The same as you? published by the Scottish Executive in 2000 was the catalyst for Scotland's long stay Learning Disability hospital closure programme. The need for deinstitutionalisation, and alternative care in the community was made clear and backed with significant financial support. The aspiration was clear, all long-stay hospitals were to close by 2005.
However, for a small number of Scottish citizens – namely people with complex care needs, hospital has still taken the place of a home. These people are facing lengthy delayed discharges from modern-day clinical settings and some have been sent to places far away from their homes. Hospital wards, including Assessment and Treatment Units, or out-of-area care facilities are often institutional in nature. They are not a home.
The Scottish Government's Keys to Life (2013) referenced the long standing issue of delayed discharge and out-of-area placements as a result of wider system failure. The Mental Welfare Commission's No Through Road report (2016) and Dr Anne MacDonald's Coming Home report (2018), commissioned by the Scottish Government, both highlighted the significant number of people with learning disabilities who are delayed in hospitals in Scotland, sometimes for many years, despite being clinically assessed as ready for discharge into community settings.
A short life working group (SLWG) was set up at the instruction of the Scottish Government and COSLA by the then Cabinet Secretary for Health & Sport and the COSLA Spokesperson for Health & Social Care. The remit was to undertake a joint focused piece of work in relation to delayed discharge for people with learning disabilities and/or enduring mental health conditions.
The SLWG met during 2020 and heard from various experts and stakeholders in the field to understand the challenges with the current system and how solutions were being found. It quickly became evident that whilst there was a range of reports on the issues of delayed discharge for people with learning disabilities, there was a lack of available evidence for people with enduring mental health conditions.
The expertise of the group was primarily made up of learning disability sector specialists and family carers of people with learning disabilities. The discussions therefore focused mainly on issues for people with learning disabilities and are the focus of this report. The group agreed early on that further work would be required to address the issues specific to those with enduring mental health conditions, recognising that the solutions may not be the same.
This report describes the groups findings and recommendations.
Within this report we describe why a refreshed approach is needed, what work has already been done in this area, and the collaborative working that is needed to achieve a modern and human rights based approach to care for people with learning disabilities.
1) Action Summary
3) Underpinning principles
5) Dynamic Support Register
6) framework to support Register
a. Complex Needs Pathway
b. Peer Support Network
7) Community Living Change Fund
8) Summary and recommendations
The SLWG previously made two main recommendations to Scottish Government and COSLA to:
- Establish a Community Living Change Fund over the next three years to be used to design local community-based solutions to bring home those placed outside Scotland and to discharge those whose discharge from hospital was delayed. This was implemented as an early priority in 2021 with £20 million distributed.
- Develop a national Dynamic Support Register, owned and maintained locally in order to create greater visibility of people with learning disabilities in terms of strategic planning and to allow for performance monitoring of admission to hospital and inappropriate out-of-area placements. Supported by a National Support Panel that can provide support and expertise to HSCPs and checks and balances for the local management of the Dynamic Support Register. The Panel will bring sector expertise together to provide an open collaborative forum that can troubleshoot individual cases in partnership with local areas. This was accepted in principle with a need for further work.
Other recommendations for the Scottish Government and COSLA included:
- Supporting Integration Authorities and local areas in their work on disinvestment planning to run alongside the change fund. NB: Scottish Government has allowed the change fund to be held in reserve for up to 3 years if necessary while local plans are progressed.
- Develop the supporting arrangements and build capacity for local areas to adopt a programme budgeting approach;
- Establish a detailed understanding of the revenue cost of different care packages to aid Integration Authorities on resource planning;
- Establish a greater understanding of the experiences of people with learning disabilities in specially adapted housing provision and understand how to better influence planning for new housing and adaption of existing properties;
- Explore and develop guidance, if necessary, on considerations of housing benefit rules for supported accommodation; and
- Produce a guide to support commissioning and procurement of complex care packages.
The recommendations to undertake further work in these areas were accepted by the Cabinet Secretary and by COSLA Leaders in November 2020. A sub-group of the SLWG then worked to develop the proposal for the Register, including how it would be used and maintained, and who it was for. This sub-group was led by Dr Anne MacDonald, author of the Coming Home report, and included representatives from the health and social care sector, as well as data experts from the Scottish Learning Disability Observatory. This report brings together all of this work.
Complex Care Needs:
The term used in this report when describing the care required around the person with learning disabilities in order to ensure that they can live as independently as possible in a more appropriate setting.
Therefore complex care needs may include those who in addition to having a learning disability:
- are also autistic;
- have a mental health diagnosis;
- Have a forensic need, and/or who are described as demonstrating challenging behaviour.
Behaviour can be described as challenging when it is of such an intensity, frequency or duration as to threaten the quality of life and/or the physical safety of the individual or others and is likely to lead to responses that are restrictive, aversive or result in exclusion
It is a communication from the individual and a product of the environment they live in and of the support they receive. It refers to behaviour which challenges services and support providers, rather than implying that the person is themselves challenging.
Challenging Behaviour is not a diagnosis and although such behaviour is a challenge to services, family members or carers it may serve a purpose for the person with a learning disability.
A delayed discharge refers to a situation where a person in hospital is clinically ready for discharge from inpatient hospital care and who continues to occupy a hospital bed beyond the ready for discharge date.
This report takes a wide definition of family, recognising that this term is often rooted in love and affection for an individual. It is right that it includes biological relatives: parents, grandparents, siblings; but also includes welfare guardians, partners, friends and supportive and paid carers in the definition.
While not formally defined, the Care Inspectorate states: all care services provided in Scotland must be in keeping with nationally recognised guidance, good practice, and Scottish Government strategy. It must support living, citizenship and inclusion in the community and operation must be underpinned by a human rights based approach, particularly the right to live independently and be included in the community under the UNCRPD. This means consideration of the service design, size and location, and proposed operation must be assessed against Scottish policy, irrespective of the location of the provider.
Scotland's Care Inspectorate remains responsible for the registration and monitoring of Care Providers in Scotland and is currently consulting on a policy position on Accommodation-based Care and Support for Adults with Learning Disabilities and/or Autistic Adults.
For the purposes of this report, out-of-area is defined as living within a placement not within the individual's funding authority. This could include living in either an NHS or a private hospital or care home. It is important to stress that being out-of-area itself is not problematic when this is through the choice of the individual and/or their family. This report describes "inappropriate out-of-area placements" as those which do not reflect the individual's choice of community they want to live in.
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