Memorandum from the Foundation for People
with Learning Disabilities
EXECUTIVE SUMMARY
"Any fair society should be judged not only
on the way it cares for vulnerable people, but on the steps it
takes to ensure that they can lead integrated and fulfilling lives"
"Progression through Partnership",
HM Government 2007
1. The evidence in this submission shows
that progress has been made in human rights for people with learning
disabilities, particularly since publication of the White Paper
"Valuing People" in 2001. However, there have also been
recent shocking reports of abuses of human rights and the lives
of many people with learning disabilities—and their families—are
seriously impoverished.
2. Our evidence focuses on progress and
problems that we see in our work with organisations and individuals
across the country. Too many services that are particularly for
people with learning disabilities are "getting by" with
the basics of care rather than enabling people to have a fulfilling
life. Too many services that we all use are still not inclusive
or welcoming to people with learning disabilities. There are some
groups of people with learning disabilities who are particularly
likely to have a poor deal, including people from black and minority
ethnic communities and people with high support needs. There seems
to be an expectation in some authorities that family carers will
provide increasing levels of support as public sector eligibility
criteria are tightened. Greater independence for disabled people
should not be achieved at the expense of unreasonable demands
on their families. Yet there are some great examples of people
being supported to make the most of their talents and live full
and rich lives. Why can't this happen everywhere?
3. We are encouraged that more people with
learning disabilities are speaking up for themselves and some
are becoming leaders in their communities. We think more needs
to be done to invest in these developments so that people and
their families can take more control over their lives and the
support they need. Alongside this, communities need support to
become more inclusive and the "place-shaping" role of
local authorities (Lyons, 2007) will be important to this.
4. Key elements of legislation, such as
disability discrimination and mental capacity law, are in place
and the Government has committed to improving support for disabled
children; we now need greater commitment to full inclusion for
adults with learning disabilities. The UN Convention on the Rights
of Persons with Disabilities could help with that.
ABOUT THE
FOUNDATION FOR
PEOPLE WITH
LEARNING DISABILITIES
5. We promote the rights, quality of life
and opportunities of people with learning disabilities and their
families.
6. We do this by working with people with
learning disabilities, their families and those who support them
to:
— do research and develop projects
that promote social inclusion and citizenship;
— support local communities and services
to include people with learning disabilities;
— make practical improvements in services
for people with learning disabilities; and
— spread knowledge and information.
7. Our objectives are:
— To promote the rights of people with
learning disabilities to play a full part in society.
— To help ordinary services and communities
to include people with learning disabilities more.
— To empower people with learning disabilities
and their families to take control of the planning and delivery
of their support.
— To promote person-centred practice,
services and systems.
— To help get improvements in people's
physical and mental health, so they can lead fuller lives.
8. Over the last three years we have worked
with over 100 public and independent sector organisations across
the UK, helping them to improve opportunities and services for
people with learning disabilities. We are part of the Mental Health
Foundation, a registered charity.
EVIDENCE ABOUT
THE HUMAN
RIGHTS OF
ADULTS WITH
LEARNING DISABILITIES
9. It is tempting to set out for the Committee
all the information we can compile about the human rights of adults
with learning disabilities. However, we note that the Committee
is already aware of some key sources, such as the national survey
of adults with learning disabilities (Emerson et al, 2005). We
are confident that the Committee will also be aware of the survey
and data analysis published by the Valuing People Support Team
("Valuing People—the Story So Far", Greig, 2005).
Many of the issues raised in reports about the experience of disabled
people generally are also relevant to people with learning disabilities
(for example, "Independence Day", Disability Rights
Commission, 2006a; "Disability 2020", IPPR, 2007). In
general we will therefore not repeat these sources, but will focus
mainly on evidence from our own work, together with collated evidence
from other sources. We will refer to reports produced by others
on specific topics where we particularly wish to endorse their
findings.
10. An underpinning issue that does not
seem to fit neatly under any of the suggested headings is society's
attitude to the birth of disabled people. Guidance on antenatal
screening designed to detect fetal abnormalities is clear that
advice to pregnant women and their partners should be non-directive.
Yet research published by the Foundation (Barr and Skirton, 2006)
shows that many women report feeling pressured, both by health
professionals and by family and friends, into having screening
and into terminating their pregnancy if screening shows that their
baby may be disabled. Health professionals who offer screening
often have little or no up-to-date information on what life is
like for disabled adults. This is important because these early
choices and experiences can reinforce stigma about disabled people
(including amongst disabled people themselves). The Foundation
does not take a position on the choices that parents should make,
but is concerned that they should have the best possible, balanced
information on which to make their own decisions. The Foundation
has commissioned research from the Universities of Plymouth and
Ulster on the information that parents and health professionals
want and need.
