August 2002Liverpool Branch Newsletter
UPDATE ON CHANGEOVER TO DOWN’S SYNDROME LIVERPOOL
Well, we finally have the model constitution from National Office!
Basically, all we have to do now is fill in all the spaces
that are relevant to us and send it off to the Charity Commissioners and
wait for them to return it with our new charity number. Once we get this,
we can affiliate to the DSA and they will make
over the branch funds to the new charity. From that point,
the new charity will be up and running!
We still have a lot of work to do regarding our membership (voting members, affiliated members etc.) and updating our records as we will be required to keep membership details a little more formally than now e.g. full names rather than initials.
Membership of DSL (that's us) will not be dependant on membership of the Down’s Syndrome Association, although we would encourage continuing membership with the National Association.
We have no plans to charge a membership fee for the new
charity.
Your committee will be meeting soon to discuss all this
and, of course, take a little time to fully read and understand the huge
responsibility we will be taking on as Trustees.
We would anticipate that all of this will take a few months
to get through but, rest assured, we will keep you all informed of our
progress as and when it happens.
Oh, and don't worry, the Christmas party is already booked,
as is the entertainer!
Colin Hill,
Chair, DSA Liverpool Branch.
SPEECH THERAPY
Colin wrote an article in the May newsletter, alerting parents to the fact that there was no provision in Liverpool for speech and language therapy for children attending secondary school. He also pointed out that many children have speech and language therapy included in Parts 5 & 6 of their statement, non educational provision, which simply means that the Local Education Authority have no legal responsibility to ensure that provision is made.
He went on to say that the new SEN Code of Practice (in force since 1st January 2002), now makes it clear that speech and language therapy should be included in Part 3 of a statement, educational provision, unless there are exceptional reasons for not doing so. This places ultimate responsibility for ensuring that provision is made with the LEA.
The new Code of Practice also requires that any provision listed in Part 3 of a statement, should be clearly quantified in terms of hours of provision and staffing arrangements.
Over the past 3 months or so, Colin and I have pursued this matter with the LEA. Letters were sent to Colin Hilton, Executive Director for Education, and Joan Creaney, Professional Lead Speech and Language Therapy. In their replies, both Mr Hilton and Ms Creaney, pointed out the difficulties in recruiting speech and language therapists. As a result, speech therapists employed by the Health Authority had taken the decision to focus their support on pupils in primary school.
Colin and I have also raised our concerns about speech
and language therapy at the Special Educational Needs Forum which, incidentally,
I attend regularly on behalf of the Liverpool Branch. Members of the Forum
agreed this was an important issue and also wrote to Mr Hilton.
We have continually pointed out that,
"Where the NHS does not provide speech and language therapy for a child whose statement specifies such provision, ultimate responsibility for ensuring that the provision is made rests with the LEA.” (Code of Practice Paragraph 8:51)"
On a more positive note, we have received an assurance
from the LEA that all new statements will now have speech and language
therapy included in Part 3, educational provision, and that it will be
quantified. They have produced a form of wording to be used in statements
which, of course, will need to be adapted to suit the individual needs
of each child. The suggested wording is as follows:-
“A speech and language development programme, delivered as an integral part of the curriculum with advice and support of a speech therapist on a (insert what is appropriate e.g. fortnightly, termly etc.) basis. Opportunities for language development will be available on a daily basis and contained within teaching classroom activities and will be the responsibility of the class teacher. Specific time to be set aside for speech and language therapy programme, (insert what is appropriate e.g. twice weekly for 15 minutes), delivered by the ESA."
It should be noted that an amendment might be needed
when the child moves to secondary school to the effect that, opportunities
for language development etc. will be the responsibility of the SENCO because,
in secondary school, children do not stay with one class teacher throughout
the day.
The LEA has also held meetings with the Speech and Language Therapy Service, to try to resolve the question of provision for pupils in secondary school. An immediate solution does not seem likely but, if your child has speech and language therapy specified in Part 3 of their statement and it is not provided, you have every right to pursue the matter at a tribunal.
