Memorandum submitted by the Society for
Mucopolysaccharide Diseases
1. The Society for Mucopolysaccharide Diseases
is patient representation service advocating for the needs of
those with Mucopolysaccharide (MPS) or Related diseases. We are
a charitable organisation supporting a group of diseases which
are extremely rare and multi faceted resulting in a range of complex
physical and learning difficulties which present in varying degrees
depending on the disease. The majority of these diseases are life
limiting resulting in death in childhood and are progressive,
degenerative conditions. As an organisation that commits itself
to working alongside these families to represent their needs on
a daily basis, we believe that we are well placed to submit information
which will be of benefit to this inquiry. We work with families
all over the UK and therefore are in constant contact with Local
Education Authorities and schools. We undertake numerous visits
to these schools and are afforded the opportunity in most cases
to assess, and contribute to Statements of Special Educational
Needs to ensure that the school provision reflects the individual
child's needs in relation to their disease.
2. Overall, we face a number of difficulties
when supporting families to ensure their child's Special Educational
Needs are met. We find continually that educational establishments
are not designed to provide for those with multi-organ progressive
conditions with associated learning difficulties and usually not
in a mainstream environment. Some children can deteriorate very
rapidly, even overnight, which means flexibility of approach to
the child's condition to ensure they can maximise their educational
potential, is of paramount importance. A number of our diseases,
namely MPS 1, II, III and ML II encompass a neurodegenerative
element, which means that skills learnt are gradually lost as
the disease progresses. This means that again, the child's curriculum
needs to focus on what the children are most receptive too as
they will be unable to meet educational targets as their condition
deteriorates. The school day has to fit around their needs, with
caring and nursing needs becoming paramount as the disease progresses.
A majority of schools are not set up to deal with this need to
balance care with education and will often reject the children
on the grounds that they do not `fit' within their current educational
system. Often, this group of children's' behaviour is perceived
as `deliberate' and `attention seeking' rather than acknowledgement
that due to the neurological nature of the disease this group
of children display unpredictable aggressive behaviour, which
they cannot be held accountable for.
3. As highlighted above, these diseases
are extremely rare and therefore there are very few people who
will have ever heard of them, even doctors and paediatricians
at the height of their profession. It is often the parents, not
the professionals who become the experts on their child's condition
and it is vitally important that they have a full and active part
in the statementing process and beyond. Yearly annual reviews
are not sufficient for these children, neither is the absence
of the Local Educational Authority, which is often our experience.
As the condition can change so rapidly, funding often becomes
an issue, with parents having to defend their right for one to
one support for their child. There is no doubt that in order for
every child with an MPS or Related Disease to exercise their full
educational potential, they need one to one, or sometimes two
to one support to ensure their safety and others in an educational
environment. Without this it is highly likely that they will not
reach their potential or have a flexible, creative curriculum,
which fully meets their complex, needs.
CASE STUDY: CHILD
A
The situation concerning Child A, who has Sanfilippo
disease (MPS III), relates to ongoing issues with school from
2001. This case highlights the difficulties that can amount from
schools not understanding the disease or its manifestations.
The school did not understand the issues around
Child A's disease particularly concerning his behaviour and were
not providing a flexible programme to accommodate this. Child
A was isolated from his classmates at a time when he should be
constantly supported within the classroom setting to interact
as much as possible. He was forced to eat in the dining hall at
lunchtimes even though he liked to eat in isolation as he does
not like large crowds of people and high levels of noise. This
was further impacting on his behaviour, which he could not be
held accountable for. Child A was excluded two to three times
due to behaviour and violent outbursts which could have been avoided
with better understanding and management.
Child A was refused a place in the school's
6th Form as a consequence of these behaviour issues, there was
no attempt to work through the concerns and the reasons they were
occurring, Child A was excluded from the educational setting because
his school were not willing to accommodate his diverse and complex
needs.
His last exclusion was a fixed term exclusion
for eight days (plus two weeks for the Christmas break) due to
violence and issues were raised over the length of time Child
A was to be excluded. The exclusion was extended and Child A was
only offered a return on a part-time basis. An official meeting
was set up to meet with the school and the school governors.
Issues were raised with future school needs.
No suitable educational placement was available. The family were
told that if this was pursued, Child A's 6th Form statement would
be removed. At this point, legal advice was sought, as well as
support from the MP.
