Down's Syndrome AssociationLiverpool Branch Newsletter

  IMPORTANT NEWS
The following letter was received before Christmas, please read it very carefully as it has implications for the future of the DSA Liverpool Branch.

"DOWN'S SYNDROME ASSOCIATION  - Letter to all Branch/Group Chairpersons, Secretaries and Treasurers Dear Branch/Group Official,
The Future of Branches and Local Groups The first Branches and Groups were formed in the early 1970's to support the work of our Association and to provide valuable help and advice to parents in their local areas.

The creation of Branches and Groups has continued and expanded to the benefit of countless families and individuals throughout the country.
The DSA Trustees are keen that this excellent work should continue but are in the difficult situation that they could be personally responsible for local activities and funds over which they have no practical control.

At present, some prospective grant makers are discouraged from making generous donations to ensure the continued running of the national Association because they see huge sums in the accounts - but these are held by Branches and Groups and generally only available for local expenditure in the areas in which they were raised.

For these reasons, the Trustees are proposing significant changes to the Branch structure of the Association.

All Branches and Groups will be affected to a greater or lesser degree and all are required to decide the future arrangement which will best suit their Branch or Group.
We have to ask you to make these decisions in the next few months.

The Trustees wish to hand the Branches and Groups full responsibility and accountability for the work undertaken and funds raised and held by them. To do this, we envisage a network of affiliated groups, each with its own name and constitution.
Sample constitutions and guidance are available to you to help you through this change. Once you have gained your independence from the Association, you may have to register with the Charity Commission but after 2002 you will no longer have to send in your accounts for inclusion in the DSA national consolidated accounts.
If you register with the Charity Commission, you will be able to reclaim Gift Aid tax (from Inland Revenue) on donations and also on membership subscriptions if you decide to charge these.
 

Support and services to all DSA members will continue whether or not they join an affiliated group. Indeed, individual membership will continue as at present.
There are so many benefits available to yourselves and to the Association that we intend this change to be made as soon as possible so that you become independent during 2002.
Branch and Group leaders and committees will have greater freedom to plan projects that will benefit families, carers and individuals with Down's syndrome in your area, still with the support of our great national organisation.
We anticipate that you and your members will have questions to ask. Please read carefully the enclosed papers which may answer some of them. DSA staff are available at all times and, with Trustees, will be arranging regional meetings in January and February.
It is important for continuity and for providing the best service to new parents that all Branches and Groups keep national office informed about their progress.
Please complete and return the enclosed forms at the various stages to help everyone concerned. Yours sincerely,
Steve Maltby
Chairman "

NOTICE OF GENERAL MEETING
We were recently contacted by National Office (a copy of their letter appears above) regarding sweeping changes to the Branch structure.

In simple terms, it means that, in the very near future, Branches will have three choices.

The first is to become an independent charity in our own right, having full access to our present funds and running it ourselves.

The second choice is to become a ‘support' group and to send all our funds to National Office, retaining only enough to provide tea and coffee.

The final choice would be to cease to operate altogether and send all our funds to National Office.

Any choice, other than the first, would mean we could hold no workable sums of money.

This would mean no training courses, no events (including the Christmas party) and, in effect, no assistance other than a quick chat on the telephone in times of trouble.
After serious discussion, the committee has recommended that we opt for becoming an independent charity. Regardless of this, it is YOUR branch and it is YOUR decision.
We can only make recommendations. We are required to hold a general meeting to vote on this issue and it is, therefore, important that as many paid-up (voting) members of the DSA (i.e. pay their subs to London) as possible attend.
There are a minimum number of votes required to pass any resolution so your attendance could be crucial. If we do not have the required number of votes, your branch will have to close within the next 6 - 9 months.
The meeting will be held on

TUESDAY 12TH FEBRUARY, 7.45 P.M. at Dovedale Baptist Church Hall (entrance in Barndale Road off Dovedale Road, which runs between Penny Lane and Queens Drive Liverpool 18.) The resolution is that the DSA Liverpool Branch should agree to become a charity in it's own right - yes/no.

I look forward to seeing you at the meeting.
Colin Hill Chairperson.

CHRISTMAS PARTY 2001

Our Christmas party was well-attended this year with over 60 children and their families.

As the time came to start, there was no sign of the entertainer who had been booked some months before ( and confirmed three days before!).
Telephone calls were made (no reply - only the answering machine) and panic started to set in.

Two o'clock came and still no sign of Champers the clown!

A disco was hastily arranged using the equipment in the hall and a plea made on Radio Merseyside for an entertainer to help out but to no avail.
A ‘close' friend of Father Christmas offered to help out and, leaving his Sunday dinner, Mark Callister spent the afternoon entertaining the children (and adults) with his puppets. The children loved him.

