Transcript Document

Challenges for the Advocacy
Sector: Observations from other
places
Paul Ramcharan,
Lecturer, Division of Disability
Studies, RMIT University
Who might make these decisions and
impose them?
– A boy with Aspergers Syndrome has been prevented from looking
over into a neighbour’s garden
– A fifteen year-old with Tourette’s Syndrome has been banned
from swearing in public
– A ban on playing on a trampoline has been threatened for a
teenage boy on the autistic spectrum because the noise he
makes while playing is upsetting the neighbours
From: Ramcharan, P., McClimens, A. and Roberts, B. (2006) Out of Order, Community Care, 2228th June, pp34-35.
Adults with intellectual disabilities in the UK in
2003/4 – Some outcome indicators
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92% single
17% had a paid job
18% in an ordinary class in an ordinary school
31% had no contact with friends
43% had been bullied at school
32% did not feel safe in their own homes
7% had children but in 50% of cases the children were looked after
by someone else
From: BRMB Social research, Eric Emerson and Central England People First (2005) Adults with learning
disabilities in England 2003/4, available from www.ic.nhs,uk
• No data on complaints to services
• No central data on types of advocacy inputs or outcomes
• No data on effect of Human Rights Act
What I will do in this paper
•
Make some observations about the ways in
which advocacy has developed in the UK
and about the parallel work of disabled activists
•
Give some examples of how the advocacy
movement is operating in the UK now.
•
Examine some of the issues that have arisen in
modern formulations of advocacy.
•
Draw some conclusions that may contribute to
the agenda of this conference and to the wealth
of advocacy experience and knowledge already
represented here.
Self advocacy, rights, citizen
advocacy, systemic
advocacy, peer advocacy…
Early UK History – Phase 1: Reaction (Mid-late 1970s to
1986)
1.
In some ways advocacy for people with
intellectual disabilities came ‘ready-made’ for
implementation
2.
It was backed by strong principles (normalisation
and social role valorisation) and even stronger
mechanisms to maintain compliance – SRV
training, PASS (-ING) and CAPE with significant
techniques of cognitive dissonance for detractors.
3.
As a result a number of self and citizen advocacy
groups were set up and there was a patchy
growth of projects across the UK, (though more
systematically in Wales).
4.
A smaller number of professional advocacy,
parent/carer advocacy and peer advocacy
projects also emerged
• Lots of self
advocacy
• Lots of
citizen
advocacy
Early Issues for advocacy groups
• Keeping it ‘pure’
• What works?
• Maintaining independence and
avoiding conflicts of interest
• Establishing from experience, the pros
and cons of different advocacy models
• Issues around coverage both
geographically and in terms of those
with different support needs
• Simply maintaining funding and doing
so from independent sources
• All over the
UK
Disabled people and activism
In the mean time:
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1976 - Union of Physically Impaired Against
Segregaion (UPIAS) made a distinction
between impairment and disability.
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Established themselves as ‘disabled people’,
i.e. people disabled by the actions of society in
ways that exclude them
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1983 - Michael Oliver coined phrase ‘social
model’
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Disability activist model developed which
aimed to lobby for change at Governmental
level based upon social model principles
Disabled people fight for
their rights and tell the
Government what they
want
Phase 2 – Rappochement (1987 to around 1996)
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Growing acceptance of the
importance of advocacy by
government and local authorities,
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Expanding commitment to funding
at local level mostly from statutory
sector,
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Rcognition of the value of different
forms of independent advocacy
A rapprochement (coming together
of views) around the need to lobby
for the expansion of advocacy as
a whole. However key issues
remained.
• Advocacy accepted
as good 
$$$$$$
Advocacy issues during this period
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Continued patchy growth of advocacy
projects geographically and no central
advocacy body or policy.
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The place of support workers to self
advocates
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Tying of advocacy to the service and
policy agenda through participatory
mechanisms
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Issues of representation and
democracy
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Issues around the evaluation of
schemes (which continues up to
today)
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Issues around capacity, choice and
decision-making for those unable to
speak for themselves
Not over whole country
What is good support?