Should your child’s statement have speech and language therapy written into Parts 5 & 6, then you need to ask for the statement to be amended to have it included in Part 3, educational provision. You should also ensure that any provision, including such things as hours of ESA support, is quantified. Do not assume that an existing statement will automatically be amended to comply with the requirements of the new Code of Practice.
If you think your child’s statement does need amending, then say so on the ‘advice’ form which your school should send you some weeks prior to the Annual Review. Discuss the matter with your child’s class teacher and the SENCO, and ask them to include similar comments on their advice form. Ensure that any requested amendments to the statement are included in the report of the Annual Review, which is sent by the school to the LEA.
Incidentally, the Code of Practice requires that all parties attending an Annual Review should receive copies of all the ‘advices’ two weeks prior to the Annual Review. It is the head teacher’s responsibility to ensure this is done. This is to allow everyone, including parents, adequate time to read them thoroughly and understand what is being said about the child, and to follow up anything that may be contentious. It is clear that this does not always happen and we know of several instances where parents have received copies of advices the night before their child’s Annual Review and, in some cases, as they walk in to the room where the Annual Review is being held.
This is not acceptable and if it happens to you, you have every right to ask for an adjournment to give you the opportunity to read these important documents.
These are important issues and we will continue to monitor progress. Don’t forget, if you are not sure about anything or need advice - ask! You can phone Colin (051 494 2992) or me (0151 724 6540), if we don’t know the answer to your query, we will do our best to find out.
Pat Baxter
Treasurer, DSA Liverpool Branch
TRANSPORT
It has recently been brought to the attention of the Liverpool Branch that some families, who have a child with special educational needs, have received letters during the summer break telling them that their transport to school is being withdrawn by the Local Education Authority. This is very worrying because, clearly, it will make it extremely difficult for many parents to get their children to school.
If this has happened to you, we would like to know so
that we can pool information with other groups who may have families involved.
Please get in touch with our secretary if you have any information
about this matter. You can contact Mal Hill on:-
0151 494 2992, or
E-mail the Liverpool Branch at dsa.liverpoolbranch@virgin.net
KNOWSLEY
Within the county of Merseyside, we have Down’s Syndrome Association branches or groups in Liverpool, St. Helens, Sefton and Wirral but, as far as we know, nothing in Knowsley.
The Liverpool Branch currently has five Knowsley families who receive our newsletter but there must be many more families caring for someone with Down’s syndrome in that borough.
How about setting up a group in Knowsley? It makes sense when you consider that you come into contact with the same groups of ‘professionals’ such as the Local Education Authority, and could offer each other support.
Any of our Knowsley readers, who may be interested in
being put in touch with other families in the borough, can contact our
secretary, Mal Hill (0151 494 2992), who will do her best to help. Alternatively,
you could contact our Regional Development Co-ordinator, Eric Nicholas
(0151 737 1337), who would be happy to offer help and advice on setting
up a group.
NEW SCHOOL YEAR
The Liverpool Branch sends a newsletter to every school where we know a child with Down’s syndrome is being included. We have also sent copies of the excellent booklet “Including Pupils with Down’s Syndrome - Information for Teachers and Learning Support Assistants” to these schools.
It’s that time of year again, when some children will be starting school for the first time and others will be moving to a new school. If this applies to your child, it would be helpful if you could let me know so that I can check whether the school is on our mailing list, if not I will include them. I will also send a copy of the inclusion booklet to any new schools.
Pat Baxter - 0151 724 6540 or E-mail dsa.liverpoolbranch@virgin.net
WHERE TO GO?
WHAT TO DO?
Liverpool MENCAP have come up with a really helpful idea. They found that few families and carers had a list of places to go for days or evenings out so they decided to produce one of their own!
They say this is their first attempt and if anyone finds the odd error or two, please let them know and they will rectify it. Also, if anyone knows of any simpler and cheaper things that are worthwhile, let them know and they can be added to the list.
Apart from suggesting places to visit in and around Merseyside, the list gives details of cost, times of opening, where it is and whether food is available. The list is available free on disc, by post or E-mail.
