Memorandum from Values into Action
INTRODUCTION
With this written evidence I wish to submit
the following two publications by VIA:
— One Law for All—The
impact of the Human Rights Act on people with learning difficulties
by Patricia Finnegan and Stephen Clarke, 2005; and
— Rights for All—People
with Learning Difficulties Using the Human Rights Act by Catherine
Bewley with Dave McCann and Denes Birta, 2005.
The stories in these two publications are relevant
even today. People with learning difficulties face the same issues
as they did when the above two publications were written
In this evidence, I will first of all provide
a general overview of why the human rights of people with learning
difficulties are not enforced. Then I have given examples of real
case stories where people's human rights are denied which provides
the joint committee an idea about how difficult it is in reality
for these rights to be enforced. These examples are different
from the ones in the two publications and are more recent.
AN OVERVIEW
People with learning difficulties have the same
human rights as defined in law as anybody else. However, there
are factors that stop people with learning difficulties enforcing
these laws. Some of these factors are as follows:
— People with learning difficulties
are not aware that they have these rights: This could be due
to them not being able to access the information because it has
not been made accessible in a way that they can understand it.
If people do not have the information about the Human Rights Act,
they don't know what their rights are and how they can get support
to enforce their rights. There are people with learning difficulties
who can understand these rights if it is explained to them in
simple words (easy read), some would understand it if the easy
read version is explained with pictures. There are a large number
of people with high support needs who will never be able to access
this information as we have not as yet found a way to do so. For
this group of people having an advocate to speak up for them is
the only way we can come remotely close to their human rights
being enforced in law. The advocate would be in a position to
represent the person with a learning difficulty and has no other
vested interest but to ensure that the rights of the person they
are advocating for are met. I have said later on in this evidence
that funding advocacy on a long term basis is important.
Another really good way of informing people
about their rights is spending time with them and explaining their
rights in a way they understand. If this is done by people who
they trust and who understand them, and there is a rapport between
them, then the message does get across.
I must stress that most people with learning
difficulties would be able to understand these rights if they
are explained in a way they can understand.
— Public bodies' responsibilities
to protect and support people's rights: Although public bodies
have duty of care and responsibilities to ensure that the human
rights of people with learning difficulties are protected, in
reality this does not happen. Public bodies may have policies
that state they protect people's human rights but due to the reasons
given below, these policies are not implemented. It is also important
to remember that at times there might be a conflict between the
human rights of the person with a learning difficulty and the
responsibilities of the public bodies. Making that challenge legally
takes a lot of courage and very difficult to enforce when there
is this powerful large public body that you have to fight.
— People with learning difficulties
are in segregated services: By this I mean people living in
residential care homes, attending day centres and attending special
needs classes at college. This results in people being dependent
on support staff informing them of their rights. In most cases
support staff may not be aware of the Human Rights Act. Although
the target through "Valuing People" was to train 50%
of staff by 2004, this target has not been met. Another important
point to remember is that support staff may not always know about
different legislation that govern their role and may also not
feel confident about sharing this information. Those that live
at home with parents, their parents/carers may not be aware of
the Human Rights Act and so would not be able to support their
son/daughter stand up for their rights.
— People with learning difficulties
do not even get to experience the community in most cases.
They are "bussed" from home to a segregated day centre
and then "bussed" back home. There are no opportunities
for them to learn abou their rights in these circumstances. People
in these segregated services are so "controlled" by
the system that they do not even realise that their rights are
being denied.
— People with learning difficulties
and the systems around them are institutionalised: It is very
difficult for individuals to fight institutional systems and for
people with learning difficulties this is even more so. People
with learning difficulties become institutionalised themselves
and then fear the unknown. Living independently or going to work
instead of going to a day centre are not experiences that most
people with learning difficulty have had. They are not aware that
these could improve the quality of their lives.
— People with learning difficulties
are dependent on their paid/unpaid carers. This dependency
makes it difficult for them to challenge people they are so dependent
on. They know that they need this support to survive now and cannot
visualise that their lives could be different. Even people with
learning difficulties who are able o speak up for themselves may
find it difficult to challenge the person they are dependent on.
They need support to do this.
— People with learning difficulties
are poor: Only a small number of people with learning difficulties
are in paid employment. Majority of them are unemployed and so
live in poverty. This makes them powerless at many different levels.