Access to and quality of public services
11. One way of describing independent living
for disabled people is as access to the same life opportunities
and the same choices that non-disabled people take for granted.
That includes growing up in their families, being educated in
the local school, using the same public transport, getting employment
that is in line with their education and skills and having equal
access to the same public goods and services. Some public service
issues are particularly relevant to the Joint Committee's interest
in relationships and family life, participation in the life of
the community and a voice in decision making—these will
be addressed under those headings below.
Health and social care services for people with learning
disabilities
12. The last 12 months have seen the publication
of five key reports detailing abusive, neglectful or discriminatory
practice affecting people with learning disabilities:
— report of the Healthcare Commission/Commission
for Social Care Inspection (CSCI) investigation into services
provided in Cornwall (Healthcare Commission/Commission for Social
Care Inspection, 2006);
— report of the Healthcare Commission
investigation into services provided by Sutton & Merton Primary
Care Trust (Healthcare Commission, 2007a);
— report of the CSCI inspection of
services provided by Bedfordshire & Luton Partnership NHS
Trust (Commission for Social Care Inspection, 2007);
— report of the Disability Rights Commission
Formal Investigation into health inequalities ("Equal Treatment",
Disability Rights Commission, 2006b); and
— report by Mencap on six deaths that
should have been avoidable ("Death by Indifference",
Mencap, 2007).
13. The Joint Committee will be aware that
the Healthcare Commission is midway through an audit of bed-based
health services for people with learning disabilities, set up
in response to concerns that the Cornwall findings might be indicative
of wider neglect. This will give, for the first time, much more
complete and reliable information about the numbers of people
in different types of services as well as the quality of those
services.
14. Examples of abusive and degrading treatment
such as the stories from Cornwall about forced cold showers and
the man tied in his chair for 16 hours a day are shocking and
made the front page of some daily papers. The six deaths reported
by Mencap also received wide coverage. The later reports described
institutional practices that also represent blatant abuse of human
rights:
— poor management of challenging behaviour
and aggression, including inappropriate methods of control and
restraint;
— examples of restrictions placed on
all the residents of a service because of the behaviour of one
person—for example, the kitchen kept locked and the room
lights controlled centrally by staff;
— casual disregard for dignity and
respect, for example in the way a person was supported to eat
and drink;
— poor condition of accommodation;
— great poverty of lifestyle, with
lack of opportunities for social and recreational activities,
friendship or active citizenship; and
— lack of "reasonable adjustments"
in the provision of mainstream health services and failure to
promote equality.
15. These examples received far less media
coverage. The Sutton and Merton investigation was not even reported
in the Health Service Journal. As some commentators pointed out,
the same reports from children's services would have provoked
a public outcry. This suggests that the human rights of adults
with learning disabilities take a lower priority in society.
16. Messages posted by family carers and
support workers on our electronic Choice Forum suggest that abuse
of human rights is more widespread than the high profile investigations
have uncovered. We are not in a position to ascertain the reliability
of the allegations made, but they include:
— food being withheld as punishment;
— lack of attention to personal hygiene,
so that faeces become hardened into pubic hair;
— lack of attention to health, such
as untreated fungal infections and lack of support to attend for
regular dental checks;
— failure to offer food in a form that
can be managed by a person who is not supported to wear dentures,
leading to a person becoming very underweight;
— lack of support for healthy eating
and exercise, leading to a person becoming very overweight; and
— staff who support a person in their
own home preferring to sit and watch TV rather than support the
person to go out.
People making such observations are always encouraged
to follow local complaints procedures.
17. In our own work with services across
the UK we observe staff in many areas struggling to support people
to obtain a reasonable quality of life. Some organisations have
worked hard to develop more person centred practice, but find
that the funding from council and NHS commissioners is inadequate
to deliver this.
Four people have shared a house since they moved
out of one of the long stay hospitals about 10 years ago. They
have each had a programme of day activities that has taken them
out and about most weekdays. This has been cut by the council,
which is experiencing significant financial difficulties. The
staff team that supports people at home was designed (in numbers
and timing) on the basis that people were out of the house most
of the day, Monday to Friday. The organisation that provides the
support has not been funded to increase the hours. The four people
are now spending a great deal of time in the house together, with
inadequate staff support to go out and do anything. They have
found they do not get on so well together. There have been problems
of aggressive behaviour between two of the people. Tranquillisers
have been suggested to control this. One person's mental health
has started to deteriorate. The support provider says they cannot
go on supporting people in this way.
