Transitioning adult services for young people with learning disability | Our Blog

Introduction

Transition to adulthood marks a large change in anybody’s life. Think about your own experience of transition, at the age of 18 suddenly facing an adult world. For some, this may be an exciting prospect. For others, this can be an incredibly difficult and stressful time in their lives.

Think about those who may be facing all of those adult pressures, but have additional transitions, from child services into adult services. People who rely on support from social, physical and mental health care services and peple who need that care to be in place, so that they are able to live full and happy lives. What happens when transition does not go as they expected?  Or when it feels like the young people and their families do not have the knowledge or ability to navigate these transitions successfully?

It is well documented that transition from children’s services to adult services can be challenging, as it involves a change of services and professionals at the very time when they are also negotiating wider changes to their life (MENCAP, 2022). There are also gaps in information sharing which left people vulnerable to falling through gaps in services (Tarleton, 2004).

The Care Act (2014) highlights the need to identify people who may have carer and support needs as they transition to adult services. The wellbeing of each young person or carer must be taken into account so that assessment and planning for transition is based around the individual needs, wishes, and outcomes which matter to that person.  However, if information is not readily available to that individual and support network, this can make transition harder, ultimately impacting on wellbeing.

The National Institute for Clinical Excellence (NICE, 2016) guidelines for transition state several key features to ensure transition is successful, including:

• Transition planning should start early, around the age of 14.
• Planning should involve young people and their families.
• These plans should be reviewed regularly and updated as necessary.
• Transition planning should be person centred, in that plans focus on the young person and their strengths.
• The focus of transition support should be on the needs of the young person, rather than what works best for services
• Child and adult services should be working together, to ensure transition is a smooth process, and that support should be in place before, during and after transition.

 

In the Lambeth Mental Health and Learning Disability team (MHLD) we noticed that far too often, where people fall through the gaps when it comes to moving into adult services.  There was often no clear transition pathway in place as well as a lack of joint working with CAMHS (Child and Adolescent Mental health Services).  This often resulted in us not being aware of those individuals who may need ongoing support and a number of referrals to our team when families were in crisis, not knowing who to turn to next.

What is the Transitions Project?

The main aim for the Transitions Support Worker was to improve the information available to young people and their families about transition processes as they prepared for transition to adult services, including:

• Interviewing family carers - From these findings the main aim of the project was to create an information pack, with different resources on subjects linked to transition.
• Advisory group
• Information pack
• Transitions event

 

Initial findings from family interviews:

Semi-structured interviews were conducted with five carers of young people who were currently going through transition and open to the team (aged 18-35 years).  They were asked to talk about their experiences of transitions, if there had been anything helpful or less helpful, how confident did they feel going through the process and how they think they child felt about it.  Finally, they were asked about what advice they would give to others about to go through transitions. From the transcripts, the following themes were identified:

Decision making:

All carers had said at some points there was difficulties with decision making regarding their young person and adult services. Often carers felt that there was no collaborative decision-making taking place between them and services, which left them feeling that they had no say in their young person’s care.

“I try to look around for support myself, reading things about provision, but you don’t know. Sometimes they say they can do support but don’t in reality. So it's even difficult. That's reading about it and you don't really know.”

They also felt that there was a gap between what they felt they wanted for their young person, and what they actually received. For example, one parent had told their SEND (Special Educational Needs and Disability) worker that they would like for their child to remain at the same school but was left waiting for the outcome of that decision. Other carers said that the support they were told could be offered wasn’t what they ultimately received.

All interviewees shared that they struggled with funding, leading to decisions being put on hold while problems with funding were sorted.  Also, carers were not aware of where they could go to access support around funding, and changes in finances when the person become an adult impacting on the support they could give. 

Uncertainty

“This transition took a different way, we have had to repeat everything. We were planning to move everything to college. But now everything has moved here to London. It's something that we didn't expect or was ready for it.”

Another predominant theme was that of uncertainty for carers in this time.  All carers spoke of how they had uncertainty about what would happen to their children now they were adults, and that this caused a lot of the anxiety for families. This was exacerbated by the reliance on others to make decisions and not knowing how or who to contact to follow things up.  Carers were also uncertain on local service provision and often felt that they should take what they were given, as they were unaware of alternatives which affected confidence in adult services. 

Carer Experience

“Some parents have a nightmare. They don't have enough sleep. They are tired. Although they get help. Some [get] respite or these children can go to after school club. But the parents psychologically the parents, they are suffering. Emotionally as they just tried to suppress, the parents are suffering.”

One of the biggest issues experienced was a battle with services to get the right support for their child as they moved into adulthood.  Almost all carers used the words ‘I have to fight with services’ which speaks volumes about the struggles faced when moving to adult services.  Another sub-theme of carer experience was that people often felt they had to advocate for their children. Often their children are unable to understand the changes that they were facing, making it difficult to help them understand the changes.  This increases carer stress and burden and were unsure of where to access support for themselves. 

The carers also spoke of how they had been let down in the past by services, leading to mistrust. They spoke of the emotional impact that caring for their children can have at times, and how this was made worse when worrying about the future as their children were now adults.

Service performance

“Well I'm. I'm a bit lost. So you're a bit lost yourself. You're not entirely sure about all aspects of it or where to ask for help, and yeah, [finding out] is anything missing.”

Service performance could have a large impact on how carers felt their transition experience would go with one of the identified subthemes being the quality of professional support offered to families. There were both positive and negative experiences recorded in the interviews, with positive interactions with services boosting confidence in transition, and negative interactions creating feelings of mistrust in services and higher levels of uncertainty.  Carers felt there was often a lack of communication and a lack of access to information about services which left them feeling unsure and confused about how to move forward. 

