Written evidence submitted by Mencap
Mencap is the leading charity working with children
and adults with a learning disability, their parents and carers.
We are fighting for a world where every child with a learning
disability has an equal right to choice, opportunity and respect,
with the support they need.
About Mencap
Mencap supports the 1.5 million people with a learning disability
in the UK and their families and carers. Mencap fights to change
laws and improve services and access to education, employment
and leisure facilities, supporting thousands of people with a
learning disability to live their lives the way they want.
About learning disability
A learning disability is
caused by the way the brain develops before, during or shortly
after birth. It is always lifelong and affects someone's intellectual
and social development. It used to be called mental handicap but
this term is outdated and offensive. Learning disability is NOT
a mental illness. The term learning difficulty is often incorrectly
used interchangeably with learning disability.
Mencap welcome the inquiry into the provision of
services beyond the school day for young people. Many young people
with a learning disability, including those with profound and
multiple learning disabilities (PMLD)[115]
would welcome increased opportunities to access high quality activities,
which are meaningful to the individual, outside of the school/
college day. People with PMLD have very complex health and communication
needs and as a result they can face specific challenges to being
included. Complex health needs include conditions such as complex
epilepsy or being 'technology dependent' for example needing
oxygen, tube feeding or suctioning equipment. See Appendix 1 for
more information about complex health needs.
KEY ISSUES
Play, sport and the arts play a key role in promoting
well-being. They can give a sense of achievement, provide fun,
social opportunities and promote healthy living and social inclusion.
Children and young people with a learning disability can face
a number of barriers to accessing play and leisure opportunities:
Attitudinal discrimination
This remains the most fundamental barrier to young
disabled people accessing youth service. Within the existing provision
of services, the inclusion of young disabled people is dependent
on staff training. However, awareness of learning disabilities
remains low. Therefore specific emphasis should be placed upon
learning disabilities awareness training, so that staff have the
necessary tools to equip them to provide an appropriate learning
environment for young people with a learning disability. Only
from their positive approach to creating an inclusive environment
can the whole group thrive.
Accessibility
Whilst legal obligations have gone some way to ensuring
public services fulfil their duty to make the environment accessible,
the cost implications can allow services not to do so. The practical
changes to an environment can be seen as the extent of making
it inclusive; however a service's responsibility goes much further.
To be truly accessible for children with a learning disability,
a culture of inclusive practices must be implemented so that all
activities and engagement with peers can be accessed equally.
Financial.
The additional costs families face when caring for
a disabled child or young person often prohibit them from being
able to afford the quality of service their child needs. To add
context, Contact a Family suggest that almost a quarter are going
without heating (23%). Up from 16% in 2008 while one in seven
(14%) are going without food. Down from 16% in 2008[116]
Suitability.
All activities provided by services should be fully
inclusive for young people. However many of the mainstream providers
have limited activities that cater for a majority of services
users but excluded many disabled people from fully participating
effectively.
Transport
Until all public sector transport have a legal obligation
to be accessible, young disabled people remain at a severe disadvantage.
This presents a real barrier to young disabled people accessing
services, especially if they are out of area.
WHAT IS
MENCAP CALLING
FOR?
All
children and young people with a learning disability to be able
to take part in accessible and inclusive play and leisure activities.
National
indicators for access and satisfaction with play and leisure services
should require specific recording in relation to disability.
Public
bodies to fulfil the requirements of the Disability Equality Duty.
Sufficient
trained staff to be provided by services to promote the safety
and well-being of children and young people with a learning disability.
Services
to provide accessible activities, venues, equipment and facilities
which enable children and young people with a learning disability
particularly those with PMLD to have the same opportunities to
take part in activities as others.
Local
authorities to actively involve young people with a learning disability
in the design and delivery of youth/positive activities in accordance
with the positive activities duty.
MENCAP'S
RESPONSE
Bellow we have given our answers to the questions
posed in the consultation document, with specific relation to
the needs of young people with a learning disability accessing
leisure opportunities.
The relationship between universal and targeted
services for young people
Mencap are strongly committed to further the inclusion
agenda so that all children will enjoy equal leisure opportunities
within their local communities. Too often however, universal services
do not actively promote the inclusion of young disabled people
in a way that is accessible to them. In some instances, children
with a learning disability are explicitly excluded from activities
eg specific sports events within the UK School Games and sports
funding and events connected to the Paralympic Games. Many children
with a learning disability find services and venues are unwelcoming
and the attitudes of staff, other children and parents can be
the biggest barrier to them accessing services. Instead such services
are so rigid that they expect young people to fit into them. This
restricts choice and excludes a large section of young people.
