Families with children with special educational needs and disabilities face longstanding difficulties when accessing support. Last year saw the introduction of significant reforms to the special education system, aiming to give children and their families greater choice and control, and join up education, health and care services.
Reforms include the replacement of statements of special educational needs with the more holistic Education, Health and Care Plan, and a duty on local authorities to publish a ‘local’ offer setting out the support available in their areas.
According to those in the sector, while parents of children who have been diagnosed with special educational needs are generally happy with the thrust of the reforms, they are being let down by local implementation and a lack of information.
Charity Contact a Family has seen a fourfold increase in the number of calls to its helpline since the reforms were introduced. ‘We regularly speak to confused and worried parents who need support to navigate the new system,’ says Una Summerson, the charity’s campaigns manager.
National Autistic Society research, meanwhile, found that almost half of parents who had been through the system were dissatisfied with it. Many say the new process of applying for statutory support is stressful, and often takes longer than the 20-week legal limit.
‘Anecdotally, we have information about the difficulty parents have in getting assessments agreed,’ says the charity’s education policy officer Catriona Moore. ‘It is not unusual for the first request to be turned down. It may be some local authorities want to hang on before doing an assessment that might result in an EHC Plan with resource implications they are obliged to meet.’ Once a plan is in place, parents are generally happy with the content, she says.
However, budget cuts have had an effect on the support available, with many services delivered through children’s centres which have been earmarked for closure.
‘The code of practice seems to have an assumption that area SENCO teams still exist, but in the area I worked in the team disappeared overnight,’ says Janice Sutcliffe, independent early years consultant and former area SENCO team leader. This means parents’ experiences of the new system vary across the country and even within local authorities. Here, parents of young children share their stories.
GEMMA BAILEY, SURREY
Gemma Bailey’s three-year-old son Albie has a diagnosis of autism, while her two-year-old, Jack, is waiting for an assessment. She was keen to get August-born Albie’s EHC Plan, which includes an offer of a place at a specialist unit within a mainstream school, in place before he starts school in September. ‘On paper the process sounds very family-orientated, but in practice that doesn’t seem to be the case,’ she says.
Ms Bailey feels that she had to become an expert in all the issues to drive the process forward at each stage. ‘I have two children under four, I don’t have a lot of time to research,’ she says. ‘The information is out there, but it is hard to find.’
Local authority staff turnover has been a problem. ‘I had a letter on the Friday from our case worker to say that Albie was under assessment, but when I called on Monday she had left, and to date I still don’t have a case worker,’ says Ms Bailey. ‘The case has been passed back and forth, and I end up speaking to someone different every time. I know there aren’t the resources to hold everybody’s hand, but it is important to have someone you can call and have a conversation with, or even have your call returned.’
In the absence of other support, Albie’s nursery, Round and Round the Gardens in Pyrford, has been ‘fantastic’, she says. ‘They helped with the process of applying for discretionary funding and a pathway plan – they have been the ones arranging it,’ says Ms Bailey. She has set up a pre-school network, We Shine (www.we-shine.org.uk), to help local parents in the same position to access the information they need.
JENNIFER LAW, EAST SUSSEX
Jennifer Law’s two-year-old son Arthur is severely sight-impaired and has associated global developmental delay. Arthur has support from professionals including a speech and language therapist, occupational therapist, and a specialist teacher for children with visual impairment, who works with him around his Individual Education Plan.
Initially, the different agencies involved with Arthur were not talking to each other, says Ms Law. ‘But the local authority has an Early Years Intervention Team, and they organised planning meetings to bring all the involved professionals into one room, which has been really helpful in bridging the gap between health and education,’ she explains. ‘Until then the specialist teacher wasn’t in touch with the nursery, for example.’
A lack of joined-up services impacts wider support, as do short-term planning and budget cuts. ‘Services are commissioned for such a short amount of time, even the professionals find it really difficult to signpost families to them,’ Ms Law says. ‘The local offer is badly communicated in East Sussex – when we lived in Brighton and Hove it was clear.’
Arthur attends Greenways Nursery in Hastings. ‘The level of support that is there at the nursery without us having to ask for it is brilliant,’ says Ms Law. ‘I don’t think it is a coincidence that our fantastic nursery is attached to a children’s centre – it is such a travesty that so many are being closed.’
KIRSTY HARRISS, WEST BERKSHIRE
Kirsty Harriss’ six-year-old son Ollie has ASD. ‘Everything is such a long, drawn-out process, you have to fight for everything,’ she says. ‘The council rejected our initial application for an EHC Plan, which is apparently very common. I think they want to see who is serious. They said we couldn’t re-apply for six months, but when we said we were going to appeal we were magically approved in a few weeks.’
Ms Harriss says the EHC Plan has made a big difference. ‘I am very happy with what is in it,’ she says. ‘But the school are not following it 100 per cent. I can’t fault what they do with Ollie in school but there’s a big section about supporting the family, which is not happening. There is a lack of understanding of autism and we’ve had problems with other parents at school – the plan says the school are supposed to support us, but we have had issues which ended up making it difficult for Ollie to attend the school disco, for example.’
In terms of wider support, Ms Harriss was not aware of the local offer until she saw it on the school website. ‘There is support out there but you can’t find out about it,’ she says. ‘There’s a children’s centre group Sunshine and Showers, but I found out about that through pure fluke. There must be people out there who could really benefit from it but who don’t’ know it exists. The children’s centre it is in is being closed now, so I don’t know if that will be the end of that.’
LOU GRZESICA, ESSEX
Lou Grzesica’s four-year-old son Daniel was diagnosed with autism last November. ‘We have just got an EHC Plan, and he will get 27 hours of support a week at school when he starts in September. I am happy about that, but it has been a battle,’ she says. ‘I didn’t get my first-choice school, but with the EHC Plan I can now override that. However, my first-choice school contacted the nursery to ask if my son should really be at a special school, and I think they believe his needs are too much.’
Under the new SEND code, PVI settings do not have to have an in-house SENCO, and this has been an issue for Daniel. ‘The nursery has never worked with an SEN child before, and there have been incidents where I have had to pick him up because they said he wasn’t coping – but I think they are not coping with his behaviour,’ she says. ‘There is no in-house SENCO, only an external SENCO, although the manager is doing a SENCO course.’
Ms Grzesica has also had an issue with differing approaches from different professionals. ‘Daniel has an obsession with Hoovers and everyone else was saying we should use his Hoovers to support his learning, colours and counting and so on, but the speech and language therapist said no, take them away,’ she says.
Katie’s two-year-old son Oliver was born with multiple brain abnormalities and, as a result, has global development delay, is partially sighted and has epilepsy. He attends nursery four days a week. ‘He is currently getting physio, occupational therapy, and speech and language therapy from the NHS,’ she says. ‘Support from them is good, but there have been constant changes in staff which doesn’t help with consistency. We also have a special needs teacher for his vision through Essex County Council and she is fantastic.’
The biggest concern is with equipment. ‘The length of time it takes to get equipment has meant that by the time items are in stock and delivered, they aren’t fit for purpose,’ says Katie. ‘For example, it took over a year for the process for a supportive chair to go through for nursery, which he needed in order to eat and play in safety – by which time he had grown considerably and he couldn’t use the original chair they had ordered.’
- SEND code of practice, https://www.gov.uk/government/publications/send-code-of-practice-0-to-25
Nursery World’s series on the SEND code of practice, www.nurseryworld.co.uk/send