Contact A Family - Connected Newsletter

The magazine for families with disabled children and all those who work with them

Autumn 2009

The road to victory How one family has been fighting to get mobility benefits for disabled toddlers All round wellness Keeping you and your family healthy

Child Trust Fund Extra payments for disabled children

New Every Disabled Child Matters report Highlighting NHS failings Incorporating The Lady Hoare Trust

From our Chief Executive

Contents

Helping to shape change

Contact a Family 209-211 City Road, London EC1V 1JN Tel: 020 7608 8700, Fax: 020 7608 8701 e-mail: [email protected] Contact a Family Northern Ireland The Bridge Community Centre, Railway Street Lisburn BT28 1XP Tel/Fax 028 9262 7552 e-mail: [email protected] Contact a Family Scotland Craigmillar Social Enterprise & Arts Centre 11/9 Harewood Road, Edinburgh EH16 4NT Tel: 0131 659 2930 e-mail: [email protected] Contact a Family Cymru 33-35 Cathedral Road, Cardiff CF11 9HB Tel: 029 2039 6624, Fax: 029 2039 6625 e-mail: [email protected] Contact a Family Cornwall Tel: 01209 821 485 e-mail: [email protected] Contact a Family North East England Region The Dene Centre, Castle Farm Road Newcastle upon Tyne NE3 1PH Tel/Fax: 0191 213 6300 e-mail: [email protected] Contact a Family North West England Region 6th Floor, St. James House Pendleton Way, Salford M6 5FW Tel: 0161 743 0700, Fax: 0161 743 0711 e-mail: [email protected] Contact a Family West Midlands Region Prospect Hall, 12 College Walk Selly Oak, Birmingham B29 6LE Contact a Family Ealing Room 3, 1st Floor, St. Andrews Church Centre Mount Park Road, London W5 2RS Tel: 020 8810 8151 e-mail: [email protected] Contact a Family Lambeth Lambeth Accord, 4th Floor, 336 Brixton Road SW9 7AA Tel: 020 7326 5270 e-mail: [email protected] Contact a Family Lewisham 1 Forman House, Frendsbury Road London SE4 2LB Tel: 020 7635 6333 Fax: 020 7732 8494 e-mail: [email protected] Contact a Family Southall St. Georges Community Centre 8-12 Lancaster Road, Southall UB1 1NW Tel: 020 8571 6381 Fax: 020 8571 6400 e-mail: [email protected] Contact a Family Southwark 54 Camberwell Road, London SE5 0EN Tel: 020 7277 4436 Fax: 020 7703 6449 e-mail: [email protected] Contact a Family Sutton and Merton Hill House, St Hellier Community Association Bishopsford Road, Morden SM4 6BL Tel: 020 8640 5525 Fax: 020 8640 7799 e-mail: [email protected] Contact a Family Wandsworth 1 Siward Road, London SW17 0LA Tel: 020 8947 5260 Fax: 020 8947 9506 e-mail: [email protected] www.cafamily.org.uk Helpline: 0808 808 3555

 Connected Autumn 2009

4

“Keep us in mind Tam”

9

Child Trust Fund money

15

Srabani Sen, Chief Executive at Contact a Family gives an update on what the Centre for Excellence and Outcomes, and the Commissioning Support Programme are doing to support our families

Brainwave programme

From our Chief Executive 3

Srabani Sen: Helping to shape change

Contact a Family 4

30th anniversary celebrations: Get out and about for our big day out

4

“Keep us in mind Tam”: Sending a message to new commissioner

5

Fighting fuel poverty: Support our campaign

5

Getting your views across: Feeding in on future of nursing and midwifery

6

News in brief: Round up of latest Contact a Family news

7

Fundraising feats: Raising money for our vital work across the UK

Support groups 8

Finding the right funding: Tips on raising money for your support group

Benefit news 9

Child Trust Fund payments: Extra money for disabled children

Other news 10

The road to victory: Fighting to get mobility benefit for disabled toddlers

11

Disabled children and health: New report highlights NHS failings

12

Disabled children’s services national indicator: Progress update

Healthy living and well being 13

Focus on all round wellness: Introducing this edition’s theme

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MEND programme: Helping to get children fit and healthy

14

Carrot and stick: How one parent gets her child moving

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Brainwave: How one family have benefited from specialist centre

16

Staying healthy: Tips and resources for you and your family

16

Finding a little ‘me’ time: Making sure you look after yourself

Resources 18

Book review

19

A day in the life: Find out more about our Volunteer Parent Representatives

Connected information Edited by: Karin Beeler, Elaine Bennett, Natalie Ridgway and Yvonne McGahren e-mail: [email protected] Design and layout by: Natalie Ridgway Note: Although great care has been taken in the compilation and preparation of this magazine to ensure accuracy, Contact a Family cannot take any responsibility for any errors or omissions. © Contact a Family 2009 Next issue: The Winter edition of Connected will be published in November. We are always interested in stories, especially from parents. If you would like to contribute, please submit articles of up to 750 words. e-mail: [email protected] The deadline is 14th October 2009.

I hope you are having a very happy summer and have been able to make the most of the sunshine – when we have had it! If you are one of the many parents involved in trying to influence people who plan local authority and primary care trust services for disabled children in England, there are two things you might want to know more about. Centre for Excellence and Outcomes The first is the Centre for Excellence and Outcomes. This organisation was set up by central government to pull together in one place the evidence of what works to improve the lives of some of the most disadvantaged children in England. Disabled children are one of the groups that the Centre, often known as C4EO, are looking at. C4EO has done some initial work to collate all the data available on disabled children and to look at the academic research on three areas in relation to disabled children: early years, providing positive experiences for disabled children, and ensuring that services meet the diverse needs of disabled children.

“Why not point out the work of C4EO to your local service commissioners and planners and encourage them to bring in a sector specialist.” C4EO have employed what they are calling ‘sector specialists’ to help Primary Care Trusts (PCTs), local authorities and children’s trusts improve their work

with and for disabled children and their families. But PCTs, local authorities and children’s trusts have to ask for their help. If you are involved in influencing local services in England, you may want to check out the work of C4EO, which you can do at their website, Web: http://www.c4eo.org.uk/disability

• make a positive contribution • achieve economic well-being.

If you think it is useful, why not point out the work of C4EO to your local service commissioners and planners and encourage them to bring in a sector specialist.

Campaigning news across the UK Things are also very busy on the campaign front. In Scotland, For Scotland’s Disabled Children are holding a launch event as well as upping their campaigning efforts. In Wales, Disabled Children Matter Wales has been actively involved in lobbying on wheelchairs and has been very successful at securing media coverage of the issues. In Northern Ireland, the Children with Disabilities Strategic Alliance has produced a manifesto. In England, Every Disabled Child Matters has been actively trying to influence the main political parties’ general election manifestos to make sure that disabled children are a priority.

One of the things on C4EO’s website is a ‘community of practice’ where anyone can go on and post their views about what works to improve the lives of and services for disabled children and their families. Feel free to put something up yourself. The more parents that get their views across the better. Commissioning Support Programme Another thing you might be interested in if you are involved in influencing local service planners is the work of the Department of Health and the Department for Children, Schools and Families, to improve the way that services are commissioned. This is being done through the Commissioning Support Programme. Services for disabled children is one of the first areas they are looking at. You can find out more about this at Web: http://www. commissioningsupport.org.uk/ The Commissioning Support Programme aims, through better commissioning of services, to improve outcomes for children under the five headings of Every Child Matters: • be healthy • stay safe • enjoy and achieve

Tailor-made support will be available to help commissioners do a better job. Again, you might want to remind any commissioners that you come into contact with about this programme.

