Publication - Advice and guidance

Supporting disabled children, young people and their families: guidance

Published: 24 Apr 2019

Guidance to help improve the experiences of disabled children, young people, and their families.

Contents
Supporting disabled children, young people and their families: guidance
Transitions

Transitions

As outlined in Principles of Good Transitions, there should be one overarching transitions plan, coordinated across services by a lead professional. This section includes information about background to what we know about transitions, however this should be as part of this holistic approach to planning transitions and read along with the adult health and social care, further and higher education and employment sections.

In this section you can find out about:-

What are Transitions?

Transition isn’t just one event, like leaving school, but a growing-up process that happens over several years and involves big emotional, physical, and mental changes. During this time, young people can take more control or responsibility, changing to different experiences, expectations, processes, places and routines. Transitions also impact on the family or those who care for the young person.

This section mostly focuses on the transition period when young people develop from adolescents  to young adults, recognising that transitions also happen at other times in life like when you move from nursery to primary school and from primary to high school or specialist school provision.

See the Education section of this website for more.

There are legal obligations, national frameworks and guidelines that services and organisations are expected to follow to make sure transitions go as well as they can. They are also based on international agreements as outlined in the United Nations Convention on the Rights of the Child (UNCRC) and United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).

A  range of Scottish Government policies and legislation which impact transitions for young people with additional support needs are listed under sources of further information at the end of this section.

Transitions - the experiences of young people and their families

In 2017 The Health and Social Care Alliance Scotland (The "Alliance") funded by the Scottish Government, produced a report exploring the transitions experiences of disabled young people and their families.

Discussions with them, key professionals, and managers of relevant services form the basis of this report which aimed  to make a practical difference to improving transitions, using information, themes and solutions gathered from people who have lived experiences of transition.

It focused on a number of key issues, for example, the ways that the principles of GIRFEC had  been applied and whether these are helpful to families. There was also a particular focus on the experiences of a co-ordinating lead professional and of planning that was  based on a holistic consideration of wellbeing. 

The report recognised and highlighted approaches which had contributed to effective transitional support and positive outcomes for the young people who experienced them. Conversely, it also looked at approaches which have contributed to negative experiences of transition. Based on these, it put forward a number of recommendations which are intended to support practitioners and managers in their practices, services and strategic developments (see the report  for details).

Libby’s Life Story - Experiences of Transitions to Adult Years and Adult Services

Libby has a supported work placement for two hours a week and is proud to get small payment each week for this. She attends a social network group for young adults with additional support needs and participates in a drama and music group. She goes swimming weekly when she is well enough and has a friend whom she meets weekly. She goes to the cinema, bowling with friends at the weekends and loves to people watch. I think she has a more active social life than us!”

Libby is at the centre of her yearly review which is a comprehensive exercise in partnership between third sector agencies, family and local authority. It is based on her wellbeing outcomes. The expectations of all partners in the plan are spelled out in relation to Libby’s wellbeing outcomes. Actions and activities are agreed with her. To make the best from the review, Libby made an illustrated booklet which is at the centre of her plan. This is about “what is important to me”- It is important that:

• You listen to me

• That I see the people I want to see

• That the people who support me know how I communicate

• That I stay as well as I can, eating well, exercising, using my wheels and standing frame

• That I have things to do, projects and drama and activities with friends, going to work 

• Libby’s own plan showed what she needs and what has gone well this past year, what she would like to do next year and some of her projects and dreams

The experiences of young people and their families were expressed in terms of "cliffs" (obstacles) and "bridges" (facilitators) and important comments included:

  • “Complex care and support need co-ordinated planning, before, during and after transition”.
  • “If you change school, health and social workers at once, plan late for these changes and reduce respite… then feelings of loss, fear, confusion and exhaustion are likely”.
  • “Between plans we need a point of contact for help and advice”.
  • “Be realistic in  planning with us – we are all in transition and transition is more than a  handover of service”.
  • “Provide information not just leaflets…so that we can understand and make choices”.
  • “Plan together” .
  • “Explore help for the person, not a type of person”.
  • “We value help that is skilled, informed, respectful, patient, creative, hopeful, reliable”.
  • “Please tune in to how conditions and relationships interact?”.
  • “Please consider the health and support needs of the whole family?”

The observations of young people, parents and carers included in the above Alliance analysis mirror those expressed throughout the work of ARC Scotland who oversee the Scottish Transitions Forum  Members of the forum include a wide range of professionals, young people and their families. The forum's central aim is to improve the experiences of young people as they make the transition to adult life.

Feedback from the forum and other quantitative research and consultation undertaken by  ARC in their 2017 report Facing the Future together shows that:

  •  Most young people with additional support needs are broadly optimistic about their transition and their future.
  •  Many parents and carers struggle to access the support they believe their children need.
  • The necessary steps to improving transitions are relatively modest, and are able to be delivered.

