INTRODUCTION

  The PMLD Network is a group of organisations who are working together to fight for the rights of children and adults with profound and multiple learning disabilities (PMLD).[133] The Network believes that focusing on the needs of these individuals, who face double discrimination, should be a priority[134]. The needs and rights of people with profound and multiple learning disabilities are frequently neglected. They remain some of the most disadvantaged people within our society.

  The vision set out in Valuing People[135] and Improving the Life Chances of Disabled People[136] have set out some relevant and exciting new initiatives, such as the modernisation of day services and individualised budgets. However, they have largely failed to understand the particular needs of people with profound and multiple learning disabilities. It is vital that we understand the distinctive needs of people who are often excluded from society and respect their right to be included.

Who are people with profound and multiple learning disabilities?

  The PMLD Network has developed the following definition:

Children and adults with profound and multiple learning disabilities have more than one disability, the most significant of which is a profound learning disability. All people who have profound and multiple learning disabilities will have great difficulty communicating. Many people will have additional sensory or physical disabilities, complex health needs or mental health difficulties. The combination of these needs and/or the lack of the right support may also affect behaviour. Some other people, such as those with autism and Down's syndrome, may also have profound and multiple learning disabilities.

All children and adults with profound and multiple learning disabilities will need high levels of support with most aspects of daily life.

  Appendix 2 provides more information on what it means to have a profound and multiple learning disabilities and the accompanying CD "Meet the people" contains video clips which focus on the lives of six people with profound and multiple learning disabilities.

  This submission sets out the main issues that need to be tackled so that people with profound and multiple learning disabilities can take up their rightful place in society.

The need for better planning

  People with profound and multiple learning disabilities have been described as the invisible minority. There is no formal agreement on the words that we use to describe them, and consequently information on their needs is poor. Nobody knows how many people have profound and multiple learning disabilities in the UK. Local authorities, even if they do have an up-to-date learning disability register, do not collect specific data on people with profound and multiple learning disabilities. However, it is clear that the number of people with profound and multiple learning disabilities is rising. For example we know that due to better neonatal care, and advances in medical technology such as tube feeding, an increased number of profoundly disabled children are surviving. Adult services are now coming into contact with higher numbers of people need who need much more intensive support, but there is a lack of planning for their needs.

  Services are by no means seamless as young people move from child to adult services. LEAs actually withdraw their funding. Children's social workers sever ties and adult services do not always provide a named social worker to take over. There is often little or no communication between these people. Parents often feel they are falling into a black hole.

Tom's transition story

Tom was a very sociable young man with profound and multiple learning disabilities, including complex health needs. Although he had no speech he had a great sense of humour and a whole range of ways that he communicated his keen interest in food, films, beer and blondes! He attended a residential special school. His parents were both teachers, his mother a teacher of pupils with profound and multiple learning disabilities. They knew the system and they did everything they could to get transition planning underway for Tom so there would be a good plan for when he left school. They were told not to worry, it was too early to start planning. But despite their best efforts, by the time Tom was approaching 19 no provision had been identified for him. The school kept him on for a bit longer, but eventually set a deadline for him to move on. His parents, and eventually a social worker, searched frantically for a residential placement for him but to no avail.

In the end, Tom spent 96 days in an NHS psychiatric assessment unit. His parents think that this was because there was nowhere else for him to go. Eventually a suitable placement did come up in the area and he was transferred to a suitable residential service. But during this time, when he was not in an environment where he was supported by people with the right skills, his health was deteriorating. Tom was eventually diagnosed with a number of serious conditions but it was too late for Tom and he died a short while after his 20th birthday.

Tom's parents complained to social services about the lack of transition planning and the failure to plan for or commission new provision for him. Both complaints were upheld:

      "I agree with the conclusion that both Tom and yourselves were entitled to expect accommodation would be available within a reasonable time to meet Tom's needs and we have failed to deliver this"—Head of adult care services.

