WELCOME TO DOWN SYNDROME LIVERPOOL NEWSLETTER

As promised, this is the first edition of the DSL newsletter.

The format will be very much the same as the old Liverpool Branch newsletter but we hope that more of our members will be encouraged to contribute to it.

This is your newsletter and it would be brilliant if more articles from our membership could be included in it. They don’t have to be literary masterpieces (they would probably be too boring anyway).

If you have any news, views, ideas, items of interest, pictures or anything else which you would like to send in, please let us have them and we will make every effort to include them.

We will still try to keep you informed of items of interest and issues, both local and national, which can have an affect on our children, young people and adults with Down syndrome.

If you know of anyone who would like to become a member of DSL, please ask them to write to our Secretary who would be pleased to send out membership forms. Alternatively they can telephone or e-mail.
 

Tony Baxter
Editor,
DSL Newsletter
 

SPECIAL EDUCATIONAL NEEDS FORUM

For some years now, I have represented the DSA Liverpool Branch at meetings of the SEN Forum. It has been a useful way of keeping the branch up-to-date with what is happening in Liverpool with regard to SEN and of voicing concerns about provision for our children, such as speech therapy and transport, which were highlighted in recent issues of the newsletter.

I have now decided it is time for me to step down but, unfortunately, there is no-one on the committee able to take on the job of DSL representative to the SEN Forum.

The Forum meets once a month, alternately on a Monday and Friday at 9.30 a.m. The meetings usually take place at the offices of the Education and Lifelong Learning Service (Liverpool LEA) which is on the 4th floor above Lewis’s, and last for about 2 hours.  The SEN Forum is made up of parent representatives and professionals interested in special educational needs, and is usually attended by a representative  from the Education and Lifelong Learning Service.

If anyone feels they would like to represent Down Syndrome Liverpool at the SEN Forum, I would be more than happy to discuss it further. PLEASE give it some thought and, if you think you might have the time to take on this job, give me a call on 0151 724 6540.
Pat Baxter
Treasurer - DSL

SPEECH THERAPY

Many of you will remember the concerns we raised in previous newsletters about the lack of speech therapy provision for our children in secondary school. Even children with speech therapy written into part 3 of their statement were not receiving this service.

Colin Hill and I brought this issue to the attention of the SEN Forum and, through the Forum, to the attention of  Liverpool LEA.

We are pleased to report that meetings took place between the Health Authority, who provide speech therapists, and the LEA. The result is that the Health Authority are to appoint a speech therapist to work with secondary age pupils and the LEA will second or appoint a teacher and Education Support Assistant to form a team of three. We will keep you informed of any further developments.

Pat Baxter
Treasurer, DSL

CLASSIC CAR RUN

George Perera, the vicar of St. Hilda’s, Hunts Cross, is again taking part in a classic car run from Liverpool to the House of Lords on 5th July 2003 and is looking for sponsors.
All proceeds going to DSA National Office
If you are interested, phone him on
0151 486 1220 for more details.

Have you thought about making a will in favour of your child and about a trust to safeguard his/her inheritance? It may be something you do not like to think about or just haven’t got round to yet, but it is something we should all consider.

Liverpool Mencap have provided the following information on solicitors who specialise in this area :-

Mr. Hugh A.S. Jones
Pannone & Partners
123 Deansgate
Manchester M3 2BU
0161 909 3000 Tel
0161 909 4444 Fax

Mr. Jones will come to your home if necessary to advise you about the best plan for your needs.
Other solicitors are:-
 
 

Ms. Gaynor Lanceley                                        Mr. Michael Yates
Morecroft Urquhart                                           Maxwell, Entwistle & Byrne
2 Crown Way                                                    Turret House
Liverpool Road3                                                Chapel Lane
Crosby                                                               Formby
Merseyside L23 5SR                                          Merseyside L37 4DL
0151 924 9234                                                   01704 872 156
0151 931 3165
gl@morecroft.co.uk

Donations
 
 
 
 

DOWN’S HEART GROUP

The Down’s Heart Group has new contact details which are as follows:-

New local rate telephone number:
0845 166 8061
Email: info@dhg.org.uk
Website: www.dhg.org.uk
The address and fax remain the same:
Down’s Heart Group
17 Cantilupe Close, Eaton Bray
Dunstable, Beds LU6 2EA
Fax: 01525 221553

The following article appeared in the latest issue of Contact a Family North West newsletter and may be of interest to some of our readers:-

Another Grandparents group is being developed following a get-together organised by the PSS Family Resource Centre and Contact a Family. Fifteen grandparents shared photos and experiences of family life, and their pride and love for their children and grandchildren.

They are planning to meet every couple of months and would welcome other grandparents of children with any disability.

Further information from Helen Bray at PSS Family Resource Centre and Toy Library
Orthes Street
Liverpool L3 5XF
Tel: 0151 709 5946

The Down’s Syndrome Association has published a new Education Support Pack for schools, written by Stephanie Lorenz.

Eric  Nicholas, North West Regional Development Officer for the DSA, has copies available at £10 each, so if you are interested or think your child’s school may be interested, please contact Eric on 0151 737 1337.

