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).

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.

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.

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.

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.

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.

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.

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

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

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.