Contact a Family - Connected newsletter

8/14/2019 Contact a Family - Connected newsletter

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The magazine for families with disabled childrenand all those who work with them

Autumn 2009

Incorporating The Lady Hoare Trust

The road to victory

All round wellness

Keeping you and

your family healthy

How one family has been ghting to getmobility benets for disabled toddlers

New Every Disabled

Child Matters report

Highlighting NHS failings

Child Trust Fund

Extra payments for

disabled children


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Connected Autumn 2009

Contents From our Chief Executive


Contact a Family209-211 City Road, London EC1V 1JNTel: 020 7608 8700, Fax: 020 7608 8701e-mail: [email protected]

Contact a Family Northern IrelandThe Bridge Community Centre, Railway StreetLisburn BT28 1XPTel/Fax 028 9262 7552e-mail: [email protected]

Contact a Family ScotlandCraigmillar Social Enterprise & Arts Centre11/9 Harewood Road, Edinburgh EH16 4NTTel: 011 659 290e-mail: [email protected]

Contact a Family Cymru-5 Cathedral Road, Cardiff CF11 9HBTel: 029 209 6624, Fax: 029 209 6625e-mail: [email protected]

Contact a Family CornwallTel: 01209 821 485e-mail: [email protected]

Contact a Family North East England RegionThe Dene Centre, Castle Farm Road

Newcastle upon Tyne NE 1PHTel/Fax: 0191 21 600e-mail: [email protected]

Contact a Family North West England Region6th Floor, St. James HousePendleton Way, Salford M6 5FWTel: 0161 74 0700, Fax: 0161 74 0711e-mail: [email protected]

Contact a Family West Midlands RegionProspect Hall, 12 College WalkSelly Oak, Birmingham B29 6LE

Contact a Family EalingRoom , 1st Floor, St. Andrews Church CentreMount Park Road, London W5 2RSTel: 020 8810 8151e-mail: [email protected]

Contact a Family LambethLambeth Accord, 4th Floor,6 Brixton Road SW9 7AATel: 020 726 5270e-mail: [email protected]

Contact a Family Lewisham1 Forman House, Frendsbury RoadLondon SE4 2LBTel: 020 765 6Fax: 020 772 8494e-mail: [email protected]

Contact a Family SouthallSt. Georges Community Centre8-12 Lancaster Road, Southall UB1 1NWTel: 020 8571 681

Fax: 020 8571 6400e-mail: [email protected]

Contact a Family Southwark54 Camberwell Road, London SE5 0ENTel: 020 7277 446Fax: 020 770 6449e-mail: [email protected]

Contact a Family Sutton and MertonHill House, St Hellier Community AssociationBishopsford Road, Morden SM4 6BLTel: 020 8640 5525Fax: 020 8640 7799e-mail: [email protected]

Contact a Family Wandsworth1 Siward Road, London SW17 0LATel: 020 8947 5260Fax: 020 8947 9506e-mail: [email protected]

www.cafamily.org.ukHelpline: 0808 808 555

From our Chief Executive3 Srabani Sen: Helping to shape change

Contact a Family4 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 groups8 Finding the right funding: Tips on raising money for your support group

Benet news9 Child Trust Fund payments: Extra money for disabled children

Other news10 The road to victory: Fighting to get mobility benet for disabled toddlers

11 Disabled children and health: New report highlights NHS failings

12 Disabled childrens services national indicator: Progress update

Healthy living and well being13 Focus on all round wellness: Introducing this editions theme

13 MEND programme: Helping to get children t and healthy

14 Carrot and stick: How one parent gets her child moving

15 Brainwave: How one family have beneted 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

Resources18 Book review

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

Helping to shape changeSrabani 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

I hope you are having a very happysummer and have been able to makethe most of the sunshine when wehave had it!

If you are one of the many parentsinvolved in trying to inuence peoplewho plan local authority and primarycare trust services for disabled children inEngland, there are two things you mightwant to know more about.

Centre for Excellence and OutcomesThe rst is the Centre for Excellence andOutcomes. This organisation was set upby central government to pull togetherin one place the evidence of what worksto improve the lives of some of themost disadvantaged children in England.Disabled children are one of the groupsthat the Centre, often known as C4EO,are looking at. C4EO has done someinitial work to collate all the data availableon disabled children and to look atthe academic research on three areasin relation to disabled children: earlyyears, providing positive experiencesfor disabled children, and ensuring thatservices meet the diverse needs ofdisabled children.

C4EO have employed what they arecalling sector specialists to help PrimaryCare Trusts (PCTs), local authoritiesand childrens trusts improve their work

with and for disabled children and theirfamilies. But PCTs, local authorities andchildrens trusts have to ask for theirhelp. If you are involved in inuencinglocal services in England, you may want

to check out the work of C4EO, whichyou can do at t heir website,Web: http://www.c4eo.org.uk/disability

If you think it is useful, why not pointout the work of C4EO to your localservice commissioners and plannersand encourage them to bring in a sectorspecialist.

One of the things on C4EOs website isa community of practice where anyonecan go on and post their views aboutwhat works to improve the lives of andservices for disabled children and theirfamilies. Feel free to put something upyourself. The more parents that get theirviews across the better.

Commissioning Support ProgrammeAnother thing you might be interestedin if you are involved in inuencinglocal service planners is the work ofthe Department of Health and theDepartment for Children, Schools

and Families, to improve the way thatservices are commissioned. This isbeing done through the CommissioningSupport Programme. Services fordisabled children is one of the rst areasthey are looking at. You can nd outmore about this at Web: http://www.commissioningsupport.org.uk/

The Commissioning Support Programmeaims, through better commissioningof services, to improve outcomes forchildren under the ve headings of EveryChild Matters:

be healthy stay safe enjoy and achieve

make a positive contribution achieve economic well-being.

Tailor-made support will be availableto help commissioners do a better job.

Again, you might want to remind anycommissioners that you come intocontact with about this programme.

Campaigning news across the UKThings are also very busy on thecampaign front. In Scotland, ForScotlands Disabled Children are holdinga launch event as well as upping theircampaigning efforts. In Wales, DisabledChildren Matter Wales has been activelyinvolved in lobbying on wheelchairsand has been very successful atsecuring media coverage of the issues.In Northern Ireland, the Childrenwith Disabilities Strategic Alliance hasproduced a manifesto. In England, EveryDisabled Child Matters has been activelytrying to inuence the main politicalparties general election manifestos tomake sure that disabled children are apriority.

Summer celebrationsAnd now the fun stuff! As you will

probably have picked up by now, thisis our 30th anniversary year. All throughthe summer we are organising a seriesof fun events to celebrate our birthday,and I know that many of you aregetting involved. If you want to organisesomething yourself, we have developeda handy toolkit with some ideas of thingsyou could do. To nd it visit our websiteor download the PDF atWeb: http://www.cafamily.org.uk/big_day_out_toolkit.pdf

Whatever you get up to I wish you ahappy summer.

Srabani Sen

Why not point out

the work of C4EO

to your local service

commissioners and

planners and encourage

them to bring in a

sector specialist.

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

4 Keep us inmind Tam

9 Child TrustFund money

15 Brainwaveprogramme


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Contact a Family News Contact a Family News

Connected Autumn 2009 5

covering your costs and fundraising forContact a Family.

If youd like to take part in the Big DayOut and organise a picnic with friendsand families you can download the BigDay Out toolkit from our website. Web:http://www.cafamily.org.uk/big_day_out_

toolkit.pdf

Contact a Family has developed a toolkitto help families across the UK organisea Big Day Out Picnic a simple andinexpensive way of enjoying play andleisure time together as a family.

