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The same as you? A review of services for people with learning disabilities

6 Working well together

1. Good partnerships between all the people, agencies and professionals involved in supporting people with learning disabilities are essential if they are to get the services they need when they need them. This chapter focuses on:

• the importance of professionals working closely with people with learning disabilities, their families, friends and relatives and building on these natural forms of support;
• the need for professionals to work together better so that the vulnerability and risk experienced by many people with learning disabilities in different areas of their lives is managed better; and
• professionals working better together to help people through the many different stages in their lives, as they develop and their needs change.

At the end of this chapter, we consider:

• the role of primary and general healthcare;
• people with learning disabilities who have mental health problems;
• people with challenging behaviour;
• people with learning disabilities in the criminal justice system; and
• people with profound and multiple learning disabilities.

Where we are now

2 We all use family, friends and people in the community to help us in our daily lives. People with learning disabilities are no different and the contribution made by this natural form of support is not only significant in itself, but also important for other services to recognise and build on. Yet this does not tend to be the starting point of planning and delivering services. As we highlight earlier there are many information gaps, but the greatest are to do with carers and family support.

3 People with learning disabilities are vulnerable. They suffer high levels of both physical and sexual abuse⁶⁵. People with learning disabilities are often the victims of crime, many of which are not reported or followed up through the criminal justice system⁶⁶. The Mental Welfare Commission for Scotland drew attention to the lack of proper assessment and co-ordination of care in relation to one vulnerable person with a learning disability in their 1998/9 Annual Report⁶⁷. We look at this case in more detail below.

4 Present arrangements for assessing, planning and support are not working as well as they could. Professionals do not work as well as they should with the person with learning disabilities or their family. Nor do they always work well with each other. People are assessed by many different agencies and professionals for different and limited purposes, yet too often no clear plan of action is made as a result. For instance, it is not uncommon for people to find themselves in contact with more than one occupational therapist either from:

• a medical service;
• a learning disability service; or
• social work services.

5 We were also told that information about good practice between professionals working with people with learning disabilities is not shared enough. This also applies to those in other specialist services, such as for people with mental health problems, older people and so on.

6 There is general agreement that the everyday health needs of people with learning disabilities too often go unrecognised and untreated. Health promotion and health screening services, hearing and sight tests which are accessible to most of the population are under-used by people with learning disabilities⁶⁸. Everyday health needs are the responsibility of GPs and the primary care team. However, it has been reported that two-thirds of people with learning disabilities need more health support than primary care can provide⁶⁹. Specialised health needs often need referring on to other specialists, for example, specialist consultants, professionals allied to medicine and community learning disability teams. For many young people with complex needs the supports they need will be lifelong.

7 People in our user and carer survey were concerned that healthcare professionals did not spend enough time in assessing the health needs of the person. Some parents believed that healthcare professionals did not know enough about learning disabilities because they had not been given enough training. There is evidence that when professionals train together they develop a better understanding of each other’s roles.

8 Planning for the different stages in people’s lives is also neglected. In our user and carer survey most families felt that assessments do not take account of their children’s future needs, such as moving from:

• school to further education or resource centres;
• education to employment;
• hospital to community placements;
• services for children to those for adults or older people.

Even more importantly, they reported a lack of co-ordinated planning for the time when they would no longer be there.

9 Caring for a person with a learning disability can be a worthwhile and rewarding experience for many family carers. However it can also place a strain on their emotional well-being, health, finances and relationships. Studies of the psychological well-being of mothers caring for disabled children show higher levels of anxiety and depression compared to women in general. These levels are significantly higher for those caring for children who have other learning disabilities and complex needs⁷⁰. During the review carers highlighted the fact that the issues they face are a constant feature of their lives. The opportunities they want to take and the problems they try to overcome are not simply present when they get professional attention.

10 Too often at the moment services for people with learning disabilities do not take a wide enough view. Services need to be much more centred on the experience of the people involved, both to meet their needs and to be effective. A system that arranges a tenancy for a person with a learning disability, but leaves them lonely with nothing to do is based around the service, and does not put the person first. A professional who does not take account of parents’ views when they have provided care for 25 years is not setting the service in the full context of the lives of those involved.