However far Tom's death may also be attributed to the care he received in the NHS (on which, see Tom's story in Mencap's 2007 report Death by indifference[137]), the question Tom's parents continue to ask is, "If good planning had been in place, and Tom had reached `safe hands' sooner, would he still be alive today?"

      "The totality of the experience of the family was akin to that of experiencing a storm. When it was all over, it was not only the winds that had died"—Tom's father.

The need to challenge attitudes and values

  One of the greatest barriers that people who have profound and multiple learning disabilities face is the negative attitudes of others. Judgements are made about the meaning and quality of people's lives. This can stop people being offered some of the more innovative forms of support, such as individual funding, because some people do not think that they will benefit, or they think that the costs involved are too high. But these negative attitudes can also be life-threatening—for example, if they result in the denial of medical treatment. These judgements are only ever subjective. Most people do not know what it is like to have profound and multiple learning disabilities and perhaps experience the world by touch and smell. Such judgements also show a failure to understand the contribution that each individual will make to the lives of the people around them.

  It is important that everyone understands that people with profound and multiple learning disabilities have the same rights as every other citizen. We must enable each individual to engage with their world and to achieve their potential so that their lives go beyond being "cared for" to being valued for who they are as people.

The need for better family carers support

  Mencap's 2001 report No ordinary life found that 60% of parents of children and adults with profound and multiple learning disabilities spent more than ten hours per day on basic physical care. One third of these had a continuous caring role of 24 hours per day. 78% of families received either no support at all or less than two hours per week. Unsurprisingly, few families were satisfied with the care support services they were receiving.[138]

The caring task associated with someone with profound and multiple learning disabilities is both highly intensive and long lasting. It has major consequences for the entire family. A parent needs to constantly attend to basic needs such as eating, drinking, washing and changing. In addition, many parents have to provide high levels of physical care, such as lifting and positioning, and cope with a wide range of other essential needs. Typically, a parent will need to support their son or daughter's complete health needs. This may include the use of special equipment, such as suction equipment and oxygen cylinders, or being able to administer various kinds of medication. These are arduous and time consuming tasks, taking up many hours of the day and extending into the night . . . people with profound and multiple learning disabilities currently have no "voice" with which to demand better services. Their parents are so busy fighting their way through the day, fighting to get even very basic needs met, that it is hard for them to fight for their son or daughter's rights. The presence of children and adults with profound and multiple learning disabilities is therefore barely visible within our community. Consequently, both they and their families are disadvantaged across the whole spectrum of service provision.[139]

  In particular, parents felt dissatisfied with assessment processes. They felt assessments were not thorough enough, not reviewed frequently enough and failed to deliver what they needed.

  Mencap's 2006 report Breaking Point found that seven out of 10 families have reached or come close to breaking point because of a lack of short break services. Five out of 10 families who have had a carer's assessment got no services as a result. One in three families has experienced a cut in their short break services in the last year.[140]

The need for better healthcare

  People with profound and multiple learning disabilities may have a wide range of health needs, such as complex epilepsy. An increasing number of people are technology dependent, which can mean they need oxygen, tube feeding or suctioning equipment. However, access to mainstream health care is poor as many health professional are ill equipped to meet the needs of people with profound and multiple learning disabilities. Many families and care staff report that health professionals hold negative assumptions and beliefs about the quality of life of individuals with profound and multiple learning disabilities. This is illustrated by the worrying trend in "Do not resuscitate" orders attached to people with profound and multiple learning disabilities.

  Some people may be described as having "life limiting conditions". Others have fragile health and can be susceptible to conditions like chest infections and gastro-intestinal problems. Good nutrition is vital for achieving good health, and skilled support is needed for feeding and swallowing in many cases. Many people experience a combination of medical needs and need access to specialised health support to ensure they are holistically managed.

  Many people with profound and multiple learning disabilities have multiple physical disabilities and need access to physiotherapy, hydrotherapy and postural care. There is growing concern that adults in particular who may have had regular access to this during childhood have limited support once leaving school. This can result in deteriorating body posture and in some cases, their premature death.