They can often face bullying by other children and this and the
fear of bullying can stop children with a learning disability
from wanting to take part in activities.[117]
The answer however is not to increase targeted services,
as this will further divide society, but to accommodate the individual
needs of the cliental. Pulling on the expertise of those who provided
targeted services, the future agenda of universal providers should
be focused on creating such inclusive environments. The skills
of staff and the level of staff support available is the main
priority for ensuring provision is fully inclusive of young people
with learning disabilities. If children and young people
with PMLD are to be fully included in society and to have access
to the same activities and opportunities as all other children,
then there needs to be increased focus on the children's workforce
developing the skills needed to work with children with PMLD.
How services for young people can meet the Government's
priorities for volunteering, including the role of National Citizen
Service
Essentially, Mencap believe that both education and
leisure providers should be equipping young people to attain paid
employment, as people with a learning disability are massively
underrepresented in the job market account for only 7% of those
known to social services.
As the Coalition Government's agenda is focused on
getting disabled people into employment, there must be a holistic
approach that stems across all service providers that aims to
promote this agenda to the young people that it will affect.
Inclusive services benefit communities. If services
for all young people fully include those with a learning disability
it will inevitably create young adults who are accepting of people's
varying needs. This will in turn promote employment opportunities
in the local communities.
Which young people access services, what they
want from those services and their role in shaping provision
Like all young people, access to adequate services
is a crucial part of social and emotional development is essential
to young people with learning disabilities. Young people with
a learning disability may find it hard to take part in certain
activities without them being adapted. Buildings can be inaccessible,
particularly for those with profound and multiple learning disabilities.
They can lack necessary equipment and facilities such as Changing
Places toilets.[118]
Lack of transport can also be a significant barrier. Moreover
young people with a learning disability from BME communities can
find that their cultural and religious practices are not always
understood or respected by services[119]
and families' awareness of services can be
low.[120]
It is important that people with PMLD are able to
access mainstream and specialist activities (where appropriate).
Out of school activities can be a good opportunity for young people
with and without a disability to spend time together. It is important
that activities tailored to meet the needs of individuals with
different needs. For example, young people with PMLD will experience
the world largely on a sensory level. It is important that those
people running activities take this into account and ensure that
activities tap into the different senses. Many young people will
enjoy sensory activities, so these types of activities can be
good activities for all young people to take part in.
Many people with PMLD benefit from specialist activities
like hydrotherapy. It is important they are able to access these
types of activities too. Other groups in the community are also
likely to benefit from specialist activities like this, for example
elderly people and also other young people with disabilities and/or
health needs, and so where possible these activities too could
bring people together. Although some people with PMLD may prefer
or need to do activities on their own, because they need lots
of space and/or a quiet environment. They should be able to access
activities which meet their needs.
Often children with a learning disability and their
families are excluded from decisions about their own lives and
care plans and in the planning of services. It is crucial that
young people with PMLD are involved in planning, designing and
monitoring services. Although young people with PMLD won't be
able to tell you what they want using formal communication such
as speech and signs, there are creative ways[121]
they can be supported to share their preferences and input into
decision making processes, for example, they could share film
of themselves enjoying activities they want to be able to access
after school or college. Other young people and family carers
who understand the needs of young people with PMLD could also
be official PMLD representatives on those groups involved in planning,
designing and monitoring services.
The relative roles of the voluntary, community,
statutory and private sectors in providing services for young
people
It is important that people with PMLD have the level
of staff support they need to take part in activities (all people
will need 1 to 1 support at least). If the person is not able
to have this level of support then they will not be able to access
activities at all. It is also important that thought is given
to how the person will get from school/ college to the activity.
There will need to be suitable, accessible transport for the person
with PMLD and their supporter to use.
Providing activities beyond the school day will enable
the person with PMLD to do meaningful things outside the school
day and outside of the home. It will also enable parents, who
often have an intense caring role Mencap's No ordinary
life report (2001) found that 60% of parents of children and adults
with PMLD spent more than ten hours per day on basic physical
care to have a break. But they will only get a proper
break if they don't have to be involved in transporting the person
from school/ college to the activity. It is important that this
can work without their input. This is likely to mean arrangements
will need to be made by the school/ college and the place where
the activity is happening.
The training and workforce development needs of
the sector
Staff often don't have the understanding or the skills
to work with children with a learning disability. As a result,
these children are left without the support to access the same
opportunities as other children such as supervision or personal
care. Staff need to have the specific skills to meet the complex
health and communication needs of young people with PMLD. In order
to meet communication needs it is important that staff are trained
in the non-formal communication techniques and approaches which
can be used to help interpret the needs and choices of children
and young people with PMLD. It is important that all those who
support children with PMLD spend time getting to know their means
of communication and finding effective ways to interact with them.
