Written evidence from the National Network of Parent Carer Forums (DEG0103)

1. About the National Network of Parent Carer Forums

The National Network of Parent Carer Forums (NNPCF) is the independent, national voice of parent carer forums. We are run by parent carers with lived experience.

Our mission is to deliver better outcomes for families living with special educational needs and disabilities (SEND). We aim to:

• create a culture of participation and co-production across the education, health, social care and the voluntary sectors. This means that we are involved in all aspects of designing, commissioning, delivering and reviewing services as an equal partner.
• empower our members to ensure that their voices are heard at a local, regional and national level
• inspire our partners by sharing good practice and knowledge.

Our vision is a for the best possible opportunities and futures for all children and young people with SEND and their families

Parent Carer Forums are pan disability. This means each Parent Carer Forum includes Parent Carers from a range of backgrounds with a wide range of experiences in Health, Education and Social Care as their children have a wide range of conditions. We currently have approaching 100,000 members.

2. Our Approach to this Inquiry

As a membership organisation, the NNPCF Steering Group has based this report on a range of sources including:

•              Feedback from forums through their regional networks to their Steering Group member.

•              Feedback on our social media platforms.

•              Feedback at our annual conference

•              Key issues identified through direct conversations with parent carers at a local, regional and national level.

•              A national survey of parent carer forums

3. Parent Carers have high aspirations – The Wider Context

“Our vision for children with special educational needs and disabilities is the same as for all children and young people – that they achieve well in their early years, at school and in college, and lead happy and fulfilled lives.”[1]

“Those who have learning difficulties find it much harder to have the aspiration or see relevant opportunities for work but this starts at college level as very limited courses are on offer 6 years after the SEND Reforms.”

Parent Carer Forum member

Parent and carers of children and young people with special educational needs and disabilities share the same hopes for their futures as other families but the challenges are far greater.  The NNPCF would ask that when considering the responses to this inquiry, the Select Committee seeks to understand and address not only the challenges faced by young people with special educational needs and disabilities in securing employment but also the significant impact this has on families as they seek to care for, support and guide their young person.

The mental health and social care needs of SEND families are increasing during the pandemic as both formal and informal support networks and employment opportunities are reduced. We would like the Committee to consider the wider holistic impacts for family life. All families are faced with a challenging landscape including home schooling, reduced employment opportunities, financial pressures, illness and bereavement, however, when a SEND need is added the impact is exacerbated.

4. Our Key Issues

Families describe their young people approaching school leaving age as “the cliff edge”. Whilst at school, they understand the provision and support their young person is receiving and can align this with the outcomes for their young person. However, upon leaving school the offer from many, if not most local areas is less clear and very often families are unable to see how the services and provision available will serve to deliver the best possible outcomes for their young people. This is because information about services is often poor and too frequently, the services and support parents believe their young person needs are just not available.

Prior to the Covid 19 pandemic, many parent carers reported that they had it was extremely difficult for their son or daughter to find paid employment. 

Key Statistics from our November 2020 survey of Parent Carer Forums

The NNPCF surveyed our members regarding Employment pathways and opportunities in their Local Authority area.

•              96% of forums who responded to the survey said that they were either unaware of whether their Local Authority had an Employment strategy for disabled people or their Local Authority did not have an Employment strategy for disabled people. 

•              59% of forums who responded said that their Local Area offer supported employment opportunities for young people with SEND.

•              26% of forums said that this has led to an increase in the number of young people with SEND who is in employment. 

•              41% of forums reported an increase in young people with SEND who are not in Education, Employment or Training (NEET).

Forums advise that the main reasons for the rise in the number of young people with SEND who are NEET are:

1.              Lack of appropriate locally available employment opportunities

2.              Low aspirations relating to work

3.              Poor information about employment and training opportunities

4.              Off rolling, reduced timetables, exclusions

The most recent government statistics reveal that children with SEND are 8 times more likely to be permanently excluded.[2]

5.              Lack of travel training opportunities

6.              Narrowing of curriculum with fewer vocational courses on offer

7.              Quality of FE courses for young people with SEND.

Forums have told the NNPCF that the impact of low employment on young people with SEND is social isolation, low self-esteem, poor mental health and wellbeing and limited life choices.

The NNPCF are concerned that the opportunities for a young person with an EHC Plan and a young person at SEND Support in a mainstream school differ.  Those who do not have an EHC Plan are often forgotten; these young people get support from school but once they leave education they lose all support and do not qualify for any employment support as the thresholds are too high.

The NNPCF would like to see parity in offer regarding employment support for young people with an EHC Plan and those at SEN Support.  For example, help with career advice, vocational profiles, access to Job Coaches and information, advice and support.

4.1 Preparing for Adulthood and Employment

“The education system does not realise the full potential of many of our young people and it does not help them to achieve anything or to help them move into employment.”

Parent Carer Forum member

Supporting their child to prepare for adulthood is a very complex and difficult time for families.  Many forums are reporting that their Local Authorities do not provide any information, advice or guidance to families to enable their young person to prepare for life beyond full time education.

The SEND Code of Practice states that “as children grow older, and from Year 9 in school at the latest, preparing for adult life should be an explicit element of conversations with children and their families as the young person moves into and through post-16 education. For children and young people in or beyond Year 9 with EHC plans, local authorities have a legal duty to include provision to assist in preparing for adulthood in the EHC plan review.” [3]

However, many forums report that the Year 9 transition review does not focus on further education, training and employment opportunities.  Outcomes are not holistic and often do not focus on the young person’s interests and strengths.   This situation is compounded by poor quality EHC plans that do not focus on independence and preparing for adulthood from the earliest point.

Families report a number of consistent issues across the country:

•              Whilst there are often good, co-produced preparing for adulthood strategies and intentions, provision of services is lacking across the board.