EXAMPLES WHERE
PEOPLE'S
HUMAN RIGHTS
ARE NOT
BEING MET
Healthcare Services
Dysphagia Service
Article 2: The right to life
Two middle managers in a PCT have been trying
for over eight years to get a "dysphagia" service (eating
and drinking) for people with high support needs. They have written
reports to different senior managers to highlight a lack of service
for this group of people. This group of people have problems with
swallowing and so the position they sit in and their nutrition
intake as well as thickness of food/fluids have to be taught to
medical professionals providing care for them. In this PCT (as
I am sure is the case in other PCTs as well) this service is only
provided if the person is an inpatient in acute services. What
is not taken on board that preventative service can avoid an inpatient
service ad prolong lives. These two middle managers have been
asking for a multi-disciplinary approach involving GPs, Community
Nurses, Dietetics, Physiotherapists and Speech & Language
Therapists. All of these professionals would need specialist training
to prevent chest infections. The result for this group of people
is early death due to food continually getting stuck in their
chests causing constant chest infections. In fact in this PCT
a number of young people with high support needs have died due
to chest infections in the last 8 years ever since these two managers
have been highlighting a need for this service.
Psychology Service
Article 2: The right to life
Article 14: The right not to be discriminated against
Sean, a man in his fifties has had to wait over
two years for a service from a Psychologist. He needs support
to manage his anxiety and his anger. He gets an appointment for
the Psychologist to assess him. A couple of hours are spent by
the Psychologist in taking his history. A long phone call is then
made by the Psychologist to a family member to verify the history
given by Sean. A few weeks later, the assessment arrives through
the post. The only recommendation made by the Psychologist is
that this man should have a Person Centred Plan (PCP). For most
people who have a PCP, it has not changed their life very much
because the resources needed to implement it has not been provided
by Social Services. To get a service you have to have a fair Access
to Care Services Assessment carried out by a Social Worker. So
having a PCP is not going to give Sean any support in managing
his anxiety or his anger. When challenged about his recommendation,
the Psychologist stated that he did not have the resources to
provide a service. This man had to wait over two years to be told
that he would not be getting a service after all. Enabling him
to manage his anxiety and his anger would improve the quality
of his life.
Long-stay hospitals and campus provision
Article 2: the right to life
Article 3: The right not to treated or punished in
a cruel way
Article 5: The right to freedom and to be safe
There are still a large number of people living
in long-stay hospitals and NHS campus provision. Their human rights
are being denied everyday and the abuse that took place at Budock
hospital and Orchard Hill hospital will take a long time to change.
Education
Learning English
Article 8: Respect for private and family life
Article 14: The right not to be discriminated against
Protocol 1, Article 2: The right to education
Most Adult Education colleges have a segregated
service for people with "special needs" and the provision
mainly includes literacy, numeracy, travel training etc. People
with learning difficulties attend these sorts of courses for years
on end. There is no qualification at the end of it. Most of the
people have probably come from a day centre for the session and
will go back to the day centre at the end either for lunch or
to be taken home (bussed) from the day centre. This situation
is changing slowly and courses are geared towards a qualification.
Mina (English is her second language) had been
attending literacy classes for years and learnt the same or very
similar curriculum every year. She is very keen to learn English
and gained lot from the class. The college due to changes in requirements
set up an English language class but the difference this time
was that she would have to sit for an exam at the end of every
term. The tutor made a judgement after meeting her at the open
day that she would not be able to sit for exams so she was not
allowed to take this class. The reason given for this refusal
was that one of their performance indicators was the per cent
of people who passed exams. So to keep up with this indicator,
they would select people who they were sure would pass the exams.
Short notice of next year's courses
Article 8: Respect for private and family life
Article 14: The right not to be discriminated against
Patrick received a letter two days prior to
the Open day from his college informing him about the courses
available in the next academic year. Patrick cannot read and so
was dependent on his support staff to read it when they next came
in to support him. By this time the Open day had gone. Patrick
could not join the course he wanted to attend as that course was
full. His college should have provided this information to him
a month earlier so Patrick would have been able to spend some
time with his support staff working out what he wanted to do.
Housing
A large number of people with learning difficulties
live in residential care homes where they have no housing rights.
Most of the landlords, Social Services legal departments as well
as CSCI and the providers agree that as people with learning difficulties
may not understand what a tenancy agreement entails they should
not be given one. Also if the care home wanted to get rid of the
person for whatever reason it would be easier if they did not
have a tenancy agreement. These people have a right to live more
independently and not in these institutionalised care homes. However,
unless there is a huge investment in housing to enable people
to move from residential care homes these rights will be denied
them.
