Change that leads to better lives

Supporting a better path to adult life for young people with additional needs

Alice recently emailed us about her son who has Asperger’s. At our request she has written a blog to highlight some of the challenges her son and her family have faced over the years.

Alice’s story echoes our own view on why we still have a long way to go to improve life outcomes for young people with additional needs

Alice’s Story:

It is almost a year since our 17-year-old son with Asperger’s Syndrome signed himself into Care. He began running away from home at 16 for reasons he could not explain, and we had arranged for many fresh starts for him living with family members on both sides of his family in an attempt to keep him safe.

Each fresh start culminated in a crisis when he felt a compulsion to leave and no one around him knew why or how to help. Child and Adolescent Mental Health Services (CAMHS) advice when available made no difference. The day he entered the Care system was the first day he appeared on the radar of our borough’s Children’s Department. This after yet another crisis. By then he had run out of family members he would stay with and had been under CAMHS care for six months.

When I managed to speak to his CAMHS consultant later that day, he explained that within Care, there would be a focus on a coordinated package of health and social care support for our son, something he clearly needed.

I cannot describe the anguish of parting with our child in this way – knowing his largely hidden vulnerabilities and trusting the Care system to understand and support him. He on the other hand was delighted and when given the choice whether to ‘share’ information with his parents or not, chose not to. Within weeks he had cut ties with all his family and refused to take birthday cards, presents or visits. He had cast himself adrift without any links to his past.

How many autistic kids/young people are in Care? No-one really knows because health checks for disabilities for children in Care are so poor. Even with these limited health checks almost two thirds of looked-after-children have been identified as having some kind of special educational need and children in Care are almost four times more likely to be autistic than their peers.

A year later, our son is being supported by Social Care living in a semi-independent unit out of borough. We understand from the very little we are told that he lives the majority of his life in his bedroom and will not allow anyone into it. He has not met a mental health professional since entering Care and has not reconnected with any of his family. He has had three successive social workers with significant input from two others. We have never been given any details of the autism training of any of the people who support him and there is no requirement that they have any experience or training in supporting autistic young people like him. No-one provides independent oversight of his Care package. No team within the Local Authority believes he meets their criteria for Care provision post 21.

He is lost to us, but safe, and this is our consolation. He is still young and he is free – so many other autistic young adults in Care, particularly boys with ‘conduct disorders’ and ‘emotional difficulties’ are locked up either in Young Offenders Institutions or Mental Health Units. I can only imagine what is happening to autistic girls in the Care system given the extreme naiveté that autism brings. The care system has an inability to get to grips with what it means to be autistic and how best to support autistic kids in Care. The last time I saw my son’s CAMHS consultant at the end of a social care meeting he was visibly upset and apologised.

A year on, I now work to raise awareness of the needs of children in Care with unseen disabilities in a system designed to rescue children from abuse and neglect. I began by looking at autism as a distinct condition but as I learn more, I have begun to see autism as a marker for clusters of unseen neuro- disabilities including ADHD and speech and language difficulties. Despite the best efforts of the very many people who work in the Care system, I believe that it fails to identify and support children within it with these disabilities and is delivering a different type of neglect to the one these children/young people were rescued from. This is a very hard message to get across in every sense.

It is a good time to be working to raise awareness as the proposed Children and Social Work Bill is going through the Lords. One proposed Amendment (Amendment 57 c) identifies Children with these disabilities as a significant group within care and sets out a framework for identification and support.

I believe this amendment, if passed, has the power to be transformational. For the first time it identifies children/young people with neuro-disabilities as a distinct group within Care with distinct healthcare and support needs. This may or may not include tailored mental health support and/or tailored speech and language support but it will not go through without a groundswell of support.

To read, comment on or support this amendment, click here

To read the Bill, follow this link

NDTi’s viewpoint:

So what is the problem we are trying to fix? Despite recent changes in legislation, in the Care Act, The Children and Families Act and recent Children’s Mental Health Reform sadly we still have a long way to go to ensure children and young people receive the right support at the right time. There is also the Social Care Bill that Alice mentions as well as a whole raft of NHS England programmes to support and influence change as identified in its Five Year Forward plan. However the system is still fragmented. Professionals still work in silos across their departments and agencies, and even, within departments.

So why is this? We hear blame from adult services directed at children’s services. Why, because children’s services have made plans for children without thinking of the long term impact or cost after the young person turns 18. We also frequently hear that support is not joined up across education, health and care particularly in these critical times of transition.

Alice’s story describes a system that isn’t coordinated. It sadly waits for (or forces) someone to be in a crisis situation before support is available, regardless of their need. It doesn’t seem to matter if they’re known to have mental ill health, or are a young offender, or are being looked after outside of their family home.

Through our work with the Department for Education in partnership with the Council for Disabled Children NDTi have been providing support to regions across the country through the Preparing for Adulthood Programme since 2011. Whilst the focus has been on children and young people with Special Educational Needs and Disabilities, there are some key principles that are relevant for all vulnerable children and young people:

  • Start with a person centred approach – having the child or young person and their family at the centre of assessment and planning to really understand what is both important to them and for them. The use of personal budgets can provide more creative support.
  • Ensure there is good, up to date and accessible information for children, young people and their families – where SEND is concerned the Local Offer is designed for this purpose.
  • Just enough support – support for families early enough to avoid a crisis situation and in a way that supports family resilience and inclusion in their community. The SEND code talks about Preparing for Adulthood from the earliest years, to raise aspirations for young people so that they can have a positive adult life, with employment, independent living, good health, friends and relationships and to be connected to their community.
  • Joint commissioning and integrated working – services that plan together, and commissioning based on local needs and priorities to create a “tell it once” environment for families, are more likely to commission the right services and provide value for money.
  • Think about support for needs not labels children and young people and their families are not neatly labelled – and why should they be? A young person with SEND could easily be Looked After, have mental ill health and be a young offender, and if they are coming up to Transition age they could potentially straddle a number of services. Having a key person to coordinate this will help to ensure support is joined up and prevent duplication. Starting with a shared vision with families, a number of local authorities are looking at how they can join their services up across education, health and care to create a 0-25 service.
  • Have an outcomes approach thinking about outcomes helps with planning and setting goals that make sense for everybody, and needs to start with aspirations. Outcomes for young people approaching their adult life are designed around work, friends and relationships, having somewhere to live, being part of your community and having good health.

NDTi are working with a number of local authorities to support them with the reforms. For further information about the work we do please contact the Children and Young People’s lead, Julie Pointer.

For more information about the Preparing for Adulthood work that we do please have a look at the project website.

Subscribe to NDTi News

Thank you for taking the time to subscribe.