18. Thus too often services focus on meeting
basic needs for shelter, warmth, cleanliness and nutrition than
around promoting freedom of expression and association. More disabled
young people are surviving into adulthood. We have to ask whether
society is prepared to support them to get a life, rather than
just an existence that may itself be cut short due to unhealthy
lifestyles and poor access to health care.
19. We are working with services in Cornwall
to help them undertake person centred planning and develop day
opportunities, short breaks and employment options. This will
give people the chance to participate in a wider range of community-based
activities and to exercise their choices and rights as citizens.
As in many other authorities, we have found that staff have had
little training or support to develop practice that supports people's
human rights. In many areas organisations report that one consequence
of tighter and tighter funding is reduced training—what
capacity is left tends to be focused on mandatory training such
as health and safety, at the expense of values-based skills development.
20. Too many people from authorities across
the country are still sent away from their home area because local
services are inadequate to support them. Sometimes this is because
they have complex health needs; more commonly it is because services
find their behaviour too challenging. Behaviour that challenges
is often the product of frustration, poor communication, pain
or boredom. It might result from a poor quality of life or from
failure to offer choice and control. It might occur when staff
or family carers fail to engage the individual in decision making
about his or her life. Changes in behaviour can be a symptom of
abuse or of physical or mental health problems that require investigation.
Yet a common response is to send people to more restrictive settings,
breaking links with their family and community, rather than to
investigate and address the underlying issues. In 2006 31% of
people with learning disabilities aged 18-64 known to councils
(over 11,000 people) were in residential accommodation outside
their home area (The Information Centre, 2006). Studies in the
West Midlands, Wales and Kent have shown that people placed out
of area often receive poor quality care and (out of sight, out
of mind) do not benefit from proactive, person centred planning
that might change their situation for the better. The substantial
costs incurred in such placements reduce the funding available
to develop better local services; this vicious circle needs to
be broken by better collaboration across authorities to develop
local competent, individualised services.
21. Research we have undertaken on person
centred planning (Robertson et al, 2005) shows that the "family"
of person centred approaches can help to make significant improvements
in the quality of people's lives—more choice and control,
more social relationships, more activities of the person's choice.
Coupled with the options of self directed support such as direct
payments and individual budgets, there are real opportunities
for people with learning disabilities to gain more control over
their lives. It is disappointing that our research shows that
access to direct payments is still limited by restrictive care
management practices and inadequate support. The Independent Living
Funds have also supported some people to achieve greater control
over their support, although the eligibility criteria still exclude
people living in NHS campuses who may wish to move to more independent
living. This appears discriminatory. Paradoxically our research
shows that people who most need person centred approaches, such
as people whose behaviour challenges or people on the autistic
spectrum, are least likely to be involved in person centred planning.
Mental health services
22. People with mental health problems in
addition to their learning disability are also less likely to
be offered person centred planning. In addition they are less
likely than non-disabled people to be offered the full range of
appropriate mental health services. For example, people with learning
disabilities are typically not offered cognitive behavioural therapy,
even when their cognitive abilities would allow them to benefit
from this, because of false assumptions about their mental capacity.
Mental health problems often go unaddressed because support services
miss early warning signs or misinterpret them. For example, the
person may be labelled as having challenging behaviour and contained
rather than treated. Primary care services are not always skilled
at recognising mental health problems and differentiating the
signs from the person's learning disability (diagnostic overshadowing).
Members of our UK Health and Learning Disability
Network cite many examples of people who have developed stress-related
mental health problems, yet the health service response is commonly
to prescribe tranquillisers or sedatives rather than to address
the underlying issues.
23. People and their families still report
being passed backwards and forwards between learning disability
services and mental health services (Cole, 2003). Data on admissions
to bed-based services shows that people are still at risk of becoming
"stuck" in in-patient services far beyond any therapeutic
purpose for lack of competent and confident community services.
The recent "Count Me In" census showed that this is
a particular risk for people from minority ethnic communities
(Healthcare Commission, 2007b).
24. We are concerned that provisions of
the Mental Health Bill currently in passage through Parliament
may result in an increased number of people with learning disabilities
being compulsorily treated with medication or forced to comply
with other conditions, possibly for prolonged periods of time.
In most cases, person centred support, provided early, removes
the need for this form of coercion. However, this legislation
will also address the "Bournewood gap" where people
without capacity have in the past been detained without any form
of legal safeguard. Although we remain deeply concerned about
many aspects of the Mental Health Bill, the developments in regard
to "Bournewood" constitute a step forward in ensuring
the rights of people with learning disabilities are upheld.