It is important that information about how the person
communicates is shared between settings (for example, if the person
has a communication passport, then staff could spend time going
through this with the person). It is also important that the person
is able to bring any tools and equipment which supports the person's
communication eg objects which are important to the person or
film showing how the person communicates and what their preferences
are.
The impact of public sector spending cuts on funding
and commissioning of services, including how available resources
can best be maximised, and whether payment by results is desirable
and achievable
With significant reductions in local authority's
budgets, there is an inevitable risk to services for young people
with learning disabilities. Whilst the recent commitment to fund
further early years initiatives through the Early Intervention
Grant, it is a hoped that such investment is made in services
for the older age group. With the government's agenda of promoting
a through-life approach to supporting young people to achieve,
there is the opportunity to view services for young people as
a vital resource in ensuring their attainment.
In order to maximise this agenda, joint commissioning
is an effect method of securing a holistic funding approach that
can ensure there are common outcomes, which satisfy all contributing
budgets. However, key to the outcomes should at its heart be the
positive nature of the process upon the young people using the
services. Joint commissioning ensures that all contributing members
of a local authority, and other stakeholders, have a vested interest
in the success of the young people they are providing for.
Furthermore the joint delivery of services can achieve
greater results as the expertise of all providers can be utilised.
This approach can benefit young people, their families, and local
authorities as the costs are reduced through sharing the budgets
and it can avoid risk of double funding services.
How the value and effectiveness of services should
be assessed
Mencap would urge that any assessment of services
for young people include an indicator of how inclusive it is of
young people with a learning disability. The equality of service
for disabled children should be the starting point of a service's
quality of provision. For young people with a learning disability,
the value and effectiveness of a service should be assessed on
a regular basis on the following factors:
Is
the young person able to attend the service on an equal footing
to non-disabled service users? (ie accessible transport, venue,
an escort provided if required, additional costs met if spent).
Are
staff fully trained and equipped to meet the young person's needs
and to support them with the service's natural setting?
Can
the young person fully participate in all activities provided
for by the service, with adaptations if necessary?
Are
all service users encouraged and supported to socialise appropriately
if the young disabled person requires a different approach?
Is
the young disabled person's family adequately consulted by staff
and do they get an equal amount of time from caring for the young
person as other families during the service's session?
Is
the service providing a social and emotional develop opportunities
to the young person?
The outcomes that give a service its value should
be assessed through the success of the young people being provided
for. For young people with a learning disability, such outcomes
must take account of the young person's realistic potential and
be gauged on his or her own merits. Integral to the successful
outcomes is how well the process suits that young person's needs.
Fundamentally, a service should be assessed on its ability to
enable all young disable people to be full and active participants
within their local communities.
December 2010
APPENDIX 1
UNDERSTANDING PROFOUND AND MULTIPLE LEARNING
DISABILITIES
LEARNING NEEDS
Like all of us, people with profound learning disability
will continue to learn throughout their lives if offered appropriate
opportunities. Such opportunities must take account of the fact
that most people are likely to be learning skills that generally
appear at a very early stage of development. For example, cause
and effect, such as pressing a switch to make something happen,
or turn-taking, such as rolling a ball between two people. Learning
is also likely to take place very slowly. For example, some people
may have a very small short-term memory and so will need the opportunity
to encounter events many times before they become familiar. Constant
repetition and a great deal of support will be needed to generalise
learning into new situations. Supporting the learning needs of
a child or adult with profound and multiple learning disabilities
also needs to take account of any additional needs, such as sensory
needs (see sensory needs section), so that the best approach to
learning can be established.
COMMUNICATION NEEDS
Many people with profound and multiple learning disabilities
rely on facial expressions, vocal sounds, body language and behaviour
to communicate. Some people may use a small range of formal communication,
such as speech, symbols or signs. However, some people with profound
and multiple learning disabilities may not have reached the stage
of using intentional communication, and they may rely on others
to interpret their reactions to events and people. Most people
are also likely to find it difficult to understand the verbal
communication of others. Some people will rely heavily on the
context in which the communication takes place, such as the clues
given by a routine event. It is important that those who support
people with profound and multiple learning disabilities spend
time getting to know their means of communication and finding
effective ways to interact with them.
PHYSICAL NEEDS
Some people described as having profound and multiple
learning disabilities are fully mobile. Many may use a wheelchair.