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

We want to encourage

families with disabledchildren to get out and

about and enjoy play

and leisure together.

Contact a Family is urging familieswho spend 10 per cent or more of thehousehold income on electricity andgas bills to get in touch and to tell usyour experiences. Your stories will helpus campaign to improve the situation formany other families in the same position.

Claire Pimm, Director of Policy andCommunications, said: We often hearfrom families about the difculties theyhave paying for heating bills. There aremany conditions and disabilities whichworsen in the cold weather or requireelectrical equipment for care. This meansfamilies with disabled children are morelikely to live in fuel poverty and we wantthe government to introduce measuresto help them.

The campaign will be calling for allfamilies with disabled children to haveaccess to grants to insulate their homesand help reduce bills. At present, if achild is in receipt of Disability LivingAllowance, their household is not eligiblefor Warm Front a government grant-

giving scheme to makehomes warmer, moreenergy efcient and helpreduce bills. We believeall families with disabledchildren should be givenaccess to the scheme.

We will also be callingfor families with disabledchildren on incomesupport to be given thecheapest fuel rates fromenergy suppliers. We would like to seesocial tariffs being opened up to all thosein receipt of Cold Weather Paymentsincluding families with disabled childrenon income support.

If you live in England, are spending morethan 10 per cent of your income onfuel bills electricity and gas combined and you own your home, please doget in touch. We are looking to speak tofamilies about their situation to provideevidence for a report which will supportthe campaign. We need to gather the

Calling all families affected by fuelpoverty support our campaignContact a Family is working with Consumer Focus to help families

with disabled children struggling to pay their fuel bills

evidence by 18th September. Tel: 0207608 8741 or e-mail: [email protected]

Contact a Family has been involved in acampaign to extend winter fuel paymentsto families with disabled children. We willcontinue to press for the annual paymentto be extended to families with disabledchildren, while also working on this latestcampaign to ensure families are livingin the most energy-efcient homes andare given the cheapest fuel rates fromenergy suppliers.

Contact a Family regularly makescomments and recommendations ongovernment legislation, policies andother proposals that are relevant tofamilies with disabled children. Recentlywe responded to the Prime MinistersCommission on the Future of Nursingand Midwifery.

The commission was launched in Marchthis year and has been set up to ensurethat frontline nurses and midwiveshave the skills to deliver 21st centuryquality services. In July the Commission

asked for our views. In particular theywanted to hear what we would like tosee nurses and midwives doing moreof and/or doing differently in the future whether in peoples own homes, in thecommunity or in hospital.

Following feedback from familieswe highlighted that all nurses andmidwives should listen to parents andnot dismiss their concerns, particularlyparents of children with rare disorders, orundiagnosed syndromes.

Getting your views across

An update on how Contact a Family has been feeding into theCommission on the Future of Nursing and Midwifery

We recommended that all nurses andmidwives receive disability awarenessequality training and are given helpto understand childrens behaviourand communication needs to ensuredisabled children are not put at risk ofnot receiving appropriate care. We alsowanted more nurses and midwives inthe future to be aware of the impactof disability on the whole family andprovide information on who can help.

Watch this space for feedback on this!

Get out and about forour Big Day OutCelebrate our 0th anniversary using our

Big Day Out Toolkit

s part of Contact a Familys 30thrthday celebrations, we are holdingg Day Out events this summer toncourage families with disabled children get out and about and enjoy play andisure together.

aire Pimm, Contact a Familys Director

f Policy and Communications, said:Our latest research shows that thepportunity to enjoy play and leisuregether for families with disabled

hildren is poor or unsatisfactory.

The Big Day Out hopes to changeat and we would like to see as manymilies as possible outdoors and takingart in a picnic together, visiting a localtraction, going to the beach or nearbyeauty spot or popping along to yourearest cinema.

The visiting party to the ChildrensCommissioner ofce also delivered a

framed copy of Finolas painting for MrBaillie to hang in his ofce.

the message Keep us in mind Tam wassigned by Contact a Family Scotland on

behalf of all disabled children in Scotland.

Ellenor Anwyl, Director of Contact aFamily Scotland, said: We wanted toextend a warm welcome to Scotlandsnew Commissioner for Children andYoung People on behalf of all thedisabled children of Scotland. We hopethat the new commissioner will continueto represent the rights ofallchildren,including disabled children.

There are around 70,000 disabledchildren in Scotland. They and theirfamilies want to lead ordinary lives. Theywant the same opportunities and toreach their full potential, so please keepus in mind.

Keep us in mind TamScotlands disabled children deliver

message to new Childrens Commissioner

ontact a Family Scotland andepresentatives of Scotlands disabledhildren delivered an important message the new Childrens Commissioner

ecently.

am Baillie was appointed Scotlandsommissioner for Children and Youngeople in May, taking over from Kathleenarshall. In July, Finola Forman, 17,

nd Adam Bojelian, 9, visited Mr Ba illieith a welcoming card from Contact aamily Scotland. The card a paintingf Edinburgh Castle was painted bynola, who has Cerebral Palsy. And inside

nola and Tam, with her painting

Adam with the card given to Tam


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Contact a Family News Contact a Family News


Throughout the summer, people fromacross the UK have stepped up to the

challenge to raise money for Contacta Family. Run or climb, they have all

Fundraising feats for familiesHow our fundraising heroes have helped raise much needed cash

Upcoming runsContact a Family has places availablefor The Santa 5K Run (Santa costumeprovided) on Sunday 6th Decemberin Greenwich Park. We are seeking30 men to take part in this event tocelebrate our 30th Anniversary.

Contact our fundraising team, e-mail:[email protected], Tel: 020 76088733 or visit our website for moreinformation.

Three Peaks ChallengeOn Saturday 21st June ve pluckyyoung ladies, Cassandra, Vanessa,Alison, Karen and Emma, supportedby three expert drivers, took on thechallenge of climbing three of the UKshighest mountains, Ben Nevis, ScafellPike and Snowdon, in 24 hours.

To prepare, the girls had to undergoa rigorous programme of training thatinvolved walking the South Downs onfreezing cold mornings and weekendsfor up to eight hours. They had towork hard as a team to maintain theirtime, surviving on very little sleep andrelying on their drivers to get themsafely from mountain to mountain asfast as possible.

They completed the challenge in themagnicent time of 22 hours, 25minutes fantastic!

Commenting on the highs of theirexperience the girls said: completingthe challenge in less than 24 hours,the stunning views on Snowdon, andthe rst beer after nishing!

And reliving the lows they said:struggling down Scafell Pike over wetrocks, so much physical exercise on

limited sleep, and the 9-mile walkback from Snowdon after nishing thecourse!

Emma decided to dedicateher part in the challenge tofundraise for Contact a Familyafter reading an article on thestruggles faced by familiescaring for a disabled child,and being inspired by thework of Contact a Family.Emmas already exceeded herfundraising target of 500 andis set to raise even more as

her employer, BAA, will be supportingher by sending us a cheque for 250.

Congratulations to all the team forsurviving this challenge and a hugethank you Emma for selectingContact a Family.

If youve been inspired to attempt a

similar challenge either in the UK oroverseas, then please contact ourfundraising team.

British London 10K RunOn Sunday 12th July, seven runnerspounded the streets of London toraise funds for Contact a Familyand awareness of its work. Over27,000 runners took part in thispopular event the course started at

Hyde Park, ended in Whitehall, andpassed by Trafalgar Square, St PaulsCathedral, Tower Bridge, the Houses ofParliament and Big Ben.