General health services
25. Like the DRC's Formal Investigation
(Disability Rights Commission, 2006), we are aware of both good
and bad practice in access for people with learning disabilities
to mainstream health services. We have conducted a series of projects
aimed at improving access to and quality of primary and secondary
health care (Giraud-Saunders et al, 2003; Smith et al, 2004; Smith
et al, 2007). These and intelligence from our electronic UK Health
and Learning Disability Network show consistently that:
— The introduction of annual health
checks within mainstream primary care is an essential first step
to addressing the substantial health inequalities experienced
by people with learning disabilities.
— PCTs have inadequate data about the
health status of people with learning disabilities and about their
use of services. This means that stark inequalities such as omission
of women with learning disabilities from breast and cervical screening
programmes remain unaddressed. Improved clinical coding is required
to capture better data about people with learning disabilities,
but this will not suffice in itself. Stronger leadership is required
within PCT and practice based commissioning of mainstream health
services to ensure that the inequalities experienced by small
marginalised groups, such as people with learning disabilities,
are addressed alongside the major public health initiatives.
— Practitioners in primary and secondary
care have not generally been well equipped to respond to disabled
patients. They commonly report lack of confidence in dealing with
issues such as communication, consent and managing risk. In turn,
people with learning disabilities complain to us about poor communication,
discriminatory attitudes, lack of "reasonable adjustments"
in processes, and inaccessible information. Families continue
to report that health professionals ignore their expertise and
that unreasonable expectations are placed on them to provide personal
care for disabled relatives who are admitted to hospital. Concerns
raised by the Healthcare Commission and the National Patient Safety
Agency about lack of care for vulnerable people in hospital (eg
food placed out of reach, failure to prevent falls, lack of attention
to dignity) apply equally to people with learning disabilities.
— There are some serious gaps in existing
health care services for the growing population of people who
have very complex health needs (including the cohorts of young
people surviving dependent on a variety of medical technologies).
There are particular problems in timely access to equipment and
in management of swallowing problems (dysphagia), body shape protection
(postural care), epilepsy, and recognition of pain and distress.
A new generation of children is at risk of growing up in hospital.
26. Our work with services across the country
shows that people with learning disabilities still do not get
adequate health checks and that this affects their opportunities.
A man who lived in accommodation supported by
NHS staff used a wheelchair. We were told he could not walk. We
found that his toenails had not been cut for a very long time;
they had curled round and were cutting into the soles of his feet.
A woman using day services proved hard to engage
in person centred planning designed to find out what she would
like to do in her life. She spent a lot of time slumped in a chair.
We found that her thyroid function had not been checked and that
her eyesight and hearing had not been tested. Once these things
were done and corrective action taken, she was a different person
and we could begin to explore with her the changes she wanted
in her life.
Another woman, using supported accommodation,
was sleepy all the time and overweight. She no longer went out
and about to do the things she used to enjoy. Through health action
planning she was supported to talk to her GP about her prescribed
medication. It was changed to reduce the side-effects and this
had a dramatic effect on her wellbeing. She lost weight, got some
new clothes, and started going on the bus again.
Housing and independent living
27. The demand for improved housing choices
is very substantial. Over half of people with learning disabilities
known to services live with their families and there are increasing
numbers who are known to be living with very elderly parents.
The national survey of people with learning disabilities, "Valuing
People—the Story So Far" (Greig, 2005) and our own
work on person centred planning, transition planning and support
for older families all tell the same story: the common options
of staying with your family or moving into residential care are
no longer enough. Mirroring trends in the rest of the population,
more people with learning disabilities want the chance to live
on their own, or perhaps with one other chosen person, with appropriate
support. There are some excellent examples of people with learning
disabilities using shared ownership and assured tenancies to achieve
this aim and the "Supporting People" initiative resulted
in more people getting a chance of more independent living. However,
these options are not universally available and "Supporting
People" funding is reducing. Much new housing development
is geared to meeting the general demand for single person accommodation,
but:
— it often does not meet the space
requirements for disabled people, including people who need sleep-in
support; and
— it is often unaffordable for people
reliant on state benefits—particularly where housing benefit
levels do not reflect the space requirements of a disabled person.
28. Care is needed to avoid assumptions
in exploring housing and support options and choices. People from
minority ethnic communities sometimes report that workers promote
a version of "independence" that entails separation
from the family home and life, rather than interdependence that
allows a young person to establish greater choice and control
within the family context.
29. People with learning disabilities still
experience discriminatory attitudes from some neighbours, who
object to someone moving in. This is most common in response to
groups of people with learning disabilities, but is also experienced
by individuals.
