What support do families of children and young people with special needs and/or disabilities need and how do I know?

Advocacy, Key working, Education, Health and Social Care co-ordinators, Independent supporters, Lead Professionals, Parent Partnership Services, there are a plethora of support services out there.

The terminology is rampant, but what exactly are these roles, how do they fit together and why does it have to be so confusing?

Definitions:

From the Government’s stand point, independent supporters are there to offer advice and support to children, young people and their families, going through the statutory Education, health and social care (EHC) planning and assessment process, but what happens after an EHC plan is gained is not clear. This role is in addition to Local Authority Parent Partnership services.

But, this slightly confusing and chaotic support system is at odds with the requirement for Local Authorities to provide a ‘single point of access’ to advice, information and support (page 22, Section 3:3 Draft Code of Practice), something which many parents welcomed.

Practical support for parents & carers:

So what support is it that parents/carers of children and young people with Special Educational Needs and Disabilities (SEND) need?

You would have thought that with all these ‘support’ services, families would be spoilt for choice, but in actual fact what works well is to have access to a single person or team, someone who understand the unique family circumstances and has a trusting and transparent relationship with the family.

The skills, knowledge and abilities of this person or team are wide ranging and include - emotional and practical support, coordination, being the point of contact not just for the family but also for professionals, along with knowledge of both local and national policies and detailed understanding of The Local Offer and how what is on offer could benefit the family you are working with.

There are obviously more critical times, at which a family may need more support than at others, diagnosis and transition being two such examples, but also may include life events such as the birth of siblings. The ultimate goal has to be that this single contact would eventually have a reduced input with the family, as the family would feel confident and empowered to be able to work through any issues they may encounter independently.

It would appear from all the collated evidence and research into this area that the message from parents is clear: the need for a consistent point of contact, for a person who understands their individual circumstances and can walk with them when they need support.

I know this as I am one of those parents, whose life has at least 35 different agencies, professionals and/or services in it, due to the complex needs of my daughter. But I am fortunate enough to have 18 years’ experience as a special educational needs coordinator, with all the skills, knowledge and attributes that brings. There are times, though when I know we would have benefitted from a keyworker/advocate/partner/supporter, but have been reluctant to engage with the current services on offer.  All too often, families can find themselves being cases to be processed or referred on, rather than helped to find a better way forward.

Wraparound Partnership was born out of this confusion and is the only service of its kind in England.

Elizabeth Stanley
4 April 2014

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