Despite good practice guidelines having been available for some years, transition from children’s to adult social services can still be a traumatic time for young people with learning disabilities and their families. Editor Dan Parton reports news in depth
Deborah Meldrew is worried her son, who has autism and a severe language disorder, turns 18 in December and she is unsure what social care provision will be available to him from his local authority in South London after his birthday.
For instance, her son attends a respite service for under 18s. “You would think that by October [at the time of writing] I would have heard from the local council telling me my son is going to have to leave this service and they will be in touch as to what he can do afterwards,” she says. “But I’ve heard nothing.”
Indeed, the only reason she knows that the service ends when a young person turns 18 is that one of her elder sons attended the same service and had to leave once he had had his 18th birthday.
But this is not the only worry for Meldrew, who is a Carer’s UK ambassador. While her son attends a special school, he is also undertaking a year-long level 1 IT course in a mainstream college. “He has support for one day extra so he can speak to the counsellor as he finds it difficult to confide and ask for help,” she says. “His annual review comes up in a month at the school, and that’s when he’ll say goodbye to that service.”
She is also concerned that, in general, support for her son will drop off once he enters adult services because he will not meet the eligibility criteria – which are different to children’s services – as he is at the more high-functioning end of the spectrum. This happened to both Meldrew’s elder sons, who have Asperger’s syndrome, when they made the transition from children’s to adult services. “The more able [your child is], the less help they get,” she says.
“There is nothing for a parent from a local authority saying ‘your son is now an adult, he will no longer be entitled to this, this and this’ so the onus is then on us to find out what is happening.
“One thing that really does scare me is that you don’t know what the future holds,” she says. Meldrew is not alone. Linda Looney, vice principal of Ambitious College, a further education college focusing on learners with complex autism aged 16-25, agrees that there are often problems with the transition process.
“We [Ambitious College] work with a number of families and every single one has been adversely affected by transition in some shape or form, and find it an anxious and stressful period,” she says. “It is a postcode lottery. It tends to be where you are, which local authority you are under, which school you attend and how well resourced or what services those organisations provide which will ultimately affect how well or not the transition will go.”
There are a number of common problems that young people with learning disabilities and their parents face, such as having to work with a new set of professionals, she adds. “A lot of those families have been in children’s services to 19, so they are settled and comfortable in that world. Transition means a move to adult services and new professionals and relationship building. In our experience that relationship building can come with a lack of practical understanding and exposure to that person – they know the person from a piece of paper, as opposed to having met them and developed an understanding of them that way.
“There is also new documentation – there are different assessments for adult services. Sometimes it can be ‘death by assessment’ because you have to be assessed for every single place you’re interested in potentially going to.”
But perhaps one of the biggest problems is that, all too often, transition is left to the last minute. While good practice states that transition planning should begin in year 9 of school – about age 14 – this often doesn’t happen and it tends to be thought about in the young person’s final academic year.
“This means families and learners don’t have time to get their head around all those changes and feel prepared and equipped to make the change,” she says. “So you see a number of responses from families; some families feel completely overwhelmed by it all and bury their heads in the sand and hope it will go away. Other families get really proactive and their whole life becomes about trying to deal with transition.”
An added complication to the process is the recently-passed Children and Families Act. “Families, local authorities, education providers etc are all still trying to get their heads around it and untangle it and get to grips with what it means,” says Looney.
While this is happening, it is creating practical problems for families. “For example, who is funding [a young person’s] place in Ambitious College? There are a lot of discussions within local authorities trying to get to grips with issues like that, which causes delays on placements and therefore increases family anxiety.”
Other problems with transition were highlighted a report published in June by health and social care regulator the Care Quality Commission (CQC), which found that some children’s services stop before their equivalent adult services start, that families are confused and distressed by the lack of information and support given to them, and that generally, people’s experiences of this process vary across England.
At the time, Professor Steve Field, chief inspector of general practice at the CQC, was critical: “Despite plenty of guidance being available on what good transition planning and commissioning should look like, there continues to be a significant shortfall between policy and practice. There is no excuse for people not receiving the care they need.
“It is unacceptable that young people and their families are being excluded from planning and decision-making about their care and for them to be without essential services or equipment temporarily, while arrangements are resolved.
“While our review found many committed professionals who provide excellent care, there needs to be a system-wide change, with commissioners and providers of health and social care working together at every level.”
As the CQC mentioned, guidelines and good practice is out there. For Amie Dobinson, a development coordinator at service provider United Response, there are several key things that help to make the transition process as smooth as possible.
“Early planning is key, as is having a range of options and opportunities identified early on. I attend transition events in local schools where many providers and colleges have stands advertising their services for school leavers. I am seeing significant numbers of parents of younger children in years 8 and 9 coming to these events as they are worried for the future.
“In terms of the transition process, parents have said they value communication most – the more the better from local authorities, professionals, and especially from other parent groups who have gone through the transition process themselves. There also needs to be better communication between children’s and adult services.There was a case in one local authority where children’s and adult social workers sat opposite each other but because they were in different services they weren’t communicating at all. Having a transition coordinator or someone who can help smooth the jump between the two services can be key in helping communication between the services.
“Co-production is also key, working with families and getting good circles of support around that young person, again from an early age. Transition plans need to be person-centred and outcome focused – I think this is essential more than anything else – what are the main goals for this person, what do they want to achieve, what do they want to do after school and college? Plans need to start with the end in mind.”
Dobinson adds that outcomes need to be set for the college courses that people with learning disabilities can attend. “Sometimes young people were going to college to do course after course but weren’t progressing at all. There needs to be something to improve standards, making sure outcomes are set and courses achieve those outcomes. In order for young people to achieve their goals they need to know what they are and what direction they want to go in. There needs to be a holistic plan that covers every area of the child’s life.”
As Dobinson shows – and the CQC report emphasised – the good practice is out there, but it just has to be applied. However, there is no sign of the system wide-change that the CQC called for earlier in the year.
“Expectations are a lot higher among young people and their families now and rightly so… it is about making sure that all the services out there from education to employment are geared up to support these increased expectations and ambitions of young people.”
While Dobinson believes services are getting better – and that the Children and Families Act could have a positive influence in time – there is still a long way to go to ensure everyone has a positive experience of transition.