•              There is frequently poor planning that is not started soon enough

•              Information about employment support is limited and confusing both nationally and locally.

•              Areas that have successfully implemented the government’s reforms are jointly commissioning the services that families need and this leads to better outcomes for young people.

The NNPCF strongly requests that it is a requirement for each Local Authority to have an Employment pathway as part of their Preparing for Adulthood strategy.  The strategy and information about Employment support for young people with SEND should be on published on the Local Offer.

There needs to be a clearer understanding of how local authorities and providers within the post-16 high needs system can work together to manage an increased demand for support for High Needs students to prepare them for employment, and what more can be done to make best use of resources.  Funding also needs to be made available to FE colleges to support students with lower level SEN.

4.2 Rise in NEET and the Impact of Covid 19

“If a young person is off the radar or out of education then there seems to be lack opportunities or even no progression/further advancement for the young person.”

Parent Carer Forum member

Those who are NEET, educated out of area or who are supported at SEN Support level have found their options restricted.  Supported Internships are only available for a small number of students with EHCPs whilst apprenticeships become unavailable to some SEN students who are unable to secure the necessary grades to access their chosen course.

Forums report that young People with Mental Health difficulties, anxiety and/or high functioning Autism Spectrum Condition have less opportunity to access appropriate education and therefore are at greater risk of NEET.

“My daughter completed a supported internship in June 2019, it was meant to lead to a job. It didn't. She wasn't given enough training to make her employable. She doesn't meet criteria for any support & is now claiming benefits when she would prefer to work.”

Parent Carer Forum member

The impact of Covid-19 has been “disastrous”.  Supported Internships and Apprenticeship opportunities are severely limited or supported employment courses are restricted or closed.

Forums report that it is “even worse than normal” and there is a “total lack of employment”. 

Hope for the future is low “there's even less chance of find work” and some parents see the pandemic as “an excuse not to employ or to sack.”

4.3 The Right Support at the Right Time

Financial support

Forums have told us that poor support offered to families about what impact even a very modest salary will have on their family’s benefits can act as a barrier to employment. Families often express fears that paid employment for their young person will result in a fall in overall family income – often something that they cannot afford.

The NNPCF would like to see clear benefits guidance offered and signposting to specific benefits guidance as a part of pathways into employment.

Holistic support to get into employment – an “Employment Support Plan?”

Families report that often very simple, everyday activities and considerations are a major barrier to employment. For example, the accessibility of local transport services or the timing of social care visits (for example to get ready in the morning). Small adjustments in the wider support package for young people with SEND can remove otherwise intractable barriers.

The NNPCF would like to see a more holistic approach to employment taken that considers more of the barriers that disabled people face in to get employment We would like to explore a holistic “Employment Support Plan” that outlines the support that will address these barriers in the same way that an EHCP addresses the support a young person requires to access education.

4.4 Disability confident employers

“Employers do not know how to employ these people and are unwilling to put the money in and training of all staff around disability”

Parent Carer Forum member

Many of the work programmes available focus on supporting the young person and the employer into a successful employment and there is strong evidence of the employability of people with disabilities. However, the disability employment gap remains high. Schemes to create more disability confident employers and so increase demand for disabled people in the workplace are key to addressing this.

The NNPCF would like to see details of the disability confident scheme posted on every local offer across the country.

Currently the list of disability confident employers is weighted towards public sector organisations and charities.[4] We would like DWP to focus on adding more private sector employers to the list. The NNPCF would like to see a disability confident “kite mark” or sticker to encourage more small and local businesses to participate.

5 Coproduction

Research shows that coproduction can bring out positive solutions to the many difficulties faced by families caring for a young person with SEND.  We understand that coproduction can be difficult at the best of times; it is even more challenging during a pandemic.

We would like the Government to reinforce the message to Local Authorities and other partners on the need to co-produced solutions to create employment opportunities for young people with SEND.

The issues and challenges that this Inquiry has identified are beyond young people and families needing more information, they shine a light on the need for a different approach to ensure that employment opportunities improve for everyone, regardless of need or background.

These changes will only happen if continued and sustained effort, attention, funding and accountability continues to be placed on Education, Health and Social Care partners, but also that the wider community values the skills, gifts and strengths of this group of young people and their families. When agencies work well together, believe that young people can achieve and young people, their parents/carers feel empowered, the outcomes can be extraordinary.

Here are some examples of good practice:

Our Voice, Parent Carer Forum in the LB Enfield sits on the Employment Board and has been trying to influence local employment opportunities. LB Enfield have been working hard to support post 16 employment opportunities and are offering roles in the council.

Bexley Voice have coproduced a Parent Transition Planner to provide information for parents/carers who are supporting their child who has an Education, Health and Care Plan (EHC Plan) and complex needs, as they move from Year 9 into adulthood.  The forum also offer parents and carers of young people in Year 9, with complex needs and an EHC Plan, the

opportunity to attend a Parent Transition Workshop. This will help them prepare for their Year 9 annual transition review.

Oxfordshire PCF were involved with the Post 16 Network which consisted of post 16 providers, colleges, alternative providers, health, education, children and adult social care, providers of supported internships and employers keen to support employment opportunities for disabled young people.  The forum supported work on supported internships, plus special events created in local Job Centre with DWP. The event enabled young people with SEND to meet face to face local employers.

6. Our final messages

The NNPCF would request that Local Areas work in partnership with their local Parent Carer forum to discuss and agree local their PFA strategy and employment pathway for children and young people with SEND.

In addition, the NNPCF would like to see a unified strategy across Government departments which join up the Disability strategy, Autism Strategy, NHS LTP for Learning Disability and/or Autism and the SEND Review

December 2020