Disabled Children and Young People (Transitions to Adulthood) (Scotland) Bill – detailed call for views

The Health and Social Care Alliance Scotland (the ALLIANCE) welcomes the opportunity to respond to the Education, Children and Young People Committee’s call for views on the Disabled Children and Young People (Transitions to Adulthood) (Scotland) Bill.

This response is informed by engagement with ALLIANCE members and partners. The ALLIANCE has heard repeatedly that children and young people’s experiences of transitions to adult services are inconsistent and can have a significant impact on the care and support that children and young people receive at a time of profound change and adjustment. Support offered to children, young people and their families throughout the transition period must be underpinned by human rights and principles of fairness and inclusion.

A WORD copy of our response can be found on the ALLIANCE website: https://www.alliance-scotland.org.uk/blog/news/alliance-response-to-the-disabled-children-and-young-people-transitions-to-adulthood-scotland-bill/

The Disabled Children and Young People (Transitions to Adulthood) (Scotland) Bill (thereafter “the Bill”) aims to improve experiences of disabled children and young people in their transition to adulthood and support the realisation of their right to independent living. The ALLIANCE welcomes the overall aims of the Bill.

As discussed below, we welcome the proposals to introduce and implement a National Transitions Strategy, to assign special responsibility to a member of the Scottish Government or to a junior Scottish Minister in relation to the exercise of the functions of the Act, and to require local authorities to introduce a transitions plan for each disabled child and young person.

If implemented effectively these aims would have a positive impact on the experiences of disabled children and young people, and their families, as they experience changes in their care, services, and support. Offering and sustaining timely and good quality support to children, young people and their families is core to upholding human rights, as well as principles of fairness and inclusion.

To achieve effective implementation, the ALLIANCE recommends that the Bill is underpinned by human rights and a rights based approach. We note that there is only one reference to the rights of disabled children and young people within the Bill. To ensure the Bill is meaningfully grounded in human rights, the ALLIANCE recommends aligning it explicitly with internationally recognised human rights treaties, including the United Nations Convention on the Rights of the Child (UNCRC) and the United Nations Convention on the Rights of Disabled People (UNCRPD). This aligns with relevant policy and legislative agendas including the UNCRC (Incorporation) (Scotland) Bill and the Scottish Government’s plans for wider human rights incorporation. Explicitly embedding human rights within the Bill ensures that we are actively upholding children’s rights and provides a robust legal basis to challenge practice which is inconsistent with those rights.

As outlined in The Promise, it is important that children’s rights are at the forefront of legislation, policy, and practice to ensure person centred change is implemented:

“Scotland must implement the rights of the child in a way that does not reinforce a focus on policy, process and procedure but supports the ability of children and those around them to connect and develop relationships and cultures that uphold their rights as a matter of course.”

Additionally, we would welcome further detail on accountability mechanisms throughout the Bill. While we welcome the proposals to place duties on Scottish Ministers, local authorities, and other bodies, it is unclear what consequences there are if these duties are not fulfilled, for example if a local authority does not create a transitions plan for a disabled child or young person within that area. Accountability is a core human rights principle, and we would welcome further detail on accountability mechanisms for those who do not comply and what steps will be taken to ensure human rights are protected.

Introducing this Bill is a welcome and positive development to progress the rights of disabled children and young people in Scotland. The ALLIANCE believes that grounding these provisions in law is important to implement change and to place obligations on the Scottish Government and public bodies to deliver good quality, person centred care that meets the rights and needs of disabled children and young people, and their families as they navigate changes across interlocking systems. Changing the law will therefore support disabled children and young people to receive appropriate support to help them transition to adulthood.

However, it is important to recognise that transitions to adulthood will also require a culture shift at ground level to ensure disabled children and young people’s outcomes are at the heart of planning across services and to enable effective collaboration between services, including education, health, and social care. The Bill must therefore be accompanied by robust guidance and implementation to ensure rights are upheld and that disabled children, young people and families are informed and empowered to make decisions about their future.