Summer celebrations And now the fun stuff! As you will probably have picked up by now, this is our 30th anniversary year. All through the summer we are organising a series of fun events to celebrate our birthday, and I know that many of you are getting involved. If you want to organise something yourself, we have developed a handy toolkit with some ideas of things you could do. To find it visit our website or download the PDF at Web: http://www.cafamily.org.uk/big_ day_out_toolkit.pdf Whatever you get up to I wish you a happy summer. Srabani Sen Connected Autumn 2009 

Contact a Family – News

Contact a Family – News

As part of Contact a Family’s 30th birthday celebrations, we are holding Big Day Out events this summer to encourage families with disabled children to get out and about and enjoy play and leisure together. Claire Pimm, Contact a Family’s Director of Policy and Communications, said: “Our latest research shows that the opportunity to enjoy play and leisure together for families with disabled children is poor or unsatisfactory. “The Big Day Out hopes to change that and we would like to see as many families as possible outdoors and taking part in a picnic together, visiting a local attraction, going to the beach or nearby beauty spot or popping along to your nearest cinema.”

Get out and about for our Big Day Out

Calling all families affected by fuel poverty — support our campaign

Celebrate our 30th anniversary using our Big Day Out Toolkit

Contact a Family is working with Consumer Focus to help families with disabled children struggling to pay their fuel bills

Contact a Family has developed a toolkit to help families across the UK organise a Big Day Out Picnic – a simple and inexpensive way of enjoying play and leisure time together as a family.

Contact a Family is urging families who spend 10 per cent or more of the household income on electricity and gas bills to get in touch and to tell us your experiences. Your stories will help us campaign to improve the situation for many other families in the same position.

giving scheme to make homes warmer, more energy efficient and help reduce bills. We believe all families with disabled children should be given access to the scheme.

Claire Pimm, Director of Policy and Communications, said: “We often hear from families about the difficulties they have paying for heating bills. There are many conditions and disabilities which worsen in the cold weather or require electrical equipment for care. This means families with disabled children are more likely to live in fuel poverty and we want the government to introduce measures to help them.”

We will also be calling for families with disabled children on income support to be given the cheapest fuel rates from energy suppliers. We would like to see social tariffs being opened up to all those in receipt of Cold Weather Payments including families with disabled children on income support.

“We want to encourage families with disabled children to get out and about and enjoy play and leisure together.”

covering your costs and fundraising for Contact a Family. If you’d like to take part in the Big Day Out and organise a picnic with friends and families you can download the Big Day Out toolkit from our website. Web: http://www.cafamily.org.uk/big_day_out_ toolkit.pdf

The toolkit includes hints and tips for organising your Big Day Out Picnic as well as games ideas for children and adults to enjoy during the picnic, delicious recipes and suggestions for

“Keep us in mind Tam” Scotland’s disabled children deliver message to new Children’s Commissioner

Finola and Tam, with her painting Contact a Family Scotland and representatives of Scotland’s disabled children delivered an important message to the new Children’s Commissioner recently. Tam Baillie was appointed Scotland’s Commissioner for Children and Young People in May, taking over from Kathleen Marshall. In July, Finola Forman, 17, and Adam Bojelian, 9, visited Mr Baillie with a welcoming card from Contact a Family Scotland. The card – a painting of Edinburgh Castle – was painted by Finola, who has Cerebral Palsy. And inside  Connected Autumn 2009

the message “Keep us in mind Tam” was signed by Contact a Family Scotland on behalf of all disabled children in Scotland.

The visiting party to the Children’s Commissioner office also delivered a framed copy of Finola’s painting for Mr Baillie to hang in his office.

Ellenor Anwyl, Director of Contact a Family Scotland, said: “We wanted to extend a warm welcome to Scotland’s new Commissioner for Children and Young People on behalf of all the disabled children of Scotland. We hope that the new commissioner will continue to represent the rights of all children, including disabled children. “There are around 70,000 disabled children in Scotland. They and their families want to lead ordinary lives. They want the same opportunities and to reach their full potential, so please keep us in mind.”

The campaign will be calling for all families with disabled children to have access to grants to insulate their homes and help reduce bills. At present, if a child is in receipt of Disability Living Allowance, their household is not eligible for Warm Front – a government grant-

Contact a Family has been involved in a campaign to extend winter fuel payments to families with disabled children. We will continue to press for the annual payment to be extended to families with disabled children, while also working on this latest campaign to ensure families are living in the most energy-efficient homes and are given the cheapest fuel rates from energy suppliers.

Getting your views across An update on how Contact a Family has been feeding into the Commission on the Future of Nursing and Midwifery Contact a Family regularly makes comments and recommendations on government legislation, policies and other proposals that are relevant to families with disabled children. Recently we responded to the Prime Minister’s Commission on the Future of Nursing and Midwifery.

Adam with the card given to Tam

If you live in England, are spending more than 10 per cent of your income on fuel bills – electricity and gas combined – and you own your home, please do get in touch. We are looking to speak to families about their situation to provide evidence for a report which will support the campaign. We need to gather the

evidence by 18th September. Tel: 020 7608 8741 or e-mail: elaine.bennett@ cafamily.org.uk

The commission was launched in March this year and has been set up to ensure that frontline nurses and midwives have the skills to deliver 21st century quality services. In July the Commission

asked for our views. In particular they wanted to hear what we would like to see nurses and midwives doing more of and/or doing differently in the future – whether in people’s own homes, in the community or in hospital. Following feedback from families we highlighted that all nurses and midwives should listen to parents and not dismiss their concerns, particularly parents of children with rare disorders, or undiagnosed syndromes.

We recommended that all nurses and midwives receive disability awareness equality training and are given help to understand children’s behaviour and communication needs to ensure disabled children are not put at risk of not receiving appropriate care. We also wanted more nurses and midwives in the future to be aware of the impact of disability on the whole family and provide information on who can help. Watch this space for feedback on this! Connected Autumn 2009 

Contact a Family – News

Contact a Family – News

Fundraising feats for families

Contact a Family news in brief Parent participation in action

Involving parent carers at all levels of planning and developing services is the best way of creating effective and responsive services that work for families. Thanks to the extremely hard work of parents across the country, the number of parents having a say in local service provision has grown significantly over the last six months, with 89 per cent of local areas reporting a rise in the number of parents involved in participation work. 84 per cent of local areas say they are reaching a wider range of parent carers and 66 per cent of areas report improved joint working with local services. All the parents were working to very strict deadlines, helped by Contact a Family and Serco working as Together for Disabled Children, so this is a huge success. The purpose of parents forums was summed up by a parent member of a Parent and Carers Forum at a recent meeting in Barnsley: “To me it is vitally important that Barnsley Parents and Carers Forum (BPCF) is wholly representative of those parents, carers, individuals and groups who are not represented, and is strong, not militant; is determined, not dictatorial; is responsive, not dismissive; and above all will insist on change, not hide from it.”

