The keys to life - Improving Quality of Life for People with Learning Disabilities

Shift the culture and keeping safe

Setting the scene

People with learning disabilities are now living more independently than ever and have greater access to communities and community living. However, a report published in 2012, Loneliness and Cruelty⁷², confirms that more people with learning disabilities are subject to abuse and harassment. This was also documented in Hidden in plain sight, which is a report of an inquiry into disability-related harassment published in 2011 by the Equality and Human Rights Commission. The report said that harassment is a commonplace experience for disabled people, but a culture of disbelief and systemic institutional failures are preventing it from being tackled effectively. The findings of these reports also reflect the feedback from The same as you? consultation. The main priorities for action were:

• Enhanced social networks for people with learning disabilities
• Creating a society where people look out for each other
• Safer public spaces
• Stronger prevention and support services from mainstream organisations

In 2012, the Scottish Government funded ENABLE Scotland to set up a Community Connections project to address the first three of these objectives. This project will research thirty local providers and organisations in North Lanarkshire to determine the type and availability of services they can provide to people with learning disabilities. The project will also work with two hundred local people with learning disabilities, through a combination of focus groups and one to one interviews, to map and identify their individual and common interests. Importantly the project will employ four people with learning disabilities, who will be able to shape and develop the project using their own experiences as well as increasing their employability, skills and confidence.

But this is only one potential example of what progress can be made in making friendships, having relationships and feeling safe to do so. There are many other pockets of work of this type across the country.

It is clear that people with learning disabilities of all ages are keen to build social relationships and networks with their peers in the community. However, the experience since The same as you? was launched is that achieving this is very difficult. It requires specialised services with clear delivery models and specific aims and outcomes.

Volunteer befriending is one example of this type of provision, and since Befriending Network Scotland was established, befriending services have become increasingly professional, with agreed codes of conduct, accredited training and recognised quality assurance schemes.

One such service is Interest Link Borders's specialist learning disabilities befriending service which has created over 650 befriending links since 2001 and has 300 children, young people and adults registered with it. Interest Link Borders has around 200 volunteers, including around 50 aged 18 and under, recruited from secondary schools.

Evaluations have shown that outcomes include:

• improved confidence, self-esteem, mental & physical wellbeing and life skills,
• high quality short breaks for family carers,
• high level of impact on volunteers' skills in communicating and forming relationships with people with learning disabilities.

A survey carried out by Befriending Network Scotland and Interest Link Borders in 2012, found that only a very small percentage of people with learning disabilities currently have a befriending link. Local authorities identified 26,000 adults with learning disabilities in Scotland in 2011⁷³ and, of these, around 330 (1.27%) enjoy befriending links.

What is needed, at a preventative level is to develop and embed good practice throughout Scotland so that people with learning disabilities have more places to go to have fun, feel safe and able to disclose any anxieties that they may have when they think they are being harassed, bullied or harmed.

The experience of Interest Link Borders will be valuable in clarifying how to achieve this.

SCLD also have a contribution to make in this respect. They are funded to work with local agencies to increase the capacity of people with learning disabilities to recognise hate crime and to know what to do to keep themselves safe. They will hold awareness raising events to promote good practice by frontline workers and will produce an accessible "what to do" guide, developed with people with learning disabilities. This will be part of a toolkit that will also include good practice for agencies in how to ensure appropriate responses to harassment.

Recommendation 33

That SCLD, in collaboration with ENABLE Scotland, should work with local voluntary services to:

• encourage the setting up and expansion of befriending services and natural networks for people with learning disabilities.
• work with local authorities and NHS Boards to ensure that the planning, commissioning, procurement and implementation of services gives scope for the inclusion of befriending services and natural networks.
• record the number of people receiving befriending services and natural networks in annual eSay statistical returns.

Relationships

The Scottish Government's publication Growing up in Scotland: Parenting and the Community Context Report⁷⁴ recognise that the lack of resources inhibits friendship networks⁷⁵.

From The same as you? consultation we know that relationships are of key importance to people with learning disabilities and essential for their wellbeing, but relationships come in many different forms. Being around other people encourages people with learning disabilities to develop their social skills. Developing social skills helps them to make friends and helps them to integrate into the community. People with learning disabilities are less likely to feel lonely or isolated if they have friends, family and carers to support them.

