The Big Plan 2021 to 2026
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Welcome to the Brighton & Hove co-produced citywide strategy for adults with learning disabilities. We have developed this strategy to improve the lives of adults with learning disabilities across the city.
A learning disability is defined by the Department of Health as:
"a significant reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with a reduced ability to cope independently (impaired social functioning), which started before adulthood”.
A learning disability is a lifelong condition and many people with a learning disability will need support to live as independently as possible.
The strategy focuses on all adults with a learning disability in the city. We will consider the diversity of need from those adults with a mild learning disability to those with many complex needs. Although the Local Authority (LA) is the lead for the Strategy, its success will lie in in the effectiveness of the partnerships between all stakeholders.
The strategy sets out the 6 key priorities and outlines the partnership between:
The Adult Learning Disability Partnership Board (LDPB) will steer the new strategy. People on the board include:
The SEND Partnership Board will also monitor progress against actions specific to transitions. Brighton and Hove Speak Out and their Link Group chair the LDPB. Membership of the LDPB is listed in the appendices.
There will be 6 workstreams, one for each priority area, with an identified lead individual for each. These workstreams will drive forward the key actions. The leads for each priority area will report back twice a year to the LDPB on their progress and on any issues effecting delivery. They will produce an annual report on their progress for both the LDPB and HWB.
We recognise that we will need significant commitment and resources to carry out our priorities. More information on how we plan to do this is in appendix 5. The workstreams will also need to take into account the impact and learning as a result of the Covid 19 pandemic. You can read more about this in appendix 6.
It is vital that the strategy is meaningful, accessible, engaging and achievable. We have worked very closely with Speak Out, the Carers Centre, Amaze and the Parent Carer Council (PACC) to engage a wide range of stakeholders in the development of the strategy.
We did this to ensure that the key priorities reflect the needs of adults with learning disabilities, their families and the learning disability community.
There is an accessible version of the strategy available in easy read.
We will review the strategy after 12 months alongside the SEND Strategy. We hope to explore opportunities of joining the two strategies for a whole life pathway approach. The SEND strategy and Learning Disability Strategy transitions workstreams will work closely together via the leads, where there are related priorities.
The strategy also links with the Sussex Clinical Commissioning Learning Disability and Autism strategy which covers other areas of need, such as neurodevelopmental conditions for those without a learning disability.
We hope that you find our strategy ambitious and aspirational, and that it reflects our core aim to achieve the best for adults with learning disabilities in the city.
Rob Persey - Executive Director, Health and Adult Social Care
Deb Austin - Executive Director Families, Children and Learning
Georgina Clarke-Green - Assistant Director, Health, SEN and Disability, Families, Children and Learning
Emma Lopez and Sarah Pickard - Brighton and Hove Speak Out
Sarah Robson - Associate Director Children, Learning Disabilities and Maternity Commissioning, Sussex Clinical Commissioning Group
We co-produced this strategy with:
We reviewed the previous Adult Learning Disability Strategy to judge its success. We then presented this review to the LDPB. We learned from this review that the new strategy needs to have:
A commissioning team did an online consultation with providers and professionals at the end of 2019. Speak Out, Carer’s Centre, PACC and Amaze have carried out a range of engagement and consultations since the last Learning Disability strategy with adults with learning disabilities and their families.
This included a reflection on what had been achieved, not achieved and learned from the previous strategy.
We carried out the consultation with a range of forums, including:
We held six co-production online events in July 2020, hosted by the Commissioning team. Many attendees were invited including carers, families, providers and professionals.
We designed the 6 events to coproduce the actions needed for the 6 identified priorities:
The Trust for Developing Communities (TDC) carried out nine focused one-to-one interviews with adults with Learning Disabilities and their families from Black, Asian, and other ethnically and culturally diverse backgrounds.
The TDC also interviewed senior representatives from three voluntary sector providers of services for adults with learning disabilities in the city. None of the three organisations provided culturally or ethnical diverse focused or specialist services but all were well established in the City and well regarded for the services they provided.
