The Department of Health has published a revised Framework to help clinical commissioning groups and other professionals to assess the care required for children and young people (0 – 17 years) whose complex health needs cannot be met by universal or specialist health services. The original National Framework for Children and Young People's Continuing Care, published in 2010, has been amended and streamlined following a governmental consultation period with practitioners, families and lawyers alike.

The revised Framework is accompanied by:

  • A decision support tool to ensure all relevant needs are assessed and to support decisions about care.
  • A children and young people's continuing care pre-assessment checklist.
  • A guide to children and young people's continuing care for young people and parents

This article highlights:

  • A summary of the continuing care process
  • Key changes introduced in the revised Framework
  • Implications for commissioners and other professionals

 

Summary of the Continuing Care Process

A continuing care package will be required when a child or young person has needs arising from disability, accident or illness that cannot be met by existing universal or specialist services alone so a package of additional support is required.

The commissioning body is responsible for leading the process of identifying if a child or young person for whom it has commissioning responsibility under s.3 of the NHS Act 2006 has a continuing care need.

The continuing care process typically comprises three phases:

  • An assessment led by a children and young people's health assessor nominated by the commissioning body who will then draw on the advice of other professionals and make a recommendation as to whether or not the child or young person has a continuing care need. There are four key areas of evidence that should be considered in the assessment;
  • The preferences of the child or young person and their family;
  • A holistic assessment of the needs of the child or young person and their family;
  • Reports and risk assessments from a multidisciplinary team or evidence collated during the Education, Health and Care Plan assessment and;
  • The Decision Support Tool for children and young people. This is not a stand-alone tool, it is designed to ensure that relevant needs are assessed, captured and described in a consistent way.
  • A decision by a multi-agency forum or panel, considering the evidence and the assessor's recommendation as to whether or not the child or young person has a continuing care need. Ideally a decision should be made within 6 weeks of the commencement of the assessment.
  • This is followed by the development of a package of care by the commissioning body which fulfils their statutory duty to meet the reasonable needs of an individual. This should be subject to ongoing review by the commissioning body.

 

Key Changes in the New Framework

The principles underpinning the previous Framework published in 2010 continue to be relevant, however recent changes left parts of it out of date. The key changes are highlighted below:

New Structures in NHS Commissioning

The revised Framework reflects the new structures in NHS commissioning created by the Health and Social Care Act 2012.

Integrated approach to the Commissioning of Services

The revised Framework emphasises the need for a commissioning model which involves multi-agency collaboration throughout the process.

Children with complex needs will often require support from health, education and social care services and agreeing a package of care requires collaboration throughout the assessment process and agreement as to who has responsibility for commissioning the different elements of the care package.

In particular, the Framework takes account of the new integrated approach to the commissioning of services for children and young people with a special educational need or a disability ('SEND') introduced by the Children and Families Act 2014.

Since 1 September 2014 under section 26 of the Children and Families Act 2014 a new framework for children and young people (up to age 25) with SEND will apply in England. At the heart of the arrangements is an integrated Education, Health and Care plan ('EHC plan'). The EHC plan process consists of a co-ordinated assessment of a child or young person's needs, based on multi-professional input and focused on the outcomes which make the most difference to the child, young person and their family.

Personal Health Budgets

The revised Framework places much greater emphasis on personal health budgets.

Under the National Health Service Commissioning Board and Clinical Commissioning Groups (Responsibilities and Standing Rules) (Amendment) Regulations 2013 the families of a child or young person eligible for continuing care have a 'right to have' a personal health budget, covering any part of their care package provided by the NHS.

The provision of the care by way of a personal health budget can be achieved in one of several ways:

  • A direct payment made to the young person or their family;
  • The agreement of a notional budget to be spent by the CCG following discussions with the child or young person and their family as to how best to secure the provision they need;
  • The transfer of a real budget agreed as above to a person or organisation which applies the money in a way agreed between the CCG and the child or young person and their family.

Domains

The children and young people's Decision Support Tool brings together needs from across 10 care domains. The domains remain unchanged from the previous Framework; however the revised Framework and Decision Support Tool clarify how the domains should be interpreted and provide more descriptors to help assessors determine the level of need in each domain.

 

Implications for Commissioners and other Professionals

The Department of Health has indicated that the main purpose of the revised Framework is to:

  • simplify the language and streamline the guidance
  • clarify how the domains should be interpreted
  • provide advice on how the continuing care process fits into education, health and care plan assessments for children with special educational needs and disability, and multi-agency assessments.

The Framework is intended to support commissioners in determining if a child's needs are such that they require a package of continuing care, in line with the recent updates to the law. It is intended to provide guidance on undertaking a holistic assessment of the child or young person's needs. Commissioners continue to hold autonomy as to how they fulfil this function. For example, commissioners will decide how the continuing care will be provided, what proportion and level of resource is required to deliver it and how much needs to be specially commissioned, taking into account the recommendation of the assessor on the nature of the child's needs. However, the Framework sets out underpinning principles and guidance which will assist commissioners in ensuring that its assessment process is compliant with the changes in law.

