Stage 1 - Beginnings
- 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
- 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
A number of questions are generated by the process
of evidence based practice. These are practice-linked (Key Questions)
and evidence-linked (Research Focused).
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
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
- 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?
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
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
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).
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
- 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
- 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
- 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
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.
- 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?
- What are the main factors predisposing disabled family members
- Is there sufficient knowledge to hand about how Vulnerable Adult
(Adult Protection) affect work with this family and with Kristina
- 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?
- 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?
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
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 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 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
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
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.
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.
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
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
- 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
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
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
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
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.
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).
Glasby and Rosemary Littlechild (2002) have written a useful book
examining the barriers to implementation of direct payments.
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)
(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
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.