We shared a draft strategy with the Learning Disability Partnership Board on 25 January 2021. The draft strategy went out for a further final consultation in April 2021.
The final strategy was presented at the Councils Health and Wellbeing Board on 27 July 2021.
There will be a review of the strategy after one year to review its aims and outcomes considering Covid-19 and to consider its alignment with the SEND Strategy.
Adults with learning disabilities tell us they want:
Families and advocate tell us that their key priorities are:
Feedback from the focused interviews carried out by the Trust for Developing Communities included a range of views and considerations of which the broad themes are highlighted below.
The feedback should be considered within the context of the consultation. We did the consultation with a very small group of individuals and their families, and providers. Some of the feedback may differ to views of the wider community.
There was a belief among most of the respondents that in society there is a lack of understanding of the overall needs of people with learning disabilities.
There are a number of partners who support adults with learning disabilities in the city.
The SCDS team is a multi-disciplinary team made of Social Workers, Care Managers and Clinical staff.
These are made up of three pods:
The social care management team provide a range of social work services to adults with disabilities and support them to make choices, increase their opportunities, and get help from services and the local communities.
SCDS sits within the Families, Children and Learning Directorate (FCL) of the Council. Overall statutory responsibility, however, remains with the Director of Health and Adult Social Care within Health and Adult Social Care (HASC).
This is the specialist health team for adults (people aged 18 and over) with Learning Disabilities within SCDS (see above) to ensure a joined-up health and social care approach.
The team supports people with a learning disability who also have:
A person who has Autism Spectrum Disorder has to also have a Learning Disability (or Intellectual Disability) in order for this team to be involved.
The small team includes specialist learning disability professionals from:
Sussex NHS Commissioners works in partnership with Sussex Local Authorities and Sussex Partnership NHS Foundation Trust to help people with learning disabilities or autism to be able to live in the community, with the right support, and close to home.
The CCGs are currently developing their Learning Disability and Autism Strategy, which will describe how the CCGs in Sussex will deliver the NHS Long-Term Plan priorities (LTP).
The priorities group into three themes:
The role of advocacy services in the city is vital to supporting adults with learning disabilities and their families to have a voice and be heard and is integral to ensuring that we continue to deliver services that meet people’s needs.
Supporting this work are our local partners Speak Out, Amaze, PaCC and the Carers Centre who all play an important role.
Speak Out along with their service user link group organise and chair our local Learning Disability Partnership Board. They work with the Carers Centre, PaCC and Amaze to speak with communities and support the development of services.
The city benefits from many learning disability providers (non-profit, third sector and private) that are very important in delivering services.
The commissioned services in the city include:
The council also has an in-house provision of:
| Age band | Number of people |
|---|---|
| 18 to 24 years old | 1138 |
| 25 to 34 years old | 1262 |
| 35 to 44 years old | 983 |
| 45 to 54 years old | 944 |
| 55 to 64 years old | 704 |
| 65 to 74 years old | 458 |
| 75 to 84 years old | 256 |
| over 85 years old | 116 |
In Brighton and Hove 2020, we predict that within the population of 18 to 64 year olds there will be 5,031 people with a learning disability. 1,059 of these people will have a moderate or severe learning disability.
Based on national rates, We estimate that there are around 5,000 working age adults with a learning disability in Brighton & Hove in 2020. We estimate that 23% of these people have a moderate or severe learning disability and are likely to be getting help from services.
In total we estimate that there are 5,861 adults (anybody over 18) with a learning disability living in Brighton & Hove.
The most common age group for adults with a learning disability is 25 to 34 years old. 22% of all adults with a learning disability in the city are between these ages.
This information on population estimates comes from PANSI.
| Year | 2019 | 2020 | 2021 | 2022 | 2023 | 2025 | 2030 | 2035 |
|---|---|---|---|---|---|---|---|---|
| Number of people | 5,826 | 5,860 | 5,883 | 5,905 | 5,930 | 6,002 | 6,229 | 6,414 |
We estimate that there will be a total of 6,414 adults (anybody over 18) living with a learning disability in 2035.Based on national rates, We estimate that there will be around 5,254 working age adults with a learning disability in Brighton & Hove in 2035. This is an increase of 4% of the population size in 2020.
