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

Independent living

The Independent Living in Scotland project describes independent living as 'disabled people of all ages having the same freedom, choice, dignity and control as other citizens at home, at work and in the community. It does not mean living by yourself, or fending for yourself. It means rights to practical assistance and support to participate in society and live an ordinary life'⁵⁸.

When SCLD conducted a survey of around 600 people with learning disabilities, called 'How is it going?'⁵⁹ they described some of the positive and negative aspects of trying to achieve independence. On the positive side, almost 75% of people thought that they had enough opportunities to do the things that they wanted to with their lives. 80% of those surveyed thought there were enough places which they really liked going to in their area.

Many people with learning disabilities enjoy sport and creative arts which take place out with the day centre environment. Activities which centre on people's hobbies and interest include bowling, swimming, golf, the gym, horse-riding, photography, drama and art. These activities are important to people with learning disabilities as they have opportunity to meet friends and be part of the local community. Community activities provide great benefits to the health and wellbeing of people with learning disabilities and this improves their quality of life.

However, the same survey also identified barriers to socialising and being a part of the community which included:

• a lack of support staff
• inflexibility in support provision and
• a lack of transport, a lack of appropriate facilities or inaccessible buildings.

So there is still some way to go in enabling people with learning disabilities to live independent lives.

Good practice

Indepen-dance is an inclusive dance development company offering creative movement classes to people with diverse abilities, their carers, family members and volunteers. Throughout the year, the company performs work of high artistic quality created in collaboration with professional choreographers and dancers. Indepen-dance enables individuals with diverse abilities to participate in and benefit fully from a high quality arts provision.

As strong believers in an inclusive approach, all activities are offered to people with and without disabilities. Providing everyone with the opportunity to learn from each other and share a creative experience.

The Independent Living Programme, a partnership of Scottish Government, COSLA, NHSScotland and the Scottish Coalition for Independent Living, promotes and supports the need for change and to make things better for disabled people. The partners of the programme signed a revitalised shared vision statement in March 2013⁶⁰.

Mitigating the effects of UK Welfare Reform

The economic downturn continues to have serious impacts across Scotland, with levels of debt and financial problems remaining high, and people still finding it difficult to manage in a new and complex economic and jobs market.

At the same time, the UK social security system is going through the biggest process of reform since its inception, with changes being made to multiple benefits at one time, both in terms of the structure of benefits and the means by which they are administered. These reforms bring with them radical changes to the way that people on low incomes will need to manage their finances, at a time when day to day living costs are rising.

While simplification is a core objective of the UK Government's reform programme, transition from one statutory framework to another presents a number of different needs for information, advice and representation for individuals affected. The scale of change also means that demands for help are likely to increase for all advice and information providers.

The Scottish Government is developing a Scottish-specific response to the challenges this will create for people as well as the additional pressure it may place on organisations which are in place to assist them. It is working with local authorities in respect of the impact of welfare reform on their services and future plans for administration and access to social security benefits. It is also directing new money to agencies helping people facing the brunt of UK benefit cuts. This will include:

• Immediate cash injection of £300,000 for services such as those provided by Citizens Advice Scotland (CAS)

• Setting up a new £1.7 million fund providing direct support to advice services
• A further £3.4 million to be spent over the next two years on helping organisations mitigate the impact of welfare reforms.

A particular concern is the decision to close the Independent Living Fund (ILF) permanently from April 2015 which included responsibility and finances being devolved to the Scottish Government instead. The Scottish Government will launch a consultation to seek views on any potential new administrative arrangements for distributing the resource in Scotland following the ILF's closure. The consultation and the development of this policy will be taken forward within the principles of this strategy.

Day Opportunities

The same as you? encouraged local authorities to review their day care services. It said that the role of day centres should change to increasingly become resource centres. It proposed that nobody should go to a day centre full-time, and instead should use it as a base to identify and participate in activities in the wider community. It promoted that day centres or support services should become more community focused by helping people with learning disabilities to access continuing education and development, real jobs, achieve their desired outcomes and become more involved in their communities.

