4. Understanding demand, prevention and early intervention

Having a detailed understanding of the drivers of demand for support for adults with learning disabilities is critically important as this can guide the use of cost-effective prevention/early intervention approaches.


4.1 Introduction

Having a detailed understanding of the drivers of demand for support for adults with learning disability is critically important as this can guide the use of cost-effective prevention/early intervention approaches.

The involvement of stakeholders, most notably people with learning disability and their carers, through a process of co-production, is essential to gaining an accurate understanding of what support adults with learning disability need now, and in the future.

Once likely levels of demand for support are known, councils can work with individuals and local communities, again using co-production methods, to build on existing strengths and assets to: enable maximum levels of independence, ensure timely and personalised support is available when needed, minimise reliance on specialist/segregated support, and ensure adults with learning disability are supported to live the lives they want to, in their local communities, and to strive (with partners) to reduce the causes of inequality.

4.2 What good looks like

The best councils undertake research/analysis to understand the current/likely future support needs of adults with learning disability (including people not yet supported) and plan how to best meet those needs. This includes:

  • Bottom up use of client level data e.g. adult care and support plans, children’s education, health and care plans to anticipate changes in support needs/key transitions throughout each person’s life to feed that information into planning processes and to ensure each transition is planned for so each person has a smooth transition and a positive experience
  • Top down use of national data e.g. demographic/special educational needs and disability/other data to predict long-term demand trends including younger people with complex needs and older people with learning disabilities
  • Co-productive planning processes with the whole community including people with learning disability, carers, and other citizens so that local plans reflect local people’s priorities. Reasonable adjustments are made to planning processes so that people with different levels of learning disabilities or autism can all engage with/contribute to these co-productive processes
  • Use Joint Strategic Needs Assessment processes to analyse data on the levels of need and levels of inequality adults with learning disability have/experience to understand the causes of inequality and the barriers to reducing it.

They co-ordinate how they work with health and education colleagues to fulfil special educational needs and disability responsibilities under the Children’s and Families Act (2014), and their own transition assessment responsibilities under the Care Act (2014). They aim to support each young person with learning disability to:

  • Develop the skills they will needed in adulthood to maximise their personal potential and achieve their personal aspirations from the earliest possible age.
  • Make co-produced individual plans so each person can be as independent in adulthood as is feasible. This includes consideration of employment/higher education, independent living, participation in society, relationships, good health and ongoing care and support
  • Make the experience of transition to adulthood as smooth as possible.

They undertake community development activity so that adults with learning disability can increasingly live their lives in the community rather than rely on specialist/segregated support services.

They undertake market analysis/development/oversight activity to ensure there is a sustainable market of high quality care and support within the geographic boundaries of the council that is able to meet the full range of support needs and provide choice for the local population of adults with learning disability.

They ensure good quality/accessible information and advice is available to the whole population about the local strategy, local care and support pathways, local services, welfare benefits, individual rights etc. Specifically, information and advice should exist in a variety of accessible and easy read formats so everyone can find out what:

  • care and support options are available in the area
  • each different local service provider offers, where to find them, how to contact them
  • process(es) local people need to use to access the care and support that is available
  • people can do to access independent financial advice about care and support
  • people need to do to raise concerns about the safety or wellbeing of someone with learning disability.

For young people aged 0-25 with special educational needs and disability and their carers the council publishes its “Local special educational needs and disability Offer” to outline the support and services they expect to be available in their area for children and young people from birth to 25 who have special educational needs and disability including services in nearby areas that their young people might want to access. For example, a local college that young people may wish to use in a neighbouring council’s area. They support campaigns to help everyone understand more about Learning disabilities and about autism to reduce stigma and negative stereotypes about adults with learning disability.

Who is good at this?

Milton Keynes

What is good? Commissioners and senior leaders collect and use data effectively to support planning and resource allocation. Notably, they gather and analyse information from transition processes to ensure tailored support and appropriate accommodation is in place and ready at the time of transition and suitable to ensure each person is supported to progress towards person centred outcomes.

Impact: Person centred/progressive accommodation and support is in place for each person at transition

What is good? In order to deliver Transforming Care Partnership objectives and ensure smooth mid-life transitions adult services uses its knowledge of the people living out of area and those living with families to commission accommodation and support ready for a move back to the Milton Keynes area or from the family home where this is in life with the individual’s personal aspirations and life choices.

Impact: Residential care is seldom used after key life transitions

Guidance

For ground rules for effective co-production: Getting under the skin of it: Social Care Innovation Network 2019

To enable people with profound disabilities to participate in co-productive processes: NAS/Mencap Involvement Guide: How to involve people with PMLD in decision-making and consultation: Involve me (2011)

To learn about different approaches to develop community led support: What Works in Community Led Support?  First evaluation report. NDTi (2017)

To improve access to health care: Access to primary and community health-care services for people 16 years and over with intellectual disabilities: a mapping and targeted systematic review. Health Service Delivery Res (2020);8(5).