London Marathon updateIn the last edition ofConnectedwepublished a fundraising target gure of80,000 for the 2009 Flora LondonMarathon. We are delighted to reportthat this gure has been exceeded,currently standing at just over 81,212

and is set to rise even more. What awonderful result!

Our congratulations go to Fiona, Judy,Kaye, Tilde, Eke, Elaine and Sean forcompleting the course and ying theag for Contact a Family.

helped to make a real difference forfamilies with disabled children.

Emma, far right, with the rest of her teamduring the Three Peaks Challenge

Fiona, Kaye and Judy after nishing Eke and Tilde with their medals

Parent participation inactionInvolving parent carers at all levelsof planning and developing servicesis the best way of creating effectiveand responsive services that work forfamilies. Thanks to the extremely hardwork of parents across the country,the number of parents having a sayin local service provision has grownsignicantly over the last six months,with 89 per cent of local areasreporting a rise in the number ofparents involved in participation work.84 per cent of local areas say theyare reaching a wider range of parent

carers and 66 per cent of areas reportimproved joint working with localservices. All the parents were workingto very strict deadlines, helped byContact a Family and Serco working asTogether for Disabled Children, so thisis a huge success.

The purpose of parents forums wassummed up by a parent member of aParent and Carers Forum at a recentmeeting in Barnsley: To me it isvitally important that Barnsley Parentsand Carers Forum (BPCF) is whollyrepresentative of those parents, carers,individuals and groups who are notrepresented, and is strong, not militant;is determined, not dictatorial; isresponsive, not dismissive; and aboveall will insist on change, not hide fromit.

Web: http://www.togetherfdc.org

We want our missing

millions!For Scotlands Disabled Children(FSDC) campaign, of which Contact aFamily Scotland is a founding member,are currently campaigning to makesure disabled children are treated asa priority. Scotland got a new pot ofmoney when 34 million was madeavailable to pay for measures in theAiming High for Disabled Childrenstrategy for England. The expectationwas that this would be spent onmore and better services for disabledchildren, young people and theirfamilies. Weve pushed for this tohappen and awkward questions aboutthe 34 million were asked at First

Ministers Question Time.Where is the 4million?Where the 34 million has gone andhow it is being spent is a mystery wewant to solve. But we need your help todo it!

How you can help nd the missingmillionsSign up as a supporter and well tell youwhen the campaign starts. We will alsogive you campaign tools, like letters tosend to local councillors and MSPs.

Three ways to become a supporter ofFSDC

write to us at FSDC Scotland,FREEPOST, Contact a Family, FreepostLON8801, London EC1B 1EE

e-mail us at [email protected]. Put For Scotlands DisabledChildren in the subject line andin the message please put yourname, contact details and any otherinformation you want us to know atthis stage

call Donna or Kate on Tel: 0131 6592938 or 0131 659 2939

Disabled Children MatterWales highlight long delays inwheelchair provisionDisabled Children Matter Wales(DCMW), of which Contact a FamilyWales is a member has been voicingits concerns about unacceptable delaysin Wales for providing wheelchairs fordisabled children and young people.

Two reports published in 2006 byBarnardos Cymru and Contact a Family

Wales highlighted the difcultiesand delays disabled children andtheir families were experiencing withassessment, supply and maintenanceof wheelchairs, and there has been littleimprovement since then.

Marion Parry, a parent of a disabled childfrom Gwynedd said: We had to battlefor two and a half years to get a chair forour daughter and when it was eventuallydelivered it was totally unsuitable.

Recently DCMW held an event on t hismatter at the Senedd, the NationalAssembly for Wales, at which over 40people attended, to coincide with a

Welsh Conservatives Debate beingheld on wheelchair provision. DCMWhas urged ministers in Wales to ensureno-one in Wales has to wait longerthan a year for a wheelchair.

More help for families in theWest MidlandsContact a Family is extremely pleasedto announce that weve beensuccessful in securing funding forour work with families in the WestMidlands. Our West Midlands ofcecovers 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 Fundwill help us to support families withdisabled children in these areas overthe next three years. This means wecan employ a development ofcerand information worker who canprovide information to families in theWest Midlands about all aspects ofraising a disabled child. We can alsosupport local parents to set up theirown support groups to help others bysharing experiences and information.

Monitoring the Parent KnowHow DirectoryContact a Family is monitoring thedevelopment of the Parent KnowHow Directory, which is an onlinedirectory offering parents and thoseworking with them the ability to searchfor information about childcare and

families services, in both their localcommunity and nationally. Well beworking to make sure this directoryis useful for families with disabledchildren.

Annual audit of childrenscentresOur childrens centre team is currentlyconducting an annual audit of howchildrens centres are supportingfamilies with disabled children. If youhave any experiences you wouldlike to share please contact UnaSummerson, Tel: 020 7608742 ore-mail: [email protected]

Contact a Family news in brief


5/11


Support groups Benefit news


The NPDG (UK) has also enjoyed somesuccess through community and informalfundraising, and we have a proven trackrecord of partnership funding with othergrant-making trusts. In order to respondto the challenging nancial environment,we intend to implement a strongnancial policy, be aware of possible riskand focus on good governance.

Money from grants or trusts is usuallyfor a specic project which meansthe money is restricted in what youcan use it for. If your group wishes toexplore applying for money in this way,there are a number of websites whichprovide the details for many grant givingorganisations. You will need to put sometime in to research which organisationsor trusts are right for the service you areproviding.

As Toni pointed out, locating suitablesources of funding and makingapplications takes time and effort.Unfortunately, there is no short cut todoing this.

If you would like any further advice,please contact Louise Derbyshire,

(contact details below). Previous issuesofConnectedhave offered some ideason fundraising and how to completeapplication forms for grants. Pleasecontact us if you would like to receivethis information.

Next issue volunteersHave you used volunteers to help atevents or do specic pieces of work?

In the next issue we will considerthe pros and cons of groups usingvolunteers. If you would like to contributeyour experiences or offer tips to othergroups, please contact Louise Derbyshire,e-mail: [email protected] Tel: 020 7608 8715

Locating suitable

sources of funding and

making applications

takes time and effort.

Finding the right fundingHow to make the most of all available funding opportunities

any people are experiencing thench as costs go up and salaries seem either stay the same or disappeartogether. For support groups and smallharities, this can be a huge concern.ompetition from other charities cancrease because many are looking toe same sources of funding to maintaineir services, and individual donors havess money to give.

ne example of a small supportoup who have been working hard to

ndraise for their work is the Niemann-ck Disease Group (UK). Niemann-Picka group of rare, inherited, metabolic

onditions that normally affect children.here are a number of types of thesease, all of which are characterisedy an accumulation of fats in thever, spleen and bone marrow. Mostpes involve progressive neurologicaleterioration. The Niemann-Pickisease Group (UK) aims to supportsmilies affected by the disease throughdedicated clinical nurse specialist,elpline, information and throughnding research into the disease.

s Toni Mathieson from NPDG (UK)xplains: Securing funding to supportur work is not an easy process. As a

small national charity, the group oftenencounters difculties when applying forgrant funding. Many application formsare long and arduous, taking up time andresources that are scarce and precious.

With only two administrative staff, weare only too aware of the impact thisbureaucratic process can have on ourdaily activities yet it is essential that weincrease our efforts in this area and focuson creating successful applications thatwill ensure the continuation of our work.

