South West Thames  Branch   of the  Down's Syndrome Association DSA Logo 

Branch Annual General Meeting & Information Day, 27 April 2002


We held our Information Day (Open Day) and our AGM on 27 April 2002 in Purley(Surrey).
As in case of the Information days we held in previous years this Information Day too was packed with useful information (see programme). It was well attended and was an excellent opportunity to meet and exchange views with others as well as discuss matters with the speakers. The summary of some talks/workshops is given below.
Tape cassettes of some main speeches can be obtained. ( how ?)
(Information Day, April 2001) |
 (Information Day, May 2000) (Celebration)(Information Day April 1999)
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Summary of some talks at Information Day, 27 April 2002

S.E.N. & Disability Act 1981 ][ Employment Options and Preparation ][

Speech Therapy, talk by Tessa Duffy

Tessa Duffy is a private speech therapist with an 8-year-old son with Down's syndrome. She can be contacted on (01634) 244000 at her company called Symbol UK Ltd.
It is never too late to learn speech and language. The window of learning opportunity for children with Down's syndrome is much wider than for the rest of the population.

HOW CAN WE HELP TO DEVELOP COMMUNICATION SKILLS?

1) Minimize the effect of the syndrome

2) Having high expectations

3) Understanding the nature of their difficulties

The speech and language difficulties which children with Down's syndrome experience are specific and not general. If the Down's syndrome were taken away the child would still have a language problem. These problems can be predicted. Expressive language and speech production are hard for our children. As language improves so do other skills. There are problems in encoding and processing language but this changes if the child can 'see' language via signs, symbols and pictures. In fact, learning this way, a child with Down's syndrome can learn quicker than children without Down's syndrome. If a child has intervention then they will not develop the speech difficulties we associate with adults.
We must make sure that the child looks and listens all the time. It is very easy to learn not to listen if you keep getting the language and the information you glean from it wrong. There is a fundamental neurophysiological difference in the brain 'wiring' of a person with Down's syndrome. For example our brains might take three steps to encode a word, whilst our children's brains will need to take ten steps. There is therefore a time lag. This means of course that information needs to be given at a slower rate so as to give time for the brain processing to take place. Small sentences need to be used, as parts of long ones become lost. When new vocabulary is being learnt, lots of opportunity needs to be given to the child for using the new words. In this way the child can learn how the word sounds in their heads and how to make the sounds to produce the words.

4) Understanding their strengths

Most of our children have wonderful social interaction skills. They are interested in what other people are saying and are good at turn taking. They are also good at interpreting responses in others, reading body language and intention behind the words. Even without many speech and language skills our children are great communicators. They develop repair strategies. If we don't understand them the first time they will try again and again. Gesturing comes naturally to children with Down's syndrome, which helps them to learn signs and to use body language to communicate. The ability to imitate is a great strength when it comes to learning and this ability is very pronounced in our children.

5) What helps to develop our children's communication?

As mentioned before, anything that the child experiences helps to spark language. Our expectation that our children can communicate well if we give them encouragement will stimulate our children to try harder. Lots of visual communication (such as symbols and pictures) and gestures help with attaining language. Signing is a very useful tool to go back to if there is a lot of new vocabulary to be learnt and it is also helpful to use for emotional development. Symbols are effective when teaching sequencing, for example, when learning the days of the week or the course of a school day. Early reading really helps with language skills and grammar structures. Regular and targeted intervention is necessary. It used to be thought that it was better to wait and see how each child's language developed and then to work on production of sounds if there was a problem. However, there is a 95% chance that this will be a difficulty; so early sound work is very beneficial.
A child may have the word in their mind and know that a chair is called a chair but may not be able to produce the sounds to make the word. This makes us question the child's understanding when there is no such problem. For a longer word the syllables can be clapped out and the word or picture cut into the syllables to make sound production 'bite-sized'. When teaching verbs it is necessary to keep putting verbs in the sentences our children give us, modelling the correct sentence structure. Short, slow, complete sentences are better then just using key words. Make sure that your child is learning the appropriate vocabulary for their age group so that they can communicate with their peers and sign to help to develop sentence structure.


