Supporting a young person with autism and a learning disability through transition from child to adult services
Intended for healthcare professionals
Evidence and practice    

Supporting a young person with autism and a learning disability through transition from child to adult services

Sian Golding Operational lead, child and adolescent learning disability service, Integrated Service for Children with Complex Needs, St Cadoc’s Hospital, Aneurin Bevan University Health Board, Newport, Wales
Emma Reynolds Team lead, child and adolescent learning disability service, St Cadoc’s Hospital, Aneurin Bevan University Health Board, Newport, Wales

Why you should read this article:
  • To be aware that transitions from child to adult services are often challenging

  • To identify the importance of early transition planning for successful outcomes

  • To recognise that young people’s views, preferences and wishes should be reflected in transition plans

Transition to adult services for young people with learning disabilities and complex needs should be a purposeful and planned process that begins at the age of 14. However, it is often fraught with challenges. This article explores the story of a young person’s transition from child to adult services. It shares the lessons learned and how a collaborative, person-centred approach can result in positive outcomes for young people with autism, learning disabilities and complex needs. Recommendations are made for good practice in person-centred transition planning. Although the article explores one family’s experiences, the recommendations are applicable to learning disability practice in developing improved pathways for transition for young people with complex needs.

Learning Disability Practice. doi: 10.7748/ldp.2022.e1964

Peer review

This article has been subject to external double-blind peer review and checked for plagiarism using automated software

Correspondence

sian.golding@wales.nhs.uk

Conflict of interest

None declared

Golding S, Reynolds E (2022) Supporting a young person with autism and a learning disability through transition from child to adult services. doi: 10.7748/ldp.2022.e1964

Published online: 06 January 2022

Transition is a simple word for a complex process (Hamdani et al 2011, Hurrell 2019). For the purposes of this article transition refers to the journey between child and adult services. Transition for young people with complex needs should be a purposeful and planned process that begins at the age of 14 (National Institute for Health and Care Excellence (NICE) 2016). Fiorentino et al (1998) state that transition for young people with disabilities can be effective if a timely multiprofessional approach is taken. Young people and their families rely on professionals to navigate the transition journey (Chamberlain and Kent 2005, Hudson 2006). Although parents are responsible for their children until they reach adulthood they need to be informed of the changes in legislation between child and adult services such as the Mental Capacity Act 2005. Professionals should therefore share as much information as possible with families and young people; this is particularly important at transition between services for a young person who lacks capacity (Hudson 2003).

Transition is often fraught with obstacles such as handover between child and adult services, communication, professional practice and official complacency (Gittins and Rose 2008, Herzer et al 2010, Clarke et al 2011, Kraus de Camargo 2011, Holtom et al 2012). Research on transition has identified challenges in handover between services, communication, professional practice and official complacency (Heslop et al 2002). Small numbers of young people transition to adult services each year. The confusion and bargaining over interorganisational relationships and responsibilities means that transition can be uncoordinated and there can be confusion and a lack of continuity of services for young people and their families (Hudson 2006).

Hari’s story

There is a lack of research and evidence on the transition experiences of young people and their families. After one young person’s transition to adult services the authors met with his family and used a structured interview to explore their experience of transition. The authors also reviewed pre- and post-transition outcome measures. The family had been referred to the intensive community support (ICS) team and had given their consent to being involved in this work. A Mental Capacity Act 2005 assessment and best interests decision were made on behalf of the young person.

Hari (not his real name) had a diagnosis of autism spectrum disorder and learning disability. At the time of referral to adult services Hari engaged in significant levels of behaviours that challenge, which posed a high risk to himself and others. Hari lived at home with his family and attended a specialist school. Hari’s family found it increasingly challenging to manage him at home due to his complex needs. They reflected on this during the interview:

‘Family life before [the transition] was all about Hari. If Hari was happy then everything was okay, everything was centred on him. We always put boundaries in place but as he got older Hari wanted to exercise more control. We tried to maintain the boundaries but Hari was pushing these, he would push us and become aggressive unless we did what he wanted. We never gave into him and that’s why we saw the increase in aggression. This had a massive impact on our family.’

‘Visits to members of the family stopped a long time ago, we tried to manage things within our family unit as other members of the family didn’t fully understand Hari’s needs and what life was like for us. Our support networks shrank and we became more isolated. We were getting to the point where we could no longer cope with the situation as it was.’

‘It was nothing for Hari to wake us [Hari’s parents] up at 3am and pinch or kick us to get us out of bed; we just accepted it and did it.’