Housing with Support (Supported Housing)
Article 8: Respect for private and family life
John is in his 30s and at present lives with
his parents. He gets Direct Payments and his parents support him
in employing, managing and supervising staff. John has made plans
to live more and has been working towards it. His parents also
feel that it would be better for them as well as John to leave
parental home so he gets settled in his own home while they can
still provide some support. They don't want to continue with this
responsibility.
John is offered a flat that he will share with
another man, Sean. He knows Sean and they both feel this will
work out. Sean will get his support from landlord's outreach team.
John has been told he needs to be assessed under the Fair Access
to Care Services assessment and for that they need a Psychologist
to assess whether he has a learning disability or not. The family
fear that this is a ploy to cut the services that John receives
now. John has also been told that he will continue to get Direct
Payments for his support so that he maintains his independence.
His parents are not willing to supervise/manage staff who they
will never see. Also within the same house there would be staff
being paid different levels of money. The hourly rate for a Direct
Payment is much lower than the salary that the landlord pays their
Outreach Workers. John and his parents are really worried and
his joy of moving to his own place has turned ito a nightmare.
He has been supported by his parents to get a solicitor involved.
Welfare Benefits
Article 4: The right not to be treated like a slave
at work
Article 14: The right not to be discriminated against
Julia has been in a job at a hospital records
room for 15 years. The job is in the basement and is quite dusty.
This is affecting Julia's health. She would really like a change
and wants to resign. Everybody advises her that she should not
do that as it will be very difficult for her to manage financially
as she will no be able to access benefits for some time. Her salary
is not very good and so she has not been able to make any savings.
She needs time to look for another job and prepare for it. Working
full time does not give her this time. So for now she is stuck
with this job that she no longer enjoys.
Article 14: The right not to be discriminated against
Phil is receiving training at his day centre
to be a telephonist. He would like a paid job but is worried about
the impact of his getting a job to his benefits as well as what
it would mean to the cost of the residential care home. He won't
get paid much even if he does get a job and the worry about the
impact on his benefits means that he is being prevented in applying
for jobs.
Personal Relationships
Developing a personal relationship
Article 8: The right to private and family life
Article 11: Freedom of assembly and association
Artcile 12: The right to marry
Richard and Sharon are seen as an "item"
at the day service they attend. They can only meet each other
at the day centre. Richard lives with an elderly mother and so
does not get to go out once he is back from the day centre. He
also has epilepsy which is not controlled very well and so needs
someone to support him when he is out in the community. He has
not been able to access this extra support from social services.
The day service is being modernised and as a result Richard and
Sharon will not be able to meet. The numbers of days they will
have activities has been cut down and they will be going to different
venues for their day activities. With the modernising of day services,
everyone has had a person centred plan. Neither Richard nor Sharon's
PCP mentions the fact that they would like to see each other to
continue to develop their relationship.
Mother does not approve of Sarah's boyfriend
Article 8: The right to private and family life
Article 11: The right to meet other people
Artcile 12: The right to marry
Sarah moved to a Supported Housing scheme and
was beginning to get more confident and wanted to live in her
own flat. She met Alan at the local disco and started a relationship
with him. Her mother met Alan and was very supportive until she
found out that Sarah is having a sexual relationship with Alan.
She was not happy with this as she did not fel that Alan was a
suitable sexual partner. She asked for an assessment for Sarah
to assess whether she was able to consent to having a sexual relationship.
The assessment stated that she does have the capacity to consent.
Sarah's mother took her back home where she still lives with mother
and she is not allowed to see Alan.
Child taken away from Sue
Article 8: The right to private and family life
Article 14: The right not to be discriminated against
Sue phoned our office a few months ago informing
us that her child had been taken away from her and she was not
being given any rights to visit. The reason given for taking the
child away was that she was not able to look after her child.
When asked what support and training she had had to look after
her child she said she did not have any support. She was told
that it would be very expensive to provide her this support. This
story has not been verified but despite a number of research projects
and guidance for Children and Adult services working together
to support parents with learning difficulties, in reality this
does not happen.
Opportunities to participate in their local community
Segregated Services
You can see from the examples given above that
people with learning difficulties still use segregated services
and this on the whole means that they will not be participating
in their local communities.
