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Connected Spring 2010

Contents From our Chief Executive

Connected Spring 2010 3

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: 0131 659 2930e-mail: [email protected]

Contact a Family Cymru33-35 Cathedral Road, Cardiff CF11 9HBTel: 029 2039 6624, Fax: 029 2039 6625e-mail: [email protected]

Contact a Family North East England RegionThe Dene Centre, Castle Farm RoadNewcastle upon Tyne NE3 1PHTel/Fax: 0191 213 6300e-mail: [email protected]

Contact a Family North West England Region6th Floor, St. James HousePendleton Way, Salford M6 5FWTel: 0161 743 0700, Fax: 0161 743 0711e-mail: [email protected]

Contact a Family West Midlands RegionProspect Hall, 12 College WalkSelly Oak, Birmingham B29 6LETel: 0121 415 4624, Fax: 0121 415 4922e-mail: [email protected]

Contact a Family EalingRoom 3, 1st Floor, St. Andrews Church CentreMount Park Road, London W5 2RSTel: 020 8810 8151e-mail: [email protected]

Contact a Family LambethLambeth Accord, 4th Floor,336 Brixton Road SW9 7AATel: 020 7326 5270e-mail: [email protected]

Contact a Family LewishamLeemore Central Community HubBoneld RoadLondon SE13 5EUTel: 020 8297 8056e-mail: [email protected]

Contact a Family SouthallSt. Georges Community Centre8-12 Lancaster Road, Southall UB1 1NWTel: 020 8571 6381, Fax: 020 8571 6400e-mail: [email protected]

Contact a Family Southwark54 Camberwell Road, London SE5 0ENTel: 020 7277 4436Fax: 020 7703 6449e-mail: [email protected]

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

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

www.cafamily.org.uk

Helpline: 0808 808 3555

From our Chief Executive3 Srabani Sen: Hailing in the Springtime

Contact a Family4 Disabled children let down:Mobility claims for under threes rejected

5 West Midlands lottery success: New members of staff appointed

6 Counting the cash for families: Your one-stop shop for benets advice

7 Support for All: The Families and Relationships Green Paper

7 News in brief: Showcase of our services

Benet news8 Interested in tax free? Saving tax on your interest, plus Savings Gateway

Other news9 Budding musician gets head start: Help from the Family Fund

10 Make every disabled child matter: EDCMs election campaign toolkit

11 Award-winning mums: Announcing Tesco Mum of the Year awards

Support groups12 To be... or not to be a charity? When to register your group as a charity

Working and childcare13 A little help goes a long way: The need for exible working

14 Does life get easier? The trials and tribulations of part-time working

15 Volunteering back to work: Rediscovering your own identity

16 A super-human task: A sympathetic employer can make all the difference

18 The ght to work: An interview with Sharon Coleman

20 Relying on each other: Frustrations at the lack of suitable childcare

21 Whos looking after baby? Update on the Disabled Childrens Access

to Childcare (DCATCH) childcare accessible for all project

23 A day in the life: The hectic timetable of a Volunteer Parent Representative

Hailing in the SpringtimeSrabani Sen, Contact a Familys Chief Executive considers the

impending election and calls for your help with a new survey

for drafting their manifesto to try andpersuade them to include families withdisabled children.

In the run up to the election EDCM,along with its sister campaigning alliances

For Scotlands Disabled Children,Disabled Children Matter Wales andthe Children with Disabilities StrategicAlliance in Northern Ireland, is launchingan election pledge asking all MPs,regardless of their political afliation tosign up to some core commitments andactively work for families with disabledchildren. To nd out more, see page 10.Please encourage your MP or prospectiveparliamentary candidates to sign up.

Also, when you get the inevitable knockon the door from your local electioncandidates or their campaigners, please

make sure to ask them what they willdo for families with disabled children, iftheyre elected. The more people whoask on the doorstep about politicalparties plans for disabled children,the more this will get fed back to thedifferent parties headquarters making itmore likely politicians will take disabledchildrens issues seriously. Your voicereally does count, particularly as thiselection is likely to be so closely fought.

On to a very different race now. It is notlong to go before the London Marathon.Twelve intrepid runners will be runningthe Marathon to raise money for Contacta Family. As you know we are a charity,

and without the efforts of peoplefundraising for us, we would not be ableto keep vital services going. So pleasesupport these runners, and Contact aFamily by donating as much as you can.

For more on donating to Contact aFamily, please contact the fundraisingteam at [email protected]

I hope by the time you read this, thesnow will have well and truly stoppedand the crocuses will be peepingthrough. Happy Spring, and thank youfor your continued support of Contacta Family.