‘I [Hari’s father] gave up my job because while I was in work I was preoccupied with worry about what was happening at home and wondering if everything was okay. I would look at the clock and think about what was happening at that time. I couldn’t concentrate and so had to leave my job.’

After Hari’s 17th birthday a referral was made, by a transition coordinator based in children’s social services, to the adult community learning disability team and a community learning disability nurse was allocated. The community learning disability nurse identified complexity in understanding Hari’s behaviour and made a referral for assessment to ICS. Positive behaviour support (PBS) is the core framework used by the ICS team. PBS is a values-based, person-centred approach that seeks to understand the function of behaviour. It is proactive and preventive, focusing on developing skills and increasing quality of life which, in turn, reduces the severity and frequency of behaviours that challenge (Allen et al 2005).

The initial referral to the ICS team identified physical aggression, damage to property and stereotypy as the main behaviours of concern. The aims of the referral were to gain an understanding of behaviour, reduce its frequency and consider ecological and antecedent interventions, such as changes to the environment and access to meaningful engagement. It was agreed for the ICS team to undertake a task-specific intervention and complete direct observations across different settings. The community learning disability nurse raised concerns about the level of risk Hari’s parents were managing at home and the sustainability of this and the short period of time to undertake a robust transition to adult services.

The direct observation summary completed by the ICS team identified the high level of risk posed by Hari’s behaviour towards his parents. It prompted the need to change the ICS team referral to an in-depth assessment/transition to develop an interim PBS plan. It was also evident that the family were in crisis. There was a high risk of family breakdown and potential for Hari to be admitted to an assessment and treatment unit. Staff in the services began to realise the complexity of Hari’s needs. At the same time the family were starting to realise what support could be offered:

‘I knew nothing about transition. I had been to transition meetings at school; I remember thinking that I knew transition wouldn’t be like that for Hari, the things they were talking about were for high-functioning children.’

‘A transition worker came to discuss transition when Hari was 17. I didn’t understand what they were talking about at the time, it was a bit overwhelming. I now understand all the things they talked about at that meeting… I had no clue about the adult services out there and the differences between them.’

‘I didn’t hear anything then for a while. I was waiting to be called, just waiting for something to happen.’

‘It [transition] didn’t make sense to me. It only started making sense when the learning disability nurse started coming to visit me. I couldn’t relay any information back to my husband because I didn’t understand it myself; it was difficult not being able to support each other at those meetings because one of us stayed behind to look after Hari.’

‘Hari had attacked me. I rang social services, the social worker wasn’t there and I spoke to someone else and asked them to pass on a message, they advised me to ring the police. Then someone rang me back and asked if I wanted Hari to go to respite. We had direct payments in place at the time so we had support. I wanted Hari’s routine to continue as changing the routine would have made things worse. I was having daily telephone calls asking if I was okay and did we want some respite. No one came to see us; there were mentions of police and of sectioning Hari.’

‘It felt like a threat when people were talking about sectioning Hari. I was asking for help. They were asking “How can you manage in the house?” It was very hard for me to ask for help in the first place.’

Weekly multi-agency meetings were coordinated to plan an effective transition for Hari. Due to the complexity of the process it was important for Hari’s family to be part of these meetings to aid their understanding:

‘I felt confused, everyone was giving me different information at separate meetings. I was having a difficult time with Hari’s behaviour and I was frightened. Things I had been told didn’t make sense.’

‘I believed that if we didn’t agree to something being proposed [by professionals] then the decision would be made by everyone else at the table. I was very worried about this and went to a solicitor to get some legal advice. I was worried that everything would be taken out of my hands. I still wanted responsibility for my son. That was my biggest fear to lose that control.’

‘When the learning disability nurse came to see us she made it sound straightforward, she gave me information that I could learn from.’

Referrals were made to other health professionals for their advice and input with Hari’s case (Box 1).

Box 1.

Members of the multidisciplinary team involved in Hari’s case

Hari’s family

Hari’s parents were involved in all assessments and Hari’s mother attended the weekly MDT meetings providing vital information and knowledge about her son

Adult community learning disability team (CLDT): a community nurse, speech and language therapist and consultant psychiatrist

Hari had been allocated a community nurse from the adult CLDT before his 18th birthday and began the assessment process

Intensive community support (ICS) team: a behavioural clinical specialist (BCS), occupational therapist, dramatherapist and consultant clinical psychologist

After referral to the ICS team, Hari was allocated a BCS to undertake the in-depth assessment and due to the in-depth referral, other members of the team started their assessments

Continuing healthcare: a case manager

The learning disability nurse made a referral to the complex care team about the assessment and commissioning process

Service provider

After agreement the service provider started to attend meetings and completed their own assessment

Hari was assessed as having a primary health need and was eligible for NHS continuing healthcare (CHC) from the age of 18. NHS CHC is a package of care that is arranged and funded by the NHS where an individual has a primary health need as detailed in the Welsh continuing healthcare framework (Welsh Government 2014).

‘Things started to fit into place slowly with the explanation about what CHC is, it still wasn’t that clear. I thought even if he does reach CHC eligibility, what does that mean… What is a provider?’

The MDT met weekly and at each meeting an update was given on the assessment and commissioning process. Through in-depth assessment and formulation a PBS plan was developed by the ICS team with input from the multidisciplinary team (MDT). Hari’s family began to consider whether he was now ready for supported living; they recognised that maintaining the situation at home was unsafe and unsustainable. The MDT started to consider options of 24-hour support. With the high risk of crisis at home there was a sense of urgency to find a suitable environment and a skilled staff team:

‘I had no clue about the services out there and the difference between them.’

A service specification was completed to identify what Hari needed in his new home and what essential skills, training and experience the staff team required to provide effective support.

The family were integral to the whole process of assessment and formulation. A provider was identified and two case workshops were facilitated to share essential information about Hari’s communication, things he liked and disliked. Hari’s parents prepared videos and presented examples of Hari’s communication systems. The PBS plan was also shared; Hari was at the forefront of the workshops, which ensured a person-centred approach.

A new home was identified for Hari and a transition plan was developed by the MDT at the weekly meetings. Hari’s package of direct payments continued after his 18th birthday. This support was phased out and the new staff team were introduced:

‘The most successful bit for us was having the new staff team coming to the house and the school to get to know Hari and starting to take the lead in his care while we were in the background to help. I let them take the lead instantly and I backed off. I thought if they are going to be doing it they need to do it. That way I could oversee it and was able to have some control. Hari didn’t want his direct payment carers anymore after he had met the new staff team. That was him showing that he understood he was moving on. Hari built up a relationship with staff and knew what was happening.’

Although a home had been identified for Hari, ongoing environmental adaptations needed to be made before he could move in:

‘When I saw the house I started crying and thought this is nice, this is real. It felt so good knowing that Hari would be living in such nice surroundings.’

‘We had got to the point of exhaustion before Hari was due to move out, there was respite available but we didn’t want to confuse things. I instantly liked the owner of the company which helped.’

‘We didn’t know if the funding had definitely been agreed … even though some furniture had been ordered I still felt like it might not happen, that it would all fall through.’

A date for Hari to move in was agreed and his parents structured a visual schedule and a plan for his first week in his new home. The transition was successful and Hari was happy immediately in his new home:

‘The best bit of moving day was watching him decide where he was going to put his things in his new house. The provider helped with the move, we had a case workshop and there was a good plan of what was going to happen.’

‘I can’t think of anything that went wrong when Hari moved, it all seems too good to be true, it’s like we are waiting for something to go wrong.’

During the interview Hari’s parents reflected on his transition to his new home:

‘I can’t get over that there is no aggression now, he’s so relaxed. Is this my child? I [Hari’s mum] can now spend time with my daughter… I’ve never known that.’

‘Family life is lovely, it’s really relaxed. We have peace of mind knowing that he is so happy… It took us a while to work out that how we were living was not normal. We went to our caravan on the weekend and have been in shops we were never able to go into when Hari was with us. We are enjoying new experiences as a family and have more opportunity to do things that are part of “normal family life” – like the other day we had a takeaway pizza, we wouldn’t have been able to do that before because Hari doesn’t like them.’

‘We have attended a parent’s forum with the company who support Hari, this has been very good. Hari’s sister has more involvement now than when he lived at home.’

A variety of assessments were undertaken in settings with people who knew Hari well. Box 2 outlines outcome measures from those assessments. The results show a significant increase in Hari’s quality of life, increased participation in activities and reduction in frequency and severity of behaviours that challenge.

Box 2.