11 Effective partnerships between all the people and professionals involved in supporting people with learning disabilities depend on developing natural supports in the community such as family and friends and using specialist knowledge and expertise to build and maintain long-term benefits. Professionals and others do best when they arrange the service they offer by taking account of the lives of the people they are trying to help.

12 By building natural links and relationships into assessment and planning and developing care, agencies will use their resources more effectively and get better results for people.

Vulnerability and risk

13 Risk features in several different areas of life for people with learning disabilities. Their general vulnerability makes them a target for abuse. They may be exposed to risks in leading a full life. Sometimes, there are risks for them and others, for instance, around taking and giving medicines. These risks need to be assessed and managed. They should never be an excuse for not taking action or taking inappropriate action which does not take account of what users and carers want and need to lead as full a life as possible.

14 We have already said that, wherever they live, people with learning disabilities sometimes experience high levels of sexual or physical abuse and are more likely to be victims of crime. The Mental Welfare Commission’s 1998/9 Annual Report highlights a particular case of someone with a mild to moderate learning disability who lived a chaotic life after her mother died, being exploited by several people. She was seriously assaulted and continued to be vulnerable even when it was obvious to professionals that her learning disability was affecting her judgement.

15 The inquiry decided that there had not been enough supervision and protection during the period under review and that the assessment of risk was not dealt with well enough in case discussions. It is very important that social work departments understand when it is appropriate to resort to using compulsory powers to protect through guardianship.

16 The Mental Welfare Commission’s Report made some far-reaching recommendations including that the Care Programme Approach should be used for people with learning disabilities who have complex needs. We agree with this recommendation. We have responded to some of their other recommendations here and elsewhere as they are relevant to our concerns to strengthen assessment and planning care. They are also relevant to improving the knowledge and skills of the various professionals who work with people with learning disabilities.

17 Many of those we interviewed during the review told us that too much time, money and energy was spent on over-protecting people with learning disabilities. As ordinary citizens we can make many decisions about the risks we take in our lives. We may choose to go rock-climbing, knowing that injury is possible, but the sense of achievement makes it worthwhile. People with learning disabilities need support to achieve their personal goals. This should not mean putting them at risk but it also does not mean over-protecting them. For this to be possible, users, carers, support staff and managers need to be clear about what risks are acceptable. The Scottish Executive has recently issued guidance for nurses, health visitors and midwives on protecting vulnerable people⁷¹. Some local authorities already have a policy and provide staff training on assessing and managing risk. This should be the case for all.

Recommendation 22 The Scottish Executive’s National Care Standards Committee is currently developing standards for residential and nursing care homes for all care groups including people with learning disabilities. These standards should look clearly at assessing and managing risk in working with vulnerable people.

Recommendation 23 All local authorities in association with health boards, NHS trusts and other agencies should develop policies and guidelines on protecting vulnerable adults. Social work departments should review their procedures on guardianship to include making a formal assessment of risk a normal part of deciding whether an application should be made. Local authorities and health boards should use the Care Programme Approach for people with learning disabilities who have complex needs whether these needs are caused by disability or vulnerability.

Handling transitions better

18 The needs of many people with learning disabilities are lifelong and change as they get older. It is very important that services recognise this and work together to make sure moving from one stage of a person’s life to another is planned for and managed as smoothly as possible. This section suggests ways in which agencies might manage this better. It links back to our proposal for personal life plans.

Early years

19 When parents are told that their newborn baby (or child) has a condition which includes learning disabilities, their lives are changed for ever. Their child may still be the greatest source of joy and inspiration and bring pleasure and pride to them, their family and friends. However, their world will not be as it was. They may face many challenges, some of which may frustrate or exhaust them.

20 If a child is born with a learning disability or fails to reach expected early developmental milestones families need:

• information, practical help and emotional support from knowledgeable professionals;
• access to ongoing advice, local child care, paediatric and child health services which can meet their child’s needs;
• therapy services included with ordinary children’s services;
• programmes which teach parents and carers in nurseries, schools and respite settings how best to help each child develop; and
• early information, advice and options for pre-school and primary education.

School years

‘The most important rights of children and young people with Special Educational Needs (SEN) are the right to an appropriate education and the right to be fully integrated into the community to which they belong when they are adults. Inclusion in ordinary schools or, segregation into special classes or schools, is only defensible if it facilitates these two rights’ (Hornby)⁷².