Even a small grant can make a largedifference to our effectiveness, and weare continually seeking ways to inspirenew supporters, whilst retaining more ofour existing ones. Despite the economicdownturn, this past year has seen anupward turn in the amount of fundraisingactivities organised by our members,friends and families.

Achieving success can also bringchallenges there is an increasing needto demonstrate impact, to measureoutcomes and to ensure you are meetingthe criteria set out in your grant offer.Although this is an essential part of thefunding process, it can signicantly add tothe administrative burden.

Extra Child Trust Fund paymentsfor disabled childrenOur parent adviser and nancial expert, Derek Sinclair, explains

how the additional Child Trust Fund payments will work

In the last budget, the governmentannounced that it will make additionalChild Trust Fund payments to disabledchildren.

What is a Child Trust Fund?A Child Trust Fund (CTF) is a long-term savings and investment account

for children. Each child automaticallyreceives a voucher from the governmentfor 250, which their parents can useto open a CTF account. Children wholive in low income families are eligiblefor an additional trust fund payment of250. The government will then makefurther payments (of either 250 or500) on each childs seventh birthday.This money is then invested for your

child and will grow over time. Apartfrom these payments made by thegovernment, it is also possible for you,or your family and friends to makepayments into your childs account,subject to certain annual limits.

Extra payments for disabled children

From 2010 the government will alsopay an additional amount into the CTFaccount of a disabled child. This will be100 per year or 200 per year if a childis on the care component of DisabilityLiving Allowance at the highest rate.Invested over time, these additionalpayments should ensure that disabledchildren receive substantially higheramounts when they eventually come

to access the money held in their trustfund account.

Will all disabled children receive theseextra payments?No. In order to qualify for an additionalpayment from the government yourchild must have been in receipt of

Disability Living Allowance (DLA) atsome point in the previous year. DLAis a non means tested benet paid topeople who have additional care ormobility needs because of an illness ordisability. If your child is disabled but notcurrently in receipt of DLA, phone ourfree helpline, Tel: 0808 808 3555 forfurther advice or download our guide, Aguide to claiming DL A for children fromour website.

In addition, only children born on, orafter 1st September 2002 are eligible fora CTF. This applies regardless of whetherthe child is disabled or not.

When will my child be able to get themoney in their account?A child must normally wait until theyreach 18 years of age to access t hemoney in their account. However ifyour child has a terminal illness and isnot expected to live for more than sixmonths, you can get early access to buy

things that your child needs.

Phone the Contact a Family helplinefor further information on any aspect ofChild Trust Funds.

Help with mortgage interestcosts update

In our Spring edition, we providedinformation about the new rules onhelp with mortgage costs via certainmeans tested benets. These newrules include a shorter waiting periodbefore you start to get help with your

mortgage and an increase in themaximum amount of loan that can bemet.

At the time our article was written itwas thought these new rules wouldapply to most new claims made after5th January 2009. However, it hassubsequently become clear that the

situation is more complex. Whetherthese more generous rules apply to anew claim made after 5th January 2009depends on the claimants individualcircumstances including what otherincome they have.

For further advice, call our free helpline,Tel 0808 808 3555.

Funding linksThe Charity CommissionIndependent regulator for charitableactivity with useful information on their

website. They have recently producedguidance looking at the impact of theeconomic downturn on charities.Web: http://www.charitycommission.gov.uk

Funding CentralA guide to over 4000 grants managedby the NCVO.Web: http://www.fundingcentral.org.uk

FunderFinderInformation and advice aboutcharitable trusts and foundations. Alsohave information on writing grantapplications.Web: http://www.fundernder.org

Government FundingAccess to government grants, managedby the Directory of Social Changes.

Web: http://www.governmentfunding.org.uk

Grants OnlineSubscription based information onfunding opportunities.Web: http://www.grantsonline.org.uk

The Kings FundRun an Impact award designed toreward health sector charities.Web: http://www.kingsfund.org.uk

Turn2usInformation on access to grants.Web: http://www.turn2us.org.uk


6/11

0 Connected Autumn 2009

Other news Other news


New report shows disabled childrenmissing out on basic NHS careEvery Disabled Child Matters report demonstrates NHS failings

equipment or wheelchairs also facebattles. Parents tell of waiting years toreceive a wheelchair that meets theirchilds needs, with the child havingout-grown the chair by the time it isdelivered.

Disabled Children and Health makesclear that families are yet to experiencethe high quality and responsive health

services that would enable them tolead ordinary lives, as set out in therecent child health strategy, Healthylives, brighter futures . They are also notexperiencing the improved outcomesand experiences foreseen by thechildrens palliative care strategy, BetterCare: Better Lives.

EDCM is calling on the Departmentof Health and PCTs in England toimplement the following priorityrecommendations:

The Department of Health shouldinform PCTs that their annualOperating Plans will not be agreed

unless they demonstrate that theirspend on disabled childrens servicesand childrens palliative care servicesreects national policy expectations.

Every PCT should have a namedlead at a strategic level responsiblefor services for disabled children,including children with complex healthneeds and children with palliative careneeds, by December 2009.

Every PCT should publish informationon the additional funding they haveallocated locally for each nancial year(2008-2011) to disabled childrensservices, separately identifyingshort breaks, childrens communityequipment, childrens wheelchairs andchildrens palliative care.

EDCM board member and director of theCouncil for Disabled Children, ChristineLenehan, said: We have welcomedthe priority given to disabled childrenin the recent child health strategy andthe conrmation that PCTs have 340million in their baseline budgets from2008-2011 for disabled childrensservices, including childrenspalliative care.

But in the context of a devolved NHSthis will only make a difference to thelives of disabled children if every PCTdemonstrates strong leadership andhas a clear accountability structure fordisabled childrens services. To ensure

this happens, the Department of Healthmust take a stricter monitoring role inrelation 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

Every Disabled Child Matters (EDCM)has launched a new report whichunderlines the failure of the NHS tomeet even the basic needs of disabledchildren.

The campaign report, Disabled Childrenand Health, highlights a clear disparitybetween central government policyand local delivery. Despite recent

policy and funding commitments fordisabled childrens health services,the campaigns correspondence fromPrimary Care Trusts (PCTs) revealswidespread confusion about the rolesand responsibilities of the health serviceto support disabled children to leadordinary lives.

One parent of a child with a rare andlife-limiting condition who requires24-hour care told EDCM: We repeatedlysee local agencies passing the buckwhen it comes to agreeing care for myson. Social services tell us they cantprovide night care for him because it ismedical care, while health tell us theycant provide it because it is a familysupport service. Where are the needs ofmy son in all of this? We havent seenany evidence of joined-up working, andwe are made to feel like we have to begto get anything done.

The report highlights challenges across

a range of health services. Disabledchildren face barriers accessing universalhealth services such as GPs a nd dentists,often due to inappropriate attitudes fromhealth professionals or a lack of training.

Families with disabled children needingspecialist health services such as

The report highlights

challenges across

a range of health

services.

Contact a Family is one of the foundingmembers of EDCM, the campaign to getrights and justice for every disabled child.

Our parent guide, The NHS and caringfor a disabled childhas informationabout using the NHS and how to makea complaint. Phone our free helpline, Tel:0808 808 3555 for a copy or you candownload it from our website.

On the road to victoryHow one familys hard-fought battle could have benets for

housands of UK disabled toddlers

Back in 2005, when Justin was stillunder three years old, the seeminginjustice of the law prompted Stephenand Wendy to begin a difcult journey,to force the government to changethe law. Despite getting the car theyneeded two years later, the family weredetermined to see their ght through forother families in their situation.

