How effective collaboration between services can make all the difference to young people with SEN and their families
Good collaborative practice works. The experience of the Early Support Programme has shown that keeping the child and family’s priorities at the centre, and working as a team to produce a single plan encompassing all disciplines, achieves great results for everyone concerned. The child benefits from getting the right services at the right time; family members have less stress, as their key worker ensures coordination of services, clear information and a single line of communication; professionals benefit from clarity of roles and avoidance of duplication of effort. It sounds simple, and essentially it is. This same approach works wonders with children and young people of all ages, and indeed with people of any age dealing with a range of services.
Aiming High for Disabled Children (AHDC) had many strands including early support, short-breaks, transition, and individual budgets. The SEN Green Paper of 2011 rightly brought all these strands together into one approach to SEN and disability (based on the early support model) and the Children and Families Bill is set to enshrine these ideas in law.
One of the Government’s fundamental stated aims is to empower families and disabled young people, giving them more choice and control over their lives. This is not a new approach; families and professionals around the country have been developing it for years, refining it and adapting it to individual needs. Each child is unique and there is no “right way” to do things. Similarly, each plan will be different in content and perhaps in format, reflecting the individual or group it is serving. The crucial elements here are a genuine desire to work together, empowerment of families by provision of clear information and respecting their views, and an ability to work openly to find creative and innovative solutions. The following examples illustrate how these principles can be put into practice.
Mohammed and Altaf’s story
Brothers Mohammed and Altaf, aged eight and seven, had severe learning difficulties and autism and neither had any speech. In many ways, though, they were as different as chalk and cheese. Mohammed was lithe and active and would climb anything and run anywhere, regardless of danger. To keep him safe, the windows in the house had restrainers and the garden fence had been built up so he couldn’t climb over it. He rarely slept for more than half an hour at a time and would move around and vocalise while awake, so his mother Rahima had him in her room to enable Mohammed to sleep.
Altaf loved to eat, whether food or other substances, and the garden had been concreted over to prevent him eating soil and stones. He was substantially overweight and would sit down and refuse to move, sometimes while crossing a road. Rahima was exhausted and at her wits end, despite their excellent school and the 24 days a year overnight respite and some holiday play days provided by social care. Short-break funds allowed the children to stay at school for an after school club once a week, and some Saturdays at an ASD-specific play scheme.
Their social worker became their key worker and in meetings with Rahima, the boys’ teachers, therapists and the school nurse a single plan was devised to meet their needs and Rahima’s. The social care funds were provided as an individual budget and pooled with the short-break funds. Rahima chose to reduce the overnight respite to 12 days a year (one night a month), leaving an additional £12,000 – sufficient funds for the boys to attend the playscheme every Saturday and for a sitter to be found for one overnight a week. The boys attended the after school club on different nights, and a worker from an autism outreach service supported Rahima to develop strategies for managing the boys’ behaviour and sleep patterns at home.
The occupational therapy service agreed to contribute half the cost of a soft surface in the garden; the remaining 50 per cent and play equipment were bought from the individual budgets. The results of this joint working were better health, less stress, better progress and a much happier family, who can now go out together on excursions.
Raphael is a delightful five-year-old boy born into an orthodox Jewish family who delighted in his intelligence, excellent language and sweet nature. When he was three and suffering with pains in his leg, he was diagnosed with Duchenne muscular dystrophy, a progressive disease which results in muscle degeneration, difficulty walking and breathing.
At first, the family found the diagnosis difficult to accept, but a year later Raphael started having frequent seizures and was put on medication, which only had a limited impact on the seizures. His behaviour changed: he became very challenging and he had difficulty expressing himself. At school, he had frequent tantrums and lashed out at other children. His learning plateaued and a widening gap appeared between his attainment and that of his peers.
The school referred Raphael to a local speech and language therapist who reported that she could not assess him due to his behavioural issues, and closed the case. The school felt that they could not manage his behaviour or learning, and because the school was in a different local authority to the family home, little support was offered.
His family applied for a statement of SEN and a draft statement was drawn up offering funding for a full-time teaching assistant to support Raphael in class. Raphael’s parents were unhappy with this and sought advice from an independent advocacy service. The school and family requested that he had funding for a specialist teacher or specialist teaching assistant and were supported by the advocacy service who suggested going to SEND tribunal. At this point, the specialist advisory teacher for physical disability from the home borough became involved and visited the school. After observation and some intervention with Raphael, and meetings with the teachers and Raphael’s parents, it was agreed that a team around the child (TAC) meeting would be held with the class teacher, SENCO, parents, specialist teacher and the advocate to discuss a way forward. The specialist teacher agreed to be the key worker and coordinate the meeting.