21 The Scottish Executive’s current policy aims to increase social inclusion but accepts a need for special schools. Every child should have full-time education that meets their needs, and support to make the most of the learning opportunities available. The new Education Bill before Parliament plans to bring forward a provision at the committee stage of the Bill to the effect that "It shall be presumed that, where under the 1980 Act an education authority are to provide school education for any child of school age, such education shall be provided in a school other than a special school." Local authorities have particular responsibilities to assess and support children with special educational needs. This includes children with learning disabilities.

22 Special schools provide for a smaller number of children whose needs are too great for most ordinary schools to meet, such as those with profound and multiple disabilities. Some profoundly disabled children manage well in mainstream classrooms with a lot of support. The Scottish Executive has issued guidance for staff working with children in educational settings on providing intimate care for children and young people with disabilities⁷³. The most important consideration is that the education should be good-quality and meet the child’s needs, not least their wish to be included and have friends.

23 We share the view of the Riddell Advisory Committee on Education Provision for Children with Severe or Low Incidence Disabilities that, in future, a higher number of children with severe low-incidence disabilities will be included in mainstream schools close to home. However, they will need specialist services to make sure that their education, health and social needs are met⁷⁴. Specialist and mainstream services need to work together to achieve these aims. Setting up a National Special Educational Needs Advisory Forum, to be chaired by the Deputy Minister for Education, Culture and Sport will give the Scottish Executive a way of monitoring developments in this area.

24 Whatever form of provision is most suited to a child’s needs, it should form part of the family’s wider network of support so that the family experiences a ‘seamless’ service. A number of people told us there is little continuity of service or staff, and relevant information is not exchanged when children move from early years to primary and then secondary education.

Future Needs Assessment

25 Future Needs Assessment and putting it in place is particularly important to young people with learning disabilities. When a child has a Record of Needs and reaches 14, education authorities must get ready to carry out a future needs assessment (FNA). This, and the action that follows from it, is particularly important to young people with learning disabilities. This should consider whether the child would benefit from school education after he or she has reached the statutory school leaving age (16), whether the Record should be continued throughout the period the young person is still at school and what provision is needed after school. The Record must be discontinued when the young person stops receiving school education or reaches his or her eighteenth birthday. Social work services have a duty to assess whether a recorded child is disabled and, if so, to carry out an assessment of the young person’s need for social care services.

26 There are several difficulties with the current arrangements:

• the child and family may have had little contact with social work services before the FNA;
• the social work contribution to the FNA is usually from children’s services, which may have limited knowledge of post school education, and welfare services available to young adults;
• at the point of handover to community care services for adults there may be a need for a further assessment;
• there is no legal duty on agencies to put the FNA into practice as there is with the Record of Needs;
• healthcare needs are not always considered;
• social work services rarely offer options that would include committing financial resources two to five years ahead;
• there is a focus on existing services, and access to day care, rather than needs-led person-centred planning;
• education authorities have no responsibility for putting the FNA into practice after the child has left school; and
• putting the FNA into practice often proves difficult as it relies on resources provided by other agencies.

27 We believe it is necessary to introduce a new duty for local authorities to identify a responsible person (who could be the local area co-ordinator) to advise and help the person with learning disabilities and their family put the FNA into practice (unless they say otherwise).

Recommendation 24 The Scottish Executive should consider introducing a new duty on local authorities to identify a responsible person to advise and help the person with learning disabilities and their family put the FNA into practice.

28 On leaving school young adults and their families may no longer have access to the same short break services, with which they are familiar and comfortable. And the educational opportunities to learn and develop which they had at school may not be available. Local authorities are responsible for meeting these needs, and for co-ordinating the contribution of other partners (including further education college boards of management). GPs, paediatric, learning disability and physical disability services should agree arrangements for people moving from child to adult services to make sure people have appropriate continuity in the healthcare they receive.

29 Making an early start on changing the existing patterns of service is important. We realise that a number of authorities have taken policy decisions not to place any future school leavers in existing day centres. We believe that local authorities throughout Scotland should consider this approach.

Adulthood

30 Needs change over time and as people take up new opportunities they may blossom and look for more. A person leaving hospital may be happy in a small group setting at first but eventually want a home of their own. A person leaving school may want some further education but eventually want a job. Some people with learning disabilities will develop long-term relationships and a number will want to get married. Professionals need to be ready to respond to changing needs as people develop.

