Down's Syndrome Association Liverpool Branch Newsletter

As most of you are aware from the last newsletter, we were informed by National Office that sweeping changes to the branch structure were about to happen and that we were required to hold a General Meeting to ask our members the future of the Liverpool Branch.

We held a meeting on 12th February to discuss the way forward. It was recommended by your committee that the Liverpool Branch becomes an independent charity and this was voted on and passed unanimously.

What does this mean to you?

Becoming an independent charity will mean that we will have our own charity number and can make our own decisions on fund raising and expenditure (still under the Charity Laws of course).

As far as our members are concerned, there will be little change. We will still operate as usual but we will not have to refer to National Office for final decisions. We will still retain the link with the DSA and still continue to receive information on new members etc. as we do now.

We will, of course, have our own membership, which will be separate from membership of the DSA. You can decide to be a member of Down's Syndrome Liverpool (which will be our new name), The Down's Syndrome Association (which will now just be a single unit in London although still covering the whole country), both or neither. Further details will be sent to existing members in due course.

It is not envisaged that members of Down's Syndrome Liverpool will have to pay for membership, although the DSA will still charge their usual membership fee. We hope that all present members of the Liverpool Branch will continue to be members of the new charity.

National Office tells us they will be sending out a draft constitution within the next few weeks.  We will then be in a position to register with the charity commissioners, which will take a further few weeks. All being well, Down's Syndrome Liverpool should be up and running by the summer but we will keep you informed of progress.

When the change over happens, we will no longer be permitted to use the DSA logo or the name Down's Syndrome Association. We have, therefore, designed a new logo for Down's Syndrome Liverpool, and have a new web site address on the Internet, which is: - www.ds-liverpool.org.uk - don't forget to add this to your favourites/bookmarks if you have web access. Our new e-mail address will be ds.liverpool@virgin.net. The existing details will remain valid for some time yet though.

This is a challenging time for us all and we look forward to your continuing support.

Colin W Hill,

Chair, DSA Liverpool Branch

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RED ALERT!

We began making inquiries to the LEA, SENISS and various speech and language departments. All said that they were not aware of any provision for speech therapy once a child moved to their new school.

The branch is making further inquiries into this but I want to alert parents to read their child's statement and to ensure that speech therapy is in the correct section. Liverpool has, for years, put speech therapy into Parts 5 and 6 of the statement and not Part 3.  The LEA does not have to ensure provision if it is under Parts 5 & 6 (non-educational provision) whereas under Part 3 (educational provision) they do.

The code of practice makes things very clear:

"Case law has established that speech and language therapy can be regarded as either educational or non-educational provision, or both, depending upon the health or development of the child. It could therefore appear in either Part 3 or part 6 of the statement or in both. However, since communication is so fundamental in learning and progression, addressing speech and language impairment should normally be recorded as educational provision unless there are exceptional reasons for not doing so." (Paragraph 8:49)

If the provision is under Part 3, the LEA has a legal duty to ensure provision is made, even if it takes a court case to enforce it, but under Parts 5 & 6 they don't.

"Where the NHS does not provide speech and language therapy for a child whose statement specifies such therapy as educational provision, ultimate responsibility for ensuring that the provision is made rests with the LEA." (Code of Practice Paragraph 8:51)

Whilst your branch takes up this matter, please help your children and us by checking and, if necessary, insisting that speech therapy is put into the correct part of the statement i.e. Part 3 - Educational Provision. The Code of Practice also states:

"Provision should normally be quantified (e.g. in terms of hours of provision, staffing arrangements) ........... LEAs must not, in any circumstances, have blanket policies not to quantify provision." (Paragraph 8:37).

It is no longer acceptable for LEAs to use loose phrases such as, "With advice and support of a speech therapist." Provision should be clearly quantified in a statement.

I cannot emphasise how important this is. Protect your child's rights and, if necessary, telephone or write to the LEA about provision in secondary schools. The more fuss we make, the more likely they are to ensure that our children's rights are upheld. If anyone would like more help or information on their child's statement regarding this, please telephone either myself on: -
0151 494 2992 or
Pat Baxter on: - 0151 724 6540.

Thank you for your support.

Colin Hill,
Chair, DSA Liverpool Branch

Press Release
123/02
10 April 2002

CONSULTATION ON GUIDANCE FOR MENTALLY INCAPACITATED ADULTS AND THOSE WHO MAKE DECISIONS ON THEIR BEHALF

The Lord Chancellor's Department has today published a consultation paper seeking comments on a pack of leaflets, which give guidance in respect of adults who, due to mental incapacity, may need support to make decisions and also for those involved in caring for them.

The consultation paper containing the guidance leaflets, 'Making Decisions: helping people who have difficulty deciding for themselves', will give advice and examples of best practice to people who may find themselves having to make decisions on behalf of mentally incapacitated adults. The leaflets are also aimed at people who have learning difficulties and who wish to maximize their independence as well as anyone who may wish to plan for a possible loss of mental capacity later in life.

