A Fairer Scotland for Disabled People: progress report 2019

Ambition 1: Support Services that Meet Disabled People's Needs

The first ambition of the Action Plan is for Support Services that Meet Disabled People's Needs. Specifically, this means that support services are designed and delivered to support disabled people to live the life they choose, to have control, to make informed choices and to have support to communicate this when needed at every stage of their lives. In the Scotland we want:

• Disabled people to be able to participate as active citizens in all aspects of daily and public life.

• Support for independent living for disabled people of all ages, with increased say over how that support will be managed and provided.

• Delivery of high quality health, social care and third sector services, with services working together to remove the barriers faced by disabled people of all ages.

• Increased opportunities for disabled people to be fully involved in the design and delivery of services.

Self-directed Support

Self-directed support was introduced by the Social Care (Self-directed Support) (Scotland) Act 2013, legislation that was developed in close collaboration with the Independent Living Movement. The purpose of introducing self-directed support is to ensure that anyone receiving social care is fully involved in decisions about that support. This Act makes provisions requiring local authorities to actively involve those receiving social care support in the planning and delivery of their support, and enables people who want to, to take full control of their support.

Progress so far has been reviewed by both Audit Scotland (2014, 2017)^[1] and the Care Inspectorate^[2]. Work is currently underway by Self Directed Support Scotland (SDSS) and the Health and Social Care Alliance Scotland to repeat work from 2016 to assess people's experiences of self-directed support with user surveys. The Audit Scotland Self-directed Support 2017 Progress Report^[3] made a number of recommendations for Authorities, the Scottish Government, COSLA and partners to support the implementation of SDS, recognising that 'despite many examples of positive progress, SDS has not yet been fully implemented' (p5). The recent Care Inspectorate Thematic Review of self-directed support in Scotland: Transforming Lives^[4] made further recommendations for partnerships, as well as outlining four broad themes around SDS that require wider debate across Scotland:

• The shared challenge of making SDS accessible to all
• How to reconcile the tension that arises when staff try to work in an outcome-focussed manner within systems that are not aligned to that
• A shared way forward in how partnerships can meaningfully record and use information on personal outcomes at every level
• Leadership and integration

These themes and recommendations are being addressed through the programme of reform of adult social care support that Scottish Government and COSLA have co-designed with people who use social care support.

The Information Services Division of NHS National Services Scotland reported the following main findings, among others:

• An estimated 1 in 24 people of all ages in Scotland received social care support and services during 2017/18.
• Of the total number of people receiving social care services/support in 2017/18, an estimated 75% were involved in choosing and controlling their support through self-direct support options.
• The number of people choosing a direct payment (self-directed support option 1) to purchase the services/support they require continues to increase with an estimated 8,880 people in 2017/18 compared to 8,290 in 2016/17, an increase of 7%.^[5]"

The Scottish Government continues to fund independent support and advice for people navigating social care through Support in the Right Direction funding. Thirty voluntary sector organisations covering 31 authority areas will receive a total of £2.9 million per year until March 2021 to offer face-to-face advice, advocacy and other forms of support, including for people not currently eligible for formal support.^[6]

However, work remains to be done to fully implement self-directed support in line with the original policy intent. Recognition of this lies at the heart of the new programme of reform to adult social care^[7], which was co-produced with people using social care support and carers, and launched in June 2019. The programme includes 9 work streams, all of which will consider self-directed support. Scottish Government published a self-directed support implementation plan 2019-2021 drawing together the planned activity. This document sets out a guide for the local planning and delivery of social care support services (the Change Map) which requires the views and experiences of supported people to inform and underpin all of the necessary changes. It also sets out the actions that national public and voluntary sector organisations will take to support authorities to build on their progress towards more flexible and responsive social care support, co-produced with communities and supported people.^[8]

Free personal care for under 65s

The entitlement to free personal care for those under 65 came into force on 1 April 2019. This builds on the long-established entitlement to free personal care for people aged of 65 and older in Scotland. Legislation was brought into effect on the 1 April 2019 to ensure free personal care is available to any person who is found eligible by their local authority as needing personal care will receive these services free of charge. Since 2002. free personal care has been available to those aged 65 and over. This is the first year of the extension of free personal care to under 65s. The Scottish Government is working closely with Health and Social Care Partnerships and COSLA to monitor the costs and funding.

