According to the National Autistic Society (NAS), which carried out a survey of 1,431 parents and carers of children on the autism spectrum, families are facing ‘exhausting and highly stressful battles’ to get the support they need.
Of those parents that took part in the survey and had also been through the system (36 per cent of respondents), almost half reported being dissatisfied with the process.
Many also felt let down by the new process of applying for statutory support, which they said is extremely stressful and in many cases took longer than the 20-week legal limit.
This is despite the introduction of a new Special Educational Needs and Disability (SEND) system in September 2014 designed to make it easier for parents to get help for their children and give them a greater say.
Under the reforms, Education, Health and Care (EHC) Plans were brought in to replace statements of special educational needs.
Findings from the survey are included in the NAS’ ‘School Report 2015’ that examines how well the new SEND system is meeting the needs of children and young people on the autism spectrum.
The report, which compares families’ experiences now with its previous report in 2011, suggests it is even harder for parents to get the right help for their children.
Three-quarters (75 per cent) of parents who responded to the survey said it has not been easy to get the educational support their child needs, compared with 68 per cent in 2011.
There has been a slight improvement in the time between parents raising concerns and getting support, however. And parents who have received EHC Plans are more satisfied, although the number of plans being issued is lower than statements.
Parents’ current experiences also reveal that the gap between children’s needs and what is provided in way of services has also got wider over the last four years.
Unmet support needs identified by parents include - leisure or play opportunities, speech and language therapy, occupational therapy and short breaks.
The majority of parents agreed that a lack of timely support has had a negative impact on their child effecting their social and communication skills, behaviour and educational progress. According to NAS, these consequences have become more widespread over the last four years.
The survey also revealed that families increasingly feel they have to take legal action to secure a statement or plan.
Jody Coxon, mother to two children with SEND, had to take her local authority to a tribunal to get support for her eldest son under the old system. He is now settled in a mainstream school with a SEN unit.
While she says that getting a SEN statement for her youngest son was much simpler, they have been waiting almost nine months for his statement to be transferred to an EHC Plan.
She said, ‘We have had two vastly different experiences with the old SEN system. We managed to get a SEN statement for my youngest in just 12 weeks but we had to go to a tribunal to get support for my eldest. This was a highly stressful time, which had a huge impact on my whole family’s well-being, although both my children now have the support they need.
‘While there have been some delays transferring my youngest son onto the new system, I trust the school staff and am not too worried. The school and local authority must be under a lot of pressure transferring statements while also assessing new requests for support. My son is doing well at an autism-specific school so I don’t mind waiting if it means that those parents desperate for support get help sooner. I don’t want anyone to have to go through the long and stressful battles we faced getting support for my eldest son.’
The NAS is now calling on the Government to carry out a systematic review of local authorities’ implementation of the new SEND system. It also wants consideration given as to whether the timeframe for changeover to the new system needs to be extended.
Mark Lever, chief executive of the National Autistic Society (NAS), said, ‘The new SEND system isn’t yet delivering the high-quality education that every child deserves. Far too many parents are still having to fight tooth and nail for the right support for their children, often facing long and incredibly stressful delays. Every day a child spends without the right education reduces their potential to succeed in life and become part of a strong and diverse UK workforce.
‘If the Government is serious about its commitment to halving the disability employment gap it needs to start in schools. We want the Government to conduct a systematic review of local authorities’ implementation of the new system and to take any necessary action to make sure families are listened to and children receive support within a reasonable time.
‘The new SEND system has the potential to transform the prospects of a generation of children and young people on the spectrum. It's too important for the Government not to get it right.’
A Department for Education spokesperson said, ‘We have introduced the biggest reforms to the Special Educational Needs and Disability (SEND) system in a generation to ensure that support is focused on needs and aspirations, enabling all young people, including those with autism, to achieve better outcomes in education and adult life.
‘This report shows that, once implemented, our reforms are making life better for families of children with autism, with those who have a new Education Health and Care (EHC) plan significantly more satisfied than those without. We have given £70 million to councils in 2014-15 to help them plan and implement our reforms, as well as giving £77 million between 2014 and 2016 to pay for the additional starting costs they may incur – but we will continue to support councils as they successfully implement our reforms.’