X
Who speaks for whom?
Meanwhile…Disabled People and activism up to 1996
• Publications about oppression
such as ‘Walking into
Darkness’ (Oliver et al., 1988);
‘’Able Lives’ (Morris, 1989)
Books about discrimination:
And shouting for rights
• British Council of Disabled
People – Study of
discrimination and
disadvantage (Barnes, 1994)
was used in pressuring for the
Disability Discrimination
legislation (1995 and 2005)
and setting up of the Disability
Rights Commission
• Study of Independent Living
Fund led to Direct Payment
legislation in 1996
Led to new Disability law
Advocacy – a model
Conceptualising
Ideas of needs
wishes and
entitlements
Knowing personal
needs wishes or
entitlements
Articulating needs
wishes, entitlements
or infringements to
them
Have articulations
heard
Having needs,
Wishes heard,
entitlements met,
Or redress for
infringements to rights.
Sustitute
Decision
making
required
Representation
(Adapted from Ramcharan, 1997)
participation
Ownership
Phase 3 Reorganisation and Development A model of contemporary UK issues
OK – Let’s see some of the issues with
participation
Valuing People, 2001
It was written in 2001, and it was the first
White Paper (policy) for people with
learning disabilities for 30 years. It covers
England.
It is based on people having:
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their rights as citizens
•
inclusion in local communities
•
choice in daily life
•
real chances to be independent
•
It was written with help from people with
learning disabilities, family carers, and
people who work in services or other
organisations for people with learning
disabilities.
Valuing People
• It came with an easier
to understand
version, as well as a
report from the
service users
advisory group called
'Nothing about us
without us',
Valuing People - Government policy
Valuing People Support Team
(Rob Greig and Nicola Smith)
Task Force
112 Local Authority
Partnership Boards
Includes representatives from
all services and service sectors
Family carers and people
With intellectual disabilities.
Local services
Valuing People – Commitment to Advocacy
‘Advocacy helps people put forward their views and play an active part in
planning and designing services which are responsive to their needs. Both
citizen advocacy and self-advocacy are unevenly developed across the
country. Barriers to future development include: insecure funding: limited
support for local groups; and potential for conflicts of interest with statutory
agencies who provide funding. This must change’, (Valuing People, Paras
4.5 to 4.7).
And
‘to have a range of independent advocacy services available in each area
so that people with learning disabilities can choose the one which best
meets their needs.’
• $3.25m per year over three years for development of self- and
citizen advocacy.
• January 2007 to December 2008, £900,000 will be given out each
year.
Other UK legislation and advocacy
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Making it Work. Social Services Inspectorate (Sept 2001), Building
Capacity and Partnership in Care – An agreement between the
statutory and independent social care, health care and housing
sectors. Department of Health (Oct 2001), Domiciliary Care
Standards Consultation.
• The Mental Health (Care and Treatment) Scotland Act (2003) - gives
people with a ‘mental disorder’ the right to access independent
advocacy and places a duty on health and local authorities to secure
its availability.
However, Sections 1 and 2 of the Disabled Persons Act (1986), which
would have given people with a disability the right to advocacy, have
never been implemented.
UK advocacy policy participation framework
• The National Forum works with the
Learning Disability Task Force and has
the job of telling the Government how
Valuing People is working for people
with learning difficulties.
• The National Forum is made up of a
group of about 25 people
who represent the nine regions of
England.
How the process works – An example
Local advocacy groups were alarmed at the number of people who had said they had
been the victims of crime. A national report found that 34% claimed to have been a
victim of crime, abuse and hate crimes in the past year. This was reported to the
Regional forum
Some Minutes from a Regional Forum:
The Crown Prosecution Service
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The Crown Prosecution Service want to know what you think about their ideas as to
how they will prosecute people who carry out Hate Crimes against people with
learning difficulties.