THE COMMUNICATIONS AIDS PROJECT

Are you in contact with pupils who would benefit from using technology to support their spoken or written communication? If so, the Communication Aids Project may be able to help. Funded through the DfES, this project is seeking to help pupils who have communication difficulties by providing technology to:
enable them to access the curriculum and interact with others
support their transition to post school provision

What are communication difficulties?

This project is designed to help pupils who have difficulty in:
understanding language
communicating verbally
using written communication

Fortunately, there is a range of technological aids that can help communication, and the principal aim of this project is to identify and provide equipment which will meet pupil’s needs.

How the funding operates

The Communication Aids Project will run over two years and will provide £10m. It is intended to complement and add value to LEA and school funding by providing additional equipment and technology for pupils who have significant communication difficulties. LEAs and schools will still have obligations to identify and meet individual needs but where a pupil’s communication needs have been identified, CAP funding can be provided to cover extra resources and the training needed in how to use them.

CAP can provide funding for:
assessment of the pupil’s communication difficulties
equipment (hardware, software and peripherals)
training for teaching staff, the pupil and his/her parents in using equipment supplied.

Where appropriate, the LEA, school or other agency provides or negotiates funding for:
technical support
maintenance of equipment
insurance

How to apply

This project is managed by the British Educational Communications and Technology Agency (Becta). The project applies to England only and to pupils of school age who have significant communication difficulties. Applications to the Communication Aids Project  should be made to Becta, who will work, in conjunction with one of the six CAP Centres across the country, to provide support for the pupil.

To find out more about the project and the application process, see the web site  http://www.becta.org.uk/cap
telephone  024 7684 7173
e-mail  cap@ becta.org.uk

or write to:
The CAP Administrator
Becta
Millburn Hill Road Science Park
Coventry CV4 7JJ

HEALTH

Two helpful booklets concerning the health needs of people with Down syndrome are available from the Down’s Syndrome Association at a cost of £2.50 each.

Health - Looking After Yourself
has been written specifically for people with Down syndrome.

Promoting Health in People with Down’s Syndrome
has been written for carers with the aim of raising awareness of common medical conditions that are missed or misdiagnosed, often as a result of lack of communication or lack of availability of information about a person’s medical or life history.

Both booklets are available from:
The Down’s Syndrome Association
155 Mitcham Road,
London, SW17 9PG
Tel: 020 8682 4001
Fax: 020 8682 4012
Email: info@downs-syndrome.org.uk
Web site: www.downs-syndrome.org.uk
 

We are at that time of year again when LEAs will be producing statements of special educational needs for children starting school in September 2003. Schools should also be planning for annual reviews of  existing statements of special educational needs.

If you haven’t already done so, it is a good idea to get yourself a copy of the Special Educational Needs Code of Practice. The code provides practical advice to Local Education Authorities, maintained schools, early education settings and others on carrying out their duties to identify, assess and make provision for children’s special educational needs. It is also an invaluable reference document for parents which will not only help you understand what is required of the LEA and others involved in the education of your child, but will also help you ensure that your child receives the provision to which they are entitled.

Copies of the SEN Code of Practice can be obtained free from:
DfES Publications, PO Box 5050, Sherwood Park, Annesley, Nottinghamshire, NG15 0DJ
Tel: 0845 60 222 60
Fax: 0845 60 333 60
Email: dfes@prolog.uk.com

You may remember that we ran an article in the January issue of the Liverpool Branch Newsletter about Liverpool Independent Parental Supporters.

Edna Pye has contacted us to say that as from 1st April 2003, the scheme will be transferring into the LEA.

Her new contact address is:
Edna Pye
Parent Partnership
4 Renshaw Street
Liverpool L1 4NX
Tel: 0151 233 2848

FOOTBALL COACHING LATEST

Some of our budding football stars
 

The football coaching has proved to be very enjoyable for all the children who come. We have a steady attendance of about 8 or 9 children who turn up every week. It is noticeable how much the children’s skills have improved in such a short time. The only injuries have been to dads. Colin Hill put his back out ducking to avoid a ball, and Tony Baxter fell over and landed on his keys (sore leg, wounded pride, bent car key!).
 
 

Mossley Hill Athletic Club have been paying the full cost of hiring the gym for the first couple of months but have now informed us that the amount they pay will be reduced from 29th March. This means that we will now have to levy a small charge of £1.50 per child. A small amount to pay when you consider we have the use of a top class gym for a whole hour.

It would be nice to see more children, girls as well as boys, coming to these sessions and increasing their skill and fitness levels, but more importantly just enjoying themselves. Football kit or tracksuit bottoms and T shirts are ideal to wear together with training shoes.

Come and join us at The Greenbank Project Gymnasium, Greenbank Lane, Liverpool 17.  We have use of the gym between 10.00 a.m. and 11.00 a.m. every Saturday.

The coach, Alan Atkinson, can be contacted on 0151 724 6181 for more details.
 

All views expressed in this newsletter are the personal views of the contributors and do not necessarily represent the views of Down Syndrome Liverpool or the Down's Syndrome Association.

click here to return to home page.