Minister’s Question Time. Where is the £34million? Where the £34 million has gone and how it is being spent is a mystery we want to solve. But we need your help to do it! How you can help find the missing millions Sign up as a supporter and we’ll tell you when the campaign starts. We will also give you campaign tools, like letters to send to local councillors and MSPs. Three ways to become a supporter of FSDC • write to us at FSDC Scotland, FREEPOST, Contact a Family, Freepost LON8801, London EC1B 1EE • e-mail us at donna.tomlin@cafamily. org.uk. Put ‘For Scotland’s Disabled Children’ in the subject line and in the message please put your name, contact details and any other information you want us to know at this stage • call Donna or Kate on Tel: 0131 659 2938 or 0131 659 2939

Disabled Children Matter Wales highlight long delays in wheelchair provision Disabled Children Matter Wales (DCMW), of which Contact a Family Wales is a member has been voicing its concerns about unacceptable delays in Wales for providing wheelchairs for disabled children and young people.

Web: http://www.togetherfdc.org

We want our missing millions!

For Scotland’s Disabled Children (FSDC) campaign, of which Contact a Family Scotland is a founding member, are currently campaigning to make sure disabled children are treated as a priority. Scotland got a new pot of money when £34 million was made available to pay for measures in the Aiming High for Disabled Children strategy for England. The expectation was that this would be spent on more and better services for disabled children, young people and their families. We’ve pushed for this to happen and awkward questions about the £34 million were asked at First  Connected Autumn 2009

Two reports published in 2006 by Barnardos Cymru and Contact a Family Wales highlighted the difficulties and delays disabled children and their families were experiencing with assessment, supply and maintenance of wheelchairs, and there has been little improvement since then. Marion Parry, a parent of a disabled child from Gwynedd said: “We had to battle for two and a half years to get a chair for our daughter and when it was eventually delivered it was totally unsuitable”. Recently DCMW held an event on this matter at the Senedd, the National Assembly for Wales, at which over 40 people attended, to coincide with a

Welsh Conservatives Debate being held on wheelchair provision. DCMW has urged ministers in Wales to ensure no-one in Wales has to wait longer than a year for a wheelchair.

More help for families in the West Midlands Contact a Family is extremely pleased to announce that we’ve been successful in securing funding for our work with families in the West Midlands. Our West Midlands office covers the areas of Birmingham, Coventry, Dudley, Herefordshire, Sandwell, Shropshire, Solihull, Staffordshire, Stoke on Trent, Telford & the Wrekin, Walsall, Warwickshire, Wolverhampton, and Worcestershire.

Funding from the Big Lottery Fund will help us to support families with disabled children in these areas over the next three years. This means we can employ a development officer and information worker who can provide information to families in the West Midlands about all aspects of raising a disabled child. We can also support local parents to set up their own support groups to help others by sharing experiences and information.

Monitoring the Parent Know How Directory

Contact a Family is monitoring the development of the Parent Know How Directory, which is an online directory offering parents and those working with them the ability to search for information about childcare and families services, in both their local community and nationally. We’ll be working to make sure this directory is useful for families with disabled children.

How our fundraising heroes have helped raise much needed cash Throughout the summer, people from across the UK have stepped up to the

Three Peaks Challenge

On Saturday 21st June five plucky young ladies, Cassandra, Vanessa, Alison, Karen and Emma, supported by three expert drivers, took on the challenge of climbing three of the UK’s highest mountains, Ben Nevis, Scafell Pike and Snowdon, in 24 hours. To prepare, the girls had to undergo a rigorous programme of training that involved walking the South Downs on freezing cold mornings and weekends for up to eight hours. They had to work hard as a team to maintain their time, surviving on very little sleep and relying on their drivers to get them safely from mountain to mountain as fast as possible. They completed the challenge in the magnificent time of 22 hours, 25 minutes — fantastic!

British London 10K Run

On Sunday 12th July, seven runners pounded the streets of London to raise funds for Contact a Family and awareness of its work. Over 27,000 runners took part in this popular event – the course started at Hyde Park, ended in Whitehall, and passed by Trafalgar Square, St Paul’s Cathedral, Tower Bridge, the Houses of Parliament and Big Ben.

challenge to raise money for Contact a Family. Run or climb, they have all Commenting on the highs of their experience the girls said: “completing the challenge in less than 24 hours, the stunning views on Snowdon, and the first beer after finishing!” And reliving the lows they said: “struggling down Scafell Pike over wet rocks, so much physical exercise on limited sleep, and the 9-mile walk back from Snowdon after finishing the course!”

her employer, BAA, will be supporting her by sending us a cheque for £250. Congratulations to all the team for surviving this challenge and a huge thank you Emma for selecting Contact a Family. If you’ve been inspired to attempt a similar challenge either in the UK or overseas, then please contact our fundraising team.

Emma decided to dedicate her part in the challenge to fundraise for Contact a Family after reading an article on the struggles faced by families caring for a disabled child, and being inspired by the work of Contact a Family. Emma’s already exceeded her fundraising target of £500 and Emma, far right, with the rest of her team is set to raise even more as during the Three Peaks Challenge

Our congratulations go to Fiona, Judy, Kaye, Tilde, Eke, Elaine and Sean for completing the course and flying the flag for Contact a Family.

London Marathon update

In the last edition of Connected we published a fundraising target figure of £80,000 for the 2009 Flora London Marathon. We are delighted to report that this figure has been exceeded, currently standing at just over £81,212 and is set to rise even more. What a wonderful result!

Upcoming runs

Annual audit of children’s centres

Our children’s centre team is currently conducting an annual audit of how children’s centres are supporting families with disabled children. If you have any experiences you would like to share please contact Una Summerson, Tel: 020 7608742 or e-mail: [email protected]. uk

helped to make a real difference for families with disabled children.

Contact a Family has places available for The Santa 5K Run (Santa costume provided) on Sunday 6th December in Greenwich Park. We are seeking 30 men to take part in this event to celebrate our 30th Anniversary.

Fiona, Kaye and Judy after finishing

Eke and Tilde with their medals

Contact our fundraising team, e-mail: [email protected], Tel: 020 7608 8733 or visit our website for more information. Connected Autumn 2009 

Suppor t groups

Benefit news

Finding the right funding How to make the most of all available funding opportunities Many people are experiencing the pinch as costs go up and salaries seem to either stay the same or disappear altogether. For support groups and small charities, this can be a huge concern. Competition from other charities can increase because many are looking to the same sources of funding to maintain their services, and individual donors have less money to give. One example of a small support group who have been working hard to fundraise for their work is the NiemannPick Disease Group (UK). Niemann-Pick is a group of rare, inherited, metabolic conditions that normally affect children. There are a number of types of the disease, all of which are characterised by an accumulation of fats in the liver, spleen and bone marrow. Most types involve progressive neurological deterioration. The Niemann-Pick Disease Group (UK) aims to supports families affected by the disease through a dedicated clinical nurse specialist, helpline, information and through funding research into the disease. As Toni Mathieson from NPDG (UK) explains: “Securing funding to support our work is not an easy process. As a

Funding links

The Charity Commission Independent regulator for charitable activity with useful information on their website. They have recently produced guidance looking at the impact of the economic downturn on charities. Web: http://www.charitycommission. gov.uk Funding Central A guide to over 4000 grants managed by the NCVO. Web: http://www.fundingcentral.org.uk FunderFinder Information and advice about charitable trusts and foundations. Also have information on writing grant applications. Web: http://www.funderfinder.org 

Connected Autumn 2009

small national charity, the group often encounters difficulties when applying for grant funding. Many application forms are long and arduous, taking up time and resources that are scarce and precious. “With only two administrative staff, we are only too aware of the impact this bureaucratic process can have on our daily activities – yet it is essential that we increase our efforts in this area and focus on creating successful applications that will ensure the continuation of our work. “Even a small grant can make a large difference to our effectiveness, and we are continually seeking ways to inspire new supporters, whilst retaining more of our existing ones. Despite the economic downturn, this past year has seen an upward turn in the amount of fundraising activities organised by our members, friends and families. “Achieving success can also bring challenges – there is an increasing need to demonstrate impact, to measure outcomes and to ensure you are meeting the criteria set out in your grant offer. Although this is an essential part of the funding process, it can significantly add to the administrative burden.