Helen and Jane are going to ask for an extension of the consultation time so that
people with learning difficulties can respond
ACTION
• To invite someone form the Crown Prosecution Service to the next National Forum
meeting
Task Force Minutes
National Forum Feedback:
They asked Task Force members, in their
groups, to think about some of the main
things on the Forum's plan:
• What would happen to Valuing People after 2006
• Transport
• Autism
• Hate Crime
Hate Crime
• Mary said that every council has to make a crime and
disorder strategy. These are then sent to the Home
Office. Maybe the Task Force should see how it could
get involved in that process. It might be a good idea to
ask the Home Office official who came to the June 2004
meeting to come to the TF again.
• The Employers Forum on Disability has a Police
Disability Network. They could be asked to send LDTF
10 March 2005 out messages about learning disability
and hate crime.
• Karen said that Victim Support Schemes do not always
understand how to help people with learning disabilities.
Criticisms of the participatory model
Stop! Not my view. Not my
interest
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The model ties advocacy to the Government’s
agenda and hijacks the independence of voice
necessary to push for political change.
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Despite an emergent diversity this form of advocacy It leaves some people out
favours those who speak best and shout loudest.
This is another form of dumping and creaming
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The contributions of advocates have been observed
to reduce in areas relating to wide scale strategic
Some things are hard to
understand for most
thinking and complex funding issues and increase
people
?
around issues in which they can become involved
e.g. the management and evaluation of services.
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Criticisms of the participatory model
• Cost of funding participation
and trained support workers.
• The emergence of an
intelligentsia of unelected
people with intellectual
disabilities seemingly
representing a group as their
constituency.
• Resolving public issues may
change services but not
individual problems here and
now. Other forms of
advocacy are therefore also
needed
Too costly
$$$$$$$$$$$$$$$$$$$$$$$$$$$
I’m telling you what you want!
People still have problems that
nobody ever knows about!
Representation and substitute decisionmaking
Issues around representation and substitute
decision-making
• There are still few good solutions to establishing
choice, preference and aspiration for people
unable to speak for themselves.
– Work with ‘non-negotiables’ so that over time
preferences can be identified and personal rights
established
– Work with circles of support so that the interests
of those who love and care for the person are
represented in major decisions (a key element of
person centred planning)
– Work on a model of supported advocacy and
decision-making
– Maximise client directed advocacy
How do we know
what some
people want?
But
• The UK Mental Capacity Act 2005 although assuming
capacity until otherwise proven, still does not recognise
models of distributed decision-making in any form unless
legalised through the appointment of an independent
mental capacity advocate, lasting or enduring power of
attorney.
• Outside these legal authorities there remains little clarity
over what constitutes ‘best interest’ where a person is
unable to speak for themselves.
• Because of this, unless there is an issue the majority of
life’s decisions are left untouched. This of course means
that there may be substantial infringements of rights
which remain unknown and not addressed.
‘One Law for All’ Study
Findings
Despite Human Rights Act, barriers
to justice remain:
– Access to legal process (poverty,
physical barriers, lack of
advocacy, lack of legal
assistance)
– Police do not understand people
and policy
– Complaints procedures remain
inadequate and illusory. People
with intellectual disabilities have
difficulties understanding and
communicating complaints.
– Staff do not seem to see the
complaints process as worthwhile
because complaints represent a
conflict of interest, it is
bureaucratic, it is not taken
seriously, fear that they will be
seen as trouble-makers.
POVERTY and DISADVANTAGE
Police don’t understand and courts
don’t hear
Staff can still turn their backs to
problems
One Law for All’ Study
Findings (Cont’d)
• ‘One of our key conclusions is that
the role of the independent
advocate is crucial in ensuring
‘equality of arms’ between service
user and organisation being
complained against’ (Finnegan
and Clarke, 2005: p.41)
Finnegan, P and Clarke, S. (2005) One Law for
All: The impact of the Human Rights Act on
People with Learning Difficulties. London: VIA
More
advocacy is
needed!!
