Enabling the care and support system (domain three)

5.1 Introduction

The Care Act 2014 requires councils to promote the individual wellbeing of adults with care and support needs and carers in their area by providing or arranging for the provision of prevention/ early intervention services to avoid or delay the development of support needs including specific duties to:

• provide information and advice
• safeguard adults at risk of abuse or neglect
• support the transition to adulthood.

The Care Act 2014 also requires councils to promote diversity and quality in provision of services to meet the support needs of their local population. Councils fulfil these responsibilities by enabling a local care and support system. These consist of access arrangements, the provision of information and advice, assessment and case management arrangements, including professional social work practice, commissioning, both strategic and operational, case review and contract monitoring.

Learning Disability is a lifelong condition and people’s needs change over time. With assistance and developmental support, people can acquire skills and confidence that open new life opportunities up (sometimes referred to as progression). Therefore, the care and support system must include both:

• time limited, responsive intervention and treatment services for people when they need temporary support to either make positive progress in their life, for example, getting a new job or forming a new personal relationship or to respond to temporary challenges, such as a consequence of physical or mental illness or the breakdown of existing care and support
• long-term care and support arrangements, in or close to their local communities, including care, support, health and housing arrangements that enable them to be as independent and safe as possible.

Adults with learning disability experience mental illness at a disproportionately higher rate than the general population.

It is therefore important that they have better access to suitable diagnostic services and treatment, which may include a range of talking therapies as well as medication.

There are significant numbers of adults with learning disability who have contact with the criminal justice system (CJS), including many in prison. Research shows that their experience of the CJS is often bewildering and frightening and many feel isolated.

Hyun, E., Hahn, L., & McConnell, D. (2014) Experiences of people with learning disabilities in the criminal justice system. British Journal of Learning Disabilities, 42(4), pp 308-314.

It is important that the needs of people with learning disability who are offenders, or accused of offences, are recognised, and supported in the CJS, by the wider care and support system.

Despite Government policy, the way we currently support adults with learning disability is still overly dependent on specialist bed based residential, nursing or hospital care, often away from their home area, particularly for those who display behaviours that challenge services, including those with mental health conditions. It is therefore essential that all local authorities are actively working to deliver Transforming Care Partnership actions.

The care and support system should be rights-based, incorporating, as a minimum, the PANEL principles of Participation, Accountability, Non-discrimination, Empowerment and Legality.

The PANEL approach is founded in a philosophy that people are entitled to be fully involved in all decisions about their own lives. It incorporates an awareness of the rights of people with a learning disability, families, and carers and how these are affected by strategic choices and practice decisions.

All assessment, care and support Staff need to be aware of their obligations to respect human rights and are measuring outcomes, including quality of life, against agreed standards. It is critically important that staff understand the Human Rights Act (1998) AND council responsibilities under the Mental Health Act (2007) and the Mental Capacity Act (2005), Mental Capacity (Amendment) Act (2019), including Liberty Protection Safeguards, as well as the Care Act (2014) and Autism Act (2009)

Guidance

For further information on the issue of human rights in care settings see: Equally outstanding: Equality and human rights – good practice resource. How can a focus on equality and human rights improve the quality of care in times of financial constraint? by CQC (2018)

The PANEL Principles

• Participation – Is more than goal; it is the means to achieving this end. Participatory strategies emphasise community voice and prefer “bottom up” approaches and ideas from experts by experience (Ife, 2008).
• Accountability – Is achieved through monitoring outcomes as well as processes and testing them against the PANEL principles.
• Non-discrimination – Adults with learning disability should be seen as citizens in their own right, able to contribute to society with a right to support.
• Empowerment - Should be reflected in a strategic approach that ensures staff and people who use services have the knowledge/skills to realise rights.
• Legality - Concerns compliance with all relevant legislation, including human rights obligations set out in the Human Rights Act. It is necessary to identify the human rights implications in both the challenges a person presents and responses to those challenges; considering the principles of fairness, respect, equality, dignity, and autonomy.

5.2 What good looks like

The best councils have access arrangements that respond to adults with learning disability who contact them with information that is suitable and adapted to their specific needs at every point in the care and support journey. (See 8. Operating efficient and effective systems and processes).

They ensure staff undertaking assessment and care management roles should have a level of specialist knowledge in respect of learning disability and autism and appropriate skills in working directly with individuals from these groups and their families as required by the Care and Support (Assessment) Regulations 2014(10) (See 6. Developing the care and support workforce)

They ensure staff have a thorough knowledge of Care Act responsibilities, including people’s entitlement to Direct Payments, managed Accounts, Individual Service Accounts and Individual health Budgets

They facilitate timely access to skilled and effective advocacy for adults with learning disability.