Criminal justice system
30. Some people with learning disabilities
still report that the police are not helpful if they wish to report
a crime. There are still reports of crimes against people with
learning disabilities going unpunished because of assumptions
about people's capacity as witnesses. However, we are also aware
of excellent work that some police forces are doing, often in
collaboration with self advocacy groups and organisations such
as Victim Support, to promote disability equality, address hate
crime against disabled people and respond appropriately to disabled
people who are either victims of crime or alleged perpetrators.
31. We were shocked by the recent report
on people with learning disability in prisons (Talbot, 2007).
It is clear that there is institutional discrimination in the
criminal justice system, and furthermore that any efforts to address
key weaknesses (such as failure to identify people with communication
problems) are likely to be seriously compromised by the rapid
movement of prisoners around the system. People with learning
disabilities may be denied parole if rehabilitation programmes
are inaccessible to them. We endorse the determination expressed
by the All Party Parliamentary Groups on Learning Disability and
Penal Reform, meeting together on 15 May 2007, to raise the key
issues with the Ministry of Justice. We are also concerned that
the tighter eligibility criteria for social care, resulting in
reduced support, could mean more vulnerable adults getting into
difficulty and coming into contact with the criminal justice system.
(Young people with learning disabilities entering the criminal
justice system are likely to have been excluded from school up
to ten times).
Groups at particular risk of poor public services
32. There are four groups of people with
learning disabilities who experience particular problems with
access to good quality public services:
— young people in transition to adulthood:
our evaluation of the Connexions service (Rowland-Crosby et al,
2004) and work with a number of authorities show that poor planning
and co-ordination persists, despite ample guidance on good practice.
Many authorities are working on improving their processes, which
is of course welcome. However, in many areas this is not yet translating
into improved opportunities for young people to become active
adult citizens, with the chance to take on new responsibilities,
develop personally and contribute to their communities;
— people from black and minority ethnic
communities continue to report that services are not culturally
sensitive and that as a consequence they do not get the support
they need and want. This often starts with lack of information
and understanding about what is or could be available, lack of
assertiveness about redesigning support and (on the part of support
services) continued false assumptions about family and community
roles. As described above, the model of independence promoted
by services can also appear unattractive to families from some
cultures;
— people with high individual support
needs (for example, people with profound learning disabilities
and complex health needs) continue to have very limited options.
Families report enormous problems in access to appropriate equipment
and adaptations, and lack of access to opportunities such as further
education, leisure and social activities. Problems with access
to good quality primary and secondary health care were noted above.
People who are dependent on medical technologies such as tube
feeding and ventilation are at particular risk of having their
lives dominated by rigid NHS practices, rather than being supported
to get a full life; and
— people with lower support needs,
on the other hand, are increasingly excluded from social care
by tighter eligibility criteria. The Commission for Social Care
Inspection report on the state of social care 2005-06 (CSCI, 2006)
picks up on this issue and raises the question of how councils
will meet their duty to direct people to other sources of support—the
question for us is: what other sources of support? People with
learning disabilities who try to take up opportunities other people
take for granted (such as rented housing, college courses and
local leisure services) too often find themselves caught in the
middle of a disagreement between those service providers and social
services about who should meet the costs of "reasonable adjustments"
and support to enable the person to exercise their choices.
Relationships and family life
Friendships and relationships
33. Evidence from the national survey of
people with learning disabilities shows that many people have
few friends and little contact with the people they do regard
as friends. This is backed up by our work on person centred planning,
consultation with young people and families about what is important
to them, and priorities chosen by our advisory group of people
with learning disabilities. These all confirm the limited nature
of people's social networks, set against the importance that people
with learning disabilities—like everyone else—attach
to friendship. Many families and services are particularly nervous
about supporting people to develop and sustain intimate relationships.
34. 92% of participants in the national
survey were single and always had been. Just 7% had children and
of these only half looked after their children. The Norah Fry
Research Centre undertook a recent study on the experiences of
parents with learning disabilities (Tarleton, et al, 2006), which
confirmed the poor support experienced by many. The findings are
echoed in our own work with community learning disability teams:
members often report on the challenges of working with children
and families teams that focus strongly on risk to the child and
can be reluctant to invest in support to enable the parent(s)
to be "good enough". Tight eligibility criteria can
also limit the support community learning disability teams can
offer. We are pleased that the Department of Health and Department
for Education and Skills have recently issued guidance about positive
practice to support parents with learning disabilities (DH/DfES,
2007).
Family carers
35. The Joint Committee is focusing on the
human rights of adults with learning disabilities rather than
on family carers. There are instances (for example, in responses
to Community Care magazine's recent survey of people with learning
disabilities) of families holding back people with learning disabilities
and not supporting adult sons and daughters to truly grow up.