  A further example is that Optometrists are not given enough extra money to test people with profound and multiple learning disabilities and so their needs are often not picked up. This affects people's quality of life. Annual health assessments must include checks of vision and also hearing.

  In addition, of course, people with profound and multiple learning disabilities experience the same health conditions as the rest of the population. The challenge is in how these can be 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 such as by introducing annual health checks and health action plans to ensure that each person is able to achieve the best possible health they can.

The need for greater representation

  The advocacy movement has done much to ensure that the voices of people with learning disability are heard but the Learning Disability Task Force, Partnership Boards, the national forum, regional forums and the majority of advocacy groups are not representative of people with profound and multiple learning disabilities.

  This means that their needs remain low on the government agenda. It also directly affects the quality of their lives. People with profound and multiple learning disabilities have the greatest need for advocacy, but they have limited access to it. One survey showed that only 11% of advocacy schemes could support someone with profound and multiple learning disabilities. Most people with profound and multiple learning disabilities will not use formal communication such as speech or sign language and yet they are largely surrounded by a workforce that is not trained to understand their communication method. Nor do they have good access to advocacy services with the skills to support them.

John's story

John is a young man with profound and multiple learning disabilities. When his family, who lacked support, felt they could no longer care for him, he was moved into a group home.

The staff at John's new home struggled to understand his communication and what he wanted. Frustrated and confused, John's behaviour deteriorated. Soon John was admitted to a psychiatric unit as staff were unable to cope. Eventually John got an advocate who spent time with him, got to know him and worked with those who knew him on his individual communication. The advocate supported relationships to be slowly built between John and the staff at his residential home.

John needed an advocate to speak up for him, if he had had one sooner he might never have had to experience inappropriate, and traumatic, time in a psychiatric unit.

  An example of a project aiming to support people with profound and multiple learning disabilities to speak up is "Getting to Know You" (photo below). This is a Mencap pilot project which offers an introductory training to self advocates with learning disabilities in including and speaking up for the needs of people who do not use any formal communication system. Self advocacy projects around the country are requesting this training for their members as people with profound and multiple learning disabilities are so excluded from this type of work. Peer advocacy relationships are being built up and the issue of exclusion from decision making is being approached. This work is also very empowering for people with learning disabilities who do use words and speak up for themselves as their skills and experience are so valued.

The need to remove barriers

  In addition to the significant barrier of lack of communication, there are some physical barriers facing people with profound and multiple learning disabilities. Two very important examples of these are manual handling practice and the lack of fully accessible toilets:

Manual handling

  Local policy and practice in manual handling has become a major barrier to community inclusion for many disabled people. A combination of a risk-averse culture, fear of litigation and over-zealous interpretation of health and safety legislation has resulted in many local authorities imposing blanket bans on manual handling and insisting that all lifting takes place with the use of mechanical aids such as hoists. For many people, this restricts their access to the community. For others, for whom not all lifting can be done mechanically, it can actually mean that they cannot access services or support because no one is able to meet their manual handling needs.

  The law on moving and handling is quite complex. The Health and Safety at Work Act 1974 says that "it is the duty of every employer to ensure, so far as it is reasonably practicable, the health, safety and welfare at work of all his employees". The translation of this law into local authority policies has caused difficulties. Many people have followed the Royal College of Nursing's Code of Practice for Patient Handling, which aims "to eliminate hazardous manual handling in all but exceptional or life-threatening situations".[141] In recognition of the growing concerns around this issue, the Health and Safety Executive issued guidelines that stated that "implementation of policy and practice on lifting and handling should not place any unreasonable restrictions on client's right to autonomy, privacy or dignity".[142] This document made it clear that manual handling practice also has to comply with other requirements under community care legislation such as the Disability Discrimination Act and Human Rights Act.