To improve commissioning practice: Commissioning Services for People with a learning disability: Good Practice guide (Wales): National Commissioning Board (Wales) (2017)

To improve transitions support/planning: Transition from children’s to adults’ services for young people using health or Social Care: NICE guideline - NG43 (2016)

To understand to the social work role in the transition to adulthood: Preparing for adulthood: SCIE (2019)

To improve support for the transition to adulthood throughout childhood and comply with the special educational needs and disability code of practice for 0-25 year olds (2014): Preparing for Adulthood: Outcomes across the age ranges for children and young people with special educational needs and disability (2017)

To improve the quality of the “Local special educational needs and disability offer” and increase the engagement of young people and carers in improving the offer: Developing the Preparation for Adulthood Section of the Local Offer: PfA (2017)

4.3 Expected outcomes

In terms of outcomes councils that are implementing good practice should find that:

  • The number/proportion of adults with learning disability living their lives with less or without any specialist segregated support services will increase over time
  • Adults with learning disability, their carers, care and support providers and adult social care staff can all easily access up to date information that they need to live (or support someone) to live the life they want to
  • Year on year a lower proportion of new demand (including transitions from children’s services) will be urgent/unplanned and a lower proportion will be met in residential care, nursing care or hospital and less will be “Out of Area”
  • Market capacity, capability and resilience will all improve. This means that:
    • Less people will have support that is not fully suitable to meet their needs.
    • Waiting lists for services will become shorter
    • Less providers will experience financial difficulties or go out of business.
    • There will be less instances of services providing poor quality care and support.
  • An increasing proportion of young adults making the transition to adulthood and their carers who report their experience as positive
  • An increasing proportion of young adults making the transition to adulthood will be in employment, education, or training

They let me control my life and help me live it."
Quote from an expert by experience when asked what good social workers do

4.4 Understanding demand, prevention, and early intervention (including transitions support) performance indicators (DOC)

Outcome indicators and their aim

Outcome Indicators

Aim

National/Local

The proportion of new learning disability care and support packages that are urgent/unplanned versus previous years.

Decreasing percentage

National data

Trend in recent years of the proportion of new support packages (all and after transition) that are bed based (analysed between In Area and Out of Area) versus community based

Decreasing percentage

Local data

Number and percentage of new support packages (all and after transition) placed Out of Area versus previous years.

Decreasing percentage

Local data

ASCOF (3D) - Proportion of people who use services/carers (Can we separate learning disability out) who find it easy to find info about support.

Increasing percentage

National Data

Monitor the results from the local market sufficiency/risks and sustainability tool/exercise to assess if market:

  • Related risks are increasing or decreasing?
  • Sufficiency is increasing or decreasing?
  • Sustainability is increasing or decreasing?

Indicates a more robust local market

Local data

Number of learning disability support providers who have:

  • Handed contracts back in last 12 months compared to previous years
  • Collapsed financially in last 12 months compared to previous years

Decreasing numbers

Local data

 

Individual experience indicators and their aim

Individual Experience Indicators

Aim

National/Local

Ask people who use services and carers to assess their experience compared to the Making it real “I” statements re: Having the information I need when I need it: Information/advice. (See Part 12 - Annex 3)

Increasing percentage answer “positively”

Local data

Ask people who use services and carers to assess their experience compared to the Making it real “I” statements re Keeping family, friends, and connections: Active supportive community. (See Part 12 - Annex 3)

Increasing percentage answer “positively”

Local data

 

From adult social care finance return (ASC FR006) split out gross current expenditure on learning disability information and advice - Calculate and benchmark to comparable councils:

  • Info/Advice expenditure per head of adult population
  • Info/Advice expenditure per adult with learning disability supported by the council

From ASC FR007 split out gross current expenditure on learning disability Commissioning - Calculate and benchmark to comparable councils:

  • Commissioning expenditure per head of adult population
  • Commissioning expenditure per adult with learning disability supported by the council
Financial/value for money indicators and their aim

Financial/Value for Money Indicators

Aim

National/Local

From adult social care finance return (ASC FR003C) split out gross current expenditure on support for learning disability carers – Calculate and benchmark to comparable councils:

  • Carers support expenditure per head of adult population
  • Carers support expenditure per adult with learning disability supported by the council

Move towards target ranking having taken local circumstances into account

National data

Move towards target ranking having taken local circumstances into account

National data

Move towards target ranking having taken local circumstances into account

National data

 

4.5 Self-evaluation questions

How to rate yourselves against the self-evaluation questions

For each chosen section the director of adult social services should consider each statement about good practice that follows and work with their senior management team, representatives of key partner organisations and local experts by experience to rate how close the councils approach to supporting adults with learning disability  is to the best practice described using the following five-point scale, where 1 means it is far away from best practice and 5 means it is already using best practice.

The scale to be used is as follows:

1. Commitment

The importance of this best practice has been recognised. Conversations are taking place internally or with partners including experts by experience, but work has yet to begin.