They recognise that some adults with learning disability may have complex communication difficulties and cannot easily speak for themselves and ensure each adult with learning disability with complex communication difficulties who cannot easily speak for themselves has a communication passport. This collates complex information (including the person’s own views, as much as possible) to help other people to get to know the person and interact with them. They also put suitable arrangements in place to work with each person with communication difficulties and ensure communications tools are available to staff trained to use them effectively.

They ensure social work practice is rights based, strengths-based and outcome focused. It sees people with a learning disability as citizens, able to contribute to society and with a right to support.

Their practice model focuses on the skills, strengths, and capacities of individuals, their families and support networks and their communities. It promotes equality and non-discrimination because it is empowering and non-pathologizing. There is ongoing reflective evaluation of each individual social worker’s practice to ensure it aligns with the practice model and is focused on improving individual and community access to human rights.

They work hard to develop and maintain a cultural and organisational commitment to strengths-based working beyond frontline practice. For example, leadership (See Part 3) and administrative and management systems (See 8. Operating efficient and effective systems and processes) are aligned with a rights and strengths-based practice model which ensures that how health and social care workforce (including allied professionals) work is in line with their values, skill set and vocational calling.

They make practice and resource allocation decisions transparent and ensure they are consistent with legal requirements, including the Human Rights Act (1998), national and local policies. Case recording shows the basis for decision making and is of a sufficient standard to meet legal challenge.

They enable social services staff work effectively with NHS colleagues to ensure that an adult with learning disability has a fully co-ordinated care, support and treatment plan that has been created as a result of a process of multi-disciplinary assessment and co-production with the person.

They ensure adults with learning disability who experience mental health problems receive joined up support in compliance with NICE guidelines on the prevention, assessment, and management of these conditions. Social Services staff working as part of multi-disciplinary teams use reviews to ensure that medication prescribed by team members, especially anti-psychotic drugs, is being used appropriately and reviewed in line with good practice requirements.

They ensure assessment and the care, support and treatment plan addresses short and longer-term goals that reflect the aspirations of the person and supports people to safely maximise their independence and achieve a good quality of life. This is always co-produced with the person and they encourages support plans that are innovative and creative in relation to achieve the agreed outcomes.

They routinely consider the use of assistive and other technologies during the support planning process to facilitate achievement of outcomes and to manage risks. There is access to staff who have been trained in the use of personalised technologies to help people live the lives they want to.

They have suitable and effective means to identify the most cost-effective options to help people to achieve their aspirations and outcomes agreed in their care, support, and treatment plans.

They have effective brokerage arrangements, which may include an independent brokerage function, to support adults with learning disability to create innovative ways to achieving outcomes and to use their support resources (direct payments, Personal budgets, Individual service funds, managed accounts etc.) effectively.

They ensure care, support and treatment plans enable adults with learning disability to positively manage the risks they will encounter in their lives. Plans are regularly reviewed to check if the outcomes are being achieved and are changed if necessary. These regular and timely reviews to monitor of ongoing care and support are aligned with contract monitoring to ensure that resources are delivering value for money.

They take a strategic approach to development of an integrated accommodation, care, and support pathway. They offer a range of support options to meet all needs within the population including time limited services that meet short-term support requirements, for example those that support confidence building and independence skills development and facilitate the person to progress towards life goals, as well as longer term support requirements. See 4. Understanding demand, prevention and early intervention.

They ensure there are effective working relationships with the strategic housing function of the council and with housing providers. It enables sufficient and timely supply of suitable accommodation for adults with learning disability . Systems and processes for securing accommodation are reasonably adjusted to enable adults with learning disability equal access to the systems and processes.

They have an accommodation and support model that is flexible to vary support as people’s needs change without disrupting their lives unnecessarily. Registered residential or nursing care options are used only exceptionally. They prefer models of support that can be reduced/increased as required, for example, as people acquire confidence and skills, or to meet additional needs that develop.

They have a treatment and intervention model that has the capacity and capability to deliver additional short-term support to adults with learning disability , their families, carers or providers at times of crisis or exceptional high need and seeks to reduce the need for hospital admission.

They have fewer admissions to hospital because of behaviours that challenge, including mental health conditions. No person with learning disability stays in hospital longer than necessary.

All people on the Transforming Care Risk Register have the person-centred assessments and plans in place or planned. These will be in line with NHS England’s Care and Treatment Review Code and Toolkit 2017.