Tel: 0151 226 6696 (answerphone outside office hours) or E-mail .mencap.liverpool@btopenworld.com
ACTION FOR TRANSITION
Action for Transition is a multi-agency project aiming
to improve the experience of transition from childhood to adulthood for
young people in Liverpool who have Special Educational Needs. It is funded
by the European Social Fund and led by Liverpool Community College with
Greater Merseyside Connexions, Liverpool Lifelong Learning Service, Health
Service, Liverpool Social Services and an active parent group, Partners
in Policy Making.
The aim of the project is to empower young people
and their families by providing better information through improved support
during the transition process, and to co-ordinate key agencies to work
more coherently together to enable young people to make valuable life choices.
The project held an extremely successful guidance/information event in March 2001 at Anfield, giving young people and their families the opportunity to meet with representatives from over 30 organisations offering advice and guidance. The plan is to make this an annual event and to organise other useful activities for young people, including taster days at Liverpool Community College.
The project is also engaged in research on the process
of transition for young people with Special Educational Needs. Data and
accounts of personal experiences are being gathered, with a view to producing
a needs analysis in order to develop more effective transition planning
for individuals and improve the system as a whole.
In addition, there is a Transition Handbook to
help young people and their families through the transition process, and
help them find and contact the resources available to them.
The Greater Merseyside Connexions Service, which has been in operation since September 2001, is involved in Transition in the following ways:
Participation in the Transition Review in Year 9 and subsequent
annual reviews.
Participation in the development and review of Careers
Education and Guidance Programmes in educational establishments.
Key role in the production and implementation of the
Transition Plan.
Placement of young people in appropriate post school
options.
Make arrangements for the transition of young people
from the Connexions Service at age 19 to adult services where appropriate
If you would like any more information please write to:
The Action for Transition Project
Liverpool Community College
Riversdale Centre
Riversdale Road
Liverpool
L19 3QR
Or phone:
Kathy Lewis (Project Manager) :
0151 252 4920
Pat Nunes (Inclusive Learning Officer): 0151 252 4919
Administrative Assistant :
0151 252 4789
DOWN SYNDROME IS CONTAGIOUS!
The following was sent to the Independent Downs UK Email list, the original author is unknown. You may find it amusing!
"Down syndrome is a genetic disorder characterised by
a triplication of the
genetic material on the 21st chromosome. This trisomy
occurs with the first division of the developing zygote, as a result there
is extra genetic material present in every cell of the individual.
Recently, science has discovered that this cellular abnormality is highly contagious. As a result, family members (and even friends) of individuals with Down syndrome, often find themselves exhibiting dramatic changes due to this "something extra" permeating their bodies at the cellular level. These changes manifest themselves in a number of ways.
Something extra in the visual cortex results in parents
who view the world
differently. In addition to seeing things in an entirely
new light, these parents also report having an increased ability to focus
on what is important. Spontaneous appearance of tears of joy have also
been confirmed.
The section of the brain used in logical thought undergoes
dramatic changes.
Parents suddenly find themselves able to comprehend and
discuss complex
medical procedures. The ability to decipher long strings
of acronyms appears almost immediately and it is not uncommon for affected
parents of newborns to be able to differentiate between ASD, VSD and PDA.
Familiarity with G-tubes, Pic lines and the NICU is another side effect.
Over time, the entire nervous system is transformed, enabling
parents to
perform tasks previously thought impossible. These changes
result in
individuals finding the nerve to advocate before large
crowds, speak to classrooms of medical students and educate the population
at large about
issues they are passionate about.
These changes are closely tied in to dysfunctions in the
verbal abilities, which makes it virtually impossible for parents to bite
their tongue. Often,
individuals who previously considered themselves reserved
will find
themselves outspoken and effective communicators.
The pulmonary system is altered to a dramatic extent.
Parents report having
their breath taken away at the slightest prompting. The
cardiovascular system develops similar vulnerabilities and reports of hearts
pounding loudly and swelling unexpectedly are not uncommon. One mother
reported that
her heart skipped a beat when her son smiled at her for
the first time.
The extremities are also altered. Arms reach out to strangers
for support,
and in turn, hands comfort and nurture those in need.
Legs strengthen and
balance improves, allowing parents to stand firm in their
convictions and
walk without faltering, even when shouldering a heavy
load. Scientists are baffled by the widespread scope of these symptoms.