The ALLIANCE has not identified any unexpected or unforeseen effects of the Bill.

The ALLIANCE believes that the Bill adds to current legislation to offer specific protection for the rights and needs of disabled children and young people and to ensure they are offered appropriate and good quality support as they transition to adulthood.

The issues relating to transitions between child and adult services are well documented. The ALLIANCE’s Independent Review of Adult Social Care engagement activity highlighted a lack of tailored support during the transition period:

“As an individual increases their independence within their education or life choices it may be that they need different or more support to assist this change. When moving from children to adult services it can often seem the opposite, with service input wrapping up or reducing. This can feel for people going through this transition like they are starting all over again, rather than building on the achievements they have already made.”

This is also in line with the recommendations put forward by The Promise, which highlighted the need for integration and improved interaction between services and sectors, as children transition into adult services.

The proposals outlined in the Bill therefore set to address an identified gap across interlocking services which directly impacts the rights of disabled children and young people across Scotland. This Bill would help to improve collaboration between services and has the potential to improve relationships between professionals, children and young people, and their families to ensure coordinated and person centred care and support.

The Bill places specific duties on the Scottish Government, local authorities, and other bodies which will necessarily have a financial and resource impact, for example the appointment of a local authority officer to manage and to co-ordinate individual transition plans. We believe that this resource and financial impact is essential to improve the rights and outcomes of disabled children and young people. The ALLIANCE recommends that adequate resource is allocated to ensure the duties outlined in the Bill are fulfilled by the relevant bodies and the rights of disabled children and young people are progressively realised.

As outlined above, transition from childhood to adulthood is a period of profound change and adjustment – both for disabled children and young people and for the families and carers that support them. The Bill sets out to improve outcomes and quality of life for disabled children and young people across Scotland as they navigate these changes.

In 2018 the ALLIANCE facilitated an engagement event exploring transitions in social care and self-directed support (SDS). Participants outlined core issues with the transitions process including a lack of timely planning, preparation and support, and high levels of bureaucracy or ‘red tape’. One participant compared the transition period to a “Jenga block … whereby the pieces of their life were removed without appropriate alternatives in place” leading to feelings of being a “hindrance on their family”. It was also noted challenges faced during transition periods can be long lasting.

The Bill proposes to implement an individual transitions plan for each disabled child or young person across Scotland, which would ensure that all disabled children and young people are equitably supported by local authorities and other public bodies in a person centred way that meets their rights and needs, and improves their quality of life.

Yes.

The ALLIANCE welcomes the proposal to introduce a National Transitions Strategy within one year of Royal Assent, as outlined in Part 1 of the Bill. An underlying strategy is important to ensure the provisions and principles of the Bill are reflected at ground level and to outline core actions needed to achieve its core aims.

Section 2 of the Bill outlines proposals for consultation on the National Transitions Strategy. We welcome the proposal to place an obligation on Scottish Ministers to consult on a draft strategy, and to consider the views of certain population groups as outlined in section 2(3). However, the ALLIANCE recommends going further to place a duty on Scottish Ministers to fully co-produce the National Transitions Strategy with the groups listed under section 2(3) at the outset (rather than consulting on a draft) and to work collaboratively to take views into account at the earliest opportunity. Embedding a co-productive and collaborative approach at the outset will ensure that marginalised voices are heard throughout the process of developing a strategy.

Section 3 of the Bill outlines that within one year of Royal Assent the Scottish Ministers must publish the National Transitions Strategy and lay a copy of it before the Scottish Parliament. Additionally, the Bill outlines at section 16 that an annual report will be published on progress made by the National Transitions Strategy. The ALLIANCE welcomes these proposals, which are important in upholding principles of transparency and accountability. We welcome the proposals to make these documents publicly available. In addition we recommend that such documentation to be made available in a range of accessible formats.