The past 13 years has seen a considerable change in the way day services are delivered, and it is clear that most local authorities and their partners have embraced the vision set out in The same as you?. A range of models are now in place across Scotland, some of which involve little or no contact with day centres, and others that involve an appropriate balance of centre-based and community activities.

There has been a gradual decline in the number of people with learning disabilities attending day centres, from 8,300 in 1998, to 6,164 in 2011. This has been accompanied by an increase in the number of adults with learning disabilities getting alternative day opportunities. In 2011, 10,286 people accessed alternative day opportunities and 65% of this group (6,695) did not use day services at all. 1,400 people with learning disabilities still attend day services 5 days a week. This includes people with profound learning disabilities and complex needs for whom there are limited options available to access alternative day opportunities.

The key point to note from the evidence is that day services are now much more person-centred and based around the assessed needs and wishes of people with learning disabilities themselves, taking into account the views of their carers.

The introduction of the Social Care (Self-Directed Support) (Scotland) Act in 2014 will see individuals and their carers increasingly taking control and making their own individual day caring arrangements. Across Scotland we already see many examples of highly individualised care packages, including people using direct payments, which do not involve buildings-based day care, and it is expected that Self-Directed Support will result in the number of people attending day services reducing further.

However, it is clear that for many people, day opportunities will continue to play an important part in the overall support arrangements. In terms of the future and ongoing development of day opportunities, local authorities and their partners should aim to have in place arrangements for individuals to access a comprehensive network of day services and resources that meet needs across the spectrum of learning disabilities.

It is recognised that for people with more complex needs and people with profound and multiple learning disabilities, day centres will continue to be an important part of their overall support arrangements. However, it is essential that services and staff continue to develop person-centred approaches that enable people to make choices and follow activities that are meaningful to them. In this context, services should continue to make progress towards community-based models of care and to support people currently dependent on buildings-based care to graduate into alternative opportunities.

The goal for many people with learning disabilities should be employment and meaningful activities. Day services can support people towards this goal through social and life skills development, and providing people with an environment in which they can directly experience the workplace and learn how to cope and thrive in this setting. This will require staff in day services to liaise closely with colleagues in further education, training and supported employment to design programmes which enables individuals to gain skills and progress to the level they are capable of achieving.

Another important aspect of day services is the opportunity to achieve better health outcomes. Providers of day opportunities across the spectrum of needs should therefore work closely with their local health colleagues to agree actions to improve health, identify underlying health issues, and take early action to address problems. In Renfrewshire, for example, specialist learning disabilities nurses undertake health checks on adults attending a day centre for people with profound and multiple learning disabilities and provide advice for staff on effective management of health conditions.

Good practice

Where day services are located is also of importance in maximising opportunities for social integration and for achieving health benefits. South Lanarkshire and Renfrewshire Councils, for example, have both invested in new day centres based entirely within their council leisure centres. Not only has this resulted in more people with learning disabilities becoming part of the wider community, but has also achieved the positive outcome of easy access to healthy activities such as swimming and sports. In both councils, there is the added benefit of encouraging the wider public to make use of the day services resources including sensory room, dance studio and music room, thus breaking down barriers traditionally associated with learning disabilities.

Recommendation 27

That by June 2018 the Scottish Government in partnership with local authorities, the Third Sector and people with learning disabilities and carers review and further develop day opportunities that are person-centred, assets-based and values driven and that take account of staffing, education, employment and transport issues.

Housing

A good quality home is at the heart of independent living. A home which provides them with the right type of house, in the right location, is a key requirement for those who need care and support to be able to live their lives to the full.

The great majority of people, including those with learning disabilities, already live in ordinary housing - not in hospitals or care homes - and this is where they want to stay. The need for quality housing and housing services will become more important over the next decade as a result of both the increase in the number of older people and the long standing policy objective of the Scottish Government to shift the balance of care still further away from institutional settings. It will also be important to mitigate the effects of welfare reform on those who use social housing. This is why the Scottish Government is providing an extra £2.5 million to social landlords to ensure there is advice on hand for people who will lose housing benefit due to the under-occupancy measures and other housing benefit changes being introduced by the UK Government.