Equally perplexing is the response of those afflicted.
Parents readily acknowledge fundamental changes
in their being and, almost universally, declare a preference
for their new, altered level of functioning. "I wouldn't change a thing,"
is a common refrain. Apparently, the presence of a little "something extra"
enhances the lives of individuals fortunate enough to be infected."
CUB CAMP 2002
Joe has been a member of 22nd Allerton Cub Scouts for just over 12 months and enjoys his Monday evening meetings with the rest of the pack.
The pack leaders (Akela and Baloo) told us that the boys would be going to cub camp on 21st June and that dads were invited to go along if they wanted to. Pat and I discussed it and decided that it would be good for Joe to go away to camp but it might be advisable for me to tag along, more to take the pressure and responsibility off the pack leaders than anything else. I did not feel out of place as several other dads decided to go as well.
Armed with holdalls and sleeping bags, we set off on a double decker bus for two nights under canvas at Merseyside District Scout Camp site at Tawd Vale near Ormskirk. We were accompanied by about seven other packs from the Allerton area.
When we arrived, the boys had to sort out their beds and ‘attempt’ to put their bags and clothing into some sort of order. After this, the packs had to assemble around the flag for prayers before changing into their ‘civilian’ clothes for a good game of football (dads included). Some boys took the opportunity to explore the site before eating their packed suppers and drinking hot chocolate. More football followed and then the boys got ready for bed. The dads and pack leaders sat out on a lovely evening and waited for the boys to settle down and go to sleep. We waited and waited and ............... eventually, at what must have been about 1.30 in the morning, all the boys were finally asleep. The adults turned in very shortly afterwards.
I was awakened at about 5.30 a.m. by Joe coming into the adults’ tent and shaking me. I took him back to his own tent and got him back to bed but knew that I would get no more sleep. We all got up and dressed ready for breakfast (I’ve never eaten eggy bread before), and then prepared for the day ahead.
The boys carried out several activities during the day
which ranged from fire lighting and canoeing, to archery and abseiling.
The only activities Joe did not join in with were the canoeing and raft
building because he has not got his level 2 cubs swimming badge, so he
was not eligible. He joined in with everything else and fully enjoyed them
all.
Well dad, we managed that. What’s next?
That night, everyone sat round the campfire and sang songs (yes, Ging Gang Gooley really does exist) before having burgers, hot chocolate and going to bed. All the boys crashed out quickly and slept all night.
After breakfast on the last morning, everyone was split
into teams for an orienteering exercise, which involved reading a map and
solving clues. This took most of the morning. Joe’s team came out as overall
winners and were each awarded a certificate.
We had lunch and then had to pack up the tents ready
for the journey home. This involved the most difficult activity of the
weekend, finding all the clothing and repatriating it with its owners,
but we succeeded.
The journey home started with campfire songs on the bus but ended up with a lot of boys fast asleep. Joe and I had a very enjoyable weekend and were totally exhausted at the end of it, nevertheless, we are really looking forward to next year.
Tony Baxter
DSA Liverpool Branch
(see photo on home page - ed)
2003 - EUROPEAN YEAR OF DISABLED PEOPLE
The key objectives will be -
DOWN’S HEART GROUP
Every so often we like to remind people about the Down’s Heart Group, especially new families who have joined us and may find the information useful.
The Down’s Heart Group is a UK charity which offers support and information to families who have a member with Down’s syndrome and a congenital heart defect. Everyone involved is themselves a parent (if not natural, then foster or adoptive) who have found it helpful to be in contact with other families.
If you would like to know more about the Down’s Heart
Group you can contact:-
Penny Green, Down’s Heart Group,
17 Cantilupe Close, Eaton Bray, Dunstable, Beds LU6 2EA
Tel: 01525 220379
Fax: 01525 221553
Web site:/www.downs-heart.downsnet.org/
SEN FORUM - AWARENESS DAY
The DSA Liverpool Branch, or Down’s Syndrome Liverpool as we may be by then, are hoping to have a table at this event. (See below for details.)
We could do with some helpers so, if you can lend a hand on the day, please let our secretary, Mal Hill, know. (0151 494 2992)