Around 3.40 p.m., a bemused gentleman walked in and asked if this was the DSA party. Yes, you've guessed it, it was the entertainer. Apparently, he had gone to the wrong place, set up his equipment and eventually realised that something was not quite right as the place was still empty. A telephone call to his boss confirmed it. ................Oh dear!

We politely told him that he was no longer required!

As usual, the food was wonderful and in copious quantity.
Santa duly arrived and was assisted by our own David Keefe. It was a good party and we have booked the same venue for next year and, believe it or not, have also booked Waldo the Clown 12 months in advance. (But please see the previous article on the forthcoming general meeting).

Our sincerest thanks go to Mark Callister for his invaluable contribution to such a wonderful day.

Colin Hill
Chairperson

One of our Liverpool families has a child who, as well as having Down's syndrome, is also autistic.

They have asked us for help in trying to contact other families caring for a child with both conditions as they feel they could do with some extra support from someone who understands their situation.
If you feel you could help and would like to be put in touch with this family, please contact Pat Baxter on 0151 724 6540.

Information given would, of course, remain confidential.

D.L.A.

In recent months, members of the committee have received several queries about Disability Living Allowance (DLA).
Although it is now possible to claim DLA for a child with Down's syndrome from the age of 3 months, it would appear that some of our families have been refused this benefit whilst it has been awarded to others.
Benefits advice is available from the DSA National Office in London (see home page for address and telephone numbers etc.), and it would certainly be a good idea to give them a call if you are having problems.

The following article, which appeared in the Autumn 2001 issue of ‘CaF News' (the newsletter of Contact a Family North West), may also be of help........

"Disability Living Allowance, or DLA as it is better known, is the main benefit for children with disabilities.
It is paid regardless of how much you earn, or savings you have.
It does not count against any other benefits you receive and in some cases can actually increase them.
DLA is given in recognition that caring for a child with a disability places a much higher financial burden on families than if their child did not have a disability. Your child does not require a specific diagnosis, it is more about the extra help your child requires (even if they do not currently receive any) resulting from their disability.
Your child must have had the disability for 3 months before DLA is paid unless your child has a terminal illness.
If there is a chance your child may die in the next 6 months you do not have to fill out a DLA form and can claim DLA straight away (you do not have to wait 3 months) under Special Rules.

DLA is split into 2 sections, or components as they are known, and each is offered at various rates.
 

Care Component - children 3 months and over receive this if they need extra help with their personal care because of their disability. They may require help with washing, dressing, using the toilet, or need someone to keep an eye on them whilst performing these tasks. Offering verbal instructions can be seen as extra help.
There are 3 rates to the care component.

Mobility component - Children 3 years and over receive this if they need help in getting around. They may not be able to walk at all or have difficulties, be deaf or blind so need support when outdoors, or be unsafe walking unattended e.g. not recognise danger on the roads.
There are 2 rates to this component.

Always fill out both the care and mobility section as it is the DSS who decide the components and the rate you will receive.
Your application may show you are entitled to one even if you do not think you are. Applying for DLA....... Ask for a DLA Claim pack - form DLA1 Child (for children under 16 years).
These are available from any DSS office or the Benefits Enquiry Line 0800 882200.
In both cases they will be date stamped from the date you requested them which means that, if you are successful, DLA will be back dated to that date.
You have 6 weeks to complete the form and send it back.
Be aware! If you receive a form from anywhere else e.g. your local CAB, it is not dated and so you can only claim from the date when the form is received by the DSS office.

Claiming DLA can help with getting extra support.... if you get DLA you could be entitled to other benefits. These may include:

Invalid Care Allowance (ICA)
Disabled Child Premium or
Enhanced Disability Premium -

Family Fund (01904 621115) can help with a whole host of extras e.g. holidays, washing machine, driving lessons (currently your income cannot exceed £21,300 or your savings amount to more than £8,000 - these figures are reviewed each year).
Filling out the DLA form...

Preparation
Give it high priority, remember that rewards are made for several years at a time and most are worth several thousand pounds a year. Don't just give the diagnosis, DLA is about how your child's disability affects every day life. It is not asking what help you currently get but about the help you actually need with ordinary tasks.
Parents can underestimate how much they do for their child.
Tell them about the bad days.
Don't waste space saying what your child can do.
Write down in detail how your child manages at meals, bath times, bedtimes, at the shops etc.
Note all the adjustments to ordinary family life that you make to meet the extra demands of your child. Write down where help or supervision is needed even if it's just giving verbal instructions. Remember to keep saying in detail how your child's needs are greater than other children of the same age.
Make comparisons between younger non-disabled friends or siblings.
Give examples of where your child hasn't had help and the consequences e.g. where your child has misunderstood an instruction or been misunderstood.
Obtaining supporting evidence for night times can be difficult, but if you have been to your G.P. about problems sleeping or your child falls asleep in class , these can be some sort of corroboration. Get a supporting statement from someone who really knows your child for page 26 section 2 of the form.
Don't rely on anyone to send off your form.
Obtain a proof of posting.
Send supplementary evidence e.g. medical report but be careful about sending a school report as these can accentuate the positive.