Hate crime on public transport
Article 3: The right not to be treated or punished
in a cruel way
Article 8: The right to private and family life
George loves visiting art galleries and going
to the cinema. However he has to do this when school children
are not around. He gets shouted at and taunted on buses and he
gets really anxious when this happens. This makes the school children
behave even worse. His bag has been snatched and the contents
emptied on the road, his shirt has been pulled and a bottle of
coke has been thrown at him. This fear prevents George from participating
in his local community.
Employment
Article 8: The right to private and family life
Having a job brings in new friends, new experiences
and chance of socialising with your colleagues. There is only
a small % of people with earning difficulties in jobs. So majority
of people with learning difficulties do not have the opportunity
to participate and have this experience. Having a job gives you
self esteem and gives you spending power.
Poverty
Article 8: The right to private and family life
Article 14: The right not to be discriminated against
Joan is a great fan of a football team. She
is not employed and so cannot afford to attend any of the matches
as the tickets are beyond her means. It would take her ages to
save up the money to buy a ticket and she struggles to have her
basic needs met with the benefits she receives.
What needs to happen for the human rights of people
with learning difficulties to be met?
The following recommendations were made in VIA's
publication, One Law for All mentioned at the beginning
of this evidence. These recommendations still apply and I hope
that the Joint Committee on Human Rights will recommend its implementation.
1. More needs to be done to implement the
HRA. In particular, the HRA implications for people with learning
difficulties need to be addressed as a governance issue in the
same way that sex, race and disability discrimination are. The
ways that this could be achieved could include:
— Auditing of policies for compliance
with the HRA.
— Development of a corporate human
rights policy.
— Appointment of a designated
human rights official (who should be obtaining and applying up-to-date
information on human rights issues and cases).
2. An extensive programme of staff training
is necessary in the areas of:
— Human Rights and its applicability
to working with people with learning difficulties, in order for
staff to incorporate good practice guidelines and develop a human
rights ethos.
— Communication and communication
strategies when interacting with people who may need support to
express and understand procedures.
3. Public authorities should be developing
a `communication policy' in conjunction with other agencies, covering
areas such as:
— Developing alternative and augmentative
communication approaches.
— Communicating important information
in an accessible form.
— The doctrine of "proportionality"
and the principle of "fairness" in order to support
the development of a human rights ethos.
4. Public authorities should be developing
an advocacy policy which needs to include:
— The scrutiny of the gateway
to advocacy services in order to ensure that advocacy is accessible
to people at all levels.
— The amount of advocacy needed
and how this is being met including the extension of advocacy
services to other areas outside the direct complaints area.
— The development of more cross-agency
agreements.
5. There are serious concerns about the
lack of redress people with learning difficulties receive regarding
complaints procedures nationally. Training in this area is crucially
needed to protect people's right to a fair trail. Training should
take place in the areas of:
— Staff acting as "whistle-blowers".
— Principles of "fairness".
— Management support and transparency.
— Communication strategies.
— Staff acting as advocates.
— Cross-agency working (especially
with the Commission for Social Care Inspection).
— Developing circles of support.
6. Public authorities should be auditing
their policies around people with learning difficulties' rights
and opportunities to develop sexual relationships, marry and have
children. The policies should proactively highlight the rights
that people with learning difficulties have in these areas.
7. Public authorities involved in residential
care and education should be developing a privacy policy in relation
to letter opening, money management and sexual expression for
people with learning difficulties, which incorporates the above
principles of "fairness" and "proportionality"
in the decision-making process.
8. Public authorities involved in social
care and education should be looking for new ways to work in partnership
across sectors to ensure people with learning difficulties can
"develop social relations with other" and "establish
and develop relationships with other human beings" in line
with Article 8 rights. The courts' view is that Article 8 imposes
an obligation on a public authority to take positive measures
to ensure these outcomes. We consider that the Commission for
Social Care Inspection needs to apply the implications of this
decision when considering monitoring criteria for the protection
of that right in care home inspections.
9. Public authorities involved in educational
input (which includes health, social care, residential care, day
care and education) and should be ensuring that education and
training sessions are taught in a language which is meaningful
to people with learning difficulties. All staff need to present
learning in an accessible way, and allow people to express their
learning. These strategies may include signing, symbols, the use
of gesture, plain English etc. Our research shows that this is
not happening in a systematic way, which means that people with
learning difficulties are often unable to express their needs.
Where a staff member is unsure how best to communicate with a
person, a referral for an assessment is crucial. Speech and language
therapists take a key role in this area.
10. The community of people with learning
difficulties and their supporters need to become aware of the
development of the proposed Commission for Equality and Human
Rights so that their agenda is included within the Commission's
remit.
