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Written evidence from Contact

 

 

  1. Parent carer forums are specified with in Section 3.17 of the SEND Code of Practice;  Local authorities, CCG’s and NHSE must develop effective ways of harnessing the views of their local communities so that commissioning decisions on services for those with SEN and disabilities are shaped by users experiences, ambitions and expectations.  To do this, local authorities and CCGs should engage with Local Healthwatch organisations, patient representative groups, Parent Carer Forums, groups representing people with SEN and disabilities and other local voluntary organisations and community groups.

 

  1. Contact is currently funded by the Department for Education to support parent carer forums throughout England and to administer grant funding for them.

 

  1. Please find below a full explanation of the role, scope and remit of Parent Carer Forums to help clarify their responsibility, how they are resourced and how they fit into the local SEND landscape.

 

 

Parent Carer Forums

 

  1. Parent Carer Forums (forums) are organised groups in each local authority area funded centrally by the Department for Education (DfE).  The annual grant of £15,000 provided by the DfE ensures the independence of forums and enables the strategic voice of parent carers of children and young people with special educational needs and disabilities to influence local, regional and national service development, constructively challenge service providers and politicians, and hold local authorities and Government to account. 

 

  1. Forums are open to all parent carers with children and young people with SEND between the ages of 0 and 25 in their local areaForums’ aim is to work in partnership, or co-production, with service providers, practitioners and other local stakeholders in a respectful, equal and reciprocal, honest and transparent way in the spirit of the SEND reforms, Children and Families Act 2014, section 19 and revised Code of Practice (section 3). Forums are often described as a critical friend who draw upon the knowledge and lived experience of the families in the area to draw attention to areas of service that are not working well and offer suggestions for how they might be improved.  Forums are also able to provide feedback on the services that are working well and which families value.  They may be the conduit for emotive or difficult messages to be conveyed coherently and objectively to services.  It is often due to forums’ input with hard and anecdotal evidence from families, that decisions around proposed cuts to services are amended and sometimes reversed as the forum is able to pinpoint how funding can best be used to meet families’ needs. 

 

  1. For true co-production to flourish, a cultural shift across the area is necessary; this can take time and effort to achieve; it does not happen overnight, and it needs to be area wide and not dependent on individuals, or one groupSome critics mistakenly see the forum as an extension of the local authority and question their independence; this is why their funding is provided centrally by the DfE and via Contact.  Some forums do receive additional funding from the local authority or from CCG’s or NHSE locally.  This is usually when there is a mutually respectful relationship as described above, where services respect that the forum’s role is to provide challenge and solutions to local issues and recognise the added value, and the cost of running the forum, including the time and expenses of parent representatives attending meetings.  Most forums work within an extremely tight budget, yet

 

  1. increasingly high expectations are placed upon them to deliver results.  Forums do have to prioritise their work depending on the most significant issue for families; they cannot commit to everything as they are largely dependent on volunteers with challenging personal circumstances and caring responsibilities. Forums also operate in diverse and vastly different areas; they choose their own legal structures; and just like the local areas they represent, no forum is the same.

 

  1. Forums gather the opinions of parent carers in their local area in a variety of ways, such as by running informal coffee mornings to capture views from their wider membership, running consultations on priority topics, holding events, training and workshops, compiling reports, researching and presenting anecdotal and case study evidence to feed into work streams, strategic boards and task and finish groups where their representatives sit and bring these collective views to the tableForums attract their members in a variety of ways and adapt to the needs of their members to find creative means of engagementThey endeavour to reach all parent carers in their area so that they are as representative as possible, however, some groups are, by their very nature, seldom heard and are therefore more of a challenge to engage; others simply do not wish to be involved with the forum and may find other ways of feeding in their views, which are equally important. 

 

  1. It is important to recognise that not all parents will want to be part of the forum; some will choose other ways of feeding in to service development that better suits them, others may not wish or feel able to speak up, or it might not be the right time in their lives or journey for them to become involved.  For these reasons alone, the forum will never be truly representative of its area’s population irrespective of the breadth and extent of its reach. What is important is that they work with their partners and other local support, and condition specific groups to reach out as far as they can.  Forums also have a high turnover of parent carers involved due to the challenges that being a parent carer with a child or person with SEND brings; and will lose members naturally as their young people reach 25

 

  1. Forums are not campaign or lobby groups.  Though forums collect, collate and compile views and evidence to present to service providers to support arguments for change, it is a condition of the DfE grant that forums do not use their grant to campaign. Forums and campaign groups are often working towards the same outcome; they just go about achieving their objectives in different ways.  However, forums and campaign groups may find ways of working alongside each other on some issues to the mutual benefit of both groups.  Forums are also not support groups and do not provide services for families in their area, unless they receive funding and win tenders to do so.  This work is in addition to, and is separate from, their forum work.  Many forums do signpost families to the relevant and appropriate local service.  Around half of forums are wholly dependent on the £15,000 DfE grant to fund all their work over a year.  Many forums rely solely upon volunteers to carry out their work, though some do have paid admin or development workers. Some forums do remunerate parent carers for strategic work, sometimes the local authority or health will provide funding for this; other forums simply do not have the funds, or choose not to remunerate their members at all, covering only their out of pocket expenses.

 

  1. Each local forum is, by default, a member of the National Network of Parent Carer Forums (NNPCF) who represent the national strategic voice of local and regional groups of PCFs with national organisations and Government.

 

May 2019