We predict that the biggest increase in numbers of people with learning disabilities will happen to people aged 65 to 74. 180 more people of this age range will have a learning disability than in 2020.
This information on population estimates comes from PANSI.
| Ethnicity | Percentage |
|---|---|
| White | 80% |
| Asian | 2% |
| Black | 2% |
| Mixed | 3% |
| Other | 2% |
| Not stated | 8% |
| Age | Number |
|---|---|
| 18 to 20 years old | 30 |
| 21 to 30 years old | 92 |
| 31 to 40 years old | 40 |
| 41 to 50 years old | 20 |
| 51 to 60 years old | 29 |
| 61 to 70 years old | 16 |
| 71+ years old | 10 |
| Percentage of service users | Year | Location |
|---|---|---|
| 11% | 2016-17 | Brighton & Hove |
| 5.7% | 2016-17 | Average for England |
| 9.8% | 2017-18 | Brighton & Hove |
| 6% | 2017-18 | Average for England |
| 8.8% | 2018-19 | Brighton & Hove |
| 5.9% | 2018-19 | Average for England |
| Percentage of service users | Year | Location |
|---|---|---|
| 79.8% | 2016-17 | Brighton & Hove |
| 76.2% | 2016-17 | Average for England |
| 77.7% | 2017-18 | Brighton & Hove |
| 77.2% | 2017-18 | Average for England |
| 81.4% | 2018-19 | Brighton & Hove |
| 77.4% | 2018-19 | Average for England |
The Adult Social Care Survey asks those receiving adult social care services how satisfied or dissatisfied they are with indicators of quality of life such as personal cleanliness and safety.
These answers are then combined to give an overall score of social care related to quality of life.
In 2018/19, Brighton & Hove scored 18.8 points out of a possible 24 for this measure, which is slightly lower than the national average of 19.1.
This information is taken from ASCOF data.
Priorities described in the image:
That adults with learning disabilities are empowered to develop and maintain relationships and friendships and are supported to understand how to keep themselves safe.
We will ensure that:
There are a range of accessible opportunities for adults with learning disabilities to; meet socially, develop friendships, date, build relationships, including opportunities for those who identify as LGBTQ, that is supported by existing resources, social prescribing, self -advocacy and flexible staffing arrangements.
There is support and accessible information for adults with learning disabilities to enable them to learn and talk about intimate relationships including sexuality, gender identity and including those with lived experience
Ensure services to support sexual health are available and accessible to adults with learning disabilities
Work with adults with learning disabilities and other stakeholders to understand, map out and develop support around gender identity, including support for those with learning disabilities and autism.
That training and information is easily available to providers and family carers on personal relationships and sexuality, including the provision of a Personal Relationships and Sexuality policy/guidance.
Develop and promote accessible information and opportunities to explore what being safe means and on how to keep safe on-line.
Develop safer communities to support adults with learning disabilities to feel and be safe and address key issues, for example hate crime.
People are able to maintain relationships and/friendships through life transitions and outside of their home.
Develop an advantage/bonus card in the city for adults with learning disabilities to support community access and engagement.
Develop support and information around safety on public transport, to enable people to access the community and increase their travel skills.
Adults with a learning disability live longer and have healthier and happier lives.
We will ensure that:
Health services provide information about their service and health and wellbeing resources in an accessible way that supports the Accessible Information Standard.
People with a Learning Disability, Families and Providers have access to information about health and wellbeing services, and accessible health and wellbeing resources.
There are a range of activities and initiatives in the city that help to support both physical and mental health that are accessible to adults with a learning disability.
Explore how existing community resources and social prescribing can be better utilised to support good health and wellbeing of people with a learning disability
Focus on the promotion of “good health and wellbeing” and “prevention”, particularly in relation to mental health to support a move away from crisis intervention across both social care and primary care.
