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 may be 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
hear 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 inappropriate 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 from 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 six 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"[22]
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.[23]
Carole Rutherford
Co-Founder of Autism-in-Mind.
October 2009
22 Not printed. See http://www.autism-in-mind.co.uk/ Back
23
Not printed. Back
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