Local Housing Strategies

The same as you? consultation identified a number of key issues to be taken into account in the planning and delivery of housing for people with learning disabilities. The consultation feedback also showed that one size does not fit all. There is a need for a thorough understanding and analysis of the housing needs of people with learning disabilities and this understanding should be grounded in the analysis of housing needs of people with learning disability contained within, and evidenced by, local authority local housing strategies (LHS).

Local authorities are required by the Housing (Scotland) Act 2001 to prepare a local housing strategy supported by an assessment of housing need and demand⁶¹. Local housing strategies are the sole strategic document on housing, homelessness, housing support services and fuel poverty.

National and local government have agreed that these strategies are at the heart of the new arrangements for housing and planning, both through their links to development plans and in terms of the direction of local housing investment. Accordingly, in June 2008 the Scottish Government and COSLA published new guidance jointly on local housing strategies, issued to local authorities⁶². A subsequent paper supporting the development and improvement of local housing strategies promotes good practice and supports improvement, partnership working and streamlining processes⁶³. Further guidance on review criteria for local housing strategies was published in 2009⁶⁴.

Local housing strategies provide the strategic direction to tackle housing need and demand and to inform the future investment in housing and related services across the local authority area. They deal with all aspects of housing and related issues, including homelessness, fuel poverty and housing support (all of which were previously covered in separate strategies) and have a stronger focus on outcomes.

As part of the process for supporting improvement, COSLA and the Scottish Government have agreed a joint review process for local housing strategies. A panel, including representatives from the Scottish Government and local government, will review the local housing strategy against ten key criteria.

The same as you? evaluation identified a number of key issues to be taken into account in the planning and delivery of housing and related services for people with learning disabilities which the following recommendations encapsulate.

Recommendation 28

That the Scottish Government, in partnership with COSLA and Association of Local Authority Chief Housing Officers (ALACHO), should undertake a review of Local Housing Strategies (LHSs) by June 2014. This should:

• identify examples of good practice in meeting the needs of people with learning disabilities
• highlight where improvement is needed
• make recommendations for change to be included in revised local housing strategy guidance together with a statement of resources available to deliver on the actions required, and any shortfalls remaining.

Recommendation 29

That Local Housing Strategies (LHS) should evidence how the views of people with learning disabilities and their carers have been taken into account in their preparation, and demonstrate the extent to which such views have been reflected in final LHS plans. LHS should also demonstrate explicitly the actual and anticipated contribution of all housing sectors to meeting the needs of people with learning disabilities, including housing associations and the private sector, together with the services which may be required to support independent living and who is best placed to provide these.

Supported living

The same as you? evaluation found that living independently encompassed a variety of different housing settings and support situations. It is important to note that living independently does not mean that people are living without support; some people receive varying amounts of support at home and this included support staff and housing adaptations. We talk about support staff in more detail in the chapter on shift the culture but it is important to note that good support staff can make a huge impact on a person with learning disabilities living as independently as possible.

Housing adaptations

Housing adaptations can help older people and disabled people live safely and independently at home.

In 2011 an independent Adaptations Working Group was established by the Scottish Government with a remit to review the organisation and funding arrangements for housing adaptations. The working group was formed in recognition that current systems for delivery of housing adaptations are unsustainable and have long-standing issues, mainly rooted in the inequalities, complexities and inefficiencies of the existing tenure based delivery arrangements.

The working group made their final report to Ministers in December 2012. They recommended fundamental change should be made to the funding and delivery arrangements for adaptations.

The report found that adaptations can provide wider social benefits. They may reduce dependence on people-based services, such as home care, supporting a more flexible lifestyle, which enables people to contribute to their communities or potentially take up employment. The provision of adaptations can also help people to remain in their own home, by reducing accidents, which might result in admission to hospital or to a care home. This means there is also a wider financial benefit, given the relatively low cost of adaptations in comparison with hospitals and care homes. This is particularly important when there is severe pressure on public spending.