Government Funding Access to government grants, managed by the Directory of Social Changes. Web: http://www.governmentfunding. org.uk Grants Online Subscription based information on funding opportunities. Web: http://www.grantsonline.org.uk The Kings Fund Run an Impact award designed to reward health sector charities. Web: http://www.kingsfund.org.uk Turn2us Information on access to grants. Web: http://www.turn2us.org.uk

Extra Child Trust Fund payments for disabled children

“The NPDG (UK) has also enjoyed some success through community and informal fundraising, and we have a proven track record of partnership funding with other grant-making trusts. In order to respond to the challenging financial environment, we intend to implement a strong financial policy, be aware of possible risk and focus on good governance.”

Our parent adviser and financial expert, Derek Sinclair, explains how the additional Child Trust Fund payments will work

“Locating suitable sources of funding and making applications takes time and effort.”

What is a Child Trust Fund? A Child Trust Fund (CTF) is a longterm savings and investment account for children. Each child automatically receives a voucher from the government for £250, which their parents can use to open a CTF account. Children who live in low income families are eligible for an additional trust fund payment of £250. The government will then make further payments (of either £250 or £500) on each child’s seventh birthday. This money is then invested for your

Money from grants or trusts is usually for a specific project which means the money is restricted in what you can use it for. If your group wishes to explore applying for money in this way, there are a number of websites which provide the details for many grant giving organisations. You will need to put some time in to research which organisations or trusts are right for the service you are providing.

In the last budget, the government announced that it will make additional Child Trust Fund payments to disabled children.

child and will grow over time. Apart from these payments made by the government, it is also possible for you, or your family and friends to make payments into your child’s account, subject to certain annual limits. Extra payments for disabled children From 2010 the government will also pay an additional amount into the CTF account of a disabled child. This will be £100 per year or £200 per year if a child is on the care component of Disability Living Allowance at the highest rate. Invested over time, these additional payments should ensure that disabled children receive substantially higher amounts when they eventually come

When will my child be able to get the money in their account? A child must normally wait until they reach 18 years of age to access the money in their account. However if your child has a terminal illness and is not expected to live for more than six months, you can get early access to buy things that your child needs.

If you would like any further advice, please contact Louise Derbyshire, (contact details below). Previous issues of Connected have offered some ideas on fundraising and how to complete application forms for grants. Please contact us if you would like to receive this information.

In the next issue we will consider the pros and cons of groups using volunteers. If you would like to contribute your experiences or offer tips to other groups, please contact Louise Derbyshire, e-mail: [email protected] or Tel: 020 7608 8715

Will all disabled children receive these extra payments? No. In order to qualify for an additional payment from the government your child must have been in receipt of Disability Living Allowance (DLA) at some point in the previous year. DLA is a non means tested benefit paid to people who have additional care or mobility needs because of an illness or disability. If your child is disabled but not currently in receipt of DLA, phone our free helpline, Tel: 0808 808 3555 for further advice or download our guide, ‘A guide to claiming DLA for children’ from our website. In addition, only children born on, or after 1st September 2002 are eligible for a CTF. This applies regardless of whether the child is disabled or not.

As Toni pointed out, locating suitable sources of funding and making applications takes time and effort. Unfortunately, there is no short cut to doing this.

Next issue – volunteers Have you used volunteers to help at events or do specific pieces of work?

to access the money held in their trust fund account.

Phone the Contact a Family helpline for further information on any aspect of Child Trust Funds.

Help with mortgage interest costs – update In our Spring edition, we provided information about the new rules on help with mortgage costs via certain means tested benefits. These new rules include a shorter waiting period before you start to get help with your

mortgage and an increase in the maximum amount of loan that can be met. At the time our article was written it was thought these new rules would apply to most new claims made after 5th January 2009. However, it has subsequently become clear that the

situation is more complex. Whether these more generous rules apply to a new claim made after 5th January 2009 depends on the claimant’s individual circumstances – including what other income they have. For further advice, call our free helpline, Tel 0808 808 3555. Connected Autumn 2009 

Other news

Other news

On the road to victory How one family’s hard-fought battle could have benefits for thousands of UK disabled toddlers The difference between a normal family car and a Motability car specially adapted to their son’s needs is like night and day for Stephen and Wendy Meek. As soon as their son Justin reached his third birthday, he was entitled to the mobility component of Disability Living Allowance (DLA), and the family got the car they had been dreaming about for three long, hard years. The Motability car has tinted windows so they can change Justin discreetly when they are out. There are holders for his oxygen bottles so they don’t roll about dangerously on the car floor. And there is enough room for all the family – Stephen, Wendy, Caitlin, Sophie and Justin – as well as Justin’s bulky but life-saving medical equipment. “When we got the Motability car, we headed straight out and drove to Loch Lomond. It was the first time we had been able to go out all together as a family in one car. We were experiencing life like other families do and we had a brilliant day,” Stephen recalls. Under the Department of Work and Pensions (DWP) rules, a child is only eligible for the mobility component of DLA when they are three years old or over. Those eligible for high rate mobility DLA receive £49.10 a week to help with transport costs or can alternatively use this to pay towards a Motability car.

Back in 2005, when Justin was still under three years old, the seeming injustice of the law prompted Stephen and Wendy to begin a difficult journey, to force the government to change the law. Despite getting the car they needed two years later, the family were determined to see their fight through for other families in their situation.

“The day before the appeal, we were contacted by the office to say there was no point attending the appeal because he wasn’t three. That was the first time we heard about the rule. I was so angry that I said we were going to attend anyway. I went along with Wendy and Justin and we were told our claim was “tedious and ridiculous”.”

Now in Summer 2009, after a four year battle, the couple have succeeded in getting a landmark court ruling which moves them a step closer to getting mobility benefits for disabled toddlers across the UK.

“Despite getting the car they needed two years later the family were determined to see their fight through.”

Stephen said: “We’re very proud that Justin’s action may change the lives of thousands of disabled children and their families. We think that the non-payment of mobility benefits to under threes is simply wrong. Justin has been disabled from birth and his condition didn’t change when he turned three. We were left virtually housebound and our quality of life was seriously compromised because of this rule.” Justin was born in June 2004 with Prader-Willi Syndrome. He is oxygen dependent and cannot walk. The family spent an agonising first year of his life wondering if he would survive. When Justin was 16-months-old, his respiratory nurse suggested the family apply for the mobility component of DLA so they could get a specially adapted car.

Justin, centre, with his sisters Caitlin and Sophie 10

Connected Autumn 2009

“We were given all kinds of misleading information at that time. We applied for the benefit but were refused, so we appealed the decision, unaware of the rule. We were actually given an appeal hearing at the DWP office in Glasgow,” said Stephen.