At the meeting, it was agreed that that the key worker would make new referrals to speech and language therapy and occupational therapy and liaise with the doctors at Great Ormond Street Hospital. A Jewish voluntary organisation was contacted to provide the therapy assessments quickly, and a date was set for another meeting when all reports were in. This date was postponed by a couple of weeks, as Raphael had a three-day assessment of his seizures at a specialist centre, whose link advisor accepted an invitation to the meeting.
With the team in place, there was now a much clearer picture of Raphael’s needs and a single plan was drawn up including support at school, speech and language therapy, occupational therapy focusing on sensory integration, and sessions at a centre for cognitive development. The local authority agreed to add all this to the statement with all the evidence provided. Through attending all sessions with Raphael and continued links with the specialist teacher, the teaching assistant recruited had a firm grasp of Raphael’s needs and was able to support him well at school. His behaviour improved, the slide in his abilities levelled out and he began once more to make progress. The family and school felt they had been heard and were delighted at what had been achieved through truly collaborative working.
Grace has autism. When she was 16 and attending a special school, her behaviour could be challenging at times, although she hadn’t received social work support as she had not been considered “disabled enough” when first referred whilst at primary school. Grace’s progress was limited at school and her parents were becoming increasingly stressed because of her demanding behaviour which meant that they could never go out.
When she entered sixth form, she began an ASDAN curriculum focusing on self-help and independence skills alongside basic communication, literacy and numeracy. The school again referred her to social care and she was offered an individual budget and also given access to short-break funding. Family, school and friends helped Grace to put together a profile detailing her likes, dislikes and aims. During a person-centred planning meeting, including social care, school and the family, it was decided to merge the two budgets and provide an “extended school curriculum”. A single plan was drawn up based on the family’s priorities and educational objectives. These included Grace being able to shower, dress and undress independently, being able to recount events, and learning to travel independently on known bus routes. They also included basic money handling and development of an exercise regime to reduce her weight and increase fitness.
All these skills were practised during the school day, in the evenings and at weekends. It was a 24-hour curriculum to match what might be provided in a residential setting. A teaching assistant, Josie, experienced in working with young people on the autistic spectrum arrived at school shortly before the end of the school day every day, and helped Grace to write a home/school diary of what she had done that day, illustrated by photos taken by school staff. Josie and Grace then travelled to a different place every night of the week, with activities chosen largely by Grace – including swimming, where she could practice self-help skills, and a specialised youth club where she could learn to interact appropriately out of school.
Grace was able to show her parents her communication book and tell them about the day’s events before Josie left. This joined-up way of working provided a short-break for Grace and her parents, allowing them to spend quality time with her sister, whilst building Grace’s independence and skills at a far faster rate than could have been achieved at school alone.
Charlotte is a bubbly 15-year-old girl with profound and multiple learning difficulties and complex health needs. She attends a special school where her adoptive parents are active members of the parents’ group. Although they were very happy with the school, they never had a break from caring as local services could not safely manage Charlotte’s needs. They were offered overnight respite care from the social work team but did not want to send their daughter away to be cared for by strangers.
When short-break money became available, they were convinced that Charlotte would again be left out as there was nothing suitable for her. The Borough had organised an individualised short-break programme and the coordinator (a consultant working independently who had wide-ranging experience of programmes in other areas) had a joint meeting with the parents, local voluntary agencies, social workers, schools and the manager of the continuing care team. It was clear at this meeting that funding was available from the social work team budget and the short-break budget, but that local agencies did not feel confident to arrange short-breaks for this group.
Following the meeting, the coordinator contacted a voluntary agency from a neighbouring borough, which had extensive experience of arranging and managing short-breaks for children with the most complex needs, who agreed to work in tandem with local agencies. A holiday was organised to an accessible outdoor activity centre in Devon and a meeting was held to tell parents about the opportunity. Far from leaping at the chance, Charlotte’s father and others voiced great concerns about letting their children go alone, even with experienced carers; so the director of the voluntary agency asked if the parents would like to go along too. Eventually, and with much preparation, 13 children – with Charlotte’s and three other parents, two siblings and 15 carers – went to the centre for a four-day break. The trip was a huge success.
Once again, a joint plan, drawn up by a team consisting of a consultant, social workers, the school, parents, health, and local, regional and national voluntary agencies, achieved a result that exceeded everyone’s expectations and made a real difference to the lives of a vulnerable young people and their families.
Barbara Ball is a Director of ASEND, an SEN and disability assessment, advice and support service based in London: