a feminist critique of the widely accepted view that autonomy and independence as moral ideals are the standard by which the lives of disabled people should be judged (see chapter 6 pp. 139-63). She points out this can be a great burden to people with disabilities, can reinforce stereotypes and the harm done by people with power over them (Wendell, 1996, p. 148). She argues that women's experience in child rearing and home-making is more connected, reciprocal and interdependent with others than it is autonomous and independent. In developed countries, almost universal dependence on the supply of water, electrical appliances such as washing machines and help in the garden and with home maintenance are taken for granted, whereas dependence in areas such as restricted mobility, toileting and bathing may be defined as heavy dependence.

Wendel makes the important point that we should question the assumption that people cared for are passive recipients and the carers do not need care. This simplification obscures the real needs of caregivers and the reciprocal nature of care-giving and receiving (Wendell, 1996, p. 142).

Community care policies in tension with independent living

Principles and practices of independent living are in an uneasy relationship in some ways. Budgetary limitations and the application of rationing, for instance, tends to rule out any payments except those where the person's safety is at risk. This undermines people specifying their own needs. Also, there is a tension between the goals of monitoring and maintaining accountability of services with the goals of promoting choice by the user and flexibility.

Assessment is the process of gathering information and reaching an understanding of a person, group or family in relation to their circumstances and environment.

The assessment of Marta's circumstances is carried out with her full participation. The process was laid out in the wake of the NHS and Community Care Act 1990, by the Social Services Inspectorate (DoH/SSI 1991). This was foreshadowed by the Disabled persons (Services, Consultation and Representation) Act 1986. This required the assessment to take into account the ability of carers who care for the person on a substantial basis. Since March 1991, the implementation of the Carers and Disabled Children Act (2000) gives carers the right to be assessed as long as they regularly provide a significant level of care to a person over 18. Marta and Jan have the right to help under the Carers and Disabled Children Act 2000, even if Kristina declines statutory support. Some local authorities specify the hours of "regular and substantial care" necessary to qualify. Others provide it to carers regardless of hours, assessing the quality rather than the quantity of emotional and physical caring provided by carer/s. Throughout the process leading up to, during and after the assessment, there is a need for communication with carers throughout in language which consists of the kinds of words and phrases they use themselves.

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