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John Pashley: S.E.N. & Disability Act 1981

John Pashley from Network 81 spoke on the Special Educational Needs and Disability Act 2001. Network 81 is a parent support network named after the Education Act 1981 which brought in assessment and statementing of children with special educational needs (S.E.N.). It was not a very open procedure and some parents got together to share information and experiences and to support others in this situation. Network 81 was set up when it got too big for the few parents running it to manage. They now have 35 trained volunteers, 6 full time staff and a training officer. They have a range of literature available and run a helpline amongst other things.
This new legislation started off with the booklet produced by the government in 1998 "Meeting Special Educational Needs: a programme for action". This was based on 5 things
  1. Working with parents (i.e. on their terms not on the L.E.A.'s);
  2. Improving the organisation and framework of special educational needs (not just the statementing process and the cost of it);
  3. Developing a more inclusive education system (the law has since changed to reflect this);
  4. Developing knowledge and skills (particularly in relation to support staff etc.);
  5. Co-ordination between agencies i.e. education. health and social services.
The Disability part of the Act (into force in September '02) says that
  1. it will be unlawful to discriminate against disabled pupils;
  2. there will be a duty on schools not to treat disabled pupils less favourably than non-disabled pupils;
  3. there will be a duty on schools to make reasonable adjustments for disabled pupils;
  4. there will be a duty on L.E.A.'s and schools to plan to increase access to schools for disabled pupils (both in the curriculum and physically);
  5. there will be an extended remit for the renamed S.E.N. and disability tribunal to include disability.
The changes in the law are reflected in the new accompanying Codes of Practice which should be read as being the law.
The changes in relation to Special Educational Needs (already in force) are as follows:-
  1. There must be a place for a child in a mainstream school if the parents want it.
  2. Schools must now inform parents if they believe the child has special educational needs.
  3. The formalising of parent / partnership schemes.
  4. A dispute system.
Removed from 1. above is the part about " efficient use of resources". Additional funding has been provided but there is to be scrutiny of how the existing funding is being used and has been ring fenced to a certain degree by it being accounted for in the schools funding policy; the Governors' report should define how S.E.N. money has been spent. (It cannot pay the SENCO's salary nor can it be used for adaptations).

John described how the five stages of the statementing procedure have been removed taking away the ladder effect. It is now called "School Action" and "School Action Plus" and must explain exactly how funding and resources are allocated to achieve a balance between independence and support. It is a legal requirement that review meetings include comments from the children concerned, particularly in Secondary schools with the aim of building independence. The Act also includes details to be included in a statutory referral. The timescales for statementing are not changed i.e.

It also states how a statement should be written with provision quantified -L.E.A.'s must not have a blanket policy that says "we don't quantify support". All the information contained in the document must be easily understood by all involved in the child's education including the parents.
Also included is the 14+ Connexion Service to link to other agencies and the tightening up of times in tribunals.
Perhaps we should be asking our schools and L.E.A.'s as to just how they have implemented these measures?
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Employment Options and Preparation for Employment

Sixteen members, including several young people with Down's syndrome, formed the workshop to hear Lin Woodcock from Sutton Mencap Pathway Employment Service.
Mrs. Woodcock explained that preparation for work is the same for everybody and it is never too soon to begin training. She described this preparation under four headings:

  1. Personal Presentation,
  2. Timing,
  3. Using Money,
  4. Travel.

Personal Presentation includes not only personal hygiene and appropriate and clean clothing but facial expressions and body language. The effect of emotions on the face can be discussed using a mirror. Parents were encouraged to discuss the reasons for frequent showering, tying back hair, when clothes should be changed, and lead their young adult to make choices themselves.