People with learning disabilities should be valued and be able to make friends and build relationships. They have the right to choose their friends and have choice and control in relationship situations. It is recognised that some people with learning disabilities will need support to meet others and build relationships.

Relationships take many forms. Each relationship is important to the sense of belonging, social inclusion of people with learning disabilities and important in realising the potential of people with learning disabilities to be all they can be.

Friends and partners

Having meaningful relationships is a priority for people with learning disabilities. They may be more prone to abuse and are more likely to be denied the opportunity to conduct their own lives as any adult would take for granted, including the ability to form and conduct relationships.

But having the chance to make and sustain friendships and relationships is something that improves their wellbeing and quality of life. Many people with learning disabilities want that chance to have a romantic, sexual and long-term relationship.

The same as you? evaluation tells us, however, that only one third of those interviewed were able to name at least one close friend. So there is a clear need for people with learning disabilities to be given opportunities to have friends and all the benefits this can bring.

Good practice

Equal Futures⁷⁶ is an organisation led by families that believes that everyone benefits from knowing other people. This might be family, friends, colleagues, neighbours or people we know through our activities. At Equal Futures they help families set up and maintain a lifetime Circle of Support around their relative with a disability. As part of the work they do, the Scottish Government funded Equal Futures to publish a Scottish Edition of Safe and Secure - Six Steps to creating a good life for people with disabilities which helps families to form a successful Circle of Support to create a good life for people with disabilities

Recommendation 34

That by the end of 2013 the Scottish Government in partnership with Equal Futures and other relevant organisations holds a friendship event to help people with learning disabilities to be supported to have more friends.

Good practice

Dates and Mates⁷⁷ is a friendship and dating agency run by people who have learning disabilities for people who have learning disabilities. The agency is co-ordinated by C-Change. They decided to organise social events which would allow them to meet new people and have some fun. Dates and Mates has been running successfully now for some time and the people who have joined have made some really good friends as a result.

The internet is increasingly used as a means to meet friends and partners which makes it important that people with learning disabilities who use social media can do so effectively and safely. One of the problems for professionals and parents is that the signs that a person is being groomed may be subtle and difficult to recognise, and that individuals may not recognise they are being groomed either.

Good practice

NHS Lothian, with Scottish Government funding, is carrying out innovative work in this area so that young people with learning disabilities are able to protect themselves when using the internet. They are providing internet safety education to support young people with learning disabilities to develop self-protective skills in this ever- developing digital age.

Good practice

NHS Forth Valley has also been funded by the Scottish Government to develop a resource for young adults with learning disabilities to support sexual health and wellbeing. The resource will be in a photo story format and will follow 4 different characters from a group of friends as they experience different types of relationships. The resource specifically focuses on exploring the development of relationships, dating, intimacy, sex and same sex relationships for young adults with learning disabilities.

The aim is to provide opportunity for support and information for people with learning disabilities to explore a range of different relationships and identify how they might use the learning from the resource to develop and sustain relationships for themselves.

Building Resilience

Not all relationships work well. Scottish Government policy is directed at supporting people to live safely within their community and to lead full and rewarding lives, free from bullying and harassment. Bullying is totally unacceptable. It is recognised that some adults and children with learning disabilities have been the subject of discrimination, exclusion, bullying and harassment and that such experiences have negative effects on their confidence as well as health and well-being. Education around prevention of bullying is key. One such project is the Scottish Government funded Open your Mind, not your mouth campaign, run by ENABLE Scotland. This campaign challenges people to think before they speak. Bullies sometimes don't realise the effect their actions can have on people with learning disabilities. The things they do and say can make people feel alone, depressed and isolated from their friends.

Many families wish to provide care and support for their family member with learning disabilities and, to enable this, building upon and developing their capacity to care of their family member is essential.