Active and Independent Living

The Active and Independent Programme^[9] was launched in 2017, detailing six ambitions to drive significant culture change in how people can access and receive Allied Health Professional^[10] (AHP) support for self-management, prevention, early intervention, rehabilitation, and enablement services. The programme received £3 million between 2015 and 2018.

Improving Standards of Care and Support

A range of new standards for and improvements to health and social care services have been developed by the Scottish Government since 2017. In June 2017, the Scottish Government published new Health and Social Care Standards (HSCS), which came into force in April 2018. The HSCS place the experience of the person receiving care and support at the centre, with the underlying principles emphasising dignity and respect, compassion, responsive care and support, inclusion and wellbeing.^[11]

The Care Inspectorate continue to update their inspection methodologies to reflect the Standards. Three new Quality Frameworks have been published: Care Homes for Older People (July 2018)^[12], Care Homes for Adults (May 2019)^[13], and Care Homes for Children and young people, and School Care Accommodation (June 2019)^[14]. Other frameworks will follow in due course. In November 2018, the Scottish Government published 'Coming home: complex care needs and out of area placements 2018'. This provided recommendations on improving the process for the hospital discharge for people with complex needs and learning difficulties.^[15]

Supporting Young People at Transitional Points

The Scottish Government is committed to equality for disabled children and young people in Scotland and to ensuring that all children can achieve their potential. We recognise that effective solutions to the problems and barriers faced by disabled people must be drawn from the lived experience of disabled people. An important priority for including young disabled people is ensuring that they are supported at transitional points in their lives.

This has led to the development of a website to support young people making transitions into young adulthood. A consultation on the content of the website ended on 5 September 2018. A total of 110 responses were received and were analysed and published on the Scottish Government website on 24 April 2019.^[16] An engagement event tour of Scotland took in 11 areas of Scotland. Presentations on the content, along with discussions during the consultation period, helped reinforce the need for the resource as well as highlight potential gaps. Young disabled people attended some of these events. Developing additional content at the request of respondents and those who attended the engagement events will ensure that the resource is a valuable information tool for young disabled people and their families/caregivers. The writing of content included the Disabled Children and Young People Advisory Group, parent groups and the Young Disabled People's Forum. In addition, some young disabled people agreed to share their lived experiences which feature on the website^[17].

The Transition Fund

Another development to support transitions has been the Transition Fund. The Independent Living Fund Scotland, sponsored by Scottish Government, opened a Transition Fund in December 2017 designed to support young disabled people during significant transition moments in their life. Young people aged between 16 and 21 may apply for up to £7,500 in funding for one year.^[18] As of August 2019, the Transition Fund has supported more than 1000 young people since opening. The most common grants made are for driving lessons, computer equipment, gym membership, sports activities/clubs and music lessons. The Transition Fund was designed in co-production with disabled people, including young people. In addition, the Scottish Government continues to support 2400 disabled people in sustaining the fullest opportunities for independent living – for those inherited from a now closed UK scheme. This is now delivered through the Independent Living Fund Scotland.

Research into Transitions

In addition, the Scottish Government funded the publication of 'The Principles of Good Transitions 3' in 2017 which contains seven principles to support good transitions for young people with additional support needs who are making the transition to young adult life.^[19] In the same year the Scottish Government also published "Facing the Future Together: a national survey of young people with additional support needs and their parents and cares about their experiences of leaving school."^[20] This reported the views of 740^[21] respondents about the risks and opportunities presented by life transitions and is informing current work in which the third sector and Health and Social Care Partnerships are working in partnership to develop a transitions tool to support better outcomes. The transitions tool is expected to be trialled from April 2020.

Activity Agreements and Community Jobs Scotland

At present, Local Authorities are working with 1214 young people, 593 of whom are disabled, on Activity Agreements. 'Activity Agreements' help school leavers gain skills and confidence by helping young people prepare for employment, training, education and/or volunteering. In their last three phases, Community Jobs Scotland, which specialises in working with unemployed young people has worked with 623 young disabled people on a full-time basis and 162 on a part-time basis (see next section).

