GMDSA
Greater Manchester Branch of the
Down's Syndrome Association
Reg. Charity 1061474

GMDSA UpDate Issue 15

The online version of the Newsletter of The Greater Manchester Down’s Syndrome Association

Some articles in the printed newsletter are protected by copyright so are not listed here

Down’s Syndrome Awareness Week 5-11th June 1999

This is the week that we all focus on raising the awareness of the general public about our aims and existence and at the same time try to do some fundraising to support the work of the DSA. There is plenty you can do as an individual. Do you have a story to tell which might gain publication in the local press? Do you know of a child who deserves recognition for some kind of achievement? What about a teacher or a classroom assistant for whom a pat on the back is long overdue? Is your school or college worth a mention? What about somebody engaged in successful employment? Our achievements are not only limited to children. Are you involved in a drama group? Let everyone read about your activities! And remember! a picture is worth 1000 words! Scouting, swimming, dancing, horse-riding, playing an instrument: - the opportunity for photo calls is endless and don’t forget your local radio station!

GMDSA AGM Monday June 7th 1999

The GMDSA AGM will be held on Monday 7th June at the Salvation Army Citadel, Ashton Lane, Sale, 7.15 for a 7.30 start. Refreshments will be provided but we do need to have some idea of numbers. Please let Karen Horton know if you are going to attend. A guest speaker will be provided for the evening, - this still has to be confirmed so we cannot give any more details yet. But be assured, you won’t be disappointed. The formal business doesn’t take long, and it’s a great opportunity to meet other members and have a chat. New faces are especially welcome and don’t worry, we don’t press-gang new recruits into office! See you there!

AN EVENING WITH JOHN LONGWORTH

On 22nd February 1999 several of us gathered at the Salvation Army Building in Sale to hear what John Longworth (of the solicitors' firm Bromley, Hyde and Robinson) had to tell us about making wills and trusts for our learning disabled child. John talked to us briefly about wills, but the focus of our questions was discretionary trusts (which can be set up in a will or before). There is a "problem" if a person aged 18 or over inherits/owns over Ł10,000 capital in their own name, because this reduces/eliminates their entitlement to state benefits. This is particularly relevant if the person is in sheltered accommodation because the local authority will not pay any of the fees if the person has over Ł16,000 in their name, and only a part of the fees if they own between Ł10,000 and Ł16,000. Hence a large legacy to the person with learning disabilities could be spent just providing board and lodging for the person without giving them perhaps the other holidays/purchases/treats that the person who has died had hoped to do. The answer is to set up a discretionary trust where the trustees hold the money and they release money to the person with learning disabilities as they consider appropriate. In this situation the money is deemed to belong to the trust and not to the person with learning disabilities and hence it can not be taken into account when calculating entitlement to benefits. If you think this seems complicated… it is!! But it is worth seriously considering before a person with learning disabilities acquires a significant amount of money. John Longworth suggested that if we wanted to find a local solicitor specialising in this kind of trust law, we should look in the telephone book to find the Law Society's number and ask them about specialist solicitors in the area. There is also John Longworth's firm (which he didn't market at all on the night) which is based in Ashton-under-Lyne.

Bromley Hyde & Robinson, 50 Wellington Road, Ashton-Under-Lyne. Tel. 0161 330 6821

Pearson Williams Case Continues...

Pearson Williams the Oldham based solicitors have yet again raised funds for the GMDSA. It seems that Rebecca has touched the hearts of many at Pearson Williams. Rebecca (pictured here) has a Grandma who works for the big hearted legal company. Members of the staff are keen to raise funds in a novel way for the GMDSA. The proceeds from a Tuck Shop raised Ł300 and this figure was matched by the Partners of Pearson Williams, resulting in a total donation of Ł600 for the GMDSA. Pat Hughes representing GMDSA is pictured on the left, together with one of the Partners, receiving the donation from the ‘Tuck Shop’. Rebecca’s Grandma is on the right.

Waving not Drowning - Combining working and caring:

PARENTS AT WORK’s Children with Disabilities Project by Janet Mearns, Network Co-ordinator. `Everyone thinks I'm mad but I'm going back to work' is what one mother of a child with autism said to me recently. I don't think she is mad. PARENTS AT WORK is an organisation that provides support and information to working parents and campaigns with employers for family friendly working practices. Realising that mothers of children with disabilities were in the position other mothers were in twenty years ago, i.e. no one expects them to go to work, the Children with Disabilities Project was set up in 1996. The project produces ‘Waving not Drowning’, a quarterly newsletter, and a national contact directory. The directory - names addresses and a few details about each family - goes to everyone who has an entry in it so parents can contact each other. The newsletter welcomes contributions of articles, letters and cartoons from readers and I try to include all the positive stories. I also keep readers informed about legislation and benefits which affect them. In 1997 the Waving not Drowning conference with a mix of nationally known speakers and workshops where parents could share ideas and experiences was oversubscribed, so we are busy fundraising so that we can hold another. Out of the conference came a report, Altering the Balance, overcoming the barriers to work for parents of disabled children, which we took to government. Parents need appropriate childcare which is also available to older children, flexible employment practices which allow time to take children to appointments or for crises, a benefit system which does not penalise people for working and an understanding from professionals such as healthcare workers and social workers that parents of disabled children are also members of the workforce, or would like to be! Our helpline is staffed Wednesdays to Fridays and I answer questions such as ‘How much can I earn and still claim Invalid Care Allowance?’ and ‘Are nannies trained in special needs?’ I was able to establish that a parent who had been told that childcare workers could not administer medication had been misinformed but I could not help the mother who wanted to offset her childcare costs against her part-time wages and still claim ICA because her child with cerebral palsy was best looked after in their own specially adapted home and there is no mechanism to register childcare in the child's own home. All the experience PARENTS AT WORK has gained is going into a guidebook we are writing to help parents combine working and caring for children with disabilities. As it is being written we are consulting with parents we are in touch with so that it will contain practical down to earth advice. Waving not Drowning, the newsletter, and entry in the contact directory are available free. Altering the Balance (summary) A4 sae. Full version Ł1 (inc. p&p) from: If you or some one you know want the newsletter on tape please contact me and I will arrange it.