All six leaflets will offer advice and point readers to sources of further information on a range of topics including financial decision making, access to legal advice and giving consent to medical treatment. The guidance will set out the current law with regard to decision making on behalf of mentally incapacitated adults, although it is anticipated that the guidance will evolve over time to reflect future changes in law and policy affecting people who lack capacity.

The guidance has been formulated with the aid of close co-operation between the Lord Chancellor's Department and a broad range of interested groups. These include voluntary sector organisations representing people with learning disabilities, older people and those with mental health problems, carers' organisations and professional bodies in the areas of healthcare and the law. The Department is very grateful to all these groups for their help in taking this work forward.

There are six leaflets each aimed at a specific group of people, namely: carers and relatives, health professionals, social care professionals, legal professionals, people with learning difficulties and those wishing to plan for a possible loss of mental capacity in the future. All members of these groups are invited to give their views on whether:
 

- The information contained in the guidance is useful

- There are any other issues that should be included in the guidance.

- The guidance is easy to read and understand.

- The guidance is set out in a way that makes it easy to use.

- The sources of further information are helpful.

- Respondents have any views on how the guidance should be distributed so that it reaches relevant people.

Responses to the consultation are sought by 9 July 2002.

 Please note:

1. The consultation paper containing the guidance leaflets gives advice on decision making within the current legal framework and aims to clarify existing legislation and relevant common law principles.   However, it is anticipated that the guidance leaflets will set the scene for future legislation in this area by identifying important issues faced by mentally incapacitated adults and those that care for them.

2. The consultation paper is available on the LCD website: http://www.lcd.gov.uk

3. Members of the public and relevant professions may obtain paper copies of the consultation paper from Virginia Gray tel: 020 7210 0751.

Editor's Note
The above was sent in an e-mail to the Liverpool Branch and is reproduced in full.

The Liverpool Portage Service would like to remind everyone of their new address and telephone number which are as follows: -

Liverpool Portage Service,
C/O Harold Magnay School Site
Woolton Hill Road
Liverpool L25 6JA
Tel: - 0151 233 1619
Fax: - 0151 233 1646

PALS stands for Parent Advice and Liaison Service. It was introduced in the NHS Plan in July 2000 to be operational by April 2002.

The Royal Liverpool Children's NHS Trust (Alder Hey) now has a PALS scheme up and running. The Trust aims to ensure that you and your child receive the best possible care at Alder Hey. When your child has to visit or stay in hospital it is likely to be a worrying time and it may be confusing trying to work out who to talk to, especially if you feel things are not going right.

This is where PALS comes in. The Patient Advice and Liaison Service is there to listen, in confidence, to any comments or concerns you may have about the care your child is receiving or any aspect of the service provided at Alder Hey.

What can they do?
 

Ø Support you in making your concerns heard

Ø Help to resolve any difficulties you may experience

Ø If necessary, advise you of the complaints procedure and assist you in making a complaint

Ø Provide you with information as to how you can be more involved, alongside other parents, in influencing how services at Alder Hey are developed in the future.

PALS is based on Cherry Wing which is on the first floor of the hospital, between wards F2 and L2 - look for the blue PALS sign. You can call into the office, telephone or write. Alternatively, you can ask a member of staff to contact PALS on your behalf and arrangements can be made to see you on the ward, at a clinic or elsewhere if you prefer. The office is open from 9am - 5pm, Monday to Friday but arrangements can be made to see you outside these hours.

Contact details are as follows: -
Jean Pownceby
Senior PALS Officer

Sue McQueen
PALS Officer

PALS Office, Cherry Wing,
Royal Liverpool Children's NHS Trust
Alder Hey,
Eaton Road,
Liverpool L12 2AP

Freephone: - 0800 7832590
Internal dial: - 2976
Fax: - 0151 293 3554
Email: - PALS@rlch-tr.nwest.nhs.uk

Grid Club is an education web site launched last year by the Department for Education and Skills (DfES) in conjunction with Channel 4 Learning. It has already proved itself to be a critical success and has won an education Bafta and an Emma, the multimedia worlds equivalent of the Oscars.

The site is for children aged 7 to 11 and has clubs based around interests such as animals and sport, there are jokes, snippets of news and tools to help you build your own web site. The site links into themes from the national curriculum at Key Stage 2 (KS2), i.e. junior level, thus helping to enrich its educational value at the same time as being fun to use.

To find out more go to: -www.gridclub.com

The Down Syndrome Educational Trust is a charity based in the United Kingdom, that works to advance the development and education of individuals with Down syndrome. The Down Syndrome Educational Trust is a recognised world leader in research into the cognitive development and education of children with Down syndrome. Building on this foundation of scientific research, the Trust publishes information and practical guidance, organises conferences and workshops, and provides advisory and consultancy services for families and professionals concerned with the care and development of people with Down syndrome.

The Trust's new Resources Catalogue and Services Catalogue are now available. The Resources Catalogue has been updated to include the new Down Syndrome Issues and Information series, and additional books and teaching materials. The Services Brochure provides information about workshops at The Sarah Duffen Centre, the Trust's assessment and consultancy services, Early Development Groups and visiting workshops and lectures services.