However, our experience is that for most people, most of the time,
their families are their greatest and most reliable allies. Families
stick with you. Too often services focus on the disabled person
in isolation and fail to take account of the family situation
as a whole. Supporting the family can sometimes be the best way
of supporting the disabled person to get a better life.
36. This approach is particularly needed
in respect of older families. A Mencap survey in 2002 suggested
there were around 30,000 people living with older family carers—parents
aged over 65. Many such families ("Valuing People" (Department
of Health, 2001) estimated 25%) are not in touch with services
until there is a crisis. Data published with "Valuing People—the
Story So Far" (Greig, 2005) showed that in 2003-04 only one-third
of family carers aged over 65 known to councils had had an assessment
or review of their needs in the last year. Our Older Family Carers
Initiative showed the importance of identifying older families
and planning with them for future support (Magrill, 2005).
One family carer in her late 80s dissolved into
tears while discussing possible future housing options for her
son. Over 50 years ago the doctor who told her that her son had
learning disabilities had said that she would no longer be allowed
any contact if her son moved out.
Support for Edith (87) and her daughter Carol
(56) has enabled them to change their housing to a bungalow in
Carol's name, held in trust for her. Carol is building up her
independent living skills. Edith still worries about the future,
but she knows there are plenty of people now who care about Carol
and will speak up for her when Edith is no longer able to do this.
37. Our older families work also highlighted
the increasing number of people with learning disabilities who
were becoming carers for their ageing parents. This type of "mutual
caring" has not always been recognised and supported by services;
we are now working with a few authorities to help them develop
better support systems.
38. The issue of tightened eligibility criteria
for social care was noted in para. 32 above. This trend raises
important questions about the expectations society has of family
carers. Many families fear that the reality will be:
— fewer chances for their sons and
daughters to move out of the family home if they wish to;
— more people staying at home during
the day with nothing to do; and
— increased requirements for family
carers to provide round the clock care, despite the legislative
support for equal opportunities for family carers to get a full
life.
39. Many families are excited about the
opportunities of greater choice and control offered to disabled
people by direct payments and self directed support. However,
some families are finding that this means higher expectations
on them to help the disabled person manage their money and support.
Not all families wish to do this. We suggest that the movement
towards self directed support needs to be sensitive to families'
wishes and circumstances and offer alternatives, such as paid
brokers. Greater independence for disabled people should not be
achieved at the expense of unreasonable demands on their families.
Participation in the life of the community
40. Ask yourself: how many people with learning
disabilities have you noticed on your way to work, or in your
workplace? How many did you see when you were doing your shopping
or last time you went out for a drink or a meal?
Transition to adult life
A parent interviewed for our "What Kind
of Future?" project said: "I have a 21-year-old daughter
who has Down's syndrome. Since leaving school we have found it
extremely difficult to find ways to occupy her in any worthwhile
way. At the moment she is doing a college course in computing
which keeps her busy but which seems in every other respect pretty
pointless. She works in a caf
at weekends but this is voluntary so there
isn't much motivation for her there either. The disability officer
at the job centre and social work have been of little or no help.
She goes to a youth club once a week which she enjoys but the
facilities there are very poor—a TV and a pool table. She
needs worthwhile supported employment and more opportunities to
socialize with other young adults."
41. Much of our work has focused on supporting
young people and their families to achieve a better transition
to adult life, using person centred planning to find out what
is important to the young person and attending to mental health
and wellbeing in addition to other aspects of life (Foundation
for People with Learning Disabilities, 2002 and 2005). Many authorities,
working with Connexions, have improved the transition planning
process in response to the concerns that have frequently been
expressed (for example in "Improving the Life Chances of
Disabled People", Strategy Unit, 2005). We are beginning
to hear that person centred transition reviews at Year 9 are having
a positive impact in terms of raising expectations for the future.
However, this has not necessarily resulted in increased opportunities
for young disabled people in terms of housing, meaningful occupation,
or leisure, culture and sports.
42. Our "Developing Connexions"
report (Rowland-Crosby et al, 2004) showed that too many young
people were transferring from school to college courses that did
not appear to have any link with their interests or vocational
opportunities and were not being supported to consider employment.
These findings have been echoed recently by reports from the Learning
and Skills Council, which is aiming to improve the quality of
post-16 education by refocusing on courses that can demonstrate
educational and vocational benefit (Learning and Skills Council,
2006). The short term effect of this is that many young people
are losing college courses and are not being offered alternative
day time opportunities (Learning and Skills Council, 2007).
Work
43. For most people work is an important
aspect of participation in the life of the community. It is not
just a way of earning money, but a way of meeting people, a source
of self esteem, and a way of making a visible, valued contribution.