31 Professionals and services need to recognise that adolescents and adults with learning disabilities have sexual rights and needs, while at the same time making sure those who may be vulnerable to abuse are protected. The current review of the Mental Health Act is considering how best to protect people with learning disabilities. At present, it is an offence for a man to ‘knowingly have sexual intercourse with a woman if she is suffering from a state of arrested or incomplete development of mind which includes significant impairment of intelligence or social functioning’⁷⁵. While this provides appropriate protection for some people, there are also concerns that people’s right to express their sexuality is denied by some services. Some agencies in Scotland have developed policies on sexuality and relationships for people with learning disabilities and we agree with this.

We think local joint policies should include:

• appropriate and accessible information;
• advice and guidance to staff supported by appropriate training;
• access to family planning services; and
• an assessment of risk and the need for protection.

32 Some people with learning disabilities may choose to be parents. As with other parents, they will need a range of support and other help from their families and other agencies. Like other people, parents with learning disabilities can benefit from training and support in developing parenting skills. Some areas offer extra support which is helpful to them and their children⁷⁶.

33 Local authorities and NHS trusts should make sure that the needs of parents with learning disabilities and their children are identified and met.

Growing older

34 Improvements in health and social care mean that people with learning disabilities can now expect to live longer. While people with complex needs and people with Down’s syndrome still have a reduced life expectancy, people with milder learning disabilities now have a life expectancy similar to other adults in the general population⁷⁷. Older people with learning disabilities should not be seen as different from older people generally. Services need to reflect all the needs of older people and the extra needs of those with learning disabilities. A recent review of the literature identifies large areas of need which have not been met amongst older people with learning disabilities and services are often not aware of them⁷⁸.

35 Local authorities and health services need to make sure that older people with learning disabilities have the same access to health and social care support as older people generally. They should make sure there are links with mainstream services for older people and those with dementia to identify the most appropriate services to provide. Specialist knowledge is important here as elsewhere and health boards and local authorities should make sure that there are local professionals who have appropriate expertise to make sure dementia is diagnosed early on. Health services should promote the health and well being of older people with learning disabilities.

36 Older people with learning disabilities and people with dementia will need appropriate day services and recreational opportunities with appropriate links to the mainstream services for older people. Health boards, NHS trusts and social work departments should make sure that care staff and support workers have the training they need to meet the needs of older people and those with dementia.

Recommendation 25 Health boards and local authorities should make sure that local professionals are trained to look out for early signs of dementia and so can provide assessment and appropriate responses and services.

37 Older people with learning disabilities are often cared for by parents who become frail and less able to provide the physical support or care needed. In particular the effect on family carers of caring for children and adults with more complex needs has been shown to result in greater health needs, stress, anxiety and depression for the carers⁷⁹. Many parents who are carers find it hard to plan for the future.

38 Professionals should respond to carers’ readiness to plan and be sensitive to cultural and ethnic influences that may affect attitudes to family caring. They should consider carers’ needs as a very important part of any care package for people with learning disabilities.

Recommendation 26 Life plans for people with learning disabilities who live with their parents should include plans for a time when parents may no longer be able to provide care.

Bereavement

39 We all experience loss in our lives but for people with learning disabilities the loss of a parent who is a carer may lead to a double crisis. For adults who live with family members, death or increasing frailty of parents may mean having to move home. This can have huge health consequences and the process needs to be handled very carefully⁸⁰. Maintaining as much contact and continuity as possible with friends and others is essential. It is also very important that people with learning disabilities have the time and space to grieve.

The role of primary and general healthcare

40 A general practice with 1500 patients can expect to have 22 to 30 people with mild learning disabilities and up to six people with severe disabilities. People with learning disabilities have a greater need for primary care support but tend to use it less than the general population. People with learning disabilities also may need longer appointments to be able to communicate what they need and this does not always happen. There are some initiatives being developed to help people with learning disabilities communicate more clearly about pain and illness⁸¹.

41 Health boards should offer regular health checks for all people with learning disabilities. Health professionals should pay particular attention to people with complex needs. GPs, paediatricians or specialists in learning disabilities all have a part to play. Primary care NHS trusts need to make sure that there are appropriate links between community learning disability specialists and primary care services. Community learning disability nurses have a particularly important role working between primary care and specialist services. Larger primary care centres might consider choosing a GP with lead responsibility for managing and co-ordinating primary healthcare for people with learning disabilities and their families.

