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Life stage trigger points and how to mitigate these

Last modified: February 28, 2019
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Any young person may experience a number of significant and one or two traumatic transitions as they grow (e.g. moving house, a parent leaving or the death of a family member). However, two of the biggest, most predictable trigger points in the life of someone with a learning disability, autism or both are puberty and their transition to adulthood.

Puberty

Puberty can prove difficult for many young people given the hormonal, emotional and physical changes taking place. Sexual development and hormonal changes (e.g. erections, menstruation, mood swings) can cause increases in anxiety, aggression, low self-esteem and depression.

For those with a learning disability, autism or both, these new sensations and feelings can be very difficult to adjust to, especially for those with more complex needs. The result can be very confusing for the young person and even frightening as they may not have the skills required to understand or communicate feelings to parents and/or peers.

Every young person is different but, if it is appropriate, starting conversations early can be really helpful. Talking about the body, naming all the parts and what all the bits do in basic terms, will reduce embarrassment later on and make conversations so much easier.

When the time comes, your child’s school should start the dialogue formally as a part of the PHSE curriculum, but by using picture books and other resources early on your child (and you) should find it easier to understand. Some links to resources can be found below and there are also some low-cost materials available from a number of sources, including Amazon. 

You can also ask for help from your child’s school, GP or contact a local support group. You can find details of local support groups at https://www.contact.org.uk/advice-and-support/parent-support-groups/find-a-local-support-group/ 

Further Information 

Puberty and growing up

https://contact.org.uk/advice-and-support/your-child-your-family/growing-up-sex-and-relationships/puberty-and-growing-up/

Growing up, sex and relationships: A guide to support parents of young disabled people

https://contact.org.uk/media/1160021/growing_up_parents.pdf

10 Tips to Support Children with Autism through Puberty, Adolescence and Beyond

http://www.jkp.com/jkpblog/wp-content/uploads/2014/04/10-Tips-Autism-Puberty-Adolescence.pdf

Puberty and Growing Up (2010)

https://www.lincspcf.org.uk/DocsLibrary/LPCC_Puberty_Report_2010_10.pdf

Sex education and puberty

https://www.autism.org.uk/about/communication/sex-education.aspx

Let’s talk about puberty

http://www.easyhealth.org.uk/sites/default/files/Lets_Talk_About_Puberty.pdf

Growing up – What’s it all about?

https://www.nhs.uk/Livewell/puberty/Documents/4youmarch2010nonprinting.pdf

Transition to adulthood

The purpose of transition planning is to help prepare a young person for their future in adult life. Achieving a successful transition to adulthood takes very careful planning, with everyone working together and planning being driven by the young person’s needs, abilities and desires. Focussing upon their education, health and care needs in one combined Education and Health Care Plan (EHCP) will help your loved one build skills to learn, live, work and enjoy life in their communities and beyond.

For young people with disabilities, future options could include:

  • leaving school
  • going to college or university
  • getting a job
  • living happily with my family at home and having all my needs met
  • getting support from Health and Adult Services to stay healthy and happy
  • moving in to independent living / supported living
  • becoming a world-renowned scientist, a famous writer or musician, and/or
  • doing anything you want to do and being anyone you want to be!

Focussing on what a person can do, rather than what they cannot do, will help them fulfil their potential and ultimately improve their quality of life. It is important to make sure that their personal health and care needs are fully met in order to minimise the risks of avoidable difficulties or crisis situations occurring.

Any transition in life can pose challenges. Moving on to the adult world is a big step that can be both exciting and traumatic for young people and families alike. Reaching adulthood can bring huge changes, as the responsibility for care and support now passes from Children and Young People’s services to Adult Services, which use different laws, rules, policies and procedures so being prepared is vital. If transition planning is done successfully, it can help the person flourish.

With age also comes a change in decision-making and responsibility. As the young adult approaches the age of 18, they have a right to start make their own decisions (assuming they have the mental capacity to do so). However, subject to your loved one’s agreement, you will still be able to give advice and be there to provide support.

Please note: If mental capacity is ever uncertain, a mental capacity assessment and best interest principles will be used to inform and enact decision-making appropriately.

Planning for transition to adulthood should start when the young person reaches the age of 14.  If your loved one has been assessed as needing more help than is available through special educational needs (SEN) support they will be eligible for an EHCP. The EHCP is key to developing and maintaining the right support so that all needs can be identified and met effectively. 

Find out more about EHCPs here: 

Education, Health and Care Plans: Examples of good practice (CDC)

https://councilfordisabledchildren.org.uk/help-resources/resources/education-health-and-care-plans-examples-good-practice

There is no ‘one-size-fits-all’ approach to transition.  Attention to detail is very important, both to meet current needs, and to develop a clear approach for the future.

Supporting Transition

Here are some of the ways in which you can support your child through Transition to adult services.