Ownership
Successes and issues with independent advocacy
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Disability activists had a key role in pressing for the
Disability Discrimination Act, The Disability Rights
Commission and for the implementation of Direct
Payments
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The independent disability lobby especially BCODP has
been a prime mover in the development of the social
model
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There have been some moves towards an alliance with
the People First (independent self advocacy) movement
and the disability lobby. However, there have also been
difficulties in developing a shared agenda. Despite a
respect for diversity there can still be divisions.
•
Some have argued that there is a small group of people
holding disproportionate power and that they do not
represent the views of all people with disabilities and,
more specifically for people with intellectual disabilities.
But the rights agenda has some problems!!!
Because of what
disabled people have
said, laws have been
changed
People have more
rights
The UK Human Rights agenda
I asked earlier about the following cases
– A boy with Aspergers Syndrome has been prevented from
looking over into a neighbour’s garden
– A fifteen year-old with Tourette’s Syndrome has been banned
from swearing in public
– A ban on playing on a trampoline is threatened for a teenage boy
on the autistic spectrum because the noise he makes while
playing is upsetting the neighbours
Any Ideas?
Background to Human Rights
• UN Declaration of Human Rights, 1949
•
Europe Convention for the Protection of Human Rights and
Fundamental freedoms, 1950 (better known as European
Convention on Human Rights).
• In the UK the Convention Rights were not incorporated into National
law.
As such,
• Human Rights Act, (HRA), 1998 – operational in England and
Wales, in October 2000.
• Hailed as most important legislation since Magna Carta in 1215.
Main provisions of HRA.
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Article 2 – right to life
Not to be treated or punished in a cruel way
Not to be treated like a slave at work
To be free and safe
Fair treatment in court
Respect of family and private life
To have a religion and own ideas
To say what you think
To meet other people
Not to be treated badly because of race, gender,
disability or other reason.
Intention of HRA
1. The direct prosecution of cases when
there has been a denial of a person’s
right under the HRA
2. The development of a Human Rights
culture reflected in wider society
(questions here about the ability of the
law to bring about social change)
Universal applicability of rights
• An issue is that rights in the HRA apply to
all equally.
• A young man with Asperger’s Syndrome
looking into a neighbour’s garden:
– His right to freedom and not to be treated
badly because of a disability, the right to meet
other people
– Neighbour’s right to privacy and family life.
There can be problems with human rights
•
Rights of disabled and nondisabled are equal
My rights
=
• Sometimes the courts decide in
favour of the non-disabled
person
?
• Sometimes this is hard to
understand
?
Anti-Social Behaviour Orders
• Implemented in 1999 as part of the UK Crime and
Disorder Act
• Central plank of crime and community policy
• Empowers communities against,
‘a whole complex of thoughtless, inconsiderate or
malicious activity’
To
‘prevent an individual or individuals from causing alarm,
harassment or distress to the community.
ASBO
• People with intellectual disability 4.5 times
more likely than general population to
have an ASBO applied (Ramcharan,
McClimens and Roberts, 2006)
Why should this be so?
Nature of Applying ASBO
• It is not necessarily actual behaviour but that the
behaviour ‘causes distress’ that counts. Indeed,
‘Witness evidence need not prove that they
were alarmed or distressed themselves, but only
that the behaviour they witnessed was likely to
produce such an effect on others’, (Home Office,
2002; p.27.)
• This is an invitation to NIMBYs to create
evidence against those seen as different
Level of Evidence
• Evidence acceptable at civil level and no
necessity to prove intent
And
• A case is built by the police on the basis of a
complaint and can include hearsay evidence
• The outcome of ASBO type legislation is that
‘…discipline produces subjected and practised bodies,
‘docile’ bodies’ (Foucault, 1972:138).