There is growing interest in the importance of developing resilience as a means to cope with life events, unexpected challenges and transitions that can be experienced by people with learning disabilities and their families. Developing resilience requires a focus on the needs of the person with learning disabilities, their family and carers and on developing capacity and responses from community resources as well as facilities to make such more accessible and responsive. Supporting people with learning disabilities to adapt to life challenges and enabling families to develop resilience, make use of community resources and build their networks of support, provides an opportunity to strengthen the capacity to self-care and shift the focus away from dependence on statutory health and social care services.

Recommendation 35

That research is undertaken to understand and analyse the factors that impact on how people with learning disabilities, their families and carers cope with adversity which will inform the development of appropriate care and support to sustain and enhance their resilience.

Family carers

The same as you? highlighted the fact that families are responsible for by far the most support for people with learning disabilities. In 2011 the eSAY statistics on adults with learning disabilities known to local authority services said that 44% of those adults live with a family carer.

What carers need is information at the right time about the supports available locally and nationally, a range of help to support them (including training and advice) to look after a person with learning disabilities and access to professionals who help them, and access to short breaks.

The Community Care and Health (Scotland) Act 2002 introduced the right to an independent carer's assessment and, for the first time in statute, described carers as partners in providing support. Yet in The same as you? evaluation only 48% of family carers interviewed had been assessed. Of those who had been assessed, one of the principal benefits was signposting to supports but others indicated that the assessment had not resulted in outcomes that they would value.

The value and contribution of carers is recognised by the Scottish Government in the publication and funding to support Caring Together, The Carers Strategy for Scotland 2010 - 2015⁷⁸ which aspires to ensure that carers are supported to manage their caring responsibilities with confidence and in good health, and to have a life of their own outside caring. It is a strategy that aims to improve the lives of all carers, including those caring for people with learning disabilities.

Carers have told us that help was often only given when there was a crisis (which costs more to provide). A little help earlier might have made their lives easier and cost less. Families receive different levels and quality of services depending on where they live. Many carers said they had trouble finding out about what social work, health or other services are available and families of ethnic minority backgrounds said there was not enough information available in other languages.

The importance of short breaks was highlighted as essential in supporting the carers to maintain the caring relationship. People with learning disabilities and their carers both benefited from the value of short breaks which are individualised and flexible.

Carers of people with learning disabilities want better support if they are to be able to care and avoid caring crisis. Small early low cost interventions will help avoid costly services when crisis happens. That is why it is important for statutory organisations and the third sector to work in partnership to deliver services to meet the individual needs of people with learning disabilities and their family carers.

Good practice

Some local authorities are implementing preventative options where the Carers Support Payment is for the direct benefit of the carer.

This scheme offered unpaid carers who provide substantial and regular support to the person they are caring for with a small, one-off payment of £250. The purpose of the payment is to meet the needs of the carer rather than to provide additional support to the cared for person. This may include support to maintain the carers health and wellbeing, for example gym membership, college courses, or perhaps short breaks so carers gain a valuable break from caring and their capacity to care is sustained.

Case study

Jennie is nine and is cared for by her mum and dad, Mary and Andrew. Jennie has Cerebal Palsy and is quadriplegic. Jennie cannot walk or talk and has a tracheostomy to help her breathe. There are over 24,000 parents in Scotland who, like Mary and Andrew, care around the clock for children who have learning disabilities - many never have the opportunity to have a break. When Jennie was five Mary found out about Enable Scotland's Lend a Hand Service, which provides short break respite. Jennie now stays with carers Joanna and Graham once every fortnight.

Mary says "The difference it has made to all of our lives is amazing. Firstly for Jennie she experiences different faces, different outings, different everything and she absolutely loves it. And now I am used to having that time with Andrew I realise it is important we get that break if we are to keep everything going and give Jennie the quality of life we want. Without the short break carers who look after Jennie I don't know what we would do - it has such an impact in our lives."

Recommendation 36

That to improve the availability of flexible, good quality short breaks for people with learning disabilities and their families and carers, the Scottish Government will enhance the voluntary sector Short Breaks Fund to support children and adults with learning disabilities including to provide opportunities and develop skills and confidence.