Learning Disabilities

In 2013, the Scottish Government launched 'The keys to life' strategy, aimed at improving outcomes for people with learning disabilities. It's emphasis is for everyone in Scotland with a learning disability to live healthier lives, enjoy choice and control over the services they use, and are supported to be independent and active citizens. Evidence confirms that people with learning disabilities face a number of barriers, including lower life expectancy (20 years lower, on average, than the general population) and low employment rates (7% compared to the 73% rate for the general population).^[22]

The first implementation framework that ran from 2015-17 has led to a number of developments around healthy lifestyles, improved choice and control, independence and active citizenship. In 2019, the Scottish Government published a new implementation framework for 2019-21.^[23] This emphasises developments in:

• the housing needs for people with learning disabilities
• educational outcomes
• accessibility of healthcare
• employment

In both the original 2013 strategy and the refresh, an expert group of people with learning disabilities were consulted and involved in the policy development .

The Mental Health Strategy 2017-27 and Developments in Mental Health Policy

The Scottish Government is determined to create a Scotland where we treat mental health with the same commitment, passion and drive as we do with physical health, and people can get the right help at the right time and fully enjoy their rights free from discrimination and stigma.

In March 2017, the Scottish Government published its Mental Health Strategy 2017-27.^[24] Key actions involve commissioning a review into whether the 2003 Mental Health (Care and Treatment) (Scotland) Act fulfils the needs of people with learning disabilities and autism and exploring options around connecting mental health, disability and employment support. It commits to increasing additional investment to £35 million in the first five years of the strategy, for 800 additional mental health workers in key settings like GP practices, A&E and police station custody suites. In 2018, the first progress report from the strategy was published. This found that, within 18 months of the strategy commencing, 13 of the 40 planned actions were either complete or nearly complete, with the remainder in progress.^[25]

The 2019/20 Programme for Government commits to additional spending to support the improvement of mental health services. These commitments include supporting the development of a community perinatal mental health service across Scotland, backed by £5 million. It will also make £3 million available to support the establishment of integrated infant mental health hubs across Scotland, and will support efforts to meet waiting time targets for Child and Adolescent Mental Health Services with £15.5 million during the programme year.^[26]

Legislative Reform

In January 2018, a consultation was published on potential reforms to the Adults With Incapacity (Scotland) Act 2000, with a view to ensuring that the Act was consistent with the government's ambition to fully implement the UNCRPD.^[27] Following on from this stakeholder working groups have been developing policy, which will continue pending the outcome of the review of the Mental Health (Care and Treatment) (Scotland) Act 2003. Codes of practice and guidance are being updated to bring practice into line with Adults with Incapacity principles and the UNCRPD.

Scottish Strategy for Autism

The Scottish Government is committed to ensuring that, in Scotland, autistic people have healthy lives, choice and control in relation to services, can live independently and are able to participate in all aspects of community and society. In 2017, a National Dialogue was held to develop priorities for the final phase of the 10 year Scottish Strategy for Autism (2011-21). An analysis of the engagement was published and a list of priorities was developed.^[28] Autistic people were involved in the development of both the original strategy and the final phase, including the online engagement process.^[29]

Priorities going forward include improving public awareness of autism and improving diagnostic pathways, post-diagnostic support raising awareness of autism among professionals and public services, and supporting autistic people in employment and in transitions.

Further Reading

• Scottish Government (2018) Transforming social care: Scotland's progress towards implementing self-directed support 2011-2018. Available here.
• Scottish Government (2018) Scottish Strategy for Autism: outcomes and priorities 2018-2021. Available here.
• Scottish Government (2019) Self-directed support strategy 2010-2020: implementation plan 2019-2021. Available here.
• Care Inspectorate (2019) Thematic review of self-directed support in Scotland. Available here.
• Scottish Government (2019) The keys to life: Unlocked Futures for People with Learning Disabilities Implementation framework and priorities 2019-2021. Available here