• When viewed from this angle the ASBO becomes yet
another mode of regulation. It is, however, more subtle in
that it allows behaviour to be enacted before imposing
the threat of any sanction. And crucially it has done away
with the need to employ prison guards. We, the public
along with the institutional arms of our civic society, are
all now unpaid employees acting in the capacity as
agents of control.
In short
• Human Rights Legislation has a positive ring to it but remains
problematic in a number of respects.
• Human rights legislation sometimes fails where there are gaps filled
by other laws based upon different philosophies and values. (One
example in the UK is the introduction of the ASBO).
• As society begins to ‘police itself’ we are moving from the warmth of
twentieth century philosophies of ‘community care’ to twenty first
century systems of ‘community control’. This represents a
countervailing tension when set against legislation around human
rights.
• And if it is anywhere necessary for the arms of state to be working it
is protecting equality of arms under the law and in managing the
excesses of the implementation of different points of view within a
civil society, and protecting its most vulnerable members.
The good news
1.
There is a growing movement to
see everyday lives as the focal
point for resistance.
2.
There are some truly exciting
moves coming from within the
independent advocacy movement:
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Parliaments – Ten in operation at
last count largely led through selfadvocacy movement
Development of easy words and
pictures dictionaries.
Education, training and consultancy
(human services, universities, police
and communities)
Links with commerce – the mystery
shopper project, consultations with
Chambers of commerce (with 20%
of the population having a disability
they would do well to heed this
voice!!)
Disability art, theatre and writing.
Emancipatory and participatory
research
Parliaments
Education and teaching by people with
intellectual disabilities
Theatre and the arts
Research
Some conclusions - Evaluation of
advocacy
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One of the most important concepts underlying comparison is
that like is compared to like.
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It has been established in this talk that different models of
advocacy do different things. Comparison is not possible. To
choose between them makes a false choice.
•
To use efficiency or throughput as the arbiter of decisions
around which form of advocacy to support is likely to lead to
creating or at least maintaining disadvantage and inequality
since some advocacy work is detailed and time-consuming
•
Evaluation based solely on any external body’s system of
values and to the exclusion of people with disabilities
themselves, disempowers the movement.
•
Some forms of advocacy which can sustain their own
business interests will ultimately be judged by their
consumers. These may be consumers to whom they sell a
service (e.g. education, training and consultancy) or through
the use of Direct Payments to pay for supports the person
sees to be relevant.
There needs to be a
good way to say how
well advocacy projects
are doing:
Constructing an alignment between advocacy
outcome and advocacy development.
• Alignment between national vision
and outcomes is hard where:
– There is no national vision
– Where the national vision does not come
from people with disabilities themselves
– The processes of achieving outcomes is
not clear
– The collection of broad level data gives no
measure of the relative importance to the
issues that should dictate funding level
and leverage on Government for
additional funding.
– There is no central body supporting
advocacy development
– There is limited funding over which
advocacy needs to ‘fight’
Advocacy
should state
its aims and
how to get
there!
Conclusions
• Phase 3 advocacy as I have
called it requires recognition of
the merit of advocacy based
upon varying models of ‘voice’
• It is still necessary to think
about placing people with
disabilities in the same queue
as everyone else, for housing,
for standard of living, for rights
to medical and health care
interventions and employment
– to make their outcomes
those of the rest of society!
EQUAL LIVES not just EQUAL
RIGHTS!
In the words of Tawney (1952):
‘A society is free in so far, and only in so far as, within the limits set
by nature, knowledge and resources, its institutions and policies are
such as to enable all its members to grow to their full stature, to do
their duty as they see it and – since liberty should not be austere –
to have their fling when they feel like it. In so far as the opportunity
to lead a life worthy of human beings is needlessly confined to a
minority, not a few of the conditions applauded as freedom would be
more properly denounced as privilege. Action which causes such
opportunities to be more widely shared is, therefore, twice blessed.
It not only subtracts from inequality, but adds to freedom’.
Advocacy has the potential to be so blessed. Good luck in the coming
two days in setting the grounds for that freedom through your work.
Thank you for listening!