It was the family’s relationship with Cameron Fyfe, a human rights lawyer, which was the catalyst for the court action. When he heard their story, he suggested that they may be able to challenge the law by arguing it contravened their son’s human rights. After doing some research, Fyfe said that they could seek a judicial review of the DWP rule. Last November the family appeared at the Court of Session in Edinburgh. During the hearing their lawyer argued that the law as it stands contravenes Justin’s human rights. The judge in the case, Lord Woolman, published his opinion in June this year. He ruled that the DWP may be breaching Justin’s rights under European law. The ruling could force the DWP to review its current position of non-payment of mobility benefits to under threes. There could be up to 10,000 families in the UK affected by this issue at any one time. This is a significant victory for families with disabled children in the UK. While it is likely that the law will change, there is no guarantee at this stage. Any changes in the law are likely to take some time. We hope to have an update on the situation and the position of the DWP in the next issue of Connected.

New report shows disabled children missing out on basic NHS care Every Disabled Child Matters report demonstrates NHS failings Every Disabled Child Matters (EDCM) has launched a new report which underlines the failure of the NHS to meet even the basic needs of disabled children. The campaign report, Disabled Children and Health, highlights a clear disparity between central government policy and local delivery. Despite recent policy and funding commitments for disabled children’s health services, the campaign’s correspondence from Primary Care Trusts (PCTs) reveals widespread confusion about the roles and responsibilities of the health service to support disabled children to lead ordinary lives. One parent of a child with a rare and life-limiting condition who requires 24-hour care told EDCM: “We repeatedly see local agencies passing the buck when it comes to agreeing care for my son. Social services tell us they can’t provide night care for him because it is medical care, while health tell us they can’t provide it because it is a family support service. Where are the needs of my son in all of this? We haven’t seen any evidence of joined-up working, and we are made to feel like we have to beg to get anything done.” The report highlights challenges across a range of health services. Disabled children face barriers accessing universal health services such as GPs and dentists, often due to inappropriate attitudes from health professionals or a lack of training. Families with disabled children needing specialist health services such as

equipment or wheelchairs also face battles. Parents tell of waiting years to receive a wheelchair that meets their child’s needs, with the child having out-grown the chair by the time it is delivered. Disabled Children and Health makes clear that families are yet to experience the ‘high quality’ and ‘responsive’ health services that would enable them to lead ordinary lives, as set out in the recent child health strategy, Healthy lives, brighter futures. They are also not experiencing the ‘improved outcomes and experiences’ foreseen by the children’s palliative care strategy, Better Care: Better Lives.

“The report highlights challenges across a range of health services.” EDCM is calling on the Department of Health and PCTs in England to implement the following priority recommendations: • The Department of Health should inform PCTs that their annual Operating Plans will not be agreed unless they demonstrate that their spend on disabled children’s services and children’s palliative care services reflects national policy expectations. • Every PCT should have a named lead at a strategic level responsible for services for disabled children, including children with complex health needs and children with palliative care needs, by December 2009. • Every PCT should publish information on the additional funding they have allocated locally for each financial year (2008-2011) to disabled children’s services, separately identifying short breaks, children’s community equipment, children’s wheelchairs and children’s palliative care.

EDCM board member and director of the Council for Disabled Children, Christine Lenehan, said: “We have welcomed the priority given to disabled children in the recent child health strategy and the confirmation that PCTs have £340 million in their baseline budgets from 2008-2011 for disabled children’s services, including children’s palliative care. “But in the context of a devolved NHS this will only make a difference to the lives of disabled children if every PCT demonstrates strong leadership and has a clear accountability structure for disabled children’s services. To ensure this happens, the Department of Health must take a stricter monitoring role in relation to the performance of PCTs.” You can read the report in full at Web: http://www.edcm.org.uk/pdfs/edcm_ disabled_children_and_health.pdf Contact a Family is one of the founding members of EDCM, the campaign to get rights and justice for every disabled child. Our parent guide, The NHS and caring for a disabled child has information about using the NHS and how to make a complaint. Phone our free helpline, Tel: 0808 808 3555 for a copy or you can download it from our website. Connected Autumn 2009 11

Other news

Theme of the issue

Healthy living and wellbeing

The Disabled Children’s Services National Indicator

Healthy living and wellbeing

Forming a baseline for disabled children’s services

Keeping yourself and your whole family healthy can be tough. When you’re bringing up a disabled child, your own health often comes a poor second to everyone else’s.

In the Spring issue of Connected we told you about a survey being sent out to a sample of parents of disabled children, to ask for their views on the services they receive. The survey asked parents about their experiences of health, education and care, and family support services. The aim was to get feedback from parents of children with a wide variety of disabilities across England. The answers parents have given formed the baseline of the National Indicator for disabled children’s services, also known as NI 54. The performance of 30 local areas has been compared against this national baseline. Each area has received a score for how they provide information, carry out

News in brief Families with disabled children among carers identified at breaking point by new research

Carers UK is calling for a radical overhaul of the benefits and care system to prevent carers reaching breaking point. New research published for Carers Week found that almost three-quarters (74 per cent) of people providing unpaid care for a loved one who is ill, frail or disabled have reached breaking point due to the pressures of their caring role.

Life chances survey for young disabled people

Leonard Cheshire Disability is currently compiling research into young disabled people and their ‘life chances’ compared to those of non-disabled young people. They are looking for young people between the ages of 1621 to take part. The survey closes on 5th October 2009 and completed surveys will also be entered into a prize draw for Amazon vouchers. To take part, e-mail: mary.hough@LCDisability. org or visit Web: www.lcdisability.org 12

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assessments, explain decisions, involve parents in decisions about their child’s services and provide parents with the opportunity to feedback on services. A more detailed breakdown of the returned questionnaires for these areas should appear on the Department for Children, Schools and Families (DCSF) website soon. The DCSF will be sending the survey out again in late September to reach a larger sample of parents of disabled children and measure performance in the remaining local areas. The results for these will be published for all local authorities and primary care trusts in December. Local

David Cameron’s plans to remove bureaucracy for families with disabled children welcome

David Cameron, Leader of the Conservative Party, has set out his party’s plans to help families with disabled children. Writing in The Independent newspaper, David Cameron made a pledge to remove the bureaucracy that families with disabled children face trying to access the support that they and their children need. Srabani Sen, Chief Executive of Contact a Family, said: “We warmly welcome David Cameron’s acknowledgement of the ‘battle’ that families with disabled children have in getting support and applaud his continued efforts in raising awareness of the issues for families with disabled children.”

OpenBritain – new information resource for travellers with access needs

Tourism for All UK, RADAR, and the National Federation of ShopMobility have teamed up with national tourism bodies to create a new definitive guide book and website for people with

services should be looking to channel money and resources into improving services provided and increasing their performance against the disabled children’s services indicator. The questionnaires will be repeated on an annual basis, so areas can measure how they are progressing. If you receive a questionnaire, please do take time to fill it in and return it. The results for the areas available to view are at Web: http://tinyurl.com/r2aqlm For more information on the National Indicator and the core offer visit Web: http://tinyurl.com/n6dvb2

disabilities and access requirements. OpenBritain will provide a recognisable brand for all types of accessible facilities. Entries in OpenBritain will either have had an access inspection, or apply for self-certification, with all members subject to random checks. The new annual guide book will replace those currently published by Tourism for All and RADAR. Web: http://www.openbritain.net

ACT launches free Family Companion for parents

ACT, the Association for Children’s Palliative Care, has launched a new publication to help families and carers of children and young people with lifelimiting and life-threatening conditions understand what will happen following their child’s diagnosis. ‘A Family Companion to the ACT Care Pathway for children with life-limiting and lifethreatening conditions’ takes parents through the care journey that they and their child will experience, step by step. ACT will be distributing this publication free to families of children with lifelimiting and life-threatening conditions. Tel: 0117 916 6422, or e-mail: [email protected] to order a copy.