The starting point for this task could be to
establish a forum within which to debate the key issues arising
from the HRA and to map out a strategy for ongoing action and
implementation. We expect that the issues will be of particular
interest to:
— Health authorities and NHS Trusts.
— Social services departments.
— Joint service commissioning
agencies (including education departments).
— Purchasers and providers of
services.
— Research and development agencies.
— Relevant central government
departments.
11. The community of people with learning
difficulties and their supporters need to campaign to highlight
the obligation of the state to take positive measures to protect
the right to a fair trail (under Article 6) and ensure that people
with learning difficulties do not continue to have disproportionate
difficulty in accessing the legal process. To this end, the Crown
Prosecution Service needs to continue to generate standards and
guidance in criminal proceedings, and specifically to monitor
their application to people with learning difficulties in line
with their Article 6 rights. Furthermore, legal networks of interested
parties need to be developed to support people with learning difficulties
to take court action when human rights principles are involved,
and to feed back to the Commission for Equality and Human Rights
and the legal community when access to civil remedies is denied.
12. Discriminatory practices in mainstream
health care services continue to be reported. There is a need:
— For specialist health care professionals
to support mainstream health care colleagues in assessing and
managing the needs of people with learning difficulties.
— To provide all professional
groups, at all levels, with the necessary training and experience
in working with people with learning difficulties.
13. Residential services should be looking
for ways to ensure that discriminatory health care practices are
avoided when visiting health services. Health Facilitation and
Health Action Plans should be an integral part of their approach
to people's health. Agency staff, or people new to the service,
should not attend GP and other health visits without the necessary
knowledge and information.
14. Treatment which involves the use of
long term medication is reviewed by medical professionals. Unfortunately,
these review often lack the presence of the person with learning
difficulties, or of an advocate.
— The person with learning difficulties
needs to be involved in a meaningful way in the decision-making
process whenever medication is being considered, including during
reviews.
— Advocates should automatically
be available to support the person with learning difficulties
to be involved in decision-making about their medication. Paid
staff are unlikely to be appropriate because of conflicts of interest.
They may also lack authority to influence outcomes.
— Information needs to be accessible
and to be presented in an appropriate way.
15. Public authorities have a duty to protect
people with learning difficulties from being bullied as well as
from low level harassment. They need to develop strategies which
include how to prevent this type of behaviour occurring, through
a process of training and education.
16. The community of people with learning
difficulties and their supporters need to campaign to highlight
the need for the adoption of protocol 12 of the European Convention
(concerning a free-standing prohibition against discrimination)
into the HRA. This would allow for significantly greater protection
for the rights of people with learning difficulties.
17. The community of people with learning
difficulties and their supporters need to campaign for people's
right to independent advocacy. It seems inevitable that with the
advent of the HRA a wider availability of advocacy services will
be needed. At present, the state's positive obligation to provide
a statutory advocacy service at the point of needs, which we consider
to be necessary to protect the rights granted by the HRA to people
with learning difficulties, has not been compiled with. The Government
needs to put additional resources into this area and ensure that
advocacy is much more widely available for people with learning
difficulties.
Public authorities urgently need to raise awareness
of the HRA amongst their staff. If they are in doubt as to whether
they are a "public authority" under the HRA they need
to presume that they are. In all decisions involving people with
learning difficulties they need to apply "proportionality",
and to reach balanced decisions based on a human rights ethos.
They need to be flexible in their decision-making and ensure (using
all possible communication strategies, especially the use of advocacy)
that the voices of the people to whom they provide their services
are heart, and their rights protected.
Besides these recommendations the one thing
that can really make a difference in the lives of people with
learning difficulties is for:
Government Departments to work in partnership:
The responsibility for improving the lives of
people with learning difficulties needs to be taken by all Government
Departments. If this joint work is reflected at the top it can
be mirrored in local government.
The example given above where George is in fear
of school children, the responsibility of educating the children
should be shared by Social Services, Education and the Police/
Crime Prosecution Service. At present because departments work
in silos, people with learning difficulties fall through the net
and locally these different departments only come together when
it is too late.
Other things that are important to remember
are:
— the availability of independent
advocacy and its skill and capacity to deal with HRA issues;
— how informed and skilled frontline
staff are in enforcing people's rights or reacting when they see
those rights denied;
— how organisations inform and
support their staff and their `clients' about HR issues; and
— links with other laws, such
as the Mental Capacity Act 2005 and other things that support
people's rights to choice and control.
5 July 2007
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