2. Developing

Work on this best practice has commenced internally or with partners including experts by experience, but it has yet to be signed off, is only in the planning stages and with resource identification is still in progress.

3. Implementation

An agreed fully resourced and commissioned (where relevant) plan is in place. Implementation has started, but best practice is not yet fully operational.

4. Operational

Best practice is in place and is being used, albeit implementation is at an early stage, and further refinements in line with the learning from implementation may be needed before expected benefits are fully realised.

5. Sustainable Delivery

Best practice is in place and is working well. Long-term funding, resources and structures are in place i.e. best practice now represents “business as usual” and continuous improvement processes are in place.

Understanding demand, early intervention, and transitions scores

Understanding demand, early intervention, and transitions

Score 1 - 5

Basis of score

1. The council undertakes research and analysis to gain a detailed understanding of the support needs of adults with learning disability  (including people not yet supported) and plan how to best support those needs, now and in the future: Specifically, this includes:

  • Bottom-up use of data about known individuals to assess risks and anticipate key transitions in their lives e.g. Children with learning disability likely to need support in adulthood, Adults with learning disability likely to experience a significant life transition e.g. breakdown of care arrangements,
  • Making rolling forward projections of future accommodation needs for adults with learning disability based on bottom up data, and
  • Top-down use of national data e.g. demographic/special educational needs and disability/other to predict longer term demand trends incl. younger people with complex needs and older people with learning disability.

 

 

2. Council research, analysis and planning is co-productive planning and includes the whole community so that plans reflect local people’s priorities. The council ensures reasonable adjustments are made so people with all levels/types of learning disabilities or autism can participate in these processes (incl. people not yet supported) and plan how to best support those needs, now and in the future.

 

 

 

3. The council undertakes community development activity so that adults with learning disability increasingly live their lives in the community rather than relying on specialist/segregated support services. This includes:

  • Working closely with its local communities to continuously map personal and community assets and to connect them together,
  • Enabling peer support networks for adults with learning disability and carers,
  • Continuously monitoring the accessibility and safety of local communities for adults with learning disability, and
  • Monitoring the proportion of time adults with learning disability spend in their local community rather than in segregated services.

 

 

4. The council ensures good quality and accessible (easy read) information and advice is available to the whole population about the local strategy, local pathways, local services, welfare benefits, individual rights etc. and get regular feedback to check it is meeting the needs of the local community e.g. its accessibility, accuracy, completeness and usefulness.

 

 

5. The council undertakes market analysis/development/oversight activity to ensure there is a sustainable market of care and support able to meet the full range of support needs and to provide reasonable choice for adults with learning disability. Key activities include having an up to date:

  • Market analysis that assesses market sufficiency, gaps, and risks,
  • Market position statement giving the council’s commissioning intentions, and
  • Commissioning plan (ideally joint with the NHS) to meet the support needs of the local people with learning disability and to close gaps in the range of provision available.

 

 

6. The council uses a strategic approach to the development of an integrated accommodation, care, and support pathway. This will offer a range of support options to meet all needs within the population:

  • Where people require higher levels of support, the accommodation and support model has the flexibility to vary support as people’s needs change with the least disruption to their lives as possible, and
  • Registered residential/nursing care options are used only exceptionally. Models where support can be reduced when it is not required, for example, as people acquire confidence and skills, or increased to meet additional needs, as needed are preferred

 

 

7. Commissioners work with providers to ensure that there is a sufficient and timely supply of care and support available in the local area:

  • There are options that are capable for meeting the needs of all adults with learning disability as close to their local area as possible,
  • Where very specialist accommodation and support is required, there is joint commissioning on a regional or sub regional basis,
  • Market development activities encourage diversity in the market and effectively support the use of personal budget, and
  • Respite care is available, including through “Shared Lives” schemes

 

 

8. The council supports campaigns to help improve public understanding and reduce stigma/negative stereotypes about adults with learning disability.    

9. To ensure young adults with learning disability have a smooth transition to adulthood the council co-ordinates how it works with health and education colleagues to fulfil special educational needs and disability responsibilities under the Children’s and families Act (2014), and transition assessment responsibilities under the Care Act (2014). It aims to support the transition to adulthood by ensuring that each young person with learning disability is supported:

  • From the earliest possible age to develop the skills they will needed in adulthood to maximise their personal potential and achieve their personal aspirations,
  • To make co-produced plans to be as independent in adulthood as is feasible in adulthood. This include consideration of housing, employment/higher education, independent living, participation in society and ongoing care and support, and

To make the transition from childhood to adulthood (with or without social services support) as smooth as possible.

   

10. Council research and analysis includes data on the levels of learning disability inequality in their area to better understand the causes and to plan how to counter the causes using:

  • “whole council” approaches whereby every department in the council has a role in reducing the inequality experienced by adults with learning disability, and

“whole system” approaches whereby the council engages with all parts of the local community and other public sector agencies so each understands it has a role in reducing the inequality experienced by adults with learning disability.