Legal action was instigated, investigations
taken forward to look at educational placements and the lack of
support and services for individuals with severe learning difficulties.
A meeting was set up with the Education Department to discuss
new provisions being developed for Child A and others in the area
with severe learning difficulties.
The MPS Society worked with the education department
in setting up a specialist provision for Child A. 2:1 support
was agreed as part of this provision. A new Statement of Special
Educational Needs was set up, stating clearly Child A's needs
and how they should be met, along with a new ethos of working.
Training was given by the MPS Society and continues to be given
when new members of staff join. A meeting was co-ordinated with
the school and the family and an introductory meeting was set
up for Child A and his parents to visit the school and the teachers.
This case highlights the consequences of not
understanding the manifestations of the disease and also the positive
outcome of the local education authority working closely with
the MPS Society to devise provision which adequately meets Child
A's current and future needs in relation to the progression of
the disease.
CASE STUDY: CHILD
B
In this situation, concerns were raised by Child
B's (who also has Sanfilippo Disease, MPS III) parents regarding
her current school which was to close down in the near future
due to government initiatives to have more inclusive education
in mainstream schools. The family were not opposed to this for
those individuals it would benefit, but for Child B they felt
she would not be adequately supported in this environment. This
was due to the high level of support she requires both educationally
and physically, and accommodation of her changing medical needs
which would leave her extremely vulnerable if moved into a mainstream
setting.
The only other school available to the family
refused to take on students as classes were too large and they
did not have the nurses available to meet needs. Due to staff
cutbacks the level of support and care for Child B had declined.
Child B was supposed to have 1:1 support but this was not happening.
This was placing Child B at considerable risk.
The family have had meetings with the school
and education authority, involving other families and the MP but
felt they were not making progress, and their needs and concerns
for Child B were being ignored.
The MPS Society put the family in touch with
legal services who took up the family's case. They addressed issues
concerning the educational provision that will be made for Child
B after the summer holiday.
The MPS Society continues to provide support
with amendments to the SEN Statement. A report and supporting
information has been provided to the local education authority.
The SEN Statement did not address Child B's needs and how they
should be met resulting in Child B being put at risk in an educational
environment.
The family refused to send Child B to her existing
school in September due to lack of support and concerns for her
safety. The school agreed to meet to look at the needs and write
a care plan to address the supports Child B needs. This did not
happen and no care plan was drawn up by the school. The family
sent Child B to school on the proviso that a parent would accompany
her until they felt comfortable with leaving her. The statement
was reviewed, however there are still outstanding issues with
the proposed statement. The family are awaiting a meeting, and
a letter of complaint has been sent by their Solicitor. The family
have considered moving Child B to a school out of the area as
they feel this is the only way her needs will be met.
4. SUMMARY
These two case studies above are only a small
part of the educational support parents are requesting from the
MPS Society due to the lack of understanding and provision to
meet their child's needs. In these cases the extreme circumstances
led to legal action being taken to address serious concerns which
would have arisen if these children had continued to attend an
inappropriate educational setting to ensure the children receive
the education which they are entitled to.
Below is a list of frequent concerns we face
when supporting these families, which have to be addressed in
any educational placement for this group of children.
— adequate facilities to assist with
the frequent changing of nappies;
— lack of medical management in relation
to specific aspects of the disease, particularly feeding can result
in a high risk of choking which raises concerns around the health
and safety of the child while at school;
— minimal concentration span which
results in children requiring constant 1:1 support in order to
be kept on task;
— extreme tiredness from sleep disturbance
which means these children can often be awake for much of the
night is not acknowledged or accommodated as it does not "fit"
with the school day;
— lack of accommodation of the child's
medical condition which is associated with their behaviour and
other needs which means they are often left at risk of injury
which, at worst, can result in paralysis if not managed appropriately;
— no facilities available for the children
who require gastrostomy feeding as their condition deteriorates;
and
— targets and expectations placed on
this group of children are unrealistic knowing that these children
are not going to progress. Accommodation of their educational
needs specific to their condition is often ignored as they do
not meet the targets set out in Individual Education Plans
Unless this group of children's needs are addressed
within an educational environment, they face at best poor educational
provision and at worst the risk of their safety being compromised
by a lack of understanding and commitment to meeting these complex
medical and progressive conditions.
October 2005
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