Transition to adulthood
Your child with PWS becoming an adult can be a challenging time, navigating changes across health, social care, education and benefits.
Growing up with Prader-Willi syndrome also brings additional complications around desire for independence, mental capacity and access to food and money.
We know this can feel overwhelming so we've created this transition hub to help you get everything you need in place.
- Use our handy transition planner has a checklist to help you organise what you need to do and when
- Use the information below to help you with each topic as and when you need it
Benefits and finances
Helping your young adult manage money and bank accounts:
Because of the overriding biological drive to eat in PWS, people need extra safeguards in place to help them manage money safely.
These can include:
- Having an appointee for benefits
- Setting up bank accounts in specific ways
- Having LPA for finances or a Court of Protection Deputyship in place
- Agreeing an approach for spending money
Read more about how to do this:
Transitioning to adult age benefits
Between the ages of 16-19, the benefits your child and family receive go through significant changes.
These include:
From 16, in England, Wales and Northern Ireland, the young person will be asked to claim PIP to replace child DLA.
In Scotland, the family can choose when to move from Child Disability Payment to Adult Disability Payment between 16 and 18.
Ends between 16-20, depending on whether the young person remains in education
During this time the child-related Universal Credit payment will end, and the young person needs to consider a claim in their own right.
PWSA UK provides templates and guides for applying for benefits including PIP on our financial support page:
The charity Contact provides benefit guides, helpline support and access to specialist benefit advisers.
Mental Capacity and Making Decisions
When your child reaches adulthood, you lose your right to input into decisions about their health, welfare and finances.
As well as safeguarding people around food and money, people with PWS often need additional help making decisions about their health, and the many complexities that living with PWS involves.
Find out more about helping someone with PWS make decisions and setting up LPAs and Deputyships:
The Mental Capacity Act (MCA) protects adults’ rights to make decisions. However, in the case of people with PWS, the application of the MCA, particularly around decisions about food or the use of money, can be a challenge.
Health
We've rounded up the steps you need to take to ensure a smooth transition in this guide:
- Once someone becomes an adult, parents and carers lose the automatic right to oversee and manage their child's health records, appointments and prescriptions unless special arrangements are put in place.
- Although this should happen automatically, delays at this stage can mean gaps in care and missed referrals.
- Turning 18 means your child will be
transferred from paediatric to adult care teams across endocrinology, dietetics, mental health services and all other specialists they see.
Transition to adult social care
Everyone with Prader-Willi syndrome should be under the care of a social worker.
Your child's social worker should start the process of transition to adult social care well before they turn 18.
If this isn't happening or you don't have a social worker, you should request an Adult Social Care Transition Assessment. (Care Act 2014 Section 58)
The assessment should consider:
Future care package
People with PWS need 24 hour support to keep them safe and social care need to consider how this will be facilitated when the young person is no longer in education.
Day opportunities
People with PWS need access to meaningful structured activities to enable then to thrive.
Your social worker should work with you to find activities in the local area that your young person can access.
This could include day centres, supervised activity groups related to their interests, or community activities that they could attend with support.
Respite
If your young person is continuing to live at home, you will need regular breaks from providing the intensive care that someone with PWS requires.
Social care should fund this and help you find appropriate placements, and you can contact our support team for help and advice.
PA time
Social care should also consider whether your young person needs a PA to accompany them to community activities and help them build independence skills.
Direct Payments
Your young person's social worker should carry out an assessment to determine if they are entitled to direct payments. Direct payments can be used to fund services or activities that benefit the person with PWS.
Find out more:
https://www.carersuk.org/help-and-advice/practical-support/arranging-care-and-support-for-someone/direct-payments/
CHC funding
Continuing Healthcare (CHC) is NHS funding for people whose main needs are related to their health. Social care funding (paid for by local authorities) covers support such as personal care and day-to-day needs and is usually means-tested.
People with Prader-Willi syndrome (PWS) often have both health and social care needs, which can lead to disagreement about who should fund their care. Following an assessment, CHC may fund all care or contribute alongside social care funding.
This guide explains the CHC assessment process and highlights what should be considered for people with PWS. Our team can also support you through the assessment and application process.
Parent friendly guide to NHS Continuing Health Care (CHC)
Education, training and work
Many people with PWS are able to successfully complete further education courses with the right support.
EHCP transition reviews
If your young person has an EHCP, preparing for adulthood needs to be included from age 14.
Ensure preparation for adulthood outcomes include:
- employment opportunities
- living/accommodation
- community inclusion
- health
- travel training where appropriate
Remember PWSA UK can support with EHCP reviews and attend meetings with you virtually.
Finding suitable further education placements
Our support team maintain a list of residential schools and colleges that have supported students with Prader-Willi syndrome and can provide it on request.
Our team can also advise on and assist with applying for educational placements.
PWS training for colleges and education placements
Our training team provide online and in-person training for schools and colleges to help them meet the needs of students with PWS and enable them to thrive.
Find out more: https://www.pwsa.co.uk/training-options#EducationSettings
Supported Internships
A supported internship is an unpaid, work‑based study programme for young people aged 16–24 with Special Educational Needs and Disabilities (SEND) who have an Education, Health and Care Plan (EHCP), combining a long‑term work placement (usually 6–12 months) with a personalised study programme and support from a qualified job coach.
Supported internships are designed to help young people with SEND move from education into sustained paid employment. They focus on developing practical workplace skills through real work experience while providing tailored academic learning (often including English and Maths).
FAQ for parents and carers: https://www.ndti.org.uk/resource/supported-internships-faqs-for-parents-and-carers/
Moving out: Living options for young people with PWS
During young adulthood, many people with PWS decide to move out of their family home and into residential care or supported living.
Finding somewhere suitable to live, where your young person can be supported to stay healthy and safe but thrive at the same time can be difficult, but we are here to help.