Housing adaptations can range from small aids, such as handrails, to larger adaptations such as whole house redesigns to accommodate wheelchairs. Telecare also makes a contribution to people's support, independence and sense of safety within the home. Examples of this include having alarms fitted and mobile phones with GPS.

Good practice

Robert is a 41 year old with severe learning disabilities who was living at home with his parents. As both parents are now retired they were keen to see Robert established in his own home, living independently on his own or with another person. With the help of Housing Options Scotland, an organisation specialising in finding the right house in the right place, they began the process of finding suitable accommodation for Robert's needs.

Through the Access Ownership scheme, managed and funded by Link Housing Association and with the help of Housing Options Scotland, Robert's family, in partnership with the family of another disabled man, were able to buy a property near to both sets of parents. The three bedroomed property was suitably adapted for the day to day living of both men with 24 hour care in place to enable independent supported living.

Robert and his housemate are now happily settled and both families are very satisfied with the arrangements.

Supported living in Camphill communities

Not everyone with learning disabilities will choose to live in their own home. Scotland is home to twelve Camphill communities, supporting over 400 people with learning disabilities from the early years through to older age. People who need support live and work alongside co-workers. People can choose to come and share life with others by living in the communities, or by working in the community for part of the week.

Many staff in Camphill communities are trained in social pedagogy, a relationship-based approach which uses everyday living situations to help residents to learn and develop skills that will enable them to participate more fully in decision-making about their own lives, maximise their own potential and to live as independently as is possible. Communities vary in size from supporting eight to 80 people, and can be found in rural and in urban settings. For some people, living and working in an intentional community really brings out the best in them. They tell us that this is because Camphill life means they can have a sense of belonging, make friends, develop social skills, feel safe and secure and make a contribution. Work is, and always has been, an integral part of life in Camphill communities. Everyone has a need to be useful and active, and work within Camphill communities and social enterprises gives people a shared purpose, enabling them to make a meaningful contribution to the community and beyond.

There are also advantages for families whose relatives are supported in Camphill communities. Camphill families report feeling safe and secure in the knowledge that their loved one is being well supported. They value the holistic support provided in communities, who use a social pedagogy approach to attend to people's overall wellbeing, education and personal development.

Case study

James comes to Camphill Blair Drummond to work and be supported. He said:

''I have been coming to Blair Drummond for 6 months as a day student, I come two days a week and I attend pottery, basketry, and the garden workshops. These were the workshops I liked the best when I came to visit.

I really like the pottery and I have helped to make lots of great things. I have made mushrooms out of clay that I paint and then they get glazed. I really like to make the ladybirds, owls and tortoises. It's great fun and it helps me focus and relax. I also go to basketry where I am making different kinds of baskets that will be sold at the advent fair. This makes me proud that someone will buy my basket. Although I am quite shy I have made friends with the other students in my groups and this has made me more confident.

I also like to work out in the garden and I have planted flowers and seeds to grow vegetables and when it's raining we chop up fruit and vegetables to make jam and chutney.

I feel happy to be here.''

Recommendation 30

That Camphill Scotland is funded in 2013 to prepare for practice change and training in social pedagogy by staff and residents working together to identify outcome measures for individual residents and to implement and evaluate these.

Travel and transport

Being able to use a bus or train independently is a skill that many people with learning disabilities need support to learn. It can open up new avenues and opportunities that they would otherwise be unable to access, like work or college, as well as social activities and just going out with friends.

The same as you? evaluation found that the bus is especially favoured as a method of transport while people found the train much more difficult to use, partly because it was difficult to get and off and partly because people were unsure as to which train to get on.

In 2005 transport providers became liable under the Disability Discrimination Act⁶⁵. Local authorities in Scotland are also under a duty to have due regard to the elimination of unlawful discrimination against disabled people as well as promoting equality of opportunity for disabled people.

In order for people with learning disabilities to be truly independent, it is important that transport is accessible, affordable and available.