  A legal challenge was mounted by a family in East Sussex caring for two adult daughters with profound and multiple learning disabilities who were receiving no services due to a blanket ban on manual handling. They won their case and the High Court ruling was heralded as a landmark ruling.[143] The DRC summarised the implications for local authorities as:

1.  Blanket no lifting policies are most certainly unlawful.

2.  Manual handling regulations do not prescribe a "no risk" regime.

3.  Some manual handling is an inherent and inescapable feature of the task an employee is employed to do.

4.  Employees have to accept a greater degree of risk if their job is to lift people and not objects.

5.  All risk assessments must be based on consideration of individual needs and circumstances.

  In July 2005 the organisation National Back Exchange introduced new policy guidance which includes advice on how to make decisions balancing the need for safe working practices with the human rights of the individual.[144]

  There appears to be a gradual shift in manual handling policy and practice towards a more balanced approach. However, this issue remains highly problematic for many individuals with manual handling needs.

Fully accessible toilets

  Another major barrier is the serious lack of adult-sized changing facilities. Standard accessible toilets meet the needs of many disabled people but not all. Most people with profound and multiple learning disabilities, and thousands of other disabled people who need personal assistance to change incontinence pads, face the choice of either staying at home or having to take the risk and indignity of being changed toilet floors. In July 2006 the Changing Places Consortium launched the Changing places, changing lives campaign for changing places toilets which include an adult sized changing bench, a hoist and enough space for two carers as well as the disabled person. The campaign's website is at www.changing-places.org. There are now 30 such facilities in the UK, but this is a very long way short of the number needed. Evidence is currently being submitted to the relevant British Standard committee, and if successful will help to ensure that a growing number of these facilities will appear. Removing this physical barrier to community inclusion will dramatically improve the quality of life of thousands of people—not just those with profound and multiple learning disabilities. This is also an example of how getting support right for those with the very highest levels of need can benefit many others in the community.

The need for better support

  While many barriers can be challenged and even removed, we have to acknowledge that ultimately we cannot change the nature of people's disabilities. This means that we need to understand the specific needs of people with profound and multiple learning disabilities in order to ensure that the right support is in place. Since the launch of Valuing People there has been far too little focus on these needs, with the result that sometimes well-intentioned initiatives actually further disadvantage some people. One example of this is the modernisation of day services.

  Traditional forms of day services for people with profound and multiple learning disabilities were often segregated, and provided even less opportunity for access to the community or inclusion than other day centres. However, they were equipped for complex physical and health needs and thus were appropriate in protecting people's dignity, as well as offering opportunities that met people's specific needs. Often community involvement provision does not have the equipment or the staff training to do this.

  Valuing People was the catalyst of this move towards modernisation. It includes the objective "To enable people with learning disabilities to lead full and purposeful lives within their community and to develop a range of friendships, activities and relationships".[145] Day services, it says, should now be structured flexibly around each individual, their interests and their needs.But modernisation has not achieved this for many people with profound and multiple learning disabilities.

  The PMLD Network believes that in order for the principles in Valuing People to be realised for all, attention must be paid to the specific needs of people with profound and multiple learning disabilities. People with profound and multiple learning disabilities have the right to access their community like everyone else. This means staff training (in issues such as complex communication, complex health needs and understanding the needs of family carers), specialist facilities such as Changing places toilets in the community, more accessible transport, imaginative and meaningful use of the community (including the use of specialist facilities where these are the only kind that meet people's needs), and respect and experience with the different forms of communication that are used to express choice.

The need for equality of opportunity

  For most young people, a vital element of growing up involves loosening parental ties and leaving home. For young people with profound and multiple learning disabilities this stage in their development may never take place. Most stay at home well into adulthood, as parents feel the alternative forms of provision are not acceptable. Some parents are offered no alternative and struggle on for as long as they can, but when parents become ill or die, most local authorities make hasty and ad hoc decisions about where family members with profound and multiple learning disabilities will be placed. The placements are often inappropriate, far from the home community, and will most likely be in traditional forms of residential care.

  This lack of real choice over where and with whom people may live is just another example of the high level of discrimination faced by people with profound and multiple disabilities in many aspects of their lives. The right I to have a home of one's own, to be able to live independently, is one that most adults take for granted—but it is not available to most adults with profound and multiple learning disabilities.