Accessible information should follow the Six Principles of Inclusive Communication, and should be publicly available in multiple inclusive formats, including Community Languages, British Sign Language (BSL), Braille, Moon, Easy Read, clear and large print, and paper formats. The ALLIANCE recommends involving relevant experts – including BSL and language interpreters – at the earliest opportunity to ensure communication and information provision is inclusive for all.

We also welcome the proposal under section 16(3) which states that the first report will include “a plan for intentions to collect and publish equality monitoring data”. We welcome this proposal and recommend that the Scottish Government ensures robust and fully transparent national data collection patterns to monitor and evidence impact of changes to the transition process.

In ‘My Support My Choice’, a shared research project between the ALLIANCE and Self Directed Support Scotland, we found that there are concerning gaps in national and regional data gathering and analysis around social care. Disaggregated data gathering and intersectional analysis, including monitoring personal outcomes, is essential to develop fully realised policies and practices that prioritise equality of experience for disabled children and young people as they transition to adulthood. Such work should follow human rights principles of equality, non-discrimination, participation and accountability.

To avoid gaps and improve analysis, we recommend the Bill should create a duty for systematic and robust data gathering by local and national public bodies, disaggregated by all protected characteristics, as well as other relevant socio-economic information like household income and the Scottish Index of Multiple Deprivation (SIMD) should be included in legislation at regulation level, in line with the principles of consent, choice and ownership.

The questions to capture people’s experiences should allow for personalised, qualitative responses as well as quantitative data analysis, and should be developed in co-production with disabled children and young people who access services, their families and unpaid carers. This prioritisation of both qualitative and quantitative data is essential if personal outcomes and rights are to be monitored and measured with a view to ensuring continuous improvement and progressive realisation of people’s rights. A mixed methods approach that embeds a human rights based approach would help to ensure that appropriate weight and priority is given to people’s experiences alongside quantitative data.

This data should be published regularly and made available to the public (after following standard research ethics around anonymity for respondents), with a duty placed on Ministers, local authorities, and other bodies to respond to any evidence of poor outcomes. Analysis of results should also be published and available to the general public on at least an annual basis, and include intersectional analysis to monitor how the provisions in the Bill are working in practice for different population groups across Scotland. This analysis should include use of Children’s Rights and Wellbeing Impact Assessments as practical tools to inform policy and assess impact.

We welcome the proposal for Scottish Ministers to review the National Transitions Strategy before the end of each reporting period. We recommend that the review is undertaken with people with lived experience including the groups listed under section 2(3) to assess impact and evaluation of the National Transitions Strategy, and findings made publicly available in a range of accessible formats.

The ALLIANCE also welcomes the proposal to afford special responsibility to a Scottish Minister. This is important for accountability to prioritise meaningful leadership in this area.

The ALLIANCE welcomes the proposal to introduce a local authority transition plan for every disabled child and young person. In our 2018 event report on transitions in SDS, participants shared that all young people should have access to a transitions plan that begins at age 14 and continues until the person reaches age 26. The provisions of the Bill reflect this and would ensure that all disabled children and young people are offered tailored support from their local authority.

Creating a legal duty for local authorities to introduce a transition plan for every disabled child and young person has the potential to reduce duplication in information. ALLIANCE members have highlighted that service providers and organisations generally ask for the completion of a care plan which can lead to individuals having multiple care plans which repeat the same information. The ALLIANCE recommends that the introduction of a local authority transition plan should consider integrated information and data sharing between health and social care services, including third sector organisations, followed by principles of data protection.

We welcome the proposals under Section 7(6) which set out duties in relation to awareness raising of a transitions plan. The ALLIANCE recognises the importance of awareness raising to ensure that children, young people, their families, and carers can access the care and support to which they are entitled. In a recent ALLIANCE-funded project exploring disabled children, young people and unpaid carers’ experiences of accessing health and social care services during COVID-19 it was found that young people are often not aware of the social care and social security entitlements they are accessing or are can access:

“The theme of social care, state entitlements and supports emerged as a distant and unfamiliar one for the children and young people interviewed. When asked about what social care services, benefits and supports they received from the Government (such as payments, access to day centres, clubs, transport assistance), the majority said they did not know this information.”