42 The healthcare needs of people with learning disabilities are not always looked at well enough in medical education, including continuing education. Nor are the wider issues about how doctors should best communicate with them. Medical schools and those involved in medical education should examine how good their training is in these respects.

Professions Allied to Medicine (PAMs)

43 PAMs work in a number of health, education and social work settings such as health centres, hospitals, schools, nursing homes, day centres and in people’s own homes. They can also provide a specialist service as members of community learning disability teams. The main professionals involved in assessing and treating people with learning disabilities include physiotherapists, occupational therapists, speech and language therapists, chiropodists, dieticians and creative therapists such as art, drama and music therapists. Most health boards have specialised paediatric therapists who work with children and families, GP, paediatricians and schools. We were impressed by the quality of service in many areas although staff shortages and an increasing number of referrals of people with complex needs has led to difficulties in providing a fair service across the country. We heard of children waiting for up to two years in some areas to see an occupational therapy assistant.

44 While most therapists are employed by the health service some schools employ their own physiotherapists, speech and language therapists and occupational therapists. Local authority social work departments also provide occupational therapy services for people living in the community and there are developing links with health service occupational therapy services in some areas (such as providing equipment). A number of health boards and social work departments have set up joint equipment stores for people using services and have introduced new arrangements to avoid overlapping assessments. In some areas they are making progress towards a joint occupational therapy service.

45 PAMs have a very significant role to play in services for people with learning disabilities. Many people will be able to use general community and hospital based services for specific treatment. Some people with learning disabilities will need support to use these services. Children and adults with extra and complex needs will need ongoing services from a range of PAMs linked to community learning disability services. Young people have had difficulty in accessing services when they leave school.

People with learning disabilities and other problems

46 Some people’s needs will be lifelong. Others will have particular needs for services at different times in their lives. More complex needs may arise from:

• significant difficulties with communication, moving about or physical or social development;
• the complicated nature of support and services needed to help a person with a learning disability cope with mental health problems, or getting into trouble with the law;
• the difficulties for the person or families, carers and others caused by people who injure themselves, who are aggressive or destructive or who display socially-unacceptable behaviour or other challenges;
• the extraordinary services that may be needed to cope with unusual or rare conditions; and
• specific medical problems such as epilepsy, disruptive or disordered sleeping patterns, problems with eating and poor physical and mental health.

We cover some of the main areas below.

People with mental health problems

47 Local psychiatric services and learning disability services should focus on maintaining positive mental health and providing appropriate assessment and treatment by closely working with social work and primary care colleagues. Some people with learning disabilities who also have mental health problems are rough sleepers and use night shelters. Ending the need to sleep rough is a key commitment for the Scottish Executive and needs all mainstream services to work together better.

48 Health boards should make sure that there are appropriate arrangements for people with learning disabilities who have mental health problems going into hospital. In setting up services, health boards should consider the need to have staff trained in learning disabilities and staff trained in mental health. Health boards should make sure that there is agreement on the roles and services provided for children with learning disabilities and mental health problems across paediatric services, learning disability services and child and adolescent mental health services.

49 We need to give special consideration to a small number of people affected by the Mental Health Act. Since 1913 people with learning disabilities have been specifically included with those with mental illness in Scottish Mental Health law. The review of the Mental Health (Scotland) Act 1984⁸² is considering whether to continue to include people with learning disabilities within mental health law. In Scotland there are 178 people with learning disabilities detained in hospital. 44 are in the State Hospital Carstairs⁸³. Most have a mild degree of learning disability. About one-third of people with learning disabilities who are detained in hospital have been diagnosed with a mental illness. However, mental illness is also recognised as a feature for a number of other people who are also detained.

People with challenging behaviour

50 The term ‘challenging behaviour’ has replaced other terms such as ‘difficult’ and ‘problem’ behaviour and is less offensive to many people with learning disabilities. It also emphasises the origins of the behaviour, highlighting the role services need to play rather than blaming the person. The term ‘interactional challenge’ has recently been suggested as a more appropriate term⁸⁴. This emphasises how the person acts in response to the environment. For the purpose of our review the term ‘challenging behaviour’ includes people whose behaviour is very challenging to services, whatever the presumed cause.