Clinical outcome measures

Quality of Life Checklist – Carer Version

Based on the Life Experience Checklist (Ager 1990), a local quality of life checklist measures a person’s quality of life across five areas and was designed specifically for people with learning disabilities. At discharge from ICS Hari’s overall scores increased by 27% to 90% indicating a higher quality of life compared with the initial scores

Health of the Nation Outcome Scales for People with Learning Disabilities (HoNOS-LD) ( Roy et al 2002 )

The HoNOS-LD has been adapted specifically for people with learning disabilities and is used to measure change in the areas of adaptive, behavioural, cognitive and psychiatric functioning. Comparing initial and discharge scores, positive change was identified in terms of Hari’s adaptive, behavioural, cognitive and psychiatric functioning

Challenging behaviour interview (CBI) ( Oliver et al 2003 )

The CBI assesses the severity of a range of behaviours that challenge, frequency and duration of behavioural episodes, relevant management strategies and the effects of the behaviour on the individual and others. The CBI enables more detailed assessment of five forms of challenging behaviour; Hari’s parents described self-injurious behaviour, physical aggression, destructive behaviour, stealing and self-induced vomiting as problematic. At discharge the five original behaviours were not reported but two different behaviours were reported: stereotyped behaviours and inappropriate removal of clothing. These behaviours were rated as infrequent and caused no challenge in management. There were no reports of significant behaviours that challenge

The Guernsey community participation and leisure assessment (GCPLA) ( Baker et al 2016 )

The GCPLA is a checklist intended to be used in a semi-structured interview format where a person describes their experiences of community participation and leisure activities. It was completed to measure the frequency of Hari’s participation in various activities across five categories. Discharge assessment scores indicated that Hari was accessing the community, facilities and socialising more often. Engagement in outdoor leisure had significantly increased and his overall activity had doubled

Key points

  • Planning for transition to adult services should begin at age 14

  • Transition plans should reflect each young person’s needs, preferences and wishes

  • Healthcare professionals should strive to share all relevant information with families and young people

Recommendations for practice

The recommendations made are in line with the Health and Care Standards (Welsh Government 2015) and Prudent Healthcare (Welsh Government 2019, Bevan Commission 2019). The principles of prudent healthcare are: co-production, prioritisation of needs and resources, do only what is needed and do no harm, and equality of care using evidence-based practices.

  • 1. Timely transition, time to plan

Evidence and guidance tell us that for transition to be effective it must start from age 14 (NICE 2016). Adult services should be aware of the young people who will transition. If long-term, continuing health needs are identified at age 16, an assessment for CHC should be undertaken.

Better links between adult and child services would allow for early identification of young people who have complex needs. There should be signposting for families at an early point to begin to understand what transition is and what it will mean for them.

  • 2. Safe and effective care

The right services need to be involved at the right time to develop an effective multi-agency transition plan. PBS provides a model that is values-led, person-centred and based on applied behaviour analysis (Allen et al 2005). A robust assessment and understanding of a person’s needs are important to ensure optimal quality of life.

  • 3. Clear, effective communication

Effective communication is essential for optimal transition planning. There needs to be regular communication between professionals, the young person and their family that is accessible and person-centred.

  • 4. Person-centred approach

No two transitions are the same because no two people are the same. Transition plans need to be tailored to the individual’s needs and circumstances. The person’s preferences should be paramount throughout.

  • 5. Co-production

Professionals, the young person and their family should work together in an equal partnership to co-produce a transition plan.

  • 6. Developing resilience

Young people and their families should be supported to share their experiences and knowledge with each other, to develop support networks and community resilience.

  • 7. Local, person-centred service provision

People with learning disabilities should have access to local support and services. Commissioners need to understand future demand and make appropriate plans to provide effective local services.

Although this article has focused on one family’s experiences, the recommendations are applicable to learning disability practice in developing improved pathways for transition for young people with complex needs.

Conclusion

It is important that there is timely, effective multi agency working when supporting young people with learning disabilities through transition. It is vital that evidence-based practice underpins the practice of professionals who are working alongside young people and their support networks. The principles of positive behaviour support can be applied to creatively adapt a young person’s environment to meet their needs and improve quality of life outcomes. Co-production is essential for successful person-centred transition planning. It was important to Hari’s family that they were able to share their story to inform good practice.