Something felt by all carers was that there was a large variation in transition between services which was difficult to navigate. Some services transfer care at the age of 18, while for others it could be 19, but without knowing where to access that information, carers described feeling as though they were lost and stuck.

It was clear from these findings that there was a need for change in the way transition was handled, and that one of the ways to do this was to make information about adult services accessible to carers when young people were beginning to think about transition. The main aim of the transitions project therefore, was to create an information pack, with different resources on subjects linked to transition.

Advisory group

The advisory group was set up so we could ensure that we were creating information that was relevant and accessible for people and their families going through transitions.   The purpose of the group was to give guidance of what information would be helpful, what format would be helpful (considering language and literacy) and give feedback on completed resources.  The group decided that information should include a mixture of carer guides, easy red information and videos. 

We asked the group to share some tips from their own experiences as it was felt it would be helpful for families to also hear from others who had gone through the transition process. These personal stories were included in the transitions pack, with one of the carers agreeing to be included in a video resource, where she shared a little of her own experience and gave advice to other families about to embark on their own transition journey.

“Being part of the advisory group made me realise a lot of things and it feels like I have gained knowledge I didn’t have before. It makes me excited to know that families about to embark on that transitions process will have the information available to them, they don’t need to struggle to find information that they need, the pack has everything which is great.’’

Creating the Transition Information Pack

The starting point for creating any of the resources was the list we had created with the advisory group and make a Transition Pack which consisted of different areas of information, to make this more manageable for people to be able to choose subjects that were relevant to them, rather than having lots of information, some of which may not be useful.  The topics were:

• What is transition?
• Mental Capacity Act
• Positive behaviour support
• The Care Act
• Carer support
• Safeguarding
• Sex and relationships
• Services in Lambeth for Adults with a learning disability

 

Carer guides

Carer resources were created using online graphic design platform Canva. All resources were designed with the same layout, font, colour scheme with pictures from Canva and Photosymbols (an online photo library created for and featuring people with learning disabilities).   The resources were stored in the same place, so that editing or adding to them in the future would be easier.

The guides were shared with other members in the team working on the transitions project. to suggest any changes to be made.  For some of the guides, such as The Care Act, they were also sent to colleagues in social care for comments and feedback. We had also shared some of the resources with the advisory group for feedback.

Easy read guides

These were created in the same way as the carer guides, but with a larger font and more images from Photosymbols, to make them more accessible for people with learning disabilities.  Colour coding was used to distinguish between different sections of the guides. Content was taken from the carer guides and then reworded so that it was written for the young people themselves, rather than for carers.  there were also spaces left for the person to be able to make notes or to write down their thoughts.   Again, these were shared with team members and colleagues in social care for feedback before finalising. 

Videos

There were two formats that videos took – one was more of a ‘teaching’ video (using PowerPoint) and the other involved direct filming with people both in the Lambeth MHLD team and Michele, a carer from the advisory group. Once filming was complete, the original videos were edited, and text and music added over the top.

Bringing it together

An introduction to transitions document was completed, so that it could be sent out by email to families to include clickable links to the resources we had created, as well as links to already existing resources created by other organisations. The pack included information about what transition means, the top tips for transition provided by the advisory group and a contents page with links to our resources as well links to external resources that we felt would be useful to families (housing, keeping safe and physical health etc.).

The Communications Team in the Trust uploaded all resources to the Lambeth Mental Health and Learning Disability webpage and NHS Maudsley YouTube channel.

Transitions event

This was set up for carers to meet with our team as well as colleagues from Social Care, the Health Team for Adults with Learning Disabilities and a local support charity to help inform attendees about how we work and what support we could offer.  The event took place for 2 hours, in the Hive Café, which is part of a community service for adults with learning disabilities in Lambeth and was designed to be a drop-in session for young people and carers.  We were also able to share the resource packs. 

Seven family carers attended and gave us this feedback:

• “All of the people at this event have been helpful giving a lot of information.”
• “It would be good to attend other events like this in the future.”
• “All the professionals have been extremely kind, welcoming and supportive.”

 

Future events could be held around December, as this is when young people in school settings are beginning to explore life after school and moving on to adult services. It would be useful for families to be able to meet services at this time, so they are able to make more informed decisions for themselves and the young people they are supporting. 

What next?

The resources have now been shared with services and given to any young person and their families who are referred to Lambeth MHLD.  The plan is that these resources will be reviewed on a yearly basis.  There is also plans to hold annual transition events. 

About the author

Marie Richardson is a Psychology Specialist Support Worker in an inpatient unit for adults with learning disabilities in South East London. Prior to this, I worked in the Lambeth Mental Health and Learning disabilities team as part of the psychology team. I am also a family carer for a young person with autism. My specialist interests include the presence of attachment difficulties in people with learning disabilities and support for carers of people with learning disabilities.  

References

Department of Health (2014) 'The Care Act and whole-family approaches', London: Department of Health. Department of Health (2014) 'Care and support statutory guidance: Issued under the Care Act 2014', paragraphs 16.37-38, London: Department of Health.

National Institute for Clinical Excellence (2015) Challenging behaviour and learning disabilities: prevention and interventions for people with learning disabilities whose behaviour challenges. NICE guideline [NG11] [online] Available at https://www.nice.org.uk/guidance/ng11 [Accessed 3 March 2023]

National Institute for Clinical Excellence (2016) Transition from children to adults services for young people using health or social care services. NICE guideline [NG43] [online] Available at https://www.nice.org.uk/guidance/ng43/chapter/recommendations. [Accessed on 3 March 2023]

Tarleton, B. and Ward, L. (2005) “Changes and choices: Finding out what information young people with learning disabilities, their parents and supporters need at transition,” British Journal of Learning Disabilities, 33(2), pp. 70–76. Available at: https://doi.org/10.1111/j.1468-3156.2005.00344.x.