Now in Summer 2009, after a four year

battle, the couple have succeeded ingetting a landmark court ruling whichmoves them a step closer to gettingmobility benets for disabled toddlersacross the UK.

Stephen said: Were very proud thatJustins action may change the lives ofthousands of disabled children and theirfamilies. We think that the non-paymentof mobility benets to under threes issimply wrong. Justin has been disabledfrom birth and his condition didntchange when he turned three. We wereleft virtually housebound and our qualityof life was seriously compromisedbecause of this rule.

Justin was born in June 2004 withPrader-Willi Syndrome. He is oxygendependent and cannot walk. The familyspent an agonising rst year of his lifewondering if he would survive.

When Justin was 16-months-old, his

respiratory nurse suggested the familyapply for the mobilitycomponent of DLAso they could get aspecially adapted car.

We were given allkinds of misleadinginformation at thattime. We appliedfor the benet butwere refused, so weappealed the decision,unaware of the rule.We were actually givenan appeal hearingat the DWP ofce inGlasgow, said Stephen.

The day before the appeal, we werecontacted by the ofce to say there wasno point attending the appeal becausehe wasnt three. That was the rst timewe heard about the rule. I was so angrythat I said we were going to attendanyway. I went along with Wendy andJustin and we were told our claim wastedious and ridiculous.

It was the familys relationship withCameron Fyfe, a human rights lawyer,which was the catalyst for the courtaction. When he heard their story,he suggested that they may be ableto challenge the law by arguing itcontravened their sons human rights.After doing some research, Fyfe said thatthey could seek a judicial review of t heDWP rule.

Last November the family appearedat the Court of Session in Edinburgh.During the hearing their lawyer arguedthat the law as it stands contravenesJustins human rights. The judge in the

case, Lord Woolman, published hisopinion in June this year. He ruled thatthe DWP may be breaching Justinsrights under European law. The rulingcould force the DWP to review its currentposition of non-payment of mobilitybenets to under threes. There could beup to 10,000 families in the UK affectedby this issue at any one time.

This is a signicant victory for familieswith disabled children in the UK. While itis likely that the law will change, there isno guarantee at this stage. Any changesin the law are likely to take some time.We hope to have an update on thesituation and the position of the DWP inthe next issue ofConnected.

he difference between a normal familyar and a Motability car specially adapted their sons needs is like night and dayr Stephen and Wendy Meek.

s soon as their son Justin reached hisird birthday, he was entitled to t he

mobility component of Disability Livinglowance (DLA), and the family got the

ar they had been dreaming about forree long, hard years. The Motability car

as tinted windows so they can changeustin discreetly when they are out.here are holders for his oxygen bottleso they dont roll about dangerously one car oor. And there is enough roomr all the family Stephen, Wendy,aitlin, Sophie and Justin as well asustins bulky but life-saving medicalquipment.

When we got the Motability car, weeaded straight out and drove to Lochomond. It was the rst time we hadeen able to go out all together as amily in one car. We were experiencinge like other families do and we had arilliant day, Stephen recalls.

nder the Department of Work andensions (DWP) rules, a child is onlyigible for the mobility component ofLA when they are three years old orver. Those eligible for high rate mobilityLA receive 49.10 a week to help withansport costs or can alternatively use

is to pay towards a Motability car.

Despite getting the car

they needed two years

later the family were

determined to see their

ght through.

ustin, centre, with his sisters Caitlin and Sophie


7/11


Other news Healthy living and wellbeingTheme of the issue


services should be looking to channelmoney and resources into improvingservices provided and increasing theirperformance against the disabledchildrens services indicator.

The questionnaires will be repeated onan annual basis, so areas can measurehow they are progressing. If you receivea questionnaire, please do take time to

ll it in and return it.

The results for the areas available to vieware at Web: http://tinyurl.com/r2aqlm

For more information on the NationalIndicator and the core offer visit Web:http://tinyurl.com/n6dvb2

assessments, explain decisions, involveparents in decisions about their childsservices and provide parents with theopportunity to feedback on services. Amore detailed breakdown of the returnedquestionnaires for these areas shouldappear on the Department for Children,Schools and Families (DCSF)website soon.

The DCSF will be sending the surveyout again in late September to reacha larger sample of parents of disabledchildren and measure performance inthe remaining local areas.

The results for these will be publishedfor all local authorities and primarycare trusts in December. Local

the Spring issue ofConnectedwe toldou about a survey being sent out to aample of parents of disabled children, ask for their views on the servicesey receive.

he survey asked parents about theirxperiences of health, education andare, and family support services. Them was to get feedback from parents of

hildren with a wide variety of disabilitiescross England. The answers parentsave given formed the baseline of theational Indicator for disabled childrenservices, also known as NI 54. Theerformance of 30 local areas has beenompared against this national baseline.ach area has received a score for howey provide information, carry out

The Disabled Childrens ServicesNational IndicatorForming a baseline for disabled childrens services

Families with disabledchildren among carersidentied at breaking pointby new researchCarers UK is calling for a radicaloverhaul of the benets and caresystem to prevent carers reachingbreaking point. New research publishedfor Carers Week found that almostthree-quarters (74 per cent) of peopleproviding unpaid care for a loved onewho is ill, frail or disabled have reached

breaking point due to the pressures oftheir caring role.

Life chances survey foryoung disabled peopleLeonard Cheshire Disability is currentlycompiling research into youngdisabled people and their life chancescompared to those of non-disabledyoung people. They are looking foryoung people between the ages of 16-21 to take part. The survey closes on5th October 2009 and completedsurveys will also be entered into a prizedraw for Amazon vouchers. To takepart, e-mail: [email protected] or visit Web: www.lcdisability.org

David Camerons plansto remove bureaucracyfor families with disabledchildren welcomeDavid Cameron, Leader of theConservative Party, has set out hispartys plans to help families withdisabled children. Writing in TheIndependentnewspaper, DavidCameron made a pledge to removethe bureaucracy that families withdisabled children face trying to accessthe support that they and theirchildren need. Srabani Sen, Chief

Executive of Contact a Family, said:We warmly welcome David Cameronsacknowledgement of the battle thatfamilies with disabled children havein getting support and applaud hiscontinued efforts in raising awarenessof the issues for families with disabledchildren.

OpenBritain newinformation resource fortravellers with access needsTourism for All UK, RADAR, and theNational Federation of ShopMobilityhave teamed up with national tourismbodies to create a new denitive guidebook and website for people with

disabilities and access requirements.OpenBritain will provide a recognisablebrand for all types of accessiblefacilities. Entries in OpenBritain willeither have had an access inspection,or apply for self-certication, with allmembers subject to random checks.The new annual guide book willreplace those currently publishedby Tourism for All and RADAR. Web:http://www.openbritain.net

ACT launches free FamilyCompanion for parentsACT, the Association for ChildrensPalliative Care, has launched a newpublication to help families and carersof children and young people with life-limiting and life-threatening conditionsunderstand what will happen followingtheir childs diagnosis. A FamilyCompanion to the ACT Care Pathwayfor children with life-limiting and life-threatening conditions takes parentsthrough the care journey that they andtheir child will experience, step by step.ACT will be distributing this publicationfree to families of children with life-limiting and life-threatening conditions.Tel: 0117 916 6422, or e-mail:[email protected] to order a copy.