They ensure practice and commissioning decisions always use the least restrictive options. Where there are instances of deprivation of liberty within the meaning of Article 5(1) of the European Convention on Human Rights (ECHR), and the person lacks capacity to consent to the arrangements, Liberty Protection Safeguards are used to enable care or treatment in compliance with the Mental Capacity (Amendment) Act, 2019.

They work with staff in the criminal justice system (CJS) to ensure that adults with a learning disability involved in it are well supported. For example; if they are accused of offences, convicted or are witnesses they are supported to understand the process and overcome any disadvantage they may experience because of their disability.

They support an employment pathway for adults with learning disability . The council has a scheme to directly employ adults with learning disability including, but not limited to, roles as experts by experience. and monitor actual employment rates. They ensure that all assessment and care management functions routinely consider each individual’s employment options.

They work with providers to ensure that there is a sufficient and timely supply of support available in the local area to meet the needs of all adults with learning disability as close to their local area as possible. Where local demand is insufficient to sustain a local specialist resource, commissioners work regionally and sub-regionally to seek to minimise the need for use of resources a long distance from any individual’s home area. This may include commissioning of the specialist service and direct service provision.

They check each provider’s capability to meet the specific needs of an individual before support is agreed and the delivery of the care support and treatment is governed by an individual service agreement that sets out what is expected of each provider involved in a person’s care, support and treatment.

They encourage the asset building in the community and development of the local market to offer new approaches in response innovative support plans and support the use of personal budgets.

5.3 Expected outcomes

Councils that are implementing good practice should find that the:

• The quality of life experienced by/reported by adults with learning disability is improving.
• The quality of life experienced by/reported by carers of adults with learning disability is improving.
• Number/proportion of adults with learning disability supported by Hospital/Res/Nursing Care Services is reducing.
• Average length of stay where Hospital/Res/Nursing Care Services are used is reducing.
• Number/proportion of adults with learning disability who live in their own home or with their family is increasing.
• Number/proportion of adults with learning disability with long term support Out of Area is reducing.
• Number/proportion of adults with learning disability who have control over their daily life is increasing.
• Number/proportion of adults with learning disability with self-directed (including direct payments) support is increasing.
• Number/proportion of adults with learning disability in employment (paid or voluntary), education or training is increasing.
• Number of for adults with learning disability who return to live In-Area from Out of Area places with support from the local Transforming Care Partnership will be in line with local targets.
• Number/proportion of adults with learning disability accessing annual health checks, participating in public health initiatives, accessing health screening programmes, and with up to date medication review is increasing.
• Experience of adults with learning disability and their carers at their first point of contact with the council and in specialist access functions is improving.
• The number and proportions of adults with learning disability and their carer’s who contact ASC have their enquiry resolved by the access function through receipt of information and advice is increasing.
• Adults with learning disability are treated as equal citizens, experience less discrimination, and exercise control and choice, rather than being passive service recipients.
• Adults with learning disability and their carer’s have an improved experience of care and support and report they: o Are “Living the life I want, Keeping safe and well”.
  • Have as much social contact as they like.
  • Are included in discussions about their own care or/care of the person they care for.
• Percentage of individual agreed outcomes in (a) Long-term support plans, and (b) Short-term support plans of adults with learning disability achieved in each year compared to previous years is increasing.
• Average waiting list/wait time for advocacy is reducing.
• Local communities and support markets offer an increasing range of new approaches in response to innovative support plans.
• Timely supply of suitable support and accommodation for adults with learning disability is improving.
• Council’s relationship with support providers is improving.
• Number of unplanned permanent or temporary service/placement breakdowns or disruptions is reducing.
• Incidence of emergency hospital admissions for adults with learning disability is reducing.
• Incidence of behaviour that challenges care and support arrangements is reducing.
• Incidence of restrictive practices is reducing.
• Adults with learning disability in contact with the criminal justice system increasingly receive appropriate support.

5.4 Enabling the care and support system

5.5 Self-evaluation questions

How to rate yourselves against the self-evaluation questions:

For each chosen section the DASS 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 5 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:

Who is good at this?

In 2017 Milton Keynes decided it needed to transform its day services in line with its future vision to have local and community based long-term care and support arrangements wherever possible. An underpinning principle was that services provided direct by the Council should be very specialist to ensure there is capacity to meet complex needs in area.

To ensure solutions were personalised and to allay understandable fears about change a very co-productive process was used.

The impact has been very positive. Milton Keynes used to have 150 regular users of day services with a wide range of abilities.

It now has just 50 regular users of day services. All have profound/multiple support needs or behaviour that is highly challenging for providers. Each now has tailored specialist support. The other 100 now have support to access/use Universal services or have jobs. See also full case study in Part 10 - Case Studies