Older carers of people who have learning disabilities have reported their concerns about the lack of support available to help them plan for the point in the future when they become unable to care. Many of these carers experience anxiety and reduced peace of mind as a result. With Scottish Government funding, ENABLE Scotland published research, Picking up the Pieces, which makes recommendations to improve access to emergency planning pathways via the Carers Assessment

Recommendation 37

That the Scottish Government works with Enable Scotland to build on the work set out in the 2012 report, 'Picking Up the Pieces - Supporting carers with Emergency Planning' so that plans are put in place to support people with learning disabilities and their carers.

Good practice

PAMIS is a registered charity working with people with profound and multiple learning disabilities (PMLD) and complex care needs, their parents and carers and interested professionals. The priority is to provide support to family carers and this is carried out through PAMIS' dedicated Family Support Service, by co-ordinators covering 14 local authorities. Partnership working with families is at the heart of all PAMIS activities and is key to their role. PAMIS co-ordinators work with families and interested professionals to ensure that each child or adult they work with has the best possible opportunities for choice inclusion and quality of life.

Paid carers (support workers)

For many people with learning disabilities personalised supports and services enable relationships and achieve outcomes. Being supported by someone appropriate to their age, interests and personality is important. It is important that people with learning disabilities have choice and control over who their support workers are. Support services need to ensure that services for people with learning disabilities are personalised. The transition in building that relationship is critical if the relationship is to be long term and valued by those being supported and time needs to be taken to make an appropriate match. Where relationships are not working the needs of the individual with learning disabilities is paramount to decisions on whether that relationship continues. The same as you? evaluation identified that continuity of staff is also emphasised by family carers as important in building relationships. Some carers felt too many support workers was not beneficial to those being supported. The evaluation found that it was essential that support workers see it as their role to widen people's social relationships.

Parents with learning disabilities

Whilst policy documents such as the National Parenting Strategy⁷⁹, Getting It Right For Every Child⁸⁰ and the Scottish Good Practice Guidelines for Supporting Parents with Learning Disabilities⁸¹ state that early intervention and the right sort of ongoing support should be available to families where there are parents with learning disabilities, we know that often the reality for these families is very different.

Disproportionate numbers of parents with learning disabilities have their children removed. Anecdotal evidence indicates that implementation of the Scottish Good Practice Guidelines is at best patchy. Evidence has also shown that human rights to respect for private and family life (article 8 European Convention on Human Rights⁸² ) and the right of a child not to be separated from its parents on the basis of disability of either the child or one of the parents (article 23, para 4 UN Convention on the Rights of Persons with Disabilities) are sometimes not upheld. Steps are therefore needed to improve the support available to these families.

Clearly, as stated in the Children (Scotland) Act 1995⁸³, the needs of the child must come first, and so far as is consistent with promoting the child's welfare the local authority should provide services to promote the upbringing of children in need by their families. Research evidence shows that in many cases children's needs can be met well by parents with learning disabilities with support. Support provided needs to be tailored to the needs of the individual parents and might include training, ongoing support and some supplementation of care as needed.

Good practice

Local Area Co-ordination team has worked closely with People First parents group and Children and Families to produce an accessible children's plan. The plan uses easy read text, symbols and pictures to create a useful working document. It is to be used with families where there are communication difficulties. The long term goal is to have an accepted council wide user friendly tool to enhance successful collaborative working to assist parents with learning disabilities to understand the steps they need to take to look after their children.

Recommendation 38

That by 2014 parents with learning disabilities should have access to local supported parenting services based on the principles of Supported Parenting and that the Scottish Good Practice Guidelines for Supporting Parents with Learning Disabilities are being followed by professionals working with parents with learning disabilities to ensure better outcomes for families.

In some people's lives, however, there will be points where it is necessary and desirable for statutory agencies to intervene. This may be simply to offer support. In other instances, it will be to inquire, investigate and to manage allegations of harm.

Protecting children, young people and adults

As children and young people progress on their journey through life, some may have temporary difficulties, some may live with challenges and some may experience more complex issues. Sometimes they, and their families, will need help and support.

No matter where they live or whatever their needs, children, young people and their families should always know where they can find help, what support might be available and whether that help is right for them.