  • Focus on the person
    • Listen to their voice always.
    • Meaningfully involve the young person as much as possible.
    • Encourage the young person to speak up to get what they need.
    • Quality of life
    • Identify clear goals and aspirations.
    • Person-centred planning must always be developed to enable your loved one to have a happy, healthy and fulfilled life.
    • Develop and promote independence.
    • Ensure that care and support meets the person’s needs, always!
    • Preparation
    • Research the EHCP process (e.g. use the resources below). 
    • Be prepared for meetings beforehand and know what you want to ask.
    • Have the people present who you would like there.
    • Take advantage of any related training on offer that you may find helpful.
    • Planning & Reviews
    • Get involved in the planning process to ensure that it is meaningful and truly person-centred.
    • Get involved in reviews at school.
    • Working together
    • Maintain respectful relationships with others involved in the process.
    • Make sure information is shared with the people who need to know to ensure that different services and agencies are working together.
    • Ask questions if anything is not clear or if you have any concerns. 
    • Information
    • Assemble essential documentation (e.g. a Pen Picture/One Page Profile, Communication Passport, Care Plan, Health Action Plan).
    • Make sure you have all the necessary information and detailed reports in order to help make choices and decisions.
    • Be an active member of your local parent carer organisation in order to receive information about the different kinds of support offered to parents and carers. It will also give you an opportunity for your voice to be heard, to influence decisions and make a difference.
    • Record-Keeping
    • Build and maintain records of diagnoses as evidence will be vital.
    • Include details of assessments and professional’s reports which highlight specific needs and benefits if appropriate. 
    • Keep a record of all your meetings and decisions made.
    • Progress
    • Make sure you know what actions have been taken or agreed.
    • Keep thinking about what is in the EHCP and make sure that it is flexible. 
    • Options
    • Make sure you go and look at different options and opportunities as they emerge, ask questions and make notes afterwards.

Further Information

Education, Child Social Care and Transition (Challenging Behaviour Foundation)

https://www.challengingbehaviour.org.uk/information/information-sheets-and-dvds/educationandtransition.html

Transition: National Association of Special Educational Needs (NASEN)

http://www.nasen.org.uk/resources/resources.transition.html

Preparing for Adulthood

https://www.preparingforadulthood.org.uk/

Building independence through planning for transition: A quick guide for practitioners supporting young people Preparing for Adulthood

https://www.preparingforadulthood.org.uk/SiteAssets/Downloads/x3qxy1xr636379670314536294.pdf

Factsheet: Transition to Adulthood in England for parents/carers of children with a learning disability  Cerebra

https://www.cerebra.org.uk/help-and-information/guides-for-parents/factsheet-transition-to-adulthood-in-england-for-parents-carers-of-children-with-a-learning-disability/

Transition Scope

https://www.scope.org.uk/transition

The Council for Disabled Children

https://councilfordisabledchildren.org.uk/

Moving into Adulthood and Getting a Life Oxfordshire family support network

https://www.oxfsn.org.uk/moving-into-adulthood/getting-a-life-guides/

Transition Pathway Diagram (Oxfordshire family support network)

https://www2.oxfordshire.gov.uk/cms/sites/default/files/folders/documents/childreneducationandfamilies/educationandlearning/specialeducationalneeds/supportforparents/Movingintoadulthood.pdf

14 – 25 Transitions Guide Sheffield PCF

https://sheffieldparentcarerforum.org.uk/wp-content/uploads/2016/04/Transition-Timeline_web.pdf

Legislation topics 

Special Educational Needs and Disability Code of Practice:  0 to 25 years

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/398815/SEND_Code_of_Practice_January_2015.pdf

The Care Act: Transition from Childhood to Adulthood (SCIE)

https://www.scie.org.uk/care-act-2014/transition-from-childhood-to-adulthood/

National Institute for Health and Care Excellence (NICE) Publications 

Transition from children’s to adults’ services for young people using health or social care services: NICE guideline [NG43] Published date: February 2016

https://www.nice.org.uk/guidance/ng43

Transition from children’s to adults’ services: Quality standard [QS140] Dec. 2016

https://www.nice.org.uk/guidance/qs140

Getting the right Education Health and Care Plan 

An Education, Health and Care Plan (EHCP) is for children and young people aged up to 25 who need more educational support than is available through special educational needs (SEN) support. An EHCP sets out the education, health and social care needs your child or young person has and the support that is necessary to cater for those needs. It is important that your loved one’s needs and the provision they require is described accurately and located in the correct Section of the Plan. If you are concerned that this is not the case, or if you think your loved one’s needs may have changed, you can ask for an emergency review. You can find out more about EHCPs below.

Further Information

Education, Health and Care plans IPSEA

https://www.ipsea.org.uk/Pages/Category/education-health-and-care-plans

Education, Health and Care (EHC) plans Contact

https://contact.org.uk/advice-and-support/education-learning/education-health-and-care-(ehc)-plans/

Education, health and care plans in England NAS

https://www.autism.org.uk/about/in-education/extra-help-in-school/england/ehc-plans.aspx

Special educational needs and disability A guide for parents and carers August 2014

https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/417435/Special_educational_needs_and_disabilites_guide_for_parents_and_carers.pdf

EHCPs good practice examples CDC

https://councilfordisabledchildren.org.uk/help-resources/resources/education-health-and-care-plans-examples-good-practice

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