Good practice

People who cannot travel independently are restricted. In Share Scotland's pilot project 'Journey to Success' staff will be trained as accredited travel trainers to work with 16 people with learning disabilities recruited across a range of local organisations. They will be supported over 24 weeks from a classroom setting and will be given the confidence and skills to plan and carry out journeys independently on public transport. Local transport companies will be given disability awareness information on guidance and how to best support a disabled passenger. If the pilot is successful, local authorities may be interested in future funding of it as it will enable them to reduce significant transport costs for taxis, special buses and escorts for disabled people and decrease the pressure on social work services.

The role of Local Area Co-ordinators

Achieving independence requires the expertise and support of skilled staff. Local areas co-ordinators (LACs) are highly valued in this regard. The same as you? introduced the role to provide people with learning disabilities and their families with "...a specialist worker dedicated to working with a small number of people using services in one area (to) help people and their families through the current maze of systems"⁶⁶. Since the introduction of Local Area Co-ordination the number of LACs employed in Scotland has grown from five posts in 2002⁶⁷ to over eighty in twenty local authority areas in 2013⁶⁸.

In 2010 SCLD published 'Values into Practice: A framework for Local Area Co-ordination in Scotland'⁶⁹ in partnership with the LAC National Reference Group. This framework was developed to provide a benchmark for LAC and to support LACs to adopt the 10 principles of LAC in their day to day practice⁷⁰.

LAC is diverse and flexible in its approach to building individual capacity for independent living and growing community capacity for inclusion. LACs will work flexibly with individuals, family members and carers; community groups and associations; and public services in order to achieve positive outcomes for people with learning disabilities within their locality.

The core areas of LAC work focus on: information, signposting and guiding; developing relationships; planning, empowerment and promoting independent living; promoting inclusion; and influencing public service delivery. LAC has the potential to contribute to building a society where people with learning disabilities and autism are valued as full and equal members of society.

Good practice

The BreakAway Project, which is facilitated by LACs in Edinburgh, was introduced as part of a wider move towards giving people with learning disabilities more control over their care. BreakAway gives families a choice about how to spend their respite time, rather than allocating them a fixed number of nights at a respite centre. Users are allocated a budget and can spend it on activities of their choice. They can also pool their budgets with others, cutting costs by sharing a support worker, transport or accommodation.

Recommendation 31

That the role of Local Area Co-ordinators is reviewed by the Scottish Government, SCLD, COSLA and ADSW by evaluating their contribution to independent living both in terms of outcomes for individuals and public value and that a joint decision is reached by June 2014 on the scale of expansion needed and the collective means to achieve this.

Advocacy

Advocacy is the process which supports people to understand information and choices and to make their voice heard, especially if they may find it difficult to do so by themselves.

There are several different types of advocacy available, as defined by the Scottish Independent Advocacy Alliance⁷¹ :

• Self-advocacy. This is when a group of people, who normally have experience of using services, decides collectively about issues they would like to campaign on.
• Collective or group advocacy. This happens when a particular group of people come together and support each other round a common cause.
• Citizen advocacy. This is when ordinary people in the community work with someone who needs the support of an advocate. Citizen advocates may work with the same person for many years.
• Peer advocacy. This is when someone with very similar life experiences to the person who needs support acts as their advocate.
• Professional advocacy. Some professional advocates are paid and some are unpaid.

The same as you? said that the then Scottish Executive should encourage the development of local independent advocacy services. While some funding was offered and some people did get access to advocates, provision is still patchy across Scotland. Not everyone will need or want an advocate but, as the Joint Committee on Human Rights report on the human rights of adults with learning disabilities highlighted, it is of particular value to people with profound and multiple disabilities. It is also clear that it would be helpful to provide further training for both advocates themselves and on advocacy to social care staff.

Recommendation 32

That by 2018 the Scottish Government works with the Scottish Independent Advocacy Alliance, PAMIS and SCLD to scope the need for advocacy and to develop an Action Plan together to improve delivery and uptake of independent advocacy at local level.