Introducing this edition’s theme, focusing on all round wellness

Parents tell us time and again that they struggle with the amount of stress they experience, fighting for the right services and support for their child. Then there’s the physical problems like back ache, pains and exhaustion that can come from the day-to-day caring for a child and struggling with sometimes old and unwieldy equipment. In this autumn theme of Connected, we’re looking at things that work for parents to help deal with stress, like relaxation and massage, and we’ll be giving you a list of resources to help keep you and your family healthy.

In our recent report What makes my family stronger almost 60 per cent of respondents said that their opportunity to get a good night’s rest was poor or unsatisfactory. In this issue we interview a parent about a massage and aromatherapy course she attended and how it’s benefited her family’s sleep. Other stories come from parents and organisations that help disabled children stay healthy, including those with complex health needs and those who, with a little help and communication can access mainstream healthy living schemes, like the MEND programme. In a recent national survey by the Foundation for People with Learning Disabilities, fathers were asked for ideas on maintaining their health. They suggested that there should be regular

health check-ups (‘an annual MOT’), that they would benefit from using a gym or exercising, help with sleep problems and help with improving their diet. You may be interested to see on the resources page that Carers UK have linked up with Lloydspharmacy to offer free health checks for all carers, including parent carers. We hope you find something useful to help you, or are inspired by our parent stories about what works for them. And remember you can always call our helpline, Tel: 0808 808 3555 if you have any concerns about your own health – physical, financial or emotional – we’re here to help and listen. You can also call our parent advisers about any aspect of your caring situation and your child’s rights, health or education.

Mind, exercise, nutrition... do it! Ruth Card, one of our Volunteer Parent Representatives explains how MEND has had a positive impact on her family The MEND Programme is a fun course for families with children whose weight is above the healthy range for their age and height. The MEND (Mind, Exercise, Nutrition... Do it!) programme helps children and families manage their weight better and lead healthier lives. It runs twice a week after school time, in two-hour sessions over ten weeks. It was a pleasant change to attend the St Helens and Halton MEND open evening and be welcomed with open arms by the nutrition leaders and exercise coaches alike and not to feel like we were causing them extra work, which so often happens. They immediately adapted the exercise course planned so that my daughter, Alice, could work at her own level and achieve. Alice’s level of learning difficulties mean that the nutrition aspects are not within

her capabilities but the targets can be adapted and have been. Marching round the supermarket as a group looking at labels for fat and sugars was an experience not to be forgotten, trust me! Alice has loved and benefited from the exercise twice weekly. To have her participate with none of what feels like the all too frequent requirements for extra support staff, or focus on what she can’t do has been a welcome change. Alice and her brother David, doing something together is also good. David just loved doing the course and running round as fast as he could. Embarking on a course that is after school twice a week for ten weeks does require a huge amount of effort but I think we will notice a big difference with both children after it for different reasons, so it’s worth it!

The programme is offered free to families and they currently offer three different programmes which families can join: • MEND Programme which is for overweight children aged 7-13 years old • MEND 5-7s, which is for children aged 5-7 years old, which also involves parents or carers • Mini-MEND Programme, an early years healthy lifestyle programme for 2-4 year olds and their families, whatever the child’s weight. Find out more about the MEND Programme at Web: http://www. mendprogramme.org

Connected Autumn 2009 13

Healthy living and wellbeing

Healthy living and wellbeing

Theme of the issue

A carrot and stick… for a healthy lifestyle

Brainwave aids child development and family well-being

Adele Meader takes a light-hearted look at how you might gently persuade your child to take part in some exercise

Donna Giles writes about the positive effects on the entire family when son Nathan made huge progress through a programme designed to aid physical and cognitive development

My son can walk lovely when he wants to, which is rare. Why oh why should he walk when he can be pushed everywhere? We all know, and we’ve been told enough times by the government, that exercise is a vital part of healthy living. But what’s a parent to do if your child has difficulty moving around. Or if your child, like my son Christopher, simply refuses most of the time to walk, preferring to use his buggy.

“Food can also act as a good carrot, although an actual carrot probably won’t be enough – or certainly not in Christopher’s case.” This was all fine and dandy when Christopher, who was born with 9q11.del (a rare chromosome disorder), was small, but beware the “just pick him up, we are late already” and “stick him in his buggy, he loves the sensation” options. There may be unexpected consequences of this as your child gets older, expecting to use their buggy the whole time even if they can walk. You could quite possibly feed into their ‘challenging’ behaviour in later life. Having a child who can walk, but then chooses not to, left me obsessing over his ‘lack of exercise’ and consequently his bowel movements, or lack of, which ultimately left me thinking of ‘creative’ ways to get Christopher on his feet using carrot and stick style tactics. I discovered that favourite toys can get you to the corner shop, and to the car, 14

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and even around the town. For several years a member of our family was assigned to carry Christopher’s favourite toy to entice him to walk. It was one of those wooden contraptions with brightly coloured beads on it that he could push round some bendy wires. It was heavy and cumbersome and needed its own seatbelt, but it got us out of the house and Christopher’s digestive system working. A ball was great for a couple of years. Christopher should have been entered in the Guinness Book of World Records for that bouncing! We could only really use this to get down the garden path to the car though as once too often we forgot the green cross code and ran out in front of speeding cars... Food can also act as a good carrot, although an actual carrot probably won’t be enough – or certainly not in Christopher’s case. Food is Christopher’s favourite past-time. I once managed to get Christopher to walk two miles around Stourhead, a National Trust estate in Wiltshire, one afternoon, following a piece of gateaux. The Women’s Institute had a cake stall in the grounds on this particular outing, and my son clocked the goodies before I had. Still to this day I wonder how he saw that stall. I actually think he has an inbuilt cake radar system! Anyway, in true ‘Little Britain’ style, my son leapt from his wheelchair and ran at great speed to the cake stall. Only my sensible shoes saved the WI ladies from collapse. After lots of shrieking from the WI gals, I felt obliged to buy the piece he was squishing between his fingers. It was kindly put onto a paper plate whereby I threw some money their way whilst hotfooting it as far away as I could possibly get. And far away I managed too, before wondering if getting my son to run at speed, and boy, was he focused, after

My family has been visiting the Brainwave Centre in Somerset for about 11 years now. Brainwave is an independent charity which helps children aged six months to 12 years old who have a brain injury, genetic condition or developmental delay. a piece of chocolate cake could be deemed child cruelty. Anyway, that thought didn’t last long. I tend to use this tactic at most stately homes, parks and beaches. Desperate times can call for desperate measures, as you can see. I also enlist the help of other parents and professionals where I can, to get my son ambulant. The best one for him at the moment is swimming. I’m very lucky with the school he attends, who have him swimming three times a week in the school pool. It’s essentially like a massive warm bath, with soft dim lighting and classical music.

“In true ‘Little Britain’ style, my son leapt from his wheelchair and ran at great speed to the cake stall.” Christopher’s opt out from walking left me constantly re-evaluating everything we did with him in how to get him mobile. And whilst his school have suggested he might benefit from more swimming, their pool is a far cry from the local baths. I can’t quite face the prospect of minus 12, fluorescent light and screaming kids jumping in around Christopher’s head. Given the choice, I’d rather give him a piece of Victoria sponge any day of the week!