Victoria's story

Victoria lives in her own tenancy in the London borough of Islington. She has 24 hour support, a circle of friends and a person centred plan and very much lives the life of her choice. Her mother Jean has had to consistently fight to keep this in place. Islington have now, made the decision that they will never again fund individuals with complex needs to live independently because the costs are too high.

  Individual budgets are another example of an innovative model of support with the potential to have a hugely beneficial effect on the quality of life of people with profound and multiple learning disabilities. However there remain very few examples where someone who needs very high levels of support has been offered this alternative. Is this an example of how some people can be seen as too disabled, too difficult and too expensive to have equal access to support?

Conclusion

  The needs of people with profound and multiple learning disabilities are distinctive and mean that this group are currently being excluded from society. This can be turned around through:

—  Better planning—The number of people with profound and multiple learning disabilities is rising and services and communities are not equipped.

—  Challenging attitudes and values—Judgements about the meaning and quality of people's lives should not stop innovative forms of support being offered to those with the most profound disabilities.

—  Better support for family carers—Family carers are doing a huge amount of stressful, unpaid work. They are happy to do it but cannot carry on unless they get more support.

—  Better support with healthcare—People with profound and multiple learning disabilities have very complex health needs. It is also important to remember that people with profound and multiple learning disabilities will have the same health needs as the rest of the population but may have difficulty communicating pain or discomfort.

—  Better representation—People with profound and multiple learning disabilities clearly have the greatest need for advocacy, yet research shows they have the most limited access to it.

—  Removing barriers to participation in the community—such as:

1)  Poor manual handling practices, (a major barrier to community inclusion, insistence on mechanical aids to lift people restricts their access to the community).

2)  Inaccessible toilets, (a serious lack of adult sized changing facilities means most people face the choice of either staying at home or having to take the risk and indignity of being changed on toilet floors).

—  The right support—Modernisation of services, although well intentioned, still needs to take into account some people's more complex needs or it will further segregate them. For example, the move towards community involvement provision, replacing traditional day services, is currently excluding many people with profound and multiple learning disabilities, as provision does not have the equipment or staff training to meet needs.

—  Equal opportunities—Most young people experience the process of growing up and loosening ties to their parents. The lack of real choice over where and with whom people may live then is just another example of the high level of discrimination faced by people with profound and multiple learning disabilities. It is a basic human right to have a home of one's own.

Action points

—  Undertake research into the numbers of people with profound and multiple learning disabilities.

—  Provide education around the meaning and quality of people's lives.

—  Set a minimum short breaks entitlement.

—  Train healthcare staff in the rights and communication needs of people with profound and multiple learning disabilities.

—  Provide an advocate for all people with profound and multiple learning disabilities.

—  Re-think manual handling policies.

—  Introduce mandatory planning of fully accessible toilets into all new planned public buildings.

—  Introduce the needs of all into staff training and innovative service provision.

—  Provide fully supported housing for all adults with profound and multiple learning disabilities.

134   "Valuing people with profound and multiple learning disabilities" Mencap 2001 Back

135   "Valuing People: A New Strategy for the 21st Century" DOH 2001 Back

136   "Improving the Life Chances of Disabled People". Cabinet office 2005 Back

137   Death by indifference: Following up the Treat me right! report (Mencap, 2007), p. 14-15. Back

138   No ordinary life: The support needs of families caring for children and adults with profound and multiple learning disabilities (Mencap, 2001), p. 10. Back

139   No ordinary life, p. 5-7. Back

140   Breaking Point-families still need a break (Mencap, 2006). Back

141   RCN Code of Practice for Patient handling (RCN, 1996, reprinted 2002), p. 3. Back

142   Handling Home Care: Achieving safe, efficient and positive outcomes for care workers and clients (HSE, 2002). Back

143   A&B, X&Y v East Sussex County Council (2003), EWHC 167 (Admin), High Court. Back

144   The Guide to the Handling of People (5th Edition) (Back Care, 2005). Back

145   Valuing People: A New Strategy for the 21st Century' DOH 2001, p. 76. Back