Take photocopies!
It will help if you have to appeal and for when the time comes to renew your application.
If your application is rejected......don't despair! If you were not provided with reasons why you were rejected on the decision letter, contact the DSS office asking for written reasons for the rejection.
This needs to be done within 14 days of your decision.
You can ask for a reconsideration or appeal against the decision. This must be done within a month of the decision letter. If you are not happy with the reconsideration, you can still go ahead and appeal.
You have one month to appeal after the reconsideration decision.
Appeals are organised by the Appeals Service by way of a tribunal hearing.
Always get advice from your local CAB or Welfare Rights Officer.
Ask to attend the tribunal in person (more appeals are won when the person attends than if the papers are just reviewed).
It could be that your child's current needs are similar to those of other children who do not have a disability, but as they become older the differences may become more apparent.
So it may be a case of reapplying for DLA at a later stage.
If you want to know more...... contact the CaF help line on 0808 808 3555 which is available from Monday to Friday between 10 a.m. and 4 p.m.
We also recommend your local Citizens Advice Bureau (CAB) or Carers Centre if you need help filling in the form.
For a copy of the CaF NW Benefits Fact Sheet, write or call Mary McBride & Jenny Cowling, they will phone you back. Contact a Family North West, 8th Floor, St James House, Pendleton Way, Salford, M6 5FW tel: 0161 734 0700 fax: 0161 734 0711 or e-mail (click here)
  northwest@cafamily.org.uk

INCLUDING PUPILS WITH DOWN'S SYNDROME

Many of you will have seen the excellent booklets produced by the Down's Syndrome Association ‘Including Pupils with Down's Syndrome - Information for Teachers and Learning Support Assistants'.
The Liverpool Branch purchased several copies and sent one to the SENCO of every school on our mailing list.
We were aware that the DSA needed funding to produce another 10,000 copies of the booklet, 5,000 each of the Primary and Secondary versions.
Having found the booklet to be so useful, the Liverpool Branch agreed to provide the necessary funds.

A cheque for £3,500 was, therefore, sent to our National Office and should be acknowledged in the next issue of the national newsletter.
 

Chris Hill, Shauna Hogan and Joe Baxter with the cheque.

VALUING PEOPLE

‘Valuing People: A New Strategy for Learning Disability for the 21st Century' is a guide to the government's ideas on how to get services right for all people with learning disabilities.
This information is available in various formats i.e. booklet, audio tape and audio/digital CD.
For a free copy of whichever version you prefer, contact: Department of Health Publications PO Box 777 London SE1 6XH Fax: 01623 724524  e-mail (click here) at doh@prolog.uk.com

Please quote the following references when ordering: Booklet 24483. Audio tape 24543 Audio/digital CD 24542

G.U.V.H.
 

We have been contacted by Paul Daley of Garston Urban Village Hall to let us know about the facilities they have on offer.
G.U.V.H. provides health, educational and recreational opportunities to the community such as computer courses, mother and toddler groups, athletics, 50+ bowling, Ju Jitsu, Karate, sequence dancing and football coaching.
There is a coffee shop which is open Monday to Friday between 9.30.a.m. and 1.30 p.m.

Rooms are also available for hire for conferences, seminars, training with catering if required.

Paul tells us that G.U.V.H. intend to approach Sport England for funding to enable disabled groups to access the facilities and to participate in activities such as football, tennis, basketball, netball and bowls.

He will let us know if this bid is successful. In the meantime, if you would like to use these excellent facilities why not go along and have a look for yourself?
G.U.V.H. can be found at: 70 Banks Road Garston Liverpool L19 8JZ Phone: 0151 494 1611 Fax: 0151 494 3011 They also have a very good web site at www.sagenet.co.uk

SEN CODE OF PRACTICE

The new SEN Code of Practice came into force on 1st January 2002, it replaces the 1994 version.
The Code of Practice is essential reading for those of us with a child at school or coming up to school age.
To obtain a free copy contact the Department for Education and Skills (DfES) tel: 0845 6022260 fax: 0845 6033360 quoting reference 581/2001.
You should also request a Special Educational Needs (SEN) Tool Kit.

BEN

Meet 13 year old Ben Small who has been a member of Spartac Gymnastic Club for seven years.
The club, which is based at Edge Hill University College, Ormskirk, provides opportunities for young people with a disability to participate in gymnastics.
Ben has taken part in many competitions and won many silver and bronze medals.