The Getting it right for every child (GIRFEC) approach ensures that anyone providing that support puts the child or young person, and their family, at the centre.

GIRFEC is important for everyone who works with children and young people. Practitioners need to work together to support families, and where appropriate, take early action at the first signs of any difficulty - rather than only getting involved when a situation has already reached crisis point. This means working across organisational boundaries and putting children and their families at the heart of decision making - and giving all our children and young people the best possible start in life.

Improving developmental and health outcomes for children with learning disabilities: early intervention

We know that early interventions can reverse some of the possible impacts of disadvantage on children's lives. Sometimes this will be about providing social supports e.g. that enable parents to be all they can be. Sometimes this will be about building resilience in individuals and families to mitigate the potential effects of poverty and stigma. What is less clear is the extent to which these factors are relevant for children with learning disabilities, whose disability itself shapes their environment. One recent review reported an increased risk of distress in parents (especially mothers) of children with learning disabilities.

What we need is a better understanding of how children's inappropriate behaviours impact on their parents and how this can sometimes lead to a spiralling effect where stress influences the interaction and prevents the best possible outcomes being achieved. We need to understand, too, why this pattern will differ from individual to individual so that early interventions can reap maximum benefits for all concerned. The desired outcome is to improve a child's development and their health outcomes through tailored programmes and through different types of psychological support to parents as well as parenting programmes.

A recent report highlights the scarcity of research on preventions and early interventions for problem behaviours for children with learning disabilities. A population health approach to parenting interventions for children with learning disabilities would clearly be useful given their reported high rates of problem behaviours and mental health issues.

It is not clear yet how to tailor interventions to make the greatest impact. Nor is it clear who should be given priority for the most intensive interventions. Verbal, cognitive and computer based interventions may not be accessible for everyone, and their different circumstances suggest interventions may need a different focus. Investments in "Sure Start" were implemented with considerable variation across Scotland, and it is not clear the extent to which children with learning disabilities and their families access these resources. It may be likely that in Scotland, families of children with more profound and multiple learning disabilities have poorer access to resilience building programmes such as Sure Start and parenting programmes. Interventions such as The Parents Plus Early Years programme, Stepping Stones Triple-P, and the tiered intervention, Incredible Years Parent Training programme could be suitably tailored if the information to do so was generated.

Children and Young People (Scotland) Bill

This proposed statute paves the way for fundamental reforms to the ways in which children and their families are supported as it will bring together earlier plans for separate legislation on children's services and children's rights into a single, comprehensive framework.

The main provisions are rights-based and are intended to:

• ensure GIRFEC is embedded in statute
• embed the rights of children and young people across the public sector in line with the United Nations Convention on the Rights of the Child (UNCRC).
• place duties on Scottish Government to take steps to further the rights of children and young people and promote and raise awareness of the UNCRC.
• require the wider public sector to report on what they are doing to take forward realisation of the rights set out in the UNCRC.

Lastly, there is a key role for Scotland's Commissioner for Children and Young People in that powers should be extended to undertake investigations on behalf of individual children and young people.

Adult Support and Protection (Scotland) Act 2007 (ASPA 2007)

The Adult Support and Protection (Scotland) Act 2007 came into force in October 2008 and since that time there has been considerable activity both at local and national level to develop this important area of work.

The core of the Scottish Government strategy is to enable the Adult Protection community, i.e. local authority partners, the scrutiny bodies, such as the Care Inspectorate, the Mental Welfare Commission, Healthcare Improvement Scotland and other relevant bodies such as the Scottish Prison Service, and the NHS to work better together to improve the experience for adults at risk of harm in our communities.

A key activity is the setting up, in 2012, of the Adult Protection Forum, which meets quarterly. This is currently facilitated by the Scottish Government, and comprises a wide range of practitioners and representatives from the Adult Protection National Conveners' group and other interested bodies such as the Care Inspectorate, the Scottish Prison Service and the MWC.

The intention is that the Forum takes a more proactive role in leading change, drawing on experiences at a local level, because it is at the local level that good practices develop and have the most impact. In addition, the Scottish Government is working with the scrutiny bodies to develop their role in supporting a drive to continuous improvement in adult protection, greater awareness and better prevention of harm.