News in brief

Keeping yourself and your whole familyhealthy can be tough. When yourebringing up a disabled child, your ownhealth often comes a poor second toeveryone elses.

Parents tell us time and again that theystruggle with the amount of stress theyexperience, ghting for the right servicesand support for their child. Then theresthe physical problems like back ache,pains and exhaustion that can comefrom the day-to-day caring for a child

and struggling with sometimes old andunwieldy equipment.

In this autumn theme ofConnected,were looking at things that work forparents to help deal with stress, likerelaxation and massage, and well begiving you a list of resources to help keepyou and your family healthy.

In our recent report What makes myfamily strongeralmost 60 per cent ofrespondents said that their opportunityto get a good nights rest was pooror unsatisfactory. In this issue weinterview a parent about a massage andaromatherapy course she attended andhow its beneted her familys sleep.

Other stories come from parents andorganisations that help disabled childrenstay healthy, including those withcomplex health needs and those who,

with a little help and communicationcan access mainstream healthy livingschemes, like the MEND programme.

In a recent national survey by theFoundation for People with LearningDisabilities, fathers were asked forideas on maintaining their health. Theysuggested that there should be regular

health check-ups (an annual MOT), thatthey would benet from using a gym orexercising, help with sleep problems andhelp with improving their diet. You maybe interested to see on the resourcespage that Carers UK have linked up withLloydspharmacy to offer free healthchecks for all carers, includingparent carers.

We hope you nd something useful tohelp you, or are inspired by our parentstories about what works for them.

And remember you can always call ourhelpline, Tel: 0808 808 3555 if you haveany concerns about your own health physical, nancial or emotional werehere to help and listen. You can also callour parent advisers about any aspectof your caring situation and your childsrights, health or education.

Healthy living and wellbeingIntroducing this editions theme, focusing on all round wellness

The programme is offered free tofamilies and they currently offer threedifferent programmes which familiescan join:

MEND Programme which is foroverweight children aged 7-13 yearsold

MEND 5-7s, which is for children aged5-7 years old, which also involvesparents or carers

Mini-MEND Programme, an early yearshealthy lifestyle programme for 2-4year olds and their families, whateverthe childs weight.

Find out more about the MENDProgramme at Web: http://www.mendprogramme.org

her capabilities but the targets can beadapted and have been. Marching roundthe supermarket as a group lookingat labels for fat and sugars was anexperience not to be forgotten, trust me!

Alice has loved and beneted fromthe exercise twice weekly. To have herparticipate with none of what feels likethe all too frequent requirements forextra support staff, or focus on what shecant do has been a welcome change.Alice and her brother David, doingsomething together is also good.

David just loved doing the course andrunning round as fast as he could.Embarking on a course that is afterschool twice a week for ten weeks doesrequire a huge amount of effort but Ithink we will notice a big difference withboth children after it for different reasons,so its worth it!

The MEND Programme is a fun coursefor families with children whose weightis above the healthy range for their ageand height. The MEND (Mind, Exercise,Nutrition... Do it!) programme helps

children and families manage theirweight better and lead healthier lives. Itruns twice a week after school time, intwo-hour sessions over ten weeks.

It was a pleasant change to attend theSt Helens and Halton MEND openevening and be welcomed with openarms by the nutrition leaders andexercise coaches alike and not to feel likewe were causing them extra work, whichso often happens. They immediatelyadapted the exercise course planned sothat my daughter, Alice, could work at herown level and achieve.

Alices level of learning difculties meanthat the nutrition aspects are not within

Mind, exercise, nutrition... do it!Ruth Card, one of our Volunteer Parent Representatives explains

how MEND has had a positive impact on her family


8/11


Healthy living and wellbeing Healthy living and wellbeingTheme of the issue


progress, and although he still has issueswith his mobility, we are sure Na thanwould not have achieved all he has donewithout the input we have had from theBrainwave Centre. Last year he becamethe youngest person ever to speak at

a UN Pre-sessional Formal Meetingdiscussing Childrens Rights in the UK.Not bad for a child who didnt talk untilhe was three!

Nathan is now 13 years old, and wecontinue to visit the centre aroundevery six months. Their support overthe years has included writing reportsfor statements and giving advice to hisschools. If we have any queries they arealways at the end of the telephone. Weare also lucky to have a great familyco-ordinator in our area.

When Nathan recently had an operationI felt condent to carry out his post-opphysiotherapy as most of it was alreadyin his programme. Our communityphysiotherapists are supportive of theprogramme, and it compliments thework they do.

Nathans sister, Cerys, also has CerebralPalsy, and she too is making great

progress with her Brainwave Programme.

Through our continued associationwith Brainwave we have come to knoweveryone at the Somerset centre verywell, with a f riendly rivalry developingover cricket. Its been hugely benecial toNathans health and well-being, and toours as a family. Above all, the Brainwavetherapists have continually encouragedand supported us in our goal of helpingour children to reach their full potential,and have empowered us as a family tobelieve that they can achieve.

A carrot and stick for ahealthy lifestyleAdele Meader takes a light-hearted look at how you might gently

persuade your child to take part in some exercise

y son can walk lovely when heants to,hich is rare.

Why oh why should he walkhen he can be pushed everywhere?

We all know, and weve been toldnough times by the government, that

xercise is a vital part of healthy living.ut whats a parent to do if your child hasfculty moving around. Or if your child,

ke my son Christopher, simply refusesmost of the time to walk, preferring tose his buggy.

his was all ne and dandy whenhristopher, who was born withq11.del (a rare chromosome disorder),as small, but beware the just pick himp, we are late already and stick him

his buggy, he loves the sensationptions. There may be unexpectedonsequences of this as your childets older, expecting to use their buggye whole time even if they can walk.

ou could quite possibly feed into t heirhallenging behaviour in later life.

aving a child who can walk, but thenhooses not to, left me obsessing overs lack of exercise and consequentlys bowel movements, or lack of, whichtimately left me thinking of creativeays to get Christopher on his feet usingarrot and stick style tactics.

discovered that favourite toys can getou to the corner shop, and to the car,

and even around the town. For severalyears a member of our family wasassigned to carry Christophers favouritetoy to entice him to walk. It was one ofthose wooden contraptions with brightlycoloured beads on it that he could pushround some bendy wires. It was heavyand cumbersome and needed its own

seatbelt, but it got us out of the houseand Christophers digestive systemworking.

A ball was great for a couple of years.Christopher should have been entered inthe Guinness Book of World Records forthat bouncing! We could only really usethis to get down the garden path to thecar though as once too often we forgotthe green cross code and ran out in frontof speeding cars...

Food can also act as a good carrot,although an actual carrot probablywont be enough or certainly not inChristophers case.

Food is Christophers favourite past-time.I once managed to get Christopher towalk two miles around Stourhead, aNational Trust estate in Wiltshire, oneafternoon, following a piece of gateaux.The Womens Institute had a cake stallin the grounds on this par ticular outing,

and my son clocked the goodies beforeI had. Still to this day I wonder how hesaw that stall. I actually think he has a ninbuilt cake radar system! Anyway, in trueLittle Britain style, my son leapt from hiswheelchair and ran at great speed to thecake stall. Only my sensible shoes savedthe WI ladies from collapse.

After lots of shrieking from the WI gals,I felt obliged to buy the piece he wassquishing between his ngers. It waskindly put onto a paper plate whereby Ithrew some money their way whilst hot-footing it as far away as I could possiblyget. And far away I managed too, beforewondering if getting my son to run atspeed, and boy, was he focused, after

a piece of chocolate cake could bedeemed child cruelty. Anyway, thatthought didnt last long. I tend to use thistactic at most stately homes, parks a ndbeaches. Desperate times can call fordesperate measures, as you can see.