Multi-agency understanding of a child's needs

At the heart of the Framework is the principle that continuing care should be part of a wider package of care, agreed and delivered by collaboration between health, education and social care. The Framework emphasises the need for a commissioning model which involves multi-agency collaboration throughout the process. As set out above, the Framework notes that the new arrangements for children and young people with SEND provide a framework for outcomes-focused joint assessments involving different partners across education, health and social care, and many children and young people who need continuing care will have special educational needs or disability. The Framework provides that local authorities and CCGs must work together to make Education, Health and Care plans work and their joint arrangements should include an agreement as to how continuing care fits with the EHC process.

Internal Governance

The Framework reiterates that commissioners must have clear processes in place. Commissioners remain responsible for establishing and managing appropriate governance arrangements. The Framework recommends that a coordinator or administrator act as a single point of contact with whom professionals wishing to discuss a child/ young person with possible continuing care needs can liaise. This will help ensure that there is effective liaison with the local authority and there is an effective management of the process.

Active involvement of a child and family

The Framework stresses that the views and aspirations of the child or young person, and of the family, are central to developing a holistic view of the child's needs. Evidence for a decision relating to continuing care can only be obtained if the child or young person and their family are involved in every stage of the process and the CCG, or their service provider, is active in engaging with them and documenting this evidence. Commissioners should be aware that relevant consent must be sought where necessary, for example, when sharing personal information between different professionals and organisations involved in their care.

Pathway for Assessment

The Framework indicates that following agreement on the package of care the commissioner will make the necessary arrangements to deliver the package of care as soon as possible. The CCG should ensure there is a clear timeline against which progress is measured. However, the Framework notes that there should be scope for flexibility, given the complexity of needs. Timescales and deadlines should always be discussed with the child or young person or their family. The pathway for assessing a child or young person's needs must be understood and agreed with all partners. Commissioners should ensure that the pathway is set out clearly in a document available to the child and their family.

The Framework suggests the following timeframes for assessments:

  • A pre-screening assessment to be carried out originally over a period of 1-2 days. In most cases, this can be done via a paper assessment.
  • Once a decision has been made that a child or young person should be formally assessed, the commissioners should aim to for a decision to be made within 6 weeks. Within this 6 week period, the development of the package of care will take place and all relevant organisations, the child or young person and their family should be notified.
  • Family should be informed of the package of care within 5 days.

Assessment led

Perhaps most importantly, the Framework is clear that the suitability of existing service provision should only be considered once a continuing care need has been established, i.e. the assessment should not be led by the services already in place. The purpose of this is to avoid a real risk that a need will not be recognised, because the young person is already in receipt of some care.

The assessor should be a health practitioner with relevant skills and competencies to undertake children's health assessments. This role should not be undertaken by an adult practitioner. Documentation is key. The Framework stipulates that every need considered under the Decision Support Tool should have evidence to support it, e.g. 24 hour care diaries, professional opinions, risk assessments, case notes.

Disputes

Outside the CCG's complaints procedure, the CCG and local authorities should have in place a local dispute resolution process to resolve cases where there is a dispute. The Framework states that the arrangements should be clear on how funding will be provided, pending resolution of the dispute, and arrangements for reimbursement to the agencies involved once the dispute is resolved. It is essential that there is a clear process agreed between commissioners for resolving issues relating to funding.

Review

Commissioners must ensure that the package of care is under regular review to ensure the developing child or young person's needs continue to be supported and met. The child or young person's continuing care needs should be reviewed 3 months after the package of care has commenced, and annually thereafter, or when a child or young person's health or function is known to have changed.

Transition to adulthood

Every child or young person with a package of continuing care who is approaching adulthood should have a multi-agency plan for an active transition process to adult or universal health services.

 

Summary and Conclusion

The purpose of the Framework is to set out an equitable, transparent and timely process for assessing, deciding and agreeing bespoke packages of continuing care for those children and young people under the age of 18 who have continuing care needs that cannot be met by existing universal and specialist services alone.

The revised Framework reflects the new structures in NHS commissioning created by the Health and Social Care Act 2012 and provides greater assistance to professionals conducting continuing care assessments via the improved Decision Support Tool.

Importantly, a greater emphasis is placed on multi-agency collaboration within the revised Framework. As such, it's imperative that commissioners and professionals are fully up to speed with the key principles of the Framework and that clear inter agency policy and processes are put in place to ensure an integrated approach to the commissioning of services for children.

Please contact Claire Leonard, Employed Barrister or Emma Timmons, Solicitor for further information.