In this context, good quality, accessible and inclusive communication, and information provision on the availability of transition plans is imperative. We therefore welcome the proposal outlined in section 11(4) which states that “in preparing a transitions plan … a local authority must have regard to the importance of communicating in an inclusive way”.

Additionally, it is important that disabled children and young people, and their families and carers, are involved at the earliest opportunity in planning and guidance discussions. We note that the Bill states that “where a child or young person lacks capacity” efforts should be made to ascertain the views of the child or young person’s parent, guardian, or carer “so far as is reasonably practicable”. We are concerned that this may leave room for inconsistency in interpretation and it is important that the Bill is accompanied by robust and accessible guidance to ensure that efforts are taken to respect and protect the rights, will and preference of the child or young person so far as possible.

The ALLIANCE recommends that transitions plans should follow universal guidance across all local authorities to ensure that the provisions are rolled out equitably and to avoid implementation gaps and areas of inconsistency between local areas. We suggest that this guidance is fully co-produced, including with disabled children and young people, their families, and unpaid carers.

As outlined above, we would welcome further reference to human rights throughout the Bill. Section 10 of the Bill refers to the contents of a transitions plan, which must include “a statement of the child’s needs”. The ALLIANCE suggests that there is an opportunity here to explicitly embed considerations about children’s rights and would welcome a duty to consider the child’s “rights and needs”, including details of the personalised care and support necessary to “respect, protect and fulfil these rights and address needs”.

We welcome the proposal to keep transitions plan under regular review, as outlined in section 12 of the Bill. We would welcome the inclusion of a minimum review period to be stipulated within the legislation, for example, a duty on local authorities to review transitions plan every year.

The ALLIANCE welcomes the proposal under section 12 for local authorities to appoint an officer to coordinate the plan. While the ALLIANCE does not have a specific view on who this should be, our engagement has identified core qualities that this person should have. Appointing a specific person with responsibility for coordination will help with management of plans and to ensure a tailored and person centred approach.

ALLIANCE members have repeatedly highlighted the importance of holistic and coordinated support, and would welcome a central contact to support families through transitions. It is important that the person responsible for coordinating the plan has good knowledge of several services, and is able to share information with others. The importance of having a lead professional was also explored in research commissioned by the ALLIANCE exploring experiences of transitions to adult years and adult services:

“A lead professional is usually needed when there are complex interlocking services in transition planning. Families do not always know who has a responsibility for co-ordination and linking of communication. Across the spectrum of needs in this study there are usually multiple points of professional contact for distinct purposes.”

The research also noted that resource leaflets are not enough, but it is important to have a specified point of contact with expertise who can guide families on the options available to enable them to make informed decisions. The report outlined that families valued the following elements as important for co-ordinated planning:

• a key contact for information about processes, pathways and resources
• an identified professional who has some familiarity with the young person and their home life over the transitional phase, e.g. 14 –21, who could be approached or who would visit on an agreed basis and “at least once a year…”
• talking through the “nitty gritty” practicalities of choices, costs, aspirations and impact of decisions.

The research study also identified that transitions work well when:

• a transitions social worker or adult services social worker is appointed early enough to get to know the family and young person
• the learning from school and previous services, ( e.g. about how a young person communicates and deals with change) is integrated in transitional assessment and planning
• there is a personal and planned transfer between key health practitioners
• key professionals are reliable, approachable and attuned to the whole picture.

Additionally, ALLIANCE members and partners have highlighted the importance of Family Group Decision Making models, which enable families to create a plan to support disabled children and young people regarding important decisions about their future.