Learning Disability Today
Supporting professionals working in learning disability and autism services

Parents face long battles to get right support for their autistic children, report says

NASMany parents of autistic children face long battles to get their child the right education and support, despite the government introducing a new system two years ago that was meant to make things easier and less adversarial, according to a report.

The report, by the National Autistic Society (NAS), found that, despite the introduction of the new special educational needs and disability (SEND) system in England, parents say that they are having to fight just as hard and often not getting the right support from local authorities and the NHS.

Surveys by the NAS of about 1,000 parents, carers and children and young people on the autism spectrum found that 74% of parents said it has not been easy to get the educational support their child needs.

Other findings included:

 69% said their child waited more than a year to get support after parents or teachers first raised concerns, and 16% waited more than three years

While 50% of parents said they’re satisfied with their child’s SEND provision, just 33% were satisfied with healthcare and 30% with social care

61% of parents said their child is in their preferred type of school, although many face an uphill battle to get to this point.

The report includes recommendations to government and local authorities aimed at reducing delays in getting support and ensuring every area has the right mix of schools and other educational provision. This includes calling on the government to review how councils are implementing the new SEND system and, based on this, to decide whether additional resources are needed to complete the reforms by their 2018 deadline or whether more time is needed.

There are about 120,000 school-aged children on the autism spectrum in England, the vast majority in mainstream schools, and many rely on the SEND system to get the support they need to make progress. For some children this means minor adjustments, like having time out from a busy classroom or a teaching assistant to help them process their thoughts. Others, who perhaps have an extreme sensitivity to light or sound or who are unable to communicate verbally, may need a much higher level of support at a specialist school.

The government introduced major reforms to the system two years ago, expanding support to cover from birth to 25 and replacing SEN statements with Education Health and Care (EHC) plans that covered health and care needs as well as education. The changes aimed make things simpler for parents and give them greater control over the support their child receives.

Although the majority of parents surveyed by the NAS say their child is in their preferred type of school, many parents face an uphill battle to get to this point. 17% of parents who completed the survey say they took their local authority to an SEND Tribunal to get the right support. Appeals should be a last resort but these figures suggest it is often necessary. The most common reasons reported for appealing were the local authority’s refusal to issue a statement or EHC plan, or to change the school named in the statement/plan.

Ministry of Justice figures show that autism is the most common type of need identified in SEND Tribunal cases, making up 35% of all Tribunal appeals in 2014-15. Three-quarters of appeals were subsequently withdrawn or conceded by local authorities, and of those that proceeded to a decision, 86% found in favour of the parent. The NAS say this suggests that too many wrong decisions are being made by local authorities, and parents are right to believe that the system does not always work in their child’s interests.

Mark Lever, chief executive of the NAS, said: “Parents should not be facing long, stressful and exhausting battles, just to get the right education for their children. This is putting an unnecessary strain on often already vulnerable families and risking the long-term prospects of the 1 in 100 autistic children in England, who have so much to contribute to our society.

“The government tried to fix the education system for children with special educational needs by introducing welcome reforms two years ago, and then announcing more funding to help in January this year. But many of the same problems remain. Too many parents are having to take legal action to get basic support for their children and education, health and care services still aren’t working together as the government says they should.

“With the right education and support, children on the autism spectrum can achieve great things and their families can live full and happy lives. Without it, families are left to struggle alone and children can miss out on years of education, putting them and our society at a huge disadvantage.

“The government must take responsibility for its reforms and review how local councils are using the extra funding and what difference the reforms are making. The government must then act, whether that’s increasing resources to complete the reforms by the 2018 deadline or delaying implementation until local authorities can fulfil their legal responsibilities properly. The most important thing is to make sure that the speed of the reforms don’t compromise the support children need.”

A Department for Education spokesperson said: “We have made changes to the system of support for SEND, which put families and children at their heart, making it less adversarial for them – and we are seeing good progress.

“Mediation is now available for anyone thinking about an appeal. This is seeing results with 75% of cases in 2015 resolved without the need to appeal that year, while the number of appeals is also on a downward trend.

“We’ve also invested in an advice service, run by the National Autistic Society, to help parents and teachers to help children with autism remain in school, and Ofsted and the Care Quality Commission are now looking at how well local areas are providing for children with additional needs.”

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