Work with the Clinical Commissioning Group and Primary Care to ensure the needs of people with a learning disability are recognised within the Mental Health Strategy, prevention and primary care workstreams.
Ensure there is good clear information regarding pathways into primary and secondary mental health services and how to get help, that are accessible and inclusive to people with a learning disability.
Better transition through mental health services for young people into adulthood.
Increase the numbers of people with a learning disability age 14+ on the GP Learning Disability Register; in receipt of an Annual Health Check; and a Health Action Plan and that Providers are aware of their responsibility to ensure Health Action Plan actions are implemented.
Ensure people with a learning disability have a My Care Passport that is regularly updated
Joint work between Primary Care and Providers to roll out Restore/Restore 2 mini to recognise early warning signs of deterioration of health
Primary care make reasonable adjustments to that meet the needs of people with learning disabilities for example, accessible appointments.
To review and ensure actions from the LeDeR Annual reports are implemented to reduce the risk of premature death of people with a learning disability. (See HW14 Bowel screening and improving access to specialist respiratory care).
Ensure Screening and Vaccination Programme: invitations, pathways, and information are targeted, accessible and inclusive of people with a learning disability with a specific priority for bowel screening in line with learning from LeDER.
A training strategy is in place to raise awareness of the health and wellbeing needs of adults with learning disabilities across all stakeholders.
Ensure there is good clear information regarding pathways for drug and alcohol support, that are accessible and inclusive to people with a learning disability.
Work with the leads for priority 1 where actions/priorities overlap.
Work with CCG to align with and support the Sussex Learning Disability and Autism Strategy which focuses on 3 overarching themes; reducing health inequalities, the number of people who are mental health inpatients and an all age neurodevelopmental pathway.
That adults with learning disabilities have access to a range of activities, work and learning opportunities in the city with the appropriate level of support they need.
We will ensure that:
There is a range of meaningful activities available across the week and during holidays including leisure, arts, drama, music, wellbeing, and social activities, with a variety of delivery methods prioritising face to face but also including on-line.
Increase the learning and skills development opportunities available to support employability and life skills. To include a focus on the provision of ongoing learning post aged 16 and 25 and ensuring that Education Health and Care Plans (EHCP’s) reflect and support this.
Promote and develop work-based learning programmes, vocational training, employment, work experience, apprenticeships and volunteering opportunities in the city.
Increase the availability of accessible and affordable travel options in the city to enable people to access activities, work and learning and to develop travel skills (Link with RFF8).
Increase peer support opportunities to increase individuals’ skills, independence and confidence.
Increase digital access and development of digital skills for adults with learning disabilities.
Develop a central accessible information point to promote information on activities available and accessibility of venues, building upon existing information/communication platforms.
Develop a range of commissioning solutions to support the delivery of this priority and priority 4, including exploring new innovative commissioning models.
Adults with learning disabilities live in good quality accommodation that encourages independence with appropriate support to achieve this with choice of where and whom to live with.
We will ensure that:
Develop relationships and pathways with housing partners including the Council’s Housing Teams, to broaden the scope of housing options available in the city for people with learning disabilities, including continuing the collaborative work of the Sussex Learning Disability and Autism Board.
Commission housing options / specified support to meet the needs of Adults with Learning Disabilities, ensuring this includes the needs of those coming through transitions, those with multiple complex needs, carers, mother and baby placements, and those in need of emergency accommodation.
Commissioning frameworks support asset based, outcome focused, personalised care and support and embed Active Support, Positive Behaviour Support (PBS), the Inclusive Communication and Building the Right Support.
Establish an Adult Learning Disability brokerage function within the Council to support the provision of housing and support options that meet people’s needs, that is supported by strategic commissioning of services based upon future and current needs and exploring new/alternative commissioning options.
Ensure there is good clear information regarding housing and support options for people with learning disabilities, their families and providers that is accessible and inclusive to people with a learning disability.
Ensure that this information includes the cultural needs and sensitivities of the BAME community
Secure grant funding which supports accessible housing development and crisis support.
Review the short break and respite policy for young people and adults with the aim of ensuring a range of opportunities that meet people’s needs.