44. It is difficult to obtain reliable data
on numbers of people with learning disabilities in paid work (employed
or self employed). Published figures range from 11% ("Valuing
People—the Story So Far", Greig, 2005) to 17% (the
national survey of people with learning disabilities, Emerson
et al, 2005). Whatever the exact figure, the fact is that very
few people with learning disabilities have a job compared to those
who want to work. Our person centred planning research showed
that two-thirds of the people who did not have a job wanted one.
45. As noted above, work options are not
yet routinely explored with young people in transition to adult
life; young people with learning disabilities often miss out on
work placements and tasters from school or college. Supported
employment (the job coach model) is a proven method of getting
people with learning disabilities into work and sustaining them,
but supported employment schemes often have fragile funding and
may be disconnected from general economic development work led
by councils. Many people with learning disabilities report discrimination
by employers and are also put off from employment by the complex
relationship between different kinds of social security benefits.
46. Projects and person centred planning
work from the Foundation have shown that work is possible for
many people with the right support, including people with high
support needs (Foundation for People with Learning Disabilities,
2000) and the Foundation is just embarking on a new project ("In
Business") to support people with learning disabilities to
start their own small businesses.
Getting around
47. Underpinning participation in the life
of the community is the need to be able to get around. A consistent
complaint from people with learning disabilities in most areas
is the difficulty of doing this. We have been impressed by work
that Transport for London and some other transport authorities
have done to improve accessibility of information as well as physical
access; some have paid attention to the attitudes of public transport
staff too. In some areas there are successful travel training
schemes and travel buddy schemes. Another big concern for people
with learning disabilities is bullying and hate crime on public
transport, which of course deters people from going out. Staff
training and good links with the police are helping with this
in some areas. Some authorities have been proactive in supporting
people who are entitled to higher rate Mobility Allowance to get
their own car. In many areas, however, people with learning disabilities
continue to depend on segregated group transport, such as minibuses.
Much more attention is needed to transport and support to get
around.
48. People who find travel difficult are
of course particularly disadvantaged by the trend to closure of
local facilities such as neighbourhood post offices and shops.
49. A further barrier to participation for
many people is the closure of many local public toilets. People
with learning disabilities may lack confidence to use pub or restaurant
toilets instead. Mechanised public toilets are hard to use for
anyone with a cognitive impairment. People with high support needs
are particularly constrained by the lack of truly accessible toilets.
We back the campaign run by the Changing Places Consortium (www.changing-places.org)
for toilets in public places that are accessible to people with
high support needs, with the room and facilities required to allow
an adult with one or two supporters to change their continence
pad.
Other day opportunities
50. There are some excellent examples of
inclusive services, such as the Waterfront leisure centre in Greenwich
and the library service in Leicestershire. However, too many people
with learning disabilities are still reliant on segregated day
services for their daily routine. We do not advocate wholesale
rapid closure of existing day centres, which can leave people
and their families without support of any kind, but we do wish
to see greater commitment to individually planned vocational,
leisure, social and cultural activities that give both the person
with learning disabilities and their family carers a life worth
living. Examples of good practice are given in the report we produced
recently for the Social Care Institute for Excellence (Cole et
al, 2007).
Spirituality
51. Whether in private or in company with
others, spirituality is an important aspect of life for many people.
The Foundation's research (Foundation for People with Learning
Disabilities, 2004) shows that people with learning disabilities
want to explore what gives their lives meaning, but rarely get
support to do so. Some people value belonging to a particular
faith, but again do not always get support to participate—and
faith communities are themselves not always welcoming or inclusive.
The Foundation's publications on this topic have been welcomed
by staff in services, who often say that this aspect of people's
lives is neglected. We are also offering more support to faith
communities to help them become more inclusive (for example, with
our DVD "Faith in Practice").
Voice in decision making
Advocacy
52. We welcome the additional funding that
has gone into supporting advocacy and self advocacy following
"Valuing People". However, we remain concerned that
much of this funding is fragile; advocacy groups and organisations
are often very small and spend a great deal of their limited capacity
applying for short term funding. Many people still do not get
the opportunity of information and training to help them become
more aware of their individual rights and more self confident
and assertive.
53. The Mental Capacity Act has brought
with it entitlement to the services of an Independent Mental Capacity
Advocate (IMCA) for people who lack capacity and have no family
or friends to support them with important decisions. We are concerned
at the limitations on this service—first, that a person
with learning disabilities may need advocacy that is independent
of family interests; second, that it may take a long time to get
to know a person if they have limited means of communication and
if the decision to be made is a complex one, yet we are concerned
about whether responsible bodies will fund sufficient time for
an IMCA to understand the person's wishes.