51 A small number of people often show challenging behaviour frequently, while others display challenging behaviour on and off and may only need specialist services at a particular time.

52 Many professionals agree that we should not separate services to people with challenging behaviour from general services. However, extra support and specialised services may be necessary. The Department of Health commissioned a report in 1993 which agreed with this view⁸⁵.

53 There should be a range of clinical services and treatments available such as psychotherapy, cognitive behavioural approaches and behaviour analysis^{86 87 88}. Successful and long-term therapeutic interventions will be those that avoid looking at only the specific problem behaviour.

54 Health boards, NHS trusts and social work departments should make sure that care staff and support workers have appropriate training to meet the needs of people with challenging behaviour. They also need to consider the support needs of parents and families where children have challenging behaviour⁸⁹.

55 Joint policies on using restraint⁹⁰, and managing aggression, should be in place, supported by training. These policies should also be constantly monitored.

Recommendation 27 Health boards and local authorities should make sure that there is appropriate specialist support such as additional support teams to improve services for people with learning disabilities who have challenging behaviour. The aim of the specialist services should be to support mainstream services and to help people stay in their own homes as far as possible.

People with learning disabilities in the criminal justice system

56 There is some evidence that people with learning disabilities may be over-represented at all levels in the criminal justice system^{91, 92}. We do not have enough information on people with learning disabilities who may be in prison and their needs and vulnerability. People with autistic spectrum disorders may also be included in this group. A number of people with learning disabilities who offend may be managed appropriately within the criminal justice system. Using probation and delayed sentencing alongside a therapeutic programme has been shown to be effective at reducing the risk of offending for some people with learning disabilities⁹³.

57 A small number of people are detained under the Mental Health (Scotland) Act because of offending and other ‘seriously irresponsible’ behaviour. People detained because of their learning disabilities and offending or seriously irresponsible behaviour may have a mental illness. The current review of Mental Health law is considering options for this group. We recognise the need for a legal framework for the very small number of people who are a risk to themselves or others.

58 The Mentally Disordered Offenders Strategy⁹⁴ identifies the particular needs of people with learning disabilities who show offending behaviour. It also makes appropriate recommendations for providing community services with effective training and support.

59 Health Boards and local authorities should make sure that there are local professionals with expertise in working with offenders with learning disabilities. Services should make sure an appropriate risk assessment is carried out and that treatment and ongoing support are provided as far as possible within the community.

60 Health boards should make sure that secure accommodation is provided for the small number of people who need this. There should be links between secure settings and less-secure forms of accommodation in the community. There should be enough properly-planned aftercare, including access to a range of rehabilitation and training facilities and opportunities. Life plans should include assessing need as part of the planning process for leaving any secure setting. From April 2000 a valid community care assessment is a condition of having support charges met by Housing Benefit if somebody is living in the private rented sector.

Recommendation 28 The Scottish Executive should commission research into the number of people with learning disabilities in prison or in secure accommodation and the arrangements for assessing and providing them with care. Health boards, local authorities, and police forces should make sure that an appropriate adult scheme is in place to meet the needs of people with learning disabilities who come into contact with the police.

People with profound and multiple learning disabilities

61 The terms ‘profound and multiple disabilities’ or ‘profound and complex needs’ have replaced terms such as ‘special care’, and ‘profoundly handicapped’ and are seen as recognising the very specific needs of this group.

62 As well as profound learning disability, people will have other physical disabilities and sensory impairment or both. Most will also have significant healthcare needs. 66% will have severe epilepsy, most will have difficulties in eating and drinking, and problems with their breathing. As a result, services should meet this range of needs.

63 Information and support for families typically does not include specific information on profound and multiple disabilities. So, it is important that carers get information on learning disabilities and physical disabilities and sensory impairment.

64 Staff providing services to people with profound and multiple disabilities would benefit from national standards for training in specific procedures. These procedures should include tube-feeding, continence management, inserting rectal diazepam and using equipment such as suction machines.

Recommendation 29 Local authorities, by working with health boards and the voluntary sector, should make sure that they look at the extra needs of those with profound and multiple disabilities and those of their carers. The centre for learning disability should set up a national network of support to local providers offering advice and training on the extra needs of people with profound and multiple disabilities.

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