Special report: Lincolnshire Parent Carer Forum - parent power that changed the law

Moreover, giving them and their families a voice is key to ensuring that it is the right help, and this is where the Lincolnshire Parent Carer Forum (LPCF) comes in.

Founded in 2006, the independent charity is run by parent carers, for parent carers, who listen to their views and concerns and then present these directly to the service providers, including the county council, the NHS, and all the way up to the policy makers in government.

Their input has resulted in a massive shift in attitude towards the role parents can play, and indeed a change in the law, as the Children and Families Act 2014 set out a new model for SEND support that puts families at the heart of the decision-making.

Their achievements were celebrated at LPCF’s 10th anniversary event, held in Grantham’s Guildhall this month. Addressing a packed room of parent carers, chair of LPCF Thérèse Lord said: “Our work is all about representation. We represent you – you are the forum, and we take what you say and we go to our strategic meetings where things are being shaped.”

By holding events such as regular coffee mornings, one-to-one meetings and workshops, as well as undertaking surveys and compiling a database of more than 2,100 parent carers in Lincolnshire, LPCF’s trained volunteers are able to both hear from families, and signpost them to where extra help is available.

They have also built up a network of relevant professionals and charities in the county, many of whom had stands at the anniversary gathering with information for attendees.

LPCF’s events also provide an opportunity for parent carers to meet those in similar situations to themselves. Chair Thérèse, who is herself the mother of two teenagers with autism, added: “We do give peer support, as we are parent carers ourselves, juggling our own children’s special needs. There’s an empathy there that is completely unique.”

Recalling the tough challenges she and fellow original LPCF member Coralie Cross faced in the forum’s early years, Thérèse said: “We heard things like ‘they’re just parents’, but then these ‘just parents’ came up with wonderful ideas and they thought better.”

Indeed, the LPCF, now part of the subsequently formed National Network of Parent Carer Forums (NNPCF), has got the ears of government ministers.

Attending LPCF’s anniversary celebrations, children and families minister Edward Timpson said: “I’ve found parent carer forums to be invaluable. The feedback we get from them helps table our work and channel our resources into the most effective areas, so that they are doing the right things that make a difference.

“In the past what we found that for too many people it was a bit of a battle going on and that doesn’t serve anyone’s interests.

“You’ve got to have families right at the centre. Every parent I’ve spoken to, every charity that made representations to me, made it clear that the one thing that really makes a difference, apart from turning a very labyrinthine system into something more easily understandable, easier to navigate yourselves around and easier to access, was to make sure that parents and the children and young people themselves were helping shape the system and had the control and choice to make decisions on behalf of them and their family.”

His speech followed the announcement that for 2016-17, the Department for Education will provide £2.3 million of funding to parent carer forums, as well as £35.8 million to help local authorities implement the new Education, Health and Care (EHC) plans, which replaced statements of special educational needs (SEN) as part of the 2014 Act.

Sheridan Dodsworth, children’s services manager at Lincolnshire County Council, which has been allocated £477,599 of this funding, explains: “Statements of SEN were developed from written assessments, reports and other documents produced by professionals involved with a young person.

“The production of a Statement of SEN was a largely paper-driven and bureaucratic process. EHC plans place the young person at the centre of the process who, together with their parents or carers, can provide important information and views about themselves. Face-to-face meetings are an essential aspect of developing the young person’s EHC plan and each child has an allocated SEND caseworker to support that process.”

Asked how the change to EHC is affecting the families, Thérèse said: “Parents did want a change, but there has been a mixed response, and not everyone has been transferred to the EHC yet. But we’re being optimistic.

“The law did need changing and the situation is better than it was. The EHCs should solve a lot of problems and should be better because they are family-centred, and children and young people-centred. But there is still a long way to go.”

* For more information on LPCF, visit www.lincspcf.org.uk

* One parent carer’s story...

Alice Husband is mum to Jake, 11, and 15-year-old Oli, who has ADHD and Asperger’s/high-functioning autism. She is full of praise for the LPCF. “I was one of the first members, and it’s great,” she said. “You get to meet up with other parents, talk through your experiences and share information which might help each other. They let us know when decisions are being made which might affect us. I’ve been able to speak at county council meetings which I wouldn’t have known about otherwise.”

The charity has also supported Ms Husband, of Tydd St Mary, through very difficult times, including having to fight the bedroom tax and the death of her third child Seth. Following Oli’s exclusion from school, aged four, he is now at a specialist school that understands his needs, and is helping him prepare for his GCSEs. “I’m very lucky having found this school,” she said. “But there is still a national problem of schools not having enough provision for children who are higher functioning.”

She hopes that with the right support, Oli will achieve his ambition to make computer games. “He is extremely intelligent, but the problem is getting him to channel it in the right way. The forum also understands the impact it can have on siblings. They provide a lot of things which professionals are paid to do, but that they do for free.”

* ‘It is a worrying time for us’

The LPCF fears it will no longer receive its annual funding of £40,000 from the county council, as the authority looks to consolidate support for carers of adults, children and young people into one provider, with the contract currently out to tender for bids.

Thérèse said: “It is a very worrying time for us. If we are successful as part of a bid then we will continue as usual, but plan B, if we don’t get the funding, is that we will have to cut our cloth accordingly, because we wont have the same resources.”

Debbie Barnes, Lincolnshire County Council’s director of children’s services, said: “There is no reduction in funding for parent carers going forward. As part of a new parents commissioning service, we are currently out to tender for a single provider of support for carers of all ages, excluding young carers support which is delivered in-house.

“This contract could be made up of a number of lead bidders so the LPCF, like all other providers, are welcome to put forward their bid.”

The announcement on the chosen provider is due to be made at the beginning of March.

* Visit showcases college’s centre

After hearing such positive feedback from families, LPCF arranged for a visit to Grantham College’s day break provision as part of their anniversary celebrations.

The college’s Learning Development Centre staff and clients welcomed Edward Timpson and Mayor of Grantham, Jacky Smith into their purpose-built learning development centre, to showcase their day provision for young adults, many of whom are current or past students at the college.

The minister enjoyed helping day break regular Tom Warner make a Valentine’s card (pictured above), and didn’t mind at all at being covered in glitter, before chilling out in the sensory room with clients with more complex needs. This was followed by a visit to the specially adapted kitchen, where Mr Timpson sampled some of the delicious ‘thumb-print’ biscuits the clients were making.

For details on the learning opportunities at the Learning Development Centre, call 0800 0521 577, email [email protected], or visit www.grantham.ac.uk