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

Appendix 1: Summary of recommendations

Human Rights

Recommendation 1

That all public bodies involved in providing support to those with learning disabilities carry out equality impact assessments by June 2014 to ensure that the rights of people with learning disabilities to dignity, equality and non-discrimination are respected and upheld.

Recommendation 2

That localities provide opportunities to promote equality for people with learning disabilities through actively involving and including them in local developments that affect them. A first step should be the provision of information that ensures greater awareness of the rights we all have under domestic law and as a result of international treaties.

Commissioning of Public Services

Recommendation 3

That by April 2015 community planning partners should ensure that local arrangements for joint commissioning are developed across relevant partner agencies and service areas to support the delivery of agreed outcomes, and that these take account of the needs of people with learning disabilities.

Recommendation 4

That the Learning Disability Strategy Implementation Group will set up a training sub group to take forward health and social care workforce development. The sub group's remit will be to work in partnership with NHS Boards, local authorities, relevant statutory bodies and third sector to support workforce development to:

• ensure the on-going learning and sharing of best practice is available and accessible to all health and social care professionals to address the health care needs of people with learning disabilities;
• ensure that NHS staff, as part of their mandatory and induction training receive training in the suite of legislation relevant to supporting people with learning disabilities in mainstream healthcare settings;
• ensure that staff in high volume acute pathways for people with learning disabilities are given relevant learning disability training;
• ensure that health and social care staff working with people with learning disabilities are trained on use of 6D cards and Talking Mats.

Recommendation 5

That in preparation for the legal duties imposed by the Social Care (Self-directed Support) (Scotland) Act 2013, local authorities and their NHS partners should work with private, voluntary and third sector agencies to ensure that people with learning disabilities have access to a creative variety of providers and supports and are assisted to think creatively about how outcomes can be met and what assistance they may need to develop control.

Recommendation 6

That by June 2014 Convention of Scottish Local Authorities (COSLA), Association of Directors of Social Work (ADSW), and NHS partners work with Scotland Excel to improve the quality and consistency of support for people with learning disabilities who have a long-term need for specialist residential care, by developing a national framework agreement for procurement. This should include a core service specification which focuses on outcomes for residents, the rates that will apply, and the arrangements that will be put in place to monitor and manage performance.

Recommendation 7

That by April 2015 local authorities and NHS Boards should ensure that joint commissioning plans take account of the needs of people with learning disabilities of all ages. Plans should have regard to relevant guidance, scope current and future need, identify the total resources available to meet those needs, and set out how they will be invested to secure sustainable, high quality services and supports that can deliver outcomes for individuals, including those agreed as part of person-centred care planning and self-directed support (SDS). Plans should make reference to early interventions, maximising independence and control.

Recommendation 8

That by June 2015 the Care Inspectorate and Healthcare Improvement Scotland should ensure that strategic commissioning plans, processes and implementation are examined as part of on-going scrutiny work that impacts on services for people with learning disabilities.

Health

Recommendation 9

That the Learning Disability Strategy Implementation Group will work with the Scottish Government to explore the development a HEAT target for the NHS to establish a process whereby all adults with learning disabilities using health services are identified to the Information Services Division and the Scottish Learning Disability Observatory, so they can be visible in Scottish data systems by 2015.

Recommendation 10

That by 2015, the Primary Care Division of the Scottish Government and Scottish Learning Disabilities Observatory will work together to develop a process of annual reporting of trends in the management of the long term conditions of people with learning disabilities have.

Recommendation 11

That the Scottish Learning Disabilities Observatory will work to develop a better understanding of the causes of unnecessary deaths of people with learning disabilities.

Recommendation 12

That by 2016 the Scottish Consortium for Learning Disability, local authorities and the Scottish Learning Disability Observatory will work in partnership to provide information to Information Services Division and Analytical Services Division, Scottish Government, to identify by unique NHS numbers the adults with learning disabilities using social work resources by 2016.

Recommendation 13

That the Learning Disability Strategy Implementation Group will work with NHS National Services Scotland (National Information Systems Group) to ensure that both the Emergency Care Summary (ECS) and the Key Information Summary (KIS) meet the information needs of people with learning disabilities accessing health care.

Recommendation 14

The Learning Disability Strategy Implementation Group will work with Healthcare Improvement Scotland to undertake a review of the Learning Disability Quality Indicators and Best Practice statement to ensure that they reflect the changing needs of people with learning disabilities. A review of general health services and specialist learning disability health services will be undertaken across NHS Scotland to ensure that there is full compliance with Learning Disability Quality Indicators and Best Practice statement on Promoting access to healthcare for people with learning disabilities.

Recommendation 15

That the learning from the NHS Western Isles Collaborative is formally evaluated and its findings disseminated throughout Scotland through a Best Practice Conference to be led by NHS Western Isles and the Scottish Government in 2013. Application of the model to other areas of Scotland will be considered by 2014.

Recommendation 16

That by 2014 the Easy Info Zone of NHS Inform is publicised to ensure that people with learning disabilities and their families and carers can benefit from its use.

Recommendation 17

That the Learning Disability Strategy Implementation Group will work with the Scottish Learning Disability Observatory to establish and implement a targeted health screening programme for people with learning disabilities across NHS Scotland.

Recommendation 18

That by June 2104 all professionals working with those with learning disabilities take responsibility for assisting with implementation of the National Oral Health Improvement Strategy by promoting it at local level with individuals, carers and relevant others.

Recommendation 19

That by June 2015 all NHS Boards should ensure that people with learning disabilities that have complex epilepsy have access to specialist neurological services, including access to learning disabilities epilepsy specialist nurses and learning disability psychiatrists, where applicable.