The new brochures can be requested by calling the Trust or e-mailing as follows:-

Tel: - 023 9285 5330
Fax: - 023 9285 5320
E-mail: - brochures@downsed.org
The Trust is also hoping to have an online request form available on their web site in the near future: - http://www.downsed.org/

Merseyside Partners in Policymaking are a group of disabled self-advocates and parents of disabled children who have completed a course called 'Partners in Policymaking'.

They provide training through the Partners in Policymaking programme for parents of disabled children and disabled self-advocates. They offer support group meetings where parents can meet and gain up-to-date information on issues around children's Special Educational Needs.

They also put on short training courses to help parents understand their rights; to enable parents as they gain knowledge. Training is also offered on disability equality and parents' perspective, and the perspective of disabled people. There is also a development worker to engage with professionals who wish to discuss disability issues and inclusion.

Merseyside Partners in Policymaking will be running a new course in the near future and are looking for recruits.  The course is intended to enable participants to: -
 

Ø Be aware of options and possibilities in different areas of people's lives so that they are as knowledgeable as the supposed experts on state of the art thinking and practice are.

Ø Contribute to policymaking and implementation in wider service development, locally and nationally.

Ø Become real partners with the professionals and the policy makers.

Ø Have the confidence and competence to influence decisions about services and negotiate much more successfully when decisions are made about what is needed.

Ø Make informed decisions on what help, services and resources they need for themselves or their children.
Ø Support and guide other service users and carers.

Ø Contribute to the training of service providers, planners and policy makers.

Ø Prepare the participants for the battles ahead with much greater chances of success.

If you are interested contact: -

Merseyside Partners in Policymaking,
New Century Halls,
Heathcote Road,
Liverpool L4 6XB
Tel: - 0151 287 7977
Fax: - 0151 222 3694
E-mail: merseysidepartners@policymaking.fsmnet.co.uk

As parents we are all aware of the need to provide our children with opportunities to explore the world through play. Those of us who have a child with Down's syndrome are, perhaps, more conscious of the need to provide stimulating and entertaining play materials which will help our child reach his/her full potential. It is all too easy, especially in the early days, to rush out and buy lots of expensive toys in the hope that they will help our child learn.

My son, Joe, is now 9 years old (doesn't time fly when you are having fun?) and I expect, like me, many parents have bought a toy, only to discover that their child would rather play with the box or the wrapping paper. When Joe was a baby we attended various talks and workshops to do with Down's syndrome, and picked up some good ideas for simple and inexpensive play materials. I thought some of these ideas might be useful, especially to our newer families so here goes!

v A brightly coloured picture, perhaps a Christmas or birthday card, tucked against the inside of a baby's carry cot or Moses basket where they can see it, is a bit more interesting than looking at the blank sides of the cot.

v Lie the baby on a sheet of wrapping paper, the metallic sort is good, this makes a nice crinkly sound when the baby moves about.

v Plastic bottles and jars make good rattles. Fill them with anything that will make a noise e.g. rice, dried pulses, buttons, pasta and make sure the tops are well secured with tape or adhesive.

v Saucepans and empty biscuit tins make lovely drums. Use wooden spoons or plastic spatulas for drumsticks.

v 'The Touchy Feely Box'.  This was a box filled with various things, many found around the house, which would encourage the child's sense of touch. For example, brushes of different sorts, a soft duster, Jay cloth, pan scrubber, bath sponge, pine cone, teaspoon, wooden spoon - the possibilities are endless.

v A box of shredded paper was a great favourite with Joe. If you know someone who works in an office ask him or her to get some for you. Joe used to have great fun sitting in the midst of the paper and throwing it around. Not only did it feel good; it made a lovely rustling noise.

v Cornflour makes a lovely squiggy mess. Place some cornflour on a tray, add some water (not too much) and dabble! If there is any left at the end of the session, leave it on the tray and it will dry out to be used again.

These are just a few ideas, if you have any others please let me know (at the branch address) so that we can share them with other parents. It goes without saying that anything you give your child should be clean and safe and used under supervision. Apart from that, just have fun and never mind the mess!!

Pat Baxter - DSA Liverpool Branch

Saturday 8th June 2002 is at the end of Awareness Week for the DSA. It is also the day that hundreds of our children, parents, families and friends from DSA branches throughout the North West will come together at our annual day out at CAMELOT.

Join us at the incredibly reduced price of £6.00 (children under 1 metre get in free)
A great time for all with old friends and new friends - looking forward to seeing you.
£6 each can add up to a lot for some families - please contact us in confidence.

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Booking Form                        (Please copy and print this section if required.).
Camelot - Saturday 8th June 2002

NAME ……………………………………………………………………..........

ADDRESS ……………………………………………………………………

  ……………………………………………………………………

  ……………………………………………………………………

PHONE ………………………………………….

Number of tickets @ £6.00 each  ……….    Total cost   £  …………….

CHILDREN UNDER 1 METRE TALL ADMITTED FREE OF CHARGE

Number of free children  ……………..

Please make cheques payable to Down's Syndrome Association.
Return forms with payment to Down's Syndrome Association,
 C/o Mencap House, Lowerson Road, Liverpool L11 8LW.

(0151 226 5158)