Others have difficulty with movement and are unable to control
or vary their posture efficiently. These individuals will need
specialised equipment to aid their mobility, to support their
posture and to protect and restore their body shape, muscle tone
and quality of life. It is vital that people with physical needs
have access to physiotherapy, occupational therapy and hydrotherapy,
and that their carers receive training to enable them to manage
their physical needs confidently on a day-to-day basis.
COMPLEX HEALTH
NEEDS
There is a wide range of conditions that children
and adults with profound and multiple learning disabilities may
have, such as complex epilepsy. An increasing number of people
are described as being 'technology dependent', which may mean
they need oxygen, tube feeding or suctioning equipment. Some people
have conditions that are described as "life-limiting".
Others have fragile health and may be susceptible to conditions
like chest infections and gastro-intestinal conditions. Skilled
support may be needed for feeding and swallowing, as good nutrition
is a vital part of achieving good health. Many people may experience
a combination of medical needs and need access to specialised
health support to ensure the holistic management of these conditions.
People with profound and multiple learning disabilities
experience the same health conditions as the rest of the population.
The challenge is about how these conditions are identified in
people who may not be able to communicate their symptoms easily.
For example, it is very important to develop effective ways to
recognise and manage pain. It is crucial that a proactive approach
is taken to ensure that each person is able to achieve the best
possible health they can, for example, by arranging annual health
checks and support to access general health care.
SENSORY NEEDS
Special attention needs to be given to the sensory
needs of people with profound and multiple learning disabilities.
Many people have some degree of visual and or hearing disability
or a combination of both. Some people's sense of taste or smell
may be affected by the drugs they are prescribed. Other people
may be hypersensitive to touch. It is essential to know as much
as possible about a person's vision, hearing and other senses
in order to develop the most effective way to approach their learning
and communication needs.
UNDERSTANDING BEHAVIOUR
Some behaviour that is seen as challenging may arise
because little attention has been given to other needs. It should
never be assumed that certain behaviours are just part and parcel
of having profound and multiple learning disabilities. For example,
a behaviour that services may see as challenging, such as pushing
people, may be an attempt to communicate a need. Other changes
in behaviour may be due to undetected health needs, such as scratching
the face because of a toothache. However, some behaviour will
be because people are simply doing things that they enjoy, for
example putting a hand under the tap to enjoy the feeling of running
water. The important thing is to understand what the behaviour
may mean and to respond accordingly, such as checking out any
possible health causes or making changes in the environment.
MENTAL HEALTH
NEEDS
The mental health needs of individuals with profound
and multiple learning disabilities are often not considered. For
example, someone who becomes very quiet and passive may be seen
as having improved their behaviour when in fact they are depressed.
Research suggests that people with profound and multiple learning
disabilities may be more susceptible to mental health conditions
than the rest of the population. It is important that careful
attention is given to these needs and that the right treatment
and support is found to meet them.
PROFOUND AND
MULTIPLE LEARNING
DISABILITIES AND
OTHER SYNDROMES
OR CONDITIONS
There are many other conditions and syndromes used
to describe people, some of whom could also be described as having
profound and multiple learning disabilities. Conditions and syndromes
that are more usually associated with profound and multiple learning
disabilities include Rett syndrome, Tuberous.
Sclerosis, Batten's Disease and some other rare disorders.
However, some people who are described as having autism and Down's
syndrome may also have the combination of profound learning disability
and one or more of the needs we have discussed therefore,
they could equally be described as having profound and multiple
learning disabilities.
SUPPORT NEEDS
All children and adults with profound and multiple
learning disabilities will need high levels of support from families,
carers and paid supporters. This will include help with all aspects
of personal care, such as washing, dressing and eating, as well
as ensuring that each individual has access to high quality and
meaningful activity throughout their lives. Those who offer this
support will need access to good quality and appropriate training,
especially around particular skills. For example, on particular
feeding needs and communication approaches. Good support is person-centred,
flexible and creative to enable the person with profound and multiple
learning disabilities to learn and to achieve their full potential.
115 Find out more about the needs of young people
with PMLD in Appendix 1 Back
116 Contact
a Family, Counting the Costs 2010 - Families with disabled children
struggle to afford food and heating, July 2010 Back
117
Mencap 2007 Bullying Wrecks Lives Back
118
Mencap's response to Fair Play http://www.mencap.org.uk/page.asp?id=566 Back
119
Simon (2006) Diversity Matters Back
120
Hatton et al (2002) Supporting South Asian families with a child
with severe learning disabilities Back
121
Mencap and BILD's Involve Me projects looks at creative ways
of involving people with PMLD in decision making processes. Back
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