As set out in the Fairer Scotland for Disabled People: Delivery Plan, the Scottish Government is committed to driving forward positive momentum and responding to the challenges of achieving good quality Transitions. This will be closely aligned to and informed by the "Principles of Good Transition" 

Principles underlying good transitions, your rights and recommended timelines 

To achieve their full potential, young disabled people often need help or support in different areas of their lives, including the move from school or college, or from child to adult services. This might mean: finding a job, a new educational course or training, managing welfare and housing changes, reviewing healthcare needs, providing information and advocacy, assessing capacity and managing risk. 

The Principles outlined below give a basis to inform, structure and encourage the continual improvement of professional support for young people with additional needs between the ages of 14 and 25 who are making the transition into young adult life. 

The content of each principle has been predominantly informed by the work of the Scottish Transitions Forum, (the ARC Transitions Forum and the “Principles of Good Transitions 3”) alongside relevant national legislative and policy developments (See "further information")  These  principles also align with the rights-based approaches of the UNCRC and UNCRDP.

  • Principle 1: Planning and decision making should be carried out in a person-centred way.
  • Principle 2: Support should be co-ordinated across all services.
  • Principle 3: Planning should start early and continue at least to age 25.
  • Principle 4: Young people should get the support they need.
  • Principle 5: Young people and their families must have access to the information they need.
  • Principle 6: Families need support.
  • Principle 7: A continued focus on transitions across Scotland.

Parents and carers have the right:-

  • To request an assessment of needs for your young person
  • To request a Carer's Assessment on their own behalf
  • To be involved in the transition planning process and have their views taken into account
  • To request an appropriate support plan from your local authority if your child meets the eligibility criteria

They may also:

  • Contact the school to clarify when transition planning will commence if you have not heard from them; it is important to be included in the process.
  • Request an assessment of needs if adult support services will be required

As noted above, ALL young people with additional support needs already have the right to transition planning, to be involved in the planning process and to have their views taken into account.

For further information visit CONTACT Scotland

Coordinated Transitions Support

Research in Scotland shows that most young people feel hopeful about their transition and their future. However, young people and parents often comment that support for transitions should be more joined up with a single point of contact to help the process. (See The Alliance and ARC references in Appendix)

Young people and their families should always be at the centre of transitions planning and be given clear information about support available to them from all partners.

Important points to consider:-

  • Everyone has a role in making sure that transitions go ahead positively and that  young people with additional support needs stay supported and reach their full potential;  all young people who have additional support needs have a legal right to transition planning and this should start at least two years before any expected school leaving age.
  • The School Team commonly coordinates transition, inviting in other organisations and agencies as needed.

If you are not contacted by the school  in good time then you should request more information about planning and what your involvement will be. (If a young person is home schooled the education service should still take the necessary steps to support transition).

It is expected that the school will ensure that any relevant information is made available to other agencies at least a year before the young person is due to leave. The local authority should tell relevant agencies of the expected school leaving date and of any services may be needed such as input from social services or housing, not later than 6 months before that date.

  • The Social Work Department should explore personal income planning (Self Directed Support) with young people who meet eligibility criteria and give an idea of what budget is available to support planning and they should comply with requests for help to identify relevant adult services as previously identified in school planning meetings. Young people with additional support needs who already have a social worker should be assessed for adult services before they reach 18 years of age.
  • Health Services should be working with social services to share relevant information, with the consent of the young person or parents, and where possible attend transition planning meetings as well as making plans to transfer care to adult medical services, at least one year before the young person is due to leave school..

Further information and guidance to support transition is available on the CONTACT Scotland resource Talking About Tomorrow; for example there is a summary table of when parents and carers should be making contact with relevant services which is copied below:

WHAT TO DO?

WHO TO ASK?

WHEN?

Find out how school handles transition planning

Class teacher or additional support staff

Any time after starting secondary school

Ask for assessment of needs and carers’ assessment

Local council social services department

Any time, but at least 3 years before leaving school is helpful

Arrange a finance/benefits health check

Disability charity or other organisation

When your young person is 15 or whenever circumstances change

Find out about guardianship /power of attorney

Solicitor experienced in additional support needs issues

Begin conversation up to 2 years before it’s needed

Find out about volunteering and community learning possibilities in your area

Job Centre, Skills Development Scotland, personal contacts

As early as possible

Ask healthcare staff about transition planning

Any health professionals regularly involved with your child

At least 2 years before move to adult services

Put together a profile of your young person’s interests, abilities and needs

Your young person, plus friends or family members who know them well

Begin early – any time after starting secondary school

Further information and if needed, support is available by contacting Enquire who provide further information about transition timescales and a summary of duties  or Advocacy organisations such as Kindred.