Services for young people - Education Committee Contents


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 It used to be called mental handicap but this term is outdated and offensive.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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Prepared 23 June 2011