Like many families, when our son Nathan was diagnosed with Cerebral Palsy, we were referred to our local child development centre. However, we increasingly felt that the amount of physiotherapy input he was getting was not enough. And when Nathan was about two and a half years old, we felt the time was right to explore other options.

were taken through the assessment, with everything being fully explained to us as we went along. On our second day we were taught a programme of exercises, to be carried out daily, which focused on both his physical and cognitive development. The most important aspect to come out of the assessment was the positive focus on Nathan’s abilities, and how we could develop those abilities. There was a belief in him that we had not had before from professionals. The therapists at the centre encouraged us to believe that we could help our son.

We had family members who lived in Somerset and recommended we try the Brainwave Centre, so we booked for an initial two-day assessment.

When we returned home with our programme and video of our exercises, I set about finding volunteers who could help us carry them out, as many required two people. We had an overwhelming response from the local 6th Form College and soon had many students visiting us every week to lend a hand.

At the time of our initial consultation Nathan was not talking, nor rolling. We

Within four months Nathan was rolling and talking. He has continued to make

progress, and although he still has issues with his mobility, we are sure Nathan would not have achieved all he has done without the input we have had from the Brainwave Centre. Last year he became the youngest person ever to speak at a UN Pre-sessional Formal Meeting discussing Children’s Rights in the UK. Not bad for a child who didn’t talk until he was three! Nathan is now 13 years old, and we continue to visit the centre around every six months. Their support over the years has included writing reports for statements and giving advice to his schools. If we have any queries they are always at the end of the telephone. We are also lucky to have a great family co-ordinator in our area. When Nathan recently had an operation I felt confident to carry out his post-op physiotherapy as most of it was already in his programme. Our community physiotherapists are supportive of the programme, and it compliments the work they do. Nathan’s sister, Cerys, also has Cerebral Palsy, and she too is making great progress with her Brainwave Programme. Through our continued association with Brainwave we have come to know everyone at the Somerset centre very well, with a friendly rivalry developing over cricket. It’s been hugely beneficial to Nathan’s health and well-being, and to ours as a family. Above all, the Brainwave therapists have continually encouraged and supported us in our goal of helping our children to reach their full potential, and have empowered us as a family to believe that they can achieve.

The Giles family on a recent holiday to Disney World

Visit Web: http://www.brainwave.org.uk or contact our helpline for information about similar organisations. Connected Autumn 2009 15

Healthy living and wellbeing

Theme of the issue

Staying healthy

Feeling Phab – spotlight on how Phab can help children take part in fun activities

Handy resources to help you and your family As a parent of a child with a disability or additional needs, it’s important you look after your own health and wellbeing. The Carers (Equal Opportunities) Act 2004 requires local authorities to tell carers about their right to a careers assessment. It also makes sure that work, education and leisure issues are considered when you’re being assessed. The aim of the carer’s assessement is to give you a chance to tell social services about the things that could make looking after your child easier for you. This may result in getting services or direct payments to meet your assessed needs. You can contact your local social services to request an assessment. Carers UK CarersLine: 0808 808 7777 Web: http://www.carersuk.org Have lots of useful information for carers and run an advice line. They have also partnered with Lloydspharmacy so their pharmacists can offer healthcare advice to carers and free health checks. Princess Royal Trust for Carers Web: http://www.carers.org Offers support services for carers, with

branches throughout the UK, some of which provide training, massage and relaxation at reduced prices. Also has information on their website about managing stress and taking care of yourself. Carers Direct Tel: 0808 802 0202 Web: http://www.nhs.uk/Carersdirect Information, advice and support for carers including a free helpline and database of local services. Complementary healthcare: a guide Web: http://tinyurl.com/2tmyn2 The Prince’s Foundation for Integrated Health have an online guide that offers basic information about complementary therapies, what they are used for and finding a qualified practitioner. Dealing with stress and anxiety Parents often tell us they feel so stressed and overwhelmed coping with their child’s needs and battling to get the right services they start feeling anxious all the time. They may even go on to develop depression. If you’re feeling constantly anxious, it’s important to seek help now, rather than carry on ‘coping’ until you’re completely burnt out. Your GP or local

carers centre should be your first port of call. They can put you in touch with counselling services, relaxation classes or refer you elsewhere if necessary. You can also ask for a carers assessment. Some Princess Royal Trust for Carers centres provide counselling themselves, or can refer you to your GP or another voluntary organisation in your area like Mind. Or you can find a trained, registered counsellor or psychotherapist at the British Association for Counselling and Psychotherapy, Tel: 01455 883316 or Web: http://www.bacp.co.uk

Managing Stress for Carers Web: http://www.cerebra.org.uk/parent_ support/support/stress.htm Tel: 0800 328 1159 This book produced by Cerebra is based on their research project and is aimed at helping carers to manage stress. The book can be downloaded from their website or is available from their helpline.

Can you tell us a little bit about your family? We have three children, Andres, Steven and Jessica who has severe learning disabilities and autism. Life is difficult at 16

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How long have you been attending pamper sessions? Apart from the course, only about three or four sessions but they are really fantastic. It’s something that’s just for me and most of the time, I have no time for me so this break in routine and the fact

As Janine Williams, Phab’s London Development Officer commented: ”Sometimes our clubs are people’s last hope. Often a child can be excluded from a swimming club or scouts simply because they are not able to cope with his or her disability, due to lack of accessible facilities or training. Mainstream clubs aren’t always able to cope with a disabled child, but Phab clubs can really help encourage selfconfidence and independence, and can provide social or sports activities which the whole family can enjoy together”. Thelma, who takes part in a Phab clubs, said: “Belonging to the Phab club has made such a difference to my life in many ways. I have been a member of Phab for many years now and personally have made so much progress in my life. Phab makes you realise that you are not alone in your situation and it inspires everyone to have a happy and laughing club,

Organisations for children MOVE Tel: 020 7403 6382 Web: http://www.move-europe.org.uk Activity based programme which uses the combined knowledge of education, therapy and family to teach severely disabled children and adults the skills of

sitting, standing, walking and transferring to the very best of their ability. Aims to give children more opportunities for independent movement.

me – that I can sometimes live in the moment and experience a sense of calm and wellbeing.

that I’m learning something new is brilliant.

The training has also boosted my confidence. I meet with other mums once a month and I have passed on what I’ve learnt and they have been so receptive to it. To share this with other struggling parents makes me realise how much this sort of thing is needed. I would love to do a more advanced course but it has to be one that parents can afford as some are so expensive.

What have you gained from the training course on pampering? The training was excellent. It’s been so helpful, in particular with Jessica. Usually she doesn’t like to be touched but now she loves it when I use the oils. I don’t generally do massage with her, I use them for more of a relaxation technique which really helps her sleep. And this of course helps the whole family!

How do they affect your health and well being? We all sleep better and the atmosphere at home is more relaxed and calm. Jessica can be hyperactive and using certain oils helps to calm her down. When you have a disabled child, you can be so busy that you don’t realise that there are things that can help you and your family. That’s what this has taught

Everyone deserves a break and a bit of pampering, no group more so than parents and carers of disabled children times. I worry that the extra time I need to spend with Jessica leaves the other children out. It’s hard when you have one child that needs so much more attention than the others.