I also enlist the help of other parentsand professionals where I can, to getmy son ambulant. The best one forhim at the moment is swimming. Imvery lucky with the school he attends,who have him swimming three times aweek in the school pool. Its essentiallylike a massive warm bath, with soft dimlighting and classical music.

Christophers opt out from walking leftme constantly re-evaluating everythingwe did with him in how to get himmobile. And whilst his school havesuggested he might benet from moreswimming, their pool is a far cry fromthe local baths. I cant quite face theprospect of minus 12, uorescent lightand screaming kids jumping in aroundChristophers head. Given the choice,Id rather give him a piece of Victoriasponge any day of the week!

Food can also act as a

good carrot, although

n actual carrot

probably wont be

enough or certainly

not in Christophers

ase.

Brainwave aids child developmentand family well-beingDonna 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 family has been visiting theBrainwave Centre in Somerset for about11 years now.

Brainwave is an independent charitywhich helps children aged six months

to 12 years old who have a brain injury,genetic condition or developmentaldelay.

Like many families, when our sonNathan was diagnosed with CerebralPalsy, we were referred to our localchild development centre. However,we increasingly felt that the a mountof physiotherapy input he was gettingwas not enough. And when Nathanwas about two and a half years old, wefelt the time was right to explore otheroptions.

We had family members who lived inSomerset and recommended we try theBrainwave Centre, so we booked for aninitial two-day assessment.

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

were taken through the assessment, witheverything being fully explained to us aswe went along. On our second day wewere taught a programme of exercises,to be carried out daily, which focusedon both his physical and cognitive

development.

The most important aspect to come outof the assessment was the positive focuson Nathans abilities, and how we coulddevelop those abilities. There was abelief in him that we had not had beforefrom professionals. The therapists at thecentre encouraged us to believe that wecould help our son.

When we returned home with ourprogramme and video of our exercises,I set about nding volunteers who couldhelp us carry them out, as many requiredtwo people. We had an overwhelmingresponse from the local 6th Form Collegeand soon had many students visiting usevery week to lend a hand.

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

Visit Web: http://www.brainwave.org.ukor contact our helpline for informationabout similar organisations.The Giles family on a recent holiday to Disney World

In true Little Britain

style, my son leapt from

his wheelchair and ranat great speed to the

cake stall.


9/11


Healthy living and wellbeing Healthy living and wellbeingTheme of the issue


Staying healthyHandy resources to help you and your family

National charity dedicated to theintegration of people with and withoutphysical disabilities in all aspects ofsociety. Has a network of nearly 200clubs throughout England and Walesfor all age ranges, offering activities andholidays which members can share andenjoy together.

Organisations for childrenMOVETel: 020 7403 6382Web: ht tp://www.move-europe.org.ukActivity based programme which usesthe combined knowledge of education,therapy and family to teach severelydisabled children and adults the skills of

that Im learning something newis brilliant.

What have you gained from thetraining course on pampering?The training was excellent. Its been sohelpful, in particular with Jessica. Usuallyshe doesnt like to be touched but nowshe loves it when I use the oils. I dontgenerally do massage with her, I usethem for more of a relaxation techniquewhich really helps her sleep. And this ofcourse helps the whole family!

times. I worry that the extra time I needto spend with Jessica leaves the otherchildren out. Its hard when you haveone child that needs so much moreattention than the others.

How long have you been attendingpamper sessions?Apart from the course, only about threeor four sessions but they are reallyfantastic. Its something thats just for meand most of the time, I have no time forme so this break in routine and the fact

ohra Gonzalez tells us about severalamper sessions she has attended atur Southwark project ofce. As partf the Body Shop Foundation fundingouthwark received, she also took parta month course to learn the basics of

massage and aromatherapy.

an you tell us a little bit about yourmily?

We have three children, Andres, Stevennd Jessica who has severe learningsabilities and autism. Life is difcult at

Finding a little me timeEveryone deserves a break and a bit of pampering, no group more

o than parents and carers of disabled childrenSome tips to help parents relax andtake care of themselves:

dont feel under pressure to doeverything

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.

The training has also boosted mycondence. I meet with other mumsonce a month and I have passed on

what Ive learnt and they have been soreceptive to it. To share this with otherstruggling parents makes me realisehow much this sort of thing is needed.I would love to do a more advancedcourse but it has to be one that parentscan afford as some are so expensive.

How do they affect your health andwell being?We all sleep better and the atmosphereat home is more relaxed and calm.Jessica can be hyperactive and usingcertain oils helps to calm her down.When you have a disabled child, you canbe so busy that you dont realise thatthere are things that can help you andyour family. Thats what this has taught

me that I can sometimes live in themoment and experience a sense of calmand wellbeing.

s a parent of a child with a disability ordditional needs, its important you lookter your own health and wellbeing.

he Carers (Equal Opportunities) Act004 requires local authorities to tellarers about their right to a careersssessment. It also makes sure thatork, education and leisure issues areonsidered when youre being assessed.

he aim of the carers assessement is to

ve you a chance to tell social servicesbout the things that could make lookingter your child easier for you. This

may result in getting ser vices or directayments to meet your assessed needs.ou can contact your local social services request an assessment.

arers UKarersLine: 0808 808 7777

Web: http://www.carersuk.orgave lots of useful information for carersnd run an advice line. They have alsoartnered with Lloydspharmacy so theirharmacists can offer healthcare advice carers and free health checks.

rincess Royal Trust for CarersWeb: http://www.carers.org

ffers support services for carers, with

branches throughout the UK, some ofwhich provide training, massage andrelaxation at reduced prices. Also hasinformation on their website aboutmanaging stress and taking care ofyourself.

Carers DirectTel: 0808 802 0202Web: ht tp://www.nhs.uk/CarersdirectInformation, advice and support forcarers including a free helpline and

database of local services.

Complementary healthcare: a guideWeb: http://tinyurl.com/2tmyn2The Princes Foundation for IntegratedHealth have an online guide that offersbasic information about complementarytherapies, what they are used for andnding a qualied practitioner.

Dealing with stress and anxietyParents often tell us they feel so stressedand overwhelmed coping with theirchilds needs and battling to get the rightservices they start feeling anxious all thetime. They may even go on to developdepression. If youre feeling constantlyanxious, its important to seek help now,rather than carry on coping until yourecompletely burnt out. Your GP or local

carers centre should be your rst portof call. They can put you in touch withcounselling services, relaxation classes orrefer you elsewhere if necessary. You canalso ask for a carers a ssessment.

Some Princess Royal Trust for Carerscentres provide counselling themselves,or can refer you to your GP or anothervoluntary organisation in your arealike Mind. Or you can nd a trained,registered counsellor or psychotherapist

at the British Association for Counsellingand Psychotherapy, Tel: 01455 883316 orWeb: http://www.bacp.co.uk

Whatever you do, its important to tellyour GP youre the parent carer of adisabled child as they can be a gatewayto lots of services a nd support. They canput a note on your records and any newservices from them can be sent to you.

Managing Stress for CarersWeb: http://www.cerebra.org.uk/parent_support/support/stress.htmTel: 0800 328 1159This book produced by Cerebra is basedon their research project and is aimedat helping carers to manage stress. Thebook can be downloaded from theirwebsite or is available from their helpline.

sitting, standing, walking and transferringto the very best of their ability. Aimsto give children more opportunities forindependent movement.