Recommendation 20

That health and social care professionals apply the local See Hear policy to people with learning disabilities and their families and carers.

Recommendation 21

That work is commissioned in 2013 to understand and analyse the factors that promote person-centred care and individualised health outcomes for people with learning disabilities to ensure that they receive the same investigations and treatments as the general population and that reasonable adjustments are made by 2015 to achieve the same health outcomes.

Recommendation 22

That by the end of 2015 all NHS Boards across Scotland should ensure there is a dedicated primary care liaison resource to support general practice and primary care teams to ensure their services are equitable and where required targeted for people with learning disabilities.

Recommendation 23

That the Learning Disability Strategy Implementation Group will work with the Primary Care Division, Scottish Government to explore how the GP contract in Scotland can best meet the needs of people with learning disabilities, including the possibility of the reintroduction of an enhanced service for people with learning disabilities and including additional learning disability indicators in the Scottish Quality Outcomes Framework by June 2014.

Recommendation 24

That NHS Boards and local authorities across Scotland should work in partnership to ensure that people with learning disabilities receive the appropriate levels of support in general hospitals. This should include appropriately funded support from familiar carers as well as support from specialist learning disability acute care liaison nurses.

Recommendation 25

That by the end of 2016 NHS Boards should ensure that people with learning disabilities who attend acute care hospitals, including all medical and surgical specialties and accident and emergency departments, are identified and monitored to improve outcomes of hospital care and treatment, ensuring that healthcare is provided in the most appropriate setting.

Recommendation 26

That the Glasgow palliative care pathway is evaluated and rolled out nationally by 2015 to improve the care outcomes for people with learning disabilities.

Independent Living

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.

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 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.

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.

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.

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.

Shift the culture and keeping safe

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.

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.

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.

Recommendation 36

That to improve the availability of 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 and their carers including to provide opportunities to develop skills and confidence.

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.

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.

Break the stereotypes

Recommendation 39

That by 2014 local authorities, further and higher education providers, Skills Development Scotland and the Transitions Forum work in partnership within the GIRFEC assessment and planning framework to provide earlier, smoother and clearer transition pathways (to include accessible information on their options, right to benefits and Self Directed support) for all children with learning disabilities to enable them to plan and prepare for the transition from school to leavers destination.

Recommendation 40

That by end of 2014 SCLD in partnership with Colleges Scotland, Skills Development Scotland and ADSW consider how people with learning disabilities and carers can access educational activities and training at college and other learning environments.

Recommendation 41

That by 2018 the Learning Disability Implementation Group works with local authorities, NHS Boards and Third Sector organisations to develop a range of supported employment opportunities for people with learning disabilities and that those organisations should lead by example by employing more people with learning disabilities.

Recommendation 42

That local authorities and SCLD work in partnership with Volunteer Scotland and other relevant organisations to increase the opportunity for people with learning disabilities to volunteer within their community to develop work skills

People with Profound and Multiple Learning Disabilities

Recommendation 43

That all stakeholders involved with people with PMLD commit to the implementation of the Scottish Quality framework for the delivery of invasive procedures, which will be launched in Autumn 2013.

Recommendation 44

That a sub group of the Learning Disability Implementation Group is set up to increase the number of Changing Places toilets in Scotland to 100 by June 2015 using the conclusions and recommendations set out in the Scottish Government's report 'Changing Places Toilets' and by implementing the UK-wide Changing Places Consortium's Charter in Scotland.

Criminal Justice

Recommendation 45

That, with immediate effect, justice organisations should ensure they develop easy read and other accessible information resources for all literature they produce that is available to the public.

Recommendation 46

That a National Criminal Justice Action Group is to be established in 2013, consisting of professionals in this field and working in partnership with people with learning disabilities, to identify challenges and promote opportunities and influence change and to provide support for people with learning disabilities in the criminal justice system.

Recommendation 47

That by the end of 2014 all relevant organisations will review and implement recommendations of 'No-one Knows -Prisoners with Learning Difficulties and Learning Disabilities, Scotland' where they have not already.

Recommendation 48

That all professionals involved in the criminal justice system have access to the 2011 guide 'People with Learning Disabilities and the Criminal Justice System' and consider how they can best support people with learning disabilities in that context.

(The newly constituted Equalities sub - group of the Justice Board, representing all policy and operational interests in Justice, will oversee progress in implementing these recommendations).

Recommendation 49

That research will be undertaken across the criminal justice system in Scotland by SCLD and NHS Greater Glasgow & Clyde to understand and analyse the nature and extent of the health needs of people with learning disabilities within the criminal justice system to support the development of appropriate responses that address the distinct health and rehabilitation needs.

Complex care

Recommendation 50

That NHS Boards and local authorities are required to develop Joint Discharge Agreement Protocols which are informed by the EDISON reporting system and include escalation for resolution of disputes, excessive delays and local and national planning for those for whom no alternative community placements exist. The possibility of including these in Single Outcome Agreements will be taken to the National Community Planning Group for consideration.

Recommendation 51

That a Short Life Working Group be set up to establish the Scottish data on out of area placements and report on its findings on how Scotland builds the capacity needed to deliver the specialist services required more locally with an outcome that by 2018 people with learning disabilities and complex care needs who are currently in facilities out with Scotland should be supported to live nearer their family in Scotland.

Recommendation 52

That the Scottish Government, COSLA and ADSW should scope public sector investment in high-cost care packages and explore opportunities for developing alternative models of provision by June 2015, including through self-directed support, and by developing housing with support, to improve outcomes for individuals and their families and ensure value for money.