Supplementary memorandum submitted by Autism-in-Mind

I would like to thank you for giving Autism-in-Mind (AIM) the opportunity to give evidence to your committee as part of your Inquiry into the Elective Home Education Review. At the end of our session you very kindly said that if there was anything else that we wished to share with the committee you would welcome our contributions.

I would like to take the opportunity to do so and would like to comment about something that Graham Badman said to the committee during his session, and also to add depth to a question that was asked during the session that I myself attended. Comments made by Graham Badman added to the concerns of parents who are currently home educating their SEN/Children and the reason why they are so unhappy with the EHE Review Recommendations.

The EHE Recommendations are already making their presence felt even though we have only just finished a consultation wrapped around those recommendations to see what home educators felt about them. AIM is already aware of parents who have been contacted by their LAs demanding entry into their home for safe and well checks on their children.  We also know that some LAs are not allowing children with a SEN to be taken off roll until they have held a panel meeting to decide if the parents are fit to home educate. These LAs are currently breaking the law.  However, as ever, the balance of power is weighted in favour of the LA. Parents who make too much noise are already finding themselves being investigated by Social Services.  LAs making referrals to Social Services are in fact nothing new this has been happening for some years now. Parents who have children with disabilities already feel as if some LAs pursue them when they opt out of the system.

While we realise that children with disabilities and sen are viewed as being vulnerable children, so then are their parents, it appears that no one is particularly interested in the emotional well-being of the parent and how, their often disintegrating relationship with their schools and LAs, are affecting them. It is all too easy to build an unfounded case against a parent who has fought long and hard for the provision that a child requires in the system, to find that that fight has been used against them. Parents are told that their attitudes are disabling their children. That they are impacting on the emotional well-being of their children and probably the worst accusation of all is that parents are fabricating their child's disability in an attempt to gain the support that they believe that their child requires.

When Graham Badman gave evidence to your committee last week he heightened the concerns of already worried parents that LAs would be encouraged to build a case against them and find reasons to stop them from home educating. In response to a question asked by Paul Holmes about children with child protection plans and who maybe at risk, Graham Badman said that not all children's social services departments work in the same way, as he had discovered and that he would imagine there are some issues around deprivation that would be important. Graham said 'It is a question worthy of further asking. The aggregate figure is correct and I stand by it. It is slightly in excess of double the proportion. But yes, if one of my recommendations is carried out, namely that local authorities reflect on why children have left, they also might want to reflect on what they don't know about them and whether they are assessing that risk adequately.'

AIM, along with several parents who I have since spoken to, felt that this was an open invitation for LAs to use what they 'perceive' to be evidence against parents who have fought long and hard battles for the provision to meet their children's needs.  Although Graham Badman made his comments about a possible action which could be triggered as a child is about to leave the system, parents are very concerned that LAs will also use the yearly registration process as a means to building a case as to why they may not continue to home educate. We believe that these concerns are not unfounded.  It is very worrying to here someone advise an LA 'to reflect on what they do not know' especially if this question is asked of an LA who does not favour home education. 

Please allow me to explain why we are so troubled by the thought of an LA reflecting on things they did not know. If a parent has declined a service for their family/child offered by an LA or Social Services because it was an inappropriate service and would not address their needs, it is simply stated that service provision was refused with no reason being added as to why. It is totally in appropriate to ask a parent whose child has an Autistic Spectrum Disorder to attend a parenting class which is being aimed at parents who have children with behavioural difficulties.

While children with autism can have behavioural difficulties those difficulties can have very deep rooted psychological reasons and are often brought about because of extreme stress or anxiety because their complex and specific needs are not being met. The family requires help to discover what the cause of the behavioural issues is and not a parenting class which will effectively treat the symptom and not the cause. Refusing a service has already been sited by some LAs as a cause for concern on their behalf as to why a parent may not home ed.

If LAs are being encouraged to reflect and maybe find concerns about families that they 'did not know', how sure can we be that those concerns will be born from fact and not a lack of understanding and awareness about the condition that a child has and how that condition impacts on them?

I would like now to return to a question that was asked by David Chaytor, and a subsequent point that arose during my own session ,about our apparent unwillingness to allow anyone into our homes to assess the quality of our provision. It is important to understand that it is not the quality of our provision that presents parents with a problem.  It is the issue of having untrained officers come into our homes, who have not received the appropriate training to enable them to understand our children and how we often differentiate and personalise a curriculum to wrap around our children. Doing this enables us to meet not only their academic needs but also their emotional and social needs. I have yet to speak to a parent whose desire is not to enable and empower their children to live as independent a life as is possible for them to live as adults.