Continue to support people to move on through services to better meet their needs, encouraging independence with the appropriate levels of support and to bring people back from out of area.
Increased understanding of supporting people with learning disabilities in mainstream housing and support services.
Continue to develop the Positive Behaviour Support Network.
The workforce receives good quality support and training.
Providers recruit staff with the right values.
That moves between services or changes in provision, across all ages, are smooth, seamless and supportive
We will ensure that we:
Work with the SEND Partnership Board to implement “Transitions and Preparing for the Future” priorities in the SEND Strategy (TPF) that relate to young people with learning disabilities.
Work with the SEND Partnership Board to ensure a holistic approach to Education Health and Care Plans (EHCP’s), that includes planning for adulthood and the ending of education, and development of skills teaching and social networks.
Ensure a collaborative multi- agency approach to planning for transitions that starts early, is person centred and has clear pathways and uses communication strategies such as life stories.
Increase the recognition and support for young carers and involve them in transition planning.
Ensure clear pathways are in place to support good transition for young people from children’s health and social care services to adult health and social care services.
Ensure that information and training on transitions and transition pathways through to adult services is available and accessible to young people with learning disabilities, their families and providers and those from the BAME community.
Ensure that information and training on transitions through to adulthood includes information on changes in physical health and support needs.
Support parents and adults with a learning disability who have caring roles to have plans in place to respond to any changes in needs of the people they care for.
Support adults with learning disabilities to maintain choice and independent through times of changing needs and/or circumstances. For example; supporting sustainability of living at home with family/carers, changes in health and/or mobility, advance care planning.
That adults with learning disabilities and their carers have access and know where to go for advice and information on services in the city.
Information and advice:
We will ensure that:
Develop appropriate platform/s for the sharing of accessible information and advice, including the continued development of the Council learning disability webpage.
Ensure advice and guidance is available to adults with a learning disability and their carers to ensure they are supported to access and use information to make decisions which support self-advocacy, ensuring this includes the cultural needs and sensitivities of the BAME community and those adults with a mild learning disability who may not be in receipt of statutory services.
Undertake actions and initiatives to raise awareness and increase the number of services users from the BAME community accessing services.
Support Providers to have the skills, knowledge, tools and time to develop easy read (ER) information.
Promote and embed the Accessible Information Standard across services and providers.
Address the digital inequality for adults with learning disabilities including accessibility of IT resources, training in IT skills, development of more accessible IT information platforms such as Apps and Videos.
Develop and promote training for staff in mainstream services on communicating with people with learning disabilities and/or autism.
Continue to expand the “What’s Out There Fair” annual event to promote and provide information and resources to encourage engagement in activities available across the city and maintaining healthy lifestyles.
Ensure there is good clear information and advice for adults with learning disabilities and families with housing information, forms and on-line applications.
Continue to engage and promote the work undertaken through the Partnership Board, Provider Forum and Positive Behaviour Support Network.
Work together with adults with learning disabilities and other stakeholders to develop fully inclusive communication resources that support the delivery of all the priorities in the strategy, that develops Brighton as a “Inclusive Communication City” and champion the new “Communication Access Symbol”
Each workstream will consist of a range of stakeholders from across the learning disability community and will have an identified lead.
The workstreams will report directly to the Adult Learning Disability Partnership board (PDPB) (and SEND Partnership where appropriate) on a twice-yearly basis and an annual report will be produced for the LDPB and HWB.
BHCC Corporate Plan 2020 to 2023
BHCC SEND Strategy
BHCC Health and Wellbeing Strategy
BHCC Commissioning Strategy
BHCC Carers Strategy
CCG Mental Health Strategy Sussex
CCG Learning Disability and Autism Strategy
NHS Long term plan
There are a substantial number of priorities identified within the Adult Learning Disability Strategy, some of the key activities to deliver these focus on:
Much of this key activity work will not require additional funding but will need a different approach to the way we work together to achieve the priorities and objectives we have set ourselves.