References

  1. Ager A (1990) Life Experience Checklist. BILD Publications, Kidderminster.
  2. Allen D, James W, Evans J et al (2005) Positive behavioural support: definition, current status and future directions. Tizard Learning Disability Review. 10, 2, 4-11.
  3. Baker P, Taylor-Roberts L, Jones FW (2016) The Guernsey Community Participation and Leisure Assessment-revised (GCPLA-r) Manual. The Tizard Centre, Canterbury.
  4. Bevan Commission (2019) Prudent Healthcare. http://bevancommission.org/en/prudent-healthcare (Last accessed: 30 October 2019.)
  5. Chamberlain MA, Kent RM (2005) The needs of young people with disabilities in transition from paediatric to adult services. Europa Medicophysica. 41, 2, 111-123.
  6. Clarke S, Sloper P, Moran N et al (2011) Multi-agency transition services: greater collaboration needed to meet the priorities of young disabled people with complex needs as they move into adulthood. Journal of Integrated Care. 19, 5, 30-40. doi: 10.1108/14769011111176734
  7. Fiorentino L, Phillips D, Walker A et al (1998) Leaving paediatrics: the experience of service transition for young disabled people and their family carers. Health and Social Care in the Community. 6, 4, 260-270. doi: 10.1046/j.1365-2524.1998.00124.x
  8. Gittins D, Rose N (2008) An audit of adults with profound and multiple learning disabilities within a West Midlands Community Health Trust – implications for service development. British Journal of Learning Disabilities. 36, 1, 38-47. doi: 10.1111/j.1468-3156.2007.00480.x
  9. Hamdani Y, Jetha A, Norman C (2011) Systems thinking perspectives applied to healthcare transition for youth with disabilities: a paradigm shift for practice, policy and research. Child: Care, Health and Development. 37, 6, 806-814. doi: 10.1111/j.1365-2214.2011.01313.x
  10. Herzer M, Goebel J, Cortina S (2010) Transitioning cognitively impaired young patients with special health needs to adult-oriented care: collaboration between medical providers and pediatric psychologists. Current Opinion in Pediatrics. 22, 5, 668-672. doi: 10.1097/MOP.0b013e32833c3609
  11. Heslop P, Mallett R, Simons K et al (2002) Bridging the Divide at Transition: What Happens for Young People with Learning Difficulties and Their Families? British Institute of Learning Disabilities, Kidderminster.
  12. Holtom D, Lloyd-Jones S, Bowen R et al (2012) The Costs and Benefits of Transition Key Working: An Analysis of Five Pilot Projects. Welsh Government, Cardiff.
  13. Hudson B (2003) From adolescence to young adulthood: the partnership challenge for learning disability services in England. Disability & Society. 18, 3, 259-276. doi: 10.1080/0968759032000052851
  14. Hudson B (2006) Making and missing connections: learning disability services and the transition from adolescence to adulthood. Disability & Society. 21, 1, 47-60. doi: 10.1080/09687590500375366
  15. Hurrell C (2019) Defining the Optimal Model for Transition from Child to Adult Provision for Young People With Disabilities and/or Developmental Difficulties in Gwent. http://sparkleappeal.org/ckfinder/userfiles/files/transition%20report%20v12_01_08_19(1).pdf (Last accessed: 30 October 2019.)
  16. Kraus de Camargo O (2011) Systems of care: transition from the bio-psycho-social perspective of the International Classification of Functioning, Disability and Health. Child: Care, Health and Development. 37, 6, 792-799. doi: 10.1111/j.1365-2214.2011.01323.x
  17. National Institute for Health and Care Excellence (2016) Transition from Children’s to Adults’ Services for Young People Using Health or Social Care Services. NICE guideline 43. NICE, London.
  18. Oliver C, McClintock K, Hall S et al (2003) Assessing the severity of challenging behaviour: psychometric properties of the challenging behaviour interview. Journal of Applied Research in Intellectual Disabilities. 16, 1, 53-61.
  19. Roy A, Matthews H, Clifford P et al (2002) Health of the Nation Outcome Scales for People with Learning Disabilities (HoNOS-LD). British Journal of Psychiatry. 180, 1, 61-66. doi: 10.1192/bjp.180.1.61
  20. Welsh Government (2014) Continuing NHS Healthcare: The National Framework for Implementation in Wales. Welsh Government, Cardiff. https://gov.wales/sites/default/files/publications/2019-04/continuing-nhs-healthcare-the-national-framework-for-implementation-in-wales.pdf (Last accessed: 4 January 2021.)
  21. Welsh Government (2015) Health and Care Standards. Welsh Government, Cardiff.
  22. Welsh Government (2019) Prudent Healthcare: Securing Health and Well-being for Future Generations. Welsh Government, Cardiff. https://gov.wales/sites/default/files/publications/2019-04/securing-health-and-well-being-for-future-generations.pdf (Last accessed: 4 January 2021.)

Share this page

Related articles

Nia’s story … continued
This week I experienced one of my proudest moments – my...

a to z of autistic spectrum disorder
For the purpose of this poster the umbrella term of ASD has...

a tool for increasing participation among pupils with autistic spectrum disorders
The Sunfield Assessment and Outreach Service (SAOS) provides...

Care planning for children in educational settings
Joanne Hammond describes how, on a student nurse placement...

A student’s reflection on a day service placement
The modernisation of day services is being promoted by the...