As a community we have very real fears that defining a suitable education will stop parents from being able to teach their disabled children the skills they are going to require in a mainstream world as an adult. While academic success is of course important it is of little value if the person who has a string of qualifications does not possess the effective communication or social skills that they require to put those qualifications to use in a working environment.

 At the moment only 15% of the adult autistic population are in employment compared with 48% of the whole population of people with disabilities. A big factor in not being able to work is lack of appropriate skills due to problems in accessing education and training, including social skills and work skills training. This is something that is being flagged up to the Department of Health by the External Reference Group (of which I am a member) assisting the DOH in the drafting of the Adults Autism Strategy.

We understand that children who are attending schools are seeing professionals every day of their school lives. Seeing a professional/teacher/therapist is built into their routines and so becomes an every day part of their lives. However we assist families who have professionals working with their children in school who then ask to observe that child in their home and even though the child is familiar with the person who would be doing an observation, taking that person out of an environment where the child is familiar with seeing them and bringing them into their homes can be a very distressing experience for the child.  Children with autism find change very difficult and often hold fixed and rigid views about people and the places where they are used to coming into contact with that person. If a child is used to seeing a professional/teacher therapist in school then bringing that person into their home places that person out of context in their minds, and they can find it very difficult to interact with that person even though they are well used to doing so in school.

Some autistic children, my own sons being two of them, were never able to speak to children who they attended school with outside of the school gates, because those children only existed inside of school inside of their minds. Autism is indeed a very complex condition and one that requires a great deal of specialised training to be able to understand.

The Autism Exemplar states that families living with autism should be offered the opportunity to have a key worker who could build a relationship with a family and help them to access other professionals and provision for their children without the need to speak to many different people. If families living with autism were offered a key worker they would be seeing someone who they were comfortable with. At the moment the only families that AIM knows who have key workers are families who have reached crisis point and have been given (as opposed to being offered) a Key Worker to assist them during their crisis.

In the AIM EHE Consultation response to Question 11

Do you agree that the local authority should visit the premises and interview the child within four weeks of home education starting, after 6 months has elapsed, at the anniversary of home education starting, and thereafter at least on an annual basis? This would not preclude more frequent monitoring if the local authority thought that was necessary.

  'Relevant expertise on the part of advisors is essential in the case of children with special educational needs and/or developmental disorders. Inclusion into mainstream for children with SEN has been, and still is for many, not only unsuccessful but a far from positive experience with children leaving the system to be home educated scared and scarred by their experience. AIM believes that the biggest reason why inclusion has not worked for so many children is because these children were added to our mainstream schools and classroom before teachers had had the appropriate and accredited training that was always going to be necessary for inclusion to work successfully. The National Children's Plan for Autism published in 2003 gave clear recommendations wrapped around the importance of training for anyone who was working with or coming into contact with ASD.'

Training (Grade C) (See 4.6 for further details)

Joint multi-agency programmes of ASD awareness training on a continuous basis are necessary for all professionals working with children in the community and for parents/carers. All those providing assessment and diagnosis should undergo regular ASD specific training.

4.6.1      Locally available ASD training (including distance learning) is a requirement for all those who come into daily contact with children with ASD including parents/carers, adults, early educators, teachers and all support staff.

Until very recently, teachers have not been required to have training in SEN and school SENCOs have not been required to be qualified teachers; lack of suitable training has been a significant factor in SEN provision in schools being found to be not fit for purpose, and in parents removing their children from school, so finding people with appropriate expertise might be difficult. It would be counterproductive for the education of a child with SEN to be assessed by an untrained local authority official.

Lack of training and awareness within EHE Teams is exacerbating the concerns that home educators who have children with autism and other disabilities have at this time. A Local Authority needs not only to reflect on what they do not know about a family, who are about to or who are already home educating their child, they must also reflect on what they do not know about the disability that that child and therefore their family are living with and how that disability impacts on the child and family.

I am enclosing a copy of the AIM Report which was written last year for The Lamb Inquiry which was asking the question 'Why parents have a lack of confidence in the system and the statementing process'[1] The information for this report came solely from parents who are now home educating because they lost confidence altogether in the system, and also a report that AIM wrote to the All Party Parliamentary Group for Autism in 2003 detailing the rise in the numbers of children with autistic spectrum disorders being home educated and the reasons why parents were removing their children from the system.

Carole Rutherford

Co-Founder of Autism-in-Mind.

October 2009

[1] Not published. See