PhabTel: 020 8667 9443Web: htt p://www.phabengland.org.uk

Phab rst started in 1957, a time whenthere was little available in termsof accessible clubs for people withdisabilities. At that time it was apparentthat people with physical disabilitieswanted to enjoy the same activitiesas their able-bodied friends withoutbeing patronised. Phab was set upwith the aim of offering social activitiesfor everyone, regardless of ability anddisability, which can have a hugepositive impact on peoples heath andwellbeing.

As Janine Williams, Phabs LondonDevelopment Ofcer commented:Sometimes our clubs are peoples lasthope. Often a child can be excludedfrom a swimming club or scoutssimply because they are not able tocope with his or her disability, due tolack of accessible facilities or training.Mainstream clubs arent always able tocope with a disabled child, but Phabclubs can really help encourage self-condence and independence, andcan provide social or sports activitieswhich the whole family can enjoytogether.

Thelma, who takes part in a Phabclubs, said: Belonging to the Phabclub has made such a difference tomy life in many ways. I have been amember of Phab for many years nowand personally have made so muchprogress in my life. Phab makes yourealise that you are not alone in yoursituation and it inspires everyoneto have a happy and laughing club,

where the members are all friendswith each other.

Today Phab clubs offer a wide rangeof activities, depending on what theirmembers want arts and crafts,drama, discos, swimming, sailing, visitsto theme parks and outdoor activitycentres.

As Rebecca Hargreaves, PhabsNational Development Manager, says:Many children miss out on schooltrips because of access issues, but ona Phab trip all the activities are totallyaccessible. Some youngsters use a

wheelchair, some have a sensoryimpairment and others are physicallyable but have other needs, andeveryone participates very successfully.In addition we run groups for olderchildren where they learn more aboutlooking after themselves and can gainvaluable life skills.

For contact details, see below.

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


10/11


Resources


Resources - Local contacts

things in a different way can bring thesame results. It also covers relationshipsand behaviour management strategies.

Session seven, Supporting your child and you shows how challengingbehaviour can affect the family asa whole. It reinforces the need forconsistency and for family members towork as a team in order to address issuesbeing experienced.

Sessions are clearly set out and designedto be easily understood by those whomay have limited formal training. Itsencouraged for participants to share theirexperience with others and suggests thatthe realisation that you are not on yourown can help put things in perspective,

which can then help to increasecondence 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

This trainers guide is intended toprovide parents and carers, as well asprofessional trainers, with materials todeliver training in positive behaviourstrategies. There are eight sessions in all,with PowerPoint slides (on aCD-ROM which is included), handoutsand session plans.

After ice breakers and an introductionit starts off with asking people to thinkabout what we feel is acceptablebehaviour, and how we react to it. Thereare activities to enable participants toexamine how personal experience,mood, and capacity to manage abehaviour can affect our view of somebehaviours. It looks at things such asintensity, frequency and triggers and

discusses how a behaviour may oftenfeel more intense and difcult than itappears to others because of the way itis experienced.

It goes on to look at causes, and aimsto give participants some insight intobehaviours and the reasons for them. Itencourages participants to nd a way ofsupporting their child to see that doing

My name is Jacqui Law and I am theVolunteer Parent Rep for Dumfries andGalloway. I live there with my husbandGraham and our amazing daughter,Sarah, who is 13 years old. Sarah has arare chromosome disorder, Ring 18 andan autistic spectrum disorder.

About six years ago, I started thinkingabout returning to work and how Icould help other parents. Because

of my background in advice, I havevery strong views about the quality ofinformation and advice people shouldreceive. I believe information should beaccurate, accessible and readable. I alsobelieve passionately that parents andcarers of children with a disability are ahuge and untapped resource, and that

the commitment and experience theybring can only enhance the work of anyorganisation supporting families likemine. When I looked at what Contact aFamily had to offer to families, I felt then,as I do now, that this was an organisationwhich could make a difference.

There really is no typical day or evenweek for me! Like all volunteer parentreps, I have a dedicated phone line

in my home so parents, and anyoneinvolved with families with a disabledchild, can call me with an enquiry orsometimes just to talk. I take quite a fewenquiries by e-mail as well.

I also give talks about Contact a Familyto parent groups and professionals,

have a stand at events, representContact a Family locally at meetings andam involved in representing parentsviews in consultations. And no, Im notsupermum. I dont do all of this at theone time! Some months my phone linecan be quiet, and other times, like thislast month leading up to the schoolholidays, it can be really busy.

Ive had 16 enquiries this month, which

is quite a lot. The school holidays canbe very stressful for parents like us. Mostof the calls I took last month were fromparents who were anxious about howthey were going to cope with their kidsfor the holidays, about the shortage ofleisure and social opportunities andgenerally about needing more shortbreaks. I can let parents know what isrunning locally and who to contact to askfor information. Sometimes I just listenand that can help. Sometimes thougha parent will call and ask a question Ijust cant answer, for example complexbenets advice, so I refer them to ourhelpline.

Recently a mum I spoke with ages agophoned. Both our kids are on a glutenfree diet. She called to tell me she hadmanaged to nd a gluten free birthdaycake for her boy, and she rememberedabout Sarah so phoned with the details.It was a lovely thing to do, and remindedme why I love doing this because

supporting each other really helps makea difference to all of us.

A day in the life...In our new feature, we hear from Jacqui Law, about her

experiences as one of our Volunteer Parent Representatives

Jacqui with her daughter, Sarah and husband, Graham

Volunteer Parent RepresentativesContact a Family has a team of VolunteerParent Representatives throughout theUK. They are all parents or carers ofdisabled children themselves, some withquite complex and rare conditions. Theyfully appreciate the impact of caring for adisabled child.

Our team of Volunteer ParentRepresentatives offers someone to talk

to and signposting to local sources ofinformation and support for families.

Family WorkersContact a Family has a team ofexperienced Family Workers, coveringdifferent parts of the UK. Our FamilyWorkers can help with any of the widerange of issues that families can facewhen caring for a disabled child, such asclaiming benets, providing information

about SEN, through to putting you intouch with local and national sourcesof support.

How to nd your local contactContact our helpline, Tel: 0808 8083555 or check our website, Web:http://www.cafamily.org.uk/inyourareato nd out if there is a Family Worker orVolunteer Parent Representativenear you.

Local contacts support from Contact a Family

upporting parents and carers

A trainers guide to positive

ehaviour strategies

haron Paley, Chris Stirling and

Mark Wakeeld


11/11

Contact a Family209-211 City RoadLondon EC1V 1JNTel: 020 7608 8700Fax: 020 7608 8701

e-mail: [email protected]

www.cafamily.org.uk

www.makingcontact.org

Ring the Contact a Family freephone helpline foradvice and information on any aspect of caringfor a disabled child.

Contact a Family is the only UK charity providing

support and advice to parents whatever themedical condition or disability of their child. Ourhelpline is a one-stop-shop for parents andfamilies whenever they need answers.

Registered Ofce: 209-211 City Road,London EC1V 1JNRegistered Charity Number: 284912Charity registered in Scotland Number: SC039169Company limited by guaranteeRegistered in England and Wales No. 1633333VAT Registration No. GB 749 3846 82

Freephone helpline: 0808 808 555Textphone: 0808 808 556Open Mon-Fri, 10am-4pm & Mon, 5.0-7.0pm

Getting in contact with us

Contact a Family - Connected newsletter

Documents

Transcript of Contact a Family - Connected newsletter