Phab first started in 1957, a time when there was little available in terms of accessible clubs for people with disabilities. At that time it was apparent that people with physical disabilities wanted to enjoy the same activities as their able-bodied friends without being patronised. Phab was set up with the aim of offering social activities for everyone, regardless of ability and disability, which can have a huge positive impact on people’s heath and wellbeing.

Whatever you do, it’s important to tell your GP you’re the parent carer of a disabled child as they can be a gateway to lots of services and support. They can put a note on your records and any new services from them can be sent to you.

Finding a little ‘me’ time Nohra Gonzalez tells us about several pamper sessions she has attended at our Southwark project office. As part of the Body Shop Foundation funding Southwark received, she also took part in a month course to learn the basics of massage and aromatherapy.

Healthy living and wellbeing

Phab Tel: 020 8667 9443 Web: http://www.phabengland.org.uk

where the members are all friends with each other.” Today Phab clubs offer a wide range of activities, depending on what their members want – arts and crafts, drama, discos, swimming, sailing, visits to theme parks and outdoor activity centres. As Rebecca Hargreaves, Phab’s National Development Manager, says: “Many children miss out on school trips because of access issues, but on a Phab trip all the activities are totally accessible. Some youngsters use a wheelchair, some have a sensory impairment and others are physically able but have other needs, and everyone participates very successfully. In addition we run groups for older children where they learn more about looking after themselves and can gain valuable life skills”. For contact details, see below. National charity dedicated to the integration of people with and without physical disabilities in all aspects of society. Has a network of nearly 200 clubs throughout England and Wales for all age ranges, offering activities and holidays which members can share and enjoy together.

Some tips to help parents relax and take care of themselves: • don’t feel under pressure to do everything • try to sleep well • have a massage • eat well and enjoy mealtimes • go swimming • book a ‘me’ time on your calendar • socialise or take up a hobby • have an hour to yourself when possible • take part in exercise or yoga • visit your GP if you feel unwell. Connected Autumn 2009 17

Resources - Local contacts

Resources Supporting parents and carers – A trainer’s guide to positive behaviour strategies Sharon Paley, Chris Stirling and Mark Wakefield

This trainer’s guide is intended to provide parents and carers, as well as professional trainers, with materials to deliver training in positive behaviour strategies. There are eight sessions in all, with PowerPoint slides (on a CD-ROM which is included), handouts and session plans. After ice breakers and an introduction it starts off with asking people to think about what we feel is acceptable behaviour, and how we react to it. There are activities to enable participants to examine how personal experience, mood, and capacity to manage a behaviour can affect our view of some behaviours. It looks at things such as intensity, frequency and ‘triggers’ and discusses how a behaviour may often feel more intense and difficult than it appears to others because of the way it is experienced. It goes on to look at causes, and aims to give participants some insight into behaviours and the reasons for them. It encourages participants to find a way of supporting their child to see that doing

things in a different way can bring the same results. It also covers relationships and behaviour management strategies. Session seven, ‘Supporting your child – and you’ shows how challenging behaviour can affect the family as a whole. It reinforces the need for consistency and for family members to work as a team in order to address issues being experienced. Sessions are clearly set out and designed to be easily understood by those who may have limited formal training. It’s encouraged for participants to share their experience with others and suggests that the realisation that you are not on your own can help put things in perspective, which can then help to increase confidence in dealing with situations. Yvonne McGahren e-mail: [email protected] Published by The British Institute of Learning Disabilities (BILD) ISBN 978 1 905218 07 3 Web: http://www.bild.org.uk

A day in the life... In our new feature, we hear from Jacqui Law, about her experiences as one of our Volunteer Parent Representatives My name is Jacqui Law and I am the Volunteer Parent Rep for Dumfries and Galloway. I live there with my husband Graham and our amazing daughter, Sarah, who is 13 years old. Sarah has a rare chromosome disorder, Ring 18 and an autistic spectrum disorder.

the commitment and experience they bring can only enhance the work of any organisation supporting families like mine. When I looked at what Contact a Family had to offer to families, I felt then, as I do now, that this was an organisation which could make a difference.

About six years ago, I started thinking about returning to work and how I could help other parents. Because of my background in advice, I have very strong views about the quality of information and advice people should receive. I believe information should be accurate, accessible and readable. I also believe passionately that parents and carers of children with a disability are a huge and untapped resource, and that

There really is no typical day or even week for me! Like all volunteer parent reps, I have a dedicated phone line in my home so parents, and anyone involved with families with a disabled child, can call me with an enquiry or sometimes just to talk. I take quite a few enquiries by e-mail as well. I also give talks about Contact a Family to parent groups and professionals,

Jacqui with her daughter, Sarah and husband, Graham

have a stand at events, represent Contact a Family locally at meetings and am involved in representing parents’ views in consultations. And no, I’m not supermum. I don’t do all of this at the one time! Some months my phone line can be quiet, and other times, like this last month leading up to the school holidays, it can be really busy. I’ve had 16 enquiries this month, which is quite a lot. The school holidays can be very stressful for parents like us. Most of the calls I took last month were from parents who were anxious about how they were going to cope with their kids for the holidays, about the shortage of leisure and social opportunities and generally about needing more short breaks. I can let parents know what is running locally and who to contact to ask for information. Sometimes I just listen and that can help. Sometimes though a parent will call and ask a question I just can’t answer, for example complex benefits advice, so I refer them to our helpline. Recently a mum I spoke with ages ago phoned. Both our kids are on a gluten free diet. She called to tell me she had managed to find a gluten free birthday cake for her boy, and she remembered about Sarah so phoned with the details. It was a lovely thing to do, and reminded me why I love doing this – because supporting each other really helps make a difference to all of us.

Local contacts – support from Contact a Family Volunteer Parent Representatives Contact a Family has a team of Volunteer Parent Representatives throughout the UK. They are all parents or carers of disabled children themselves, some with quite complex and rare conditions. They fully appreciate the impact of caring for a disabled child. Our team of Volunteer Parent Representatives offers someone to talk 18

Connected Autumn 2009

to and signposting to local sources of information and support for families. Family Workers Contact a Family has a team of experienced Family Workers, covering different parts of the UK. Our Family Workers can help with any of the wide range of issues that families can face when caring for a disabled child, such as claiming benefits, providing information

about SEN, through to putting you in touch with local and national sources of support. How to find your local contact Contact our helpline, Tel: 0808 808 3555 or check our website, Web: http://www.cafamily.org.uk/inyourarea to find out if there is a Family Worker or Volunteer Parent Representative near you. Connected Autumn 2009 19

Getting in contact with us Contact a Family 209-211 City Road London EC1V 1JN Tel: 020 7608 8700 Fax: 020 7608 8701 e-mail: [email protected]

www.cafamily.org.uk www.makingcontact.org Ring the Contact a Family freephone helpline for advice and information on any aspect of caring for a disabled child. Contact a Family is the only UK charity providing support and advice to parents whatever the medical condition or disability of their child. Our helpline is a ‘one-stop-shop’ for parents and families whenever they need answers.

Registered Office: 209-211 City Road, London EC1V 1JN Registered Charity Number: 284912 Charity registered in Scotland Number: SC039169 Company limited by guarantee Registered in England and Wales No. 1633333 VAT Registration No. GB 749 3846 82

Freephone helpline: Textphone:

0808 808 3555 0808 808 3556

Open Mon-Fri, 10am-4pm & Mon, 5.30-7.30pm