It is acknowledged nationally and locally that the public sector is under financial strain, which has been further exacerbated by COVID-19. The LA and partners will need to reflect upon how we use the current allocated funding for services and provision, using a flexible approach to respond to the different priorities identified by the strategy.
Decisions will need to be taken collectively as to how the funding should be allocated in future. This is so that we can be assured the city has enough provision and the right services for adults with learning disabilities.
Where there is an identified need for some additional funding, a business case with supporting evidence will need to be submitted to the relevant organisation.
Each priority will have an associated risk register. The register will identify the risks that may prevent the delivery of a priority, and the impact on the learning disability community if the priority and its objective is not achieved.
A list of SMART actions to resolve or mitigate the risk will be monitored through the workstream leads and the LDPB Partnership Board. The risk register will be presented alongside the progress report by the workstream leads at the Learning Disability Partnership Board.
It is important to recognise the impact of COVID19 within this strategy. When the COVID-19 pandemic hit in March 2020 it was clear that there was a significant impact on adults with learning disabilities, their families, providers and partners across the learning disability community.
A report by Speak out stated;
“It has highlighted pre-existing inequalities in access to services, support and community. The societal, economic and health barriers faced by people with learning disabilities have been magnified by the pandemic”.
The report highlighted key areas of significance including; access to information including easy read, digital access, the importance of activities and social inclusion, support with health conditions and mental health, and the rebuilding of confidence, skills and independence.
Speak Out report that people’s focus at this time is on their support/friendship network and the isolation that has led to worsening mental health. These were problem areas pre COVID-19, people are telling us that this is the issue that is affecting them most significantly. People with learning disabilities fight much harder to form friendships. They are faced with numerous barriers to forming and maintaining a peer group. An emphasis on connection, being part of things, finding likeminded people and peer support is essential at this time and well into the foreseeable future.
People are scared they will be forgotten as COVID-19 restrictions continue as social restrictions have contributed to a feeling of being invisible. There have been positives from the current challenges, particularly in relation to the increase in digital accessibility.
‘We just clicked. It was like they’d always been there. I know if something is bad with my mental health that they understand. I know my friends are there. I couldn’t have done this”
(B met two friends through Speak Out online drop ins. They use WhatsApp and messenger to support each other)
The Carers Centre carried out a digital engagement survey and a COVID-19 challenges survey which highlighted that:
With some of the main issues through lockdown being, the change to established routine, lack of respite, lack of space for outdoor exercise and knowing where to access support.
Feedback from Amaze has been on the impact of Covid-19 on young people of reduced access to apprenticeships, training and jobs, waiting time for referrals and interventions, access to online resources, limited capacity for parent to support at 40 home, lack of access to support agencies and groups and difficulties/challenges of going out.
“I’d been making lots of excuses not to go out. But my Mum helped me by talking things through, saying I’d probably feel better once I’d started going out again. She travelled on the bus with me to start with, until I felt confident about travelling on my own again. I’m really happy to see my friends again after all this time.”
(a young person who was becoming agoraphobic and not feeling able to attend support sessions even outdoors)
We must recognise the impact of the COVID-19 pandemic in the ambitions and priorities within this strategy. In relation to:
Whilst we must have a strategy that is underpinned by ambition, commitment and support, with a structure that enables progress to be monitored and achieved, it must be acknowledged that there will be an increased pressure on limited resources due to the COVID-19 pandemic that may present a significant risk for agencies in being able to implement the strategies priorities.
The roll out of the national vaccination programme will be key to reducing this risk and enabling adults with learning disabilities, their families, support staff and services, to return to normal.
It must also be acknowledged that there will be anxieties for some individuals in receiving the vaccine and that this will bring up issues of mental capacity and the need to undertake best interest decisions for individuals, on a case by case basis.
It is not yet known what the long-term effects of the pandemic will be, but it is likely that there will be both societal and legal impacts as a result.
It is the role of all of us to be aware of any resulting impacts and to ensure that adults with learning disabilities and their families are not adversely affected by any these and that the strategy continues to evolves to reflect ongoing changes/impacts.