The Forum has five national priority projects which are:

• Financial harm;
• Adult protection in care homes;
• Service user and carer involvement;
• Adult protection in accident & emergency departments;
• National data collection.

Multi-disciplinary teams, which include scrutiny bodies, have been set up to lead on of these projects.

Good practice

Heartfelt Limited are a training and consultancy organisation based in Scotland but working throughout the UK. Most of the people who work for Heartfelt are people who have experience of using social work or social care services or care for someone who does.

Heartfelt, in partnership with South Ayrshire Council Adult Support and Protection Service, aimed to use the experience of individuals and their families that have been involved in an adult support and protection intervention and to use that experience to help inform and advise how intervention services are developed and delivered in South Ayrshire in the future. Central to this, was the need to develop the skills and confidence of workers throughout South Ayrshire; develop a toolkit of resources for use with individuals and their families and a way of approaching adult support and protection in a way that makes sense to the people using it. Alongside this was the need to develop the confidence and capacity of individuals and their families/representatives to move from passively receiving those services to actively influencing them.

Guardianship

An adult lacks legal capacity to make a particular decision (such as where they would wish to reside on discharge from hospital) when there is evidence that s/he is unable to: understand the information relevant to the decision; or make a decision based on the information given; or act on the decision; or, communicate the decision; or retain the memory of the decision. A Guardianship Order provides the legal authority for someone to make decisions and act on behalf of a person with impaired capacity, and it would be appropriate to use it in order to safeguard and promote an adult's interests. Powers granted under an order may relate to the person's money, property, personal welfare and health.

The Adults with Incapacity Act 2000 Code of Practice provides guidance for persons authorised under guardianships⁸⁴.

Case study

Karen is in her forties and has a history of challenging behaviour. She moved into residential care as a child and now lives in supported housing with regular support from care staff, having occasional contact with her sister and a family friend. She is lonely and rarely leaves her house. The police became increasingly involved when her home was targeted as a party flat by a number of local people, including a man who was for a time her partner and who also has learning disabilities. She was increasingly subjected to verbal, financial and sometimes physical abuse and her health suffered because of the alcohol her 'friends' offered as inducement.

The Adult Support and Protection Act was used to obtain banning orders in respect of the key perpetrators, including the service user's partner, and professionals including the social worker, learning disability nurse and care staff worked together with Karen to encourage and support her to keep herself safe. The overall amount of input she received increased and regular inter-professional reviews were held. There was general agreement that Karen was safer, healthier and financially more secure as a consequence of the interventions under the Act.

Sexual Abuse

In 2005 the Scottish Government launched SurvivorScotland, the National Strategy for Survivors of Childhood Sexual Abuse. The aims of the strategy are to improve access to services for survivors; ensure joined up working in national and local mainstream services; raise knowledge and awareness within frontline services and for the general public and improve the lives of survivors.

Addressing the needs of survivors with learning disabilities was identified as one of the areas which required additional focus as part of the National Strategy. Since then funding has been allocated to Kingdom Abuse Survivors Project and Cornerstone to develop awareness raising for frontline staff and volunteers and to provide specialist support and counselling from a learning disability support worker.

In addition to this in 2011 the National Strategy funding supported the development of Learning Disability Six Dimension (6D) cards as a visual resource to support consultations about health and wellbeing with people with learning disabilities and to provide an opportunity for disclosure of childhood sexual abuse. Evaluation of the cards has shown that they were accessible to people with mild and moderate learning disabilities, facilitated discussion of a wider range of subjects and enabled more person centred consultations through the ability to gain more information.

The use of 6D cards has now been developed further for use along with Talking Mats. Talking Mats is an evidence based approach to support people with complex communication needs express their views, choices or perspectives on a topic. This helps GPs and other professional staff to carry out effective consultations where they can understand the impact that childhood abuse and the disclosure of that abuse can have and consider appropriate support.

The establishment of a National Confidential Forum (NCF) in 2014 will also provide an opportunity for adults with learning disabilities who were placed in institutional care as children to recount their experiences of being in care in a confidential, non-judgemental and supportive setting.