Timing is essential but tricky to learn. Encourage the estimation of time, for instance, how long does it take from getting up to being ready to leave home in the morning. Teach setting an alarm clock or booking an alarm call (which can be Mum knocking on the bedroom door at the agreed time). The importance of punctuality, with the consequences of not being punctual, should be understood including repeated lateness making it difficult to hold down a job. Judging the length of a coffee or lunch break needs guidance. For those who cannot tell the time, other signs will be needed.

Using money is possible even if the concept of numeracy and adding up are difficult. Security of purse and wallet need careful discussion as money will have to be carried for purchases required during the day. A bag about the person, and perhaps a secure locker at work will need to be understood. A bank account will be needed for earnings plus teaching where to get money, possibly the use of cash points or an identified person to ask. Cards must be kept secure, as well as mobile telephones.
Pathway recommend their trainees have their mobile phones security marked and do not use them in the street.

Travel training should start with finding safe places to cross roads such as light controlled or zebra crossings. It was thought the average eleven year old had the cognitive development to judge speed and space. Training to use buses and trains begins by accompanying the trainee several times, first sitting with them, then elsewhere on the vehicle, then possibly following by bike or car to check how they are progressing.
   If the bus breaks down or a train is cancelled, direct the trainee to ask the driver of the bus or someone in uniform at the station. The trainee might get off at the wrong stop, or forget to get off. Be ready to discuss what to do.
   A BT telephone card was recommended, or 20p coin selotaped to the bus pass or identification card. Make sure the trainee knows the full code number to telephone home, not just the local part of the number. For someone with limited speech, it was recommended they had a clearly printed card which gave their home address and telephone number and which could be shown to a policeman or other in authority who was being asked for help. It was suggested "Don't go with a stranger" could be a better long-term instruction than "Don't talk to a stranger". Advice, if lost, could be sought from a lady serving in a shop rather than a stranger on the street. It should be borne in mind that people with learning difficulties often continue to take instructions literally, even into adulthood.
   Mrs. Woodcock continued the discussion by describing some of the jobs done by people with learning difficulties. Mencap Pathway Service, and other similar organisations such as Status Employment in Croydon, provide a coach to learn the job from the prospective employer then teach it to the trainee. They have their induction into the firm together, including such information as procedure in case of fire. The employer teaches the coach once then the coach reinforces the teaching of the trainee for as long as necessary. The coach breaks each task down into very small steps for the trainee.
   A lady from a longstay hospital, who was being occupied in a Day Centre but enjoyed clothes, is now tidying coathangers and clothes after these have been tried on in a large store. A man in another store had done a variety of warehouse jobs well for seven years and asked for training to go on the till. He has so far not reached the necessary standard but the employer is offering to repeat the training every six months in the hope that the man with learning difficulties will achieve his goal. Others stick labels in new library books, assist with x-ray filming in a large hospital, and greatly enjoy sorting recyclable waste. Cleaning is required in all sorts of settings and these employees can try for an NVQ in cleaning. One client is the advocate for the residents in his group home. Others do a variety of office work including labelling, folding, packing and franking.
   Disability Living Allowance is not affected by earnings. £20 per week may be earned without affecting other benefits. It was strongly recommended that copies of all application forms relating to benefits be retained as much paperwork can be involved. Phraseology can be important so help should be sought from such organisations as Pathway or Status, or from the DSA. Not all recipients of applications understand that Down's syndrome is for life.
   Mrs. Woodcock had to leave a little early but her inspiring ideas were welcomed by all present and she was warmly thanked. The discussion continued as there were parents present with young people already in catering, self-advocacy and offices including use of computers.


AUDIO RESOURCES

Some talks in the S.W. Thames Branch's Branch Information Day, held on 27 April 2002 were recorded on tape. Some of our members and other interested people away from our area are unable to attend and some attendees like to have the information for their friends or themselves. We can offer cassette tapes (or audio CD) featuring the following speakers at these events. (See programme for the topic details.
Please contact our Hon.Branch Secretary by phone or email with your enquiries about the tapes and how to order and pay for them.
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