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The Big Debate - Transition Between Children and Adult Services

I am a solicitor specialising in assisting clients who have suffered severe injuries in accidents to recover damages.

I recently attended a thought provoking and informative event ‘The Big Debate’ at Shrewsbury Football Ground. It was a workshop event aimed at clients, parents, carers and professionals, who had an interest in the transition from childhood to adult for disabled children and young people.

The Care Act

The event also addressed the impact of the new Care Act. The aim of the event was to help shape and inform future development of services, by ensuring that the feedback from the Big Debate event is addressed and actioned.

Gill Edmunds and Jackie Jeffrey spoke of the services offered by The Community Advice and Advocacy Network (CAAN) for adults and Shropshire Information, Advice and Support Services (IASS) for young people aged 0 – 25, as well as for parents/carers.

CAAN delivers information, advice and advocacy services for adults on behalf of Shropshire Council. They work with seven partners; these being Citizen Advice Bureau, Peer Counselling and Advocacy Service (PCAS), Mayfair Community Centre, A4U, OSCA Citizen Advocacy, AGE UK and Taking Part.

IASS, formerly known as the Parent Partnership Service (PPS), provides free, confidential and impartial information, advice and support regarding special educational needs and disabilities, including health and social care.

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The speakers discussed issues that arose out of the transition from children to adult services and expressed that the organisations can be a voice as well as provide support. The group wished to stand at a strategic level in order to explain where the feelings are with regards services and they need some case studies.

Zara Bowden, a parent carer of two children, one with cerebral palsy, co-Chair of Parent and Carer Council and Local Officer Co-ordinator for Children’s Special Educational Needs and Disability (SEND) Services at Shropshire Council, gave an enlightening presentation regarding the services in Shropshire from a parent carer’s perspective. She discussed the daily challenges a parent carer faced with regards their children.

An unexpected life event

As part of my practice I come across cases involving children who have suffered very severe injuries as a result of many types of accidents. A serious accident is an unexpected life event, which turns the lives of those involved upside down. It resonated with me that parents of the children for whom I act are thrown into this new role as parent carer. They often become the key worker engaging with all the involved parties. Zara talked about new expectations from others as to how to behave, how to manage, and that parent carers are not just mum or dad to their children, but they are mum or dad to a host of professionals who can forget the parent carer is still a person in their own right. She felt the system did not recognise them as professional parent carers. Again, it resonated with me that this is a scary time for parents who are simply thrust into this situation.

Zara went on to outline that services are not as effective as they should be, and that too many services are only offered when people are at a point of crisis. She said she felt, and I agreed, that services should not be fire-fighting, and parents should not be warriors. Often information can be obtained too late, there is not enough planning and regularly service providers deal with what is on their desk that day, which is usually having to deal with some other crisis.

In particular, she addressed the difficulties which arise with transition from child to adult services. There was experience in the room of people having had quite a lot of support from children services, but when they reached the age of 18 they were simply dropped. Zara felt the transition is a massive stage and that there should be further education, health and social care planning carried out well in advance of the transition date, in terms of years rather than weeks or just a month. A further problem is that services which may be available in childhood may not be available for adults.

A lack of trust in the system

One issue I identified with, through my own practice, is a lack of trust in the system and the carers. When I act for a child in a brain injury case, one of the discussions we often have is about the parent going back to being a parent, rather than becoming a parent carer for life. Part of this process involves trust in the people who would take over the caring aspect from the parent, and this was identified by Zara.

The Children and Families Act identifies that children’s services should continue until the appropriate adult service is identified. There should be an expectation of communication and sharing of information between adult and children services, so that they have the full picture. Both services should be involved and communicated with throughout the transition process, and parents should have a say in the welfare of their children as it is parents who have the understanding of their child’s needs the most. The aim should be for a smooth and successful process, and for the children to be given the opportunity to develop their independence, meet their potential and thrive in their chosen pathway. She went on to emphasise the importance of everyone working together to achieve more.

Sharing experiences

Each table of attendees then discussed the presentations to share their experiences and make suggestions as to what might help. A major concern of the group I was with was the lack of one person to lead and co-ordinate. If I am acting for a person with a serious brain injury one of the most important roles in supporting that person is that of a Case Manager.

The Case Manager advocates for the person, and will put together any necessary support, such as from a buddy/support worker, or from therapy services such as occupational therapy, physiotherapy, neuropsychology and speech and language therapy. The Case Manager will liaise with family, employers, the person themselves, State Agencies, together with the support workers and therapists. With State services this was not the experience of those I spoke with but all identified there was a need to have one person in control, and to whom they could refer their concerns. I was advised that in years gone by social workers might have performed this role, but in times of austerity this is no longer the case. Even purely from a cost point of view, surely there needs to be proper direction and the co-ordination of services by one person to ensure best value is obtained.

My group also talked about the lack of continuity. Instead of having an ongoing relationship with say a Case Manager, Social Services would become involved, sort out whatever the crisis was and then close the file rather than having continuity and future planning. They also talked about lack of involvement in the process of recruiting carers.

Presentations were then provided by Neil Evans from Shropshire County Council and Neil Davies, Head of Court of Protection at Lanyon Bowdler, with respect to the implementation of The Care Act and I will shortly be posting a separate blog entitled The Big Debate – The Care Act 2014.