Janet Mearns, PARENTS AT WORK, 45 Beech Street, London EC2Y 8AD, (Tel) 0171 628 3565, (Fax) 0171 628 3591, Helpline 0171 588 0802

November Conference for Teachers, Support Workers and Parents

Our next conference is going to tackle the topic of Educational Inclusion. Stephanie Lorenz a respected and well known figure working in this field is to be our main speaker. Although primarily designed for Teachers and Support Workers, interested parents will also find this a most informative event. The current trend in education is now focussing on Inclusion. More details to follow later on in the year.

Anyone for Tea?

Once again Pat Hughes is the hostess for our regular Awareness Week Garden Tea Party. Everyone is welcome to call between 2pm and 4pm on Saturday June 5th. Admission is Ł1 for adults and free for children. Come and sample the delicious home-baked biscuits, cakes and scones. There will be a Tombola and various hand-crafted items for sale. It’s all happening at: 1 Grove Road, Uppermill, Saddleworth.

A VISIT TO STOCKLEY FARM - 12th JUNE 1999

The venue for this year’s outing to celebrate DSA Awareness Week is Stockley Farm. We plan to meet in the car park at 11.30am and then go on the tractor ride to the farm together. We should have time to eat our picnics before the first feeding of the animals takes place at 1pm. There are lots of activities at the farm for everyone to enjoy. Children can feed the animals, stroke the rabbits, have a ride on a pony, play with and handle baby animals, and even watch the cows being milked. They can let off steam in the children's play area. There are indoor and outdoor picnic areas or if you prefer, a tea room. If you would like to join us, please send names and addresses of all those who are coming and the type of tickets required with a cheque made payable to GMDSA to arrive by Friday June 4th at the very latest, to: Karen Horton, 15 Cranmer Road, Didsbury, Manchester, M20 6AW.

If you would like more information please phone Karen on: 0161-438-0431

The cost is:

Adult Ł3.50**

Child with Down's Syndrome free**

Other child aged 3 or over Ł2.50**

Child under 3 free

Family tickets are available 2 adults and 2 children Ł11.00**

2 adults and 3 children Ł13.00**

** subsidised by the branch

I look forward to meeting you on 12 June 1999. Don't forget your wellies!!

Karen Horton

About Stockley Farm

A BIG WELCOME FOR ALL THE FAMILY

Stockley Farm is a modern working dairy farm of over 400 acres set in beautiful Cheshire countryside on the Arley Estate. There is a herd of Fresian/Holstein cows and visitors can watch them being milked from a viewing gallery alongside the computerised milking parlour Stockley Farm was first opened to the public in 1987 and is now a well known attraction and a very special day out for all the family. There are always baby animals for the children to handle and feed such as new born calves, piglets, goats, ducklings and rabbits. The adult animals are fascinating as well as being very tame. The friendly staff at Stockley are on hand to help children and tell them about the animals. And there's the popular straw bounce, a farm seasons display, miniature tractors to ride, pond dipping, the "let's make" corner, an adventure play area and much more. When all that is done, relax in our tea room or have a picnic. Even a baby's changing room is provided for your convenience. And finally don't forget the souvenir shop with its super range of inexpensive gifts.

GMDSA meetings

Meetings are held monthly at members homes. An open invitation is extended to anyone wishing to attend. Details of meetings are available from the Rogers or the Hortons. (see contact page)

Football Teams

A lot of interest has been expressed in organising a football team. Our ‘rival’ branch over in Merseyside has very good contacts with Manchester United and has organised several visits to Old Trafford. Any keen footballers, trainers or MUFC fans should contact the Rogers or Hortons (see contact page) so a meeting can be set up - or come along to the AGM.

GMDSA 100+ Club

GMDSA Bonds are still available for Ł12. You have three chances of winning a substantial cash prize over a twelve month period. Two prizes are awarded at each draw. Half the total money raised will be prize money. They can make good birthday presents for family or friends. It doesn’t matter when you buy them, they all have three chances of winning. Interested? Send a cheque made payable to GMDSA (Ł12 per bond) to: Pat Hughes, 100+ Club, 1 Grove Road , Uppermill , Oldham OL3 6JY . Reminders will be sent out for you to renew bonds when your bond has been entered three times.