Person centred planning
54. We have referred in earlier sections
to the benefits of using person centred planning to find out about
a person—their talents and preferences, hopes and dreams—and
to plan with them the support they may need to live their life
in the way they wish. The opportunity to explore choices in an
open way—without prejudging what may be possible or constraining
thinking to what statutory services normally do—is vital
for people with learning disabilities to gain a stronger voice
in decision making about their own lives. Much of our work with
statutory services and third sector organisations is focused on
helping them to understand the roles they could and should play
both in helping people to plan and in responding to their preferences.
We have good stories to tell about what can happen when services
really listen and respond creatively. However, it is clear from
inspection reports and from what we hear directly from people
and their families that such examples are still too rare. Much
more needs to be done for everyone to benefit from the same chances.
Leadership
55. The "Valuing People" emphasis
on people with learning disabilities being involved in decision
making has led to increased attention to leadership skills. We
are piloting leadership courses for people with learning disabilities
and are excited about the impact these are having on individuals'
skills and confidence.
PRACTICAL MEANS
OF SECURING
HUMAN RIGHTS
Person centred planning and self directed support
56. The combination of person centred planning
with the means for people to control their own support offers
powerful means of securing human rights. We therefore wish to
see these options offered as a matter of course to all people
with learning disabilities, along with assistance as needed to
make them function effectively. A mature attitude to managing
risk with vulnerable adults is needed for these to work well—society
needs a greater understanding that over-protection and denial
of the chance to take risks in a managed way can result in a very
impoverished lifestyle.
57. We are very concerned that the new guidance
on NHS Continuing Health Care (Department of Health, 2007) makes
no provision for people with learning disabilities who become
eligible for this source of funding to have the same opportunities
for control of their own support as people whose funding comes
from other sources. The guidance explicitly acknowledges that
people who have been in receipt of Direct Payments or Individual
Budgets "may experience a loss of control over their care".
How can this be right?
Building capacity in communities
58. The corollary of person centred planning
and self directed support is capacity in communities to be welcoming
and inclusive. The history of segregated services and low expectations
for people with learning disabilities means that this does not
necessarily happen naturally. Members of the public and staff
in services we all use—shops, leisure centres, cinemas—are
sometimes fearful of disabled people and uncertain how to communicate
and interact. Some community capacity building needs to be done
at an individual level—introducing one person to others
who share an interest, for example, and gradually building confidence.
Some can be done at an organisational level, such as working with
a leisure centre to develop accessible information, improve physical
access and enhance the skills and confidence of staff. The "place-shaping"
role for local authorities described by the recent Lyons Inquiry
(Lyons, 2007) should support this type of work.
Law
59. Law is important in setting expectations,
not just as a recourse when things go wrong. It is therefore important
that people with learning disabilities and their families, friends
and advocates understand what the law says about their human rights.
Important recent legislation includes the Human Rights Act itself,
the Disability Discrimination Act 2005 (incorporating the disability
equality duty on public sector organisations) and the Mental Capacity
Act. The former Department of Constitutional Affairs is to be
commended for the efforts it made to consult people with learning
disabilities and to produce accessible materials as the mental
capacity legislation progressed. Other Government departments
would do well to emulate this. It is disappointing that some organisations
(such as banks) do not yet seem to have embraced fully the implications
of disability discrimination law and the Mental Capacity Act in
terms of improving access for people with learning disabilities
to services the rest of us take for granted. Our work with individuals
bears out the findings of the Employers' Forum on Disability research
on problems with access to banking (presentation 26.6.07 to British
Bankers' Association seminar on the Mental Capacity Act) and we
support the "Banking Matters to Me" campaign by the
Association for Real Change.
60. With regard to the Human Rights Act,
it is disappointing to hear the recent ruling from the Law Lords
that the Act does not apply to a publicly funded person residing
in an independent care home. It cannot be right that people should
be held to have more rights in one setting than another. We hope
that this anomaly will be addressed.
61. We are concerned that the Government's
review of discrimination legislation should not remove specific
duties to promote equality, such as the disability equality duty.
Rather, we would wish to see such duties extended beyond the statutory
bodies to which they currently apply.
THE POTENTIAL
OF THE
UN CONVENTION ON
THE RIGHTS
OF PERSONS
WITH DISABILITIES
62. We are of course delighted that the
UK is supporting the Convention. Clearly this has the potential
to strengthen anti-discrimination law. The most important advance
from our perspective appears to be the obligation on State parties
to ensure the equal rights of disabled people to live independently
in the community and to "take effective measures" to
facilitate full inclusion and participation in the community.
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