In November 2001, he won seven silver medals at the National Finals in Nottingham.
Spartac Gymnastic Club has been given the honour of being selected to participate in the 2003 World Gymnaestrada in Lisbon, Portugal as part of the British National contingent.
The estimated size of the British squad is 3,000 gymnasts from clubs all over the country.
Spartac will be the only club taking gymnasts with disabilities and, like Ben, some have Down's syndrome.
This is particularly fitting as 2003 will be a celebration of 20 years of disabilities gymnastics in the UK.

Ben has been selected to go to Portugal as part of the Spartac squad and needs to raise £600 to fund his place in the team.
He has asked for our help.
Although, under charity law, we are unable to provide funding on an individual basis from our Branch funds, we wholeheartedly support Ben's venture and would actively encourage any of our readers who may be able to provide sponsorship, or hold a fund raising event, to contact Ben's mum and dad, Doreen and Mike, on 0151 281 8020.
Please help if you can!

GOOD LUCK BEN!

CARERS EMERGENCY CARD

The carers project within Local Solutions is committed to providing information for carers, and tackles issues that are important to them.

The Carers Emergency Card is in response to issues already raised by carers.
It is the size of a credit card, that can fit easily into a purse or wallet.
It provides carers with the reassurance that, should they have an accident while out alone and they are caring for someone, emergency co-ordinated assistance would be given.
This would avoid stress for both the carer and the person cared for.

To safeguard confidentiality, no personal details are given on the card.

Carers register with the scheme by completing a confidential registration form.
The details are held by VNC Lifeline, who currently offer 24 hour service.
If a carer has an accident, contact will be made with the Police, who are supporting the scheme and Lifeline, who will arrange emergency care in line with details given previously in the registration form.

To obtain a card:
Contact the Carers Development Worker at Local Solutions who will send you a registration form. Once you have completed the registration form, it is sent to VNC Lifeline.
All details on the form are confidential.
You will be sent your Carers Emergency Card with your personal identification number.
Ensure that you carry your card with you at all times and be reassured that in an emergency assistance will be arranged for the person being cared for.
Carers Emergency card is supported by: Liverpool Health Authority, Merseyside Police, VNC Lifeline.

The person to contact is:

Hazel Brown Carers Development Worker,
Local Solutions,
Mount Vernon Green,
Hall Lane,
Liverpool L7 8TF
tel: 0151 705 2422

PARENT PARTNERSHIP SERVICE

The Parent Partnership Service has grown from small beginnings in September 1994 to a full team of eight members of staff at present.

It is available to parents if they have children aged 0 - 19 years who they believe to have additional needs or have been told this is the case by the child's school.
The service will provide parents with full accurate information on parental rights and roles and responsibilities within the SEN process.
They can help parents understand the assessment process, assist with letter writing and completing forms and help parents work in partnership with schools and other organisations. They aim to provide parents with information about the options available to them so that they can make an informed decision about their child's future.
They will also offer links to support groups and voluntary organisations as well as providing training for parents and other groups.
The Service will not make decisions for parents - all they can do is outline the options available and where each of them may lead.
Parent Partnership will be holding a series of training sessions for parents which some of our readers may be interested in attending.
They are as follows:

Consideration of Assessment - Information for Parents and Carers.
These sessions will be held on a monthly basis. Please look out for the letter which should be sent to you if this session applies to you. If you do not receive a letter, phone for details.

Transfer to Secondary School - Parents and Carers of Year 6 Children.
These sessions will be held to inform parents of the issues to think about when considering a Secondary School for your child.
Issues regarding this important transition will be discussed and support for parents will be provided at all stages.
(N.B. In future, these sessions will be held for parents of Year 5 children as the new Code of Practice now requires that the important Transition Review be held at the end of Year 5. Parents need to be visiting secondary schools and making decisions during Year 5.)

Year 9 Review - Parents and Carers of Year 9 Children.
These sessions will be held to inform parents of the importance of the Year 9 Review. Parents and carers will be informed of the agencies involved in this review and how the review is valuable to their future provision.

DONATIONS

Cathy Chan & Helen Brooks                            £544

Cathy is an ESA, she supports a child with DS, Helen is a teacher. In October 2001, they ran in the Liverpool 10K on behalf of the DSA Liverpool Branch.

P.C. Steve Bettley Merseyside Police           £255
Steve did a sponsored bike ride.

Mrs Ena Foster of Salford.                               £100

Firefighter Stephen Kearney                            £10
Speke/Garston Fire Station.

Wandsworth Electrical Ltd.                            £250
Nominated from their charity fund by Alan Stubbs of Everton FC.

Sheilagh Higgins                                               £145
Donations in memory of her mother Mrs Catherine Spillane.