Connected informationEdited by: Karin Beeler, Elaine Bennett, Adele Humphries and Nathalie de Broglioe-mail: [email protected] Design and layout by: Adele HumphriesNote: 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 2010Next issue: The Summer edition ofConnectedwill be published in May and focuses on family.We are always interested in stories, especially from parents. If you would like to contribute, pleasesubmit articles up to 750 words. e-mail: [email protected] The deadline is 14 April 2010.

6 Cash Countsand survey

11 Mum ofthe Year

16

What will the date be?Will the Conservatives

win? Will there be a

hung parliament? What

will it all mean?

As I write this editorial, ecks of snoware falling outside my window. It hasbeen one of the coldest winters in avery long time thats left many of usshivering in our shoes and, in somecases, digging ourselves out of snow inorder to get around. The freezing weatherreminds me painfully of the results ofthe Counting the Costs Survey whichContact a Family carried out in 2008.Amongst other things, Counting the

Costs showed that:

One in six disabled children lives ina household struggling to afford foodand heating

Almost half of families have borrowedmoney from friends and family, withone in ve using the cash to pay theirheating bills.

Have things changed for families withdisabled children in the past two years?Contact a Family wants to nd out, sowe are repeating the survey. We needas many families with disabled childrenas possible to take part. As well as doingso yourself please! we would begrateful if you could encourage otherfamilies you know to do the same.The more responses we get, the morepowerful the results. This will help us inour lobbying efforts to make families withdisabled children a political priority in allfour nations of the UK. For more details,please turn to page 6.

Speaking of lobbying, its not long togo now until the much trailed GeneralElection. Media speculation has beenbubbling over for months now. What willthe date be? Will the Conservatives win?Will there be a hung parliament? Whatwill it all mean?

Behind the scenes, the Every DisabledChild Matters (EDCM) campaign hasbeen working to inuence each of themain political parties, asking them tocommit to improving the lives of familieswith disabled children across the UK.We have been working with the leadperson in each party who is responsible

A super-human task

Srabani, above left,

cheers on a young Contacta Family Santa, at theSanta Run, GreenwichPark, December. Ournext big event is the AprilLondon Marathon...
http://www.cafamily.org.uk/mailto:fr.team%40cafamily.org.uk?subject=mailto:library.team%40cafamily.org.uk?subject=mailto:library.team%40cafamily.org.uk?subject=mailto:fr.team%40cafamily.org.uk?subject=http://www.cafamily.org.uk/


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Contact a Family News Contact a Family News


Revised guidesnow available

Revised parent guides, WorkingandA guide to dealing withbullying: for parents of disabledchildren, are now available.

Go towww.cafamily.org.uk,choose Publications, thenBooklets/parent guides todownload a PDF, or call ourhelpline on 0808 808 3555and ask for your free copy.

West Midlandslottery successFamilies and groups in the WestMidlands will be pleased to hear that asa result of successful funding from theBig Lottery Fund, two new membersof staff are now in post. Jan Eastwood,Development Manager and Liz Reynolds,Information Ofcer, both started at thebeginning of the year and are lookingforward to working with, and meetingmany of the families in the West

On your marks, get set...London Marathon Sunday 25 April 2010

The London Marathon is one of themost prestigious and exciting races inthe world. As usual, this years route isset in the City of London and passesmany historical sites before reaching thenishing line in St James Park.

If you are interested in running forContact a Family, please contactour fundraising team on 020 76088733. As a member of our team, you

will receive a guaranteed place,support and advice, in addition toa personalised athletic T-shirt. Youwill be expected to pay a deposit of50 and pledge to raise a minimumof 1,500.

If youre not the running kind, whynot just come along and join ourgroup of supporters? It would begreat to meet you there.

Midlands. They will be offering up-to-date advice and support to families ofdisabled children in the West Midlands,as well as providing workshops, events,training and support for existing and newlocal groups.

Contact details for the ofce can befound atwww.cafamily.org.uk/Inyourarea, or call 0121 415 4624.

Website launch to ndmissing millions

The coalition founded by forScotlands Disabled Children (fSDC)has launched a national campaignto nd their missing millions. Localauthorities (LAs) will receive 11.3million for 2010-11 from the ScottishGovernment, the nal third of a total34 million given for transformingservices and support for disabledchildren and young people. Butthe money was not ring-fenced,

meaning LAs could spend it onother services.

Efforts by fSDC to track down howcouncils have spent the millionsreceived in 200809 have provedfruitless. We need the help of familiesin Scotland to persuade councils tocommit to spending the nal thirdof the Missing Millions on providingmore, better and new services fordisabled children and young people.

Help Find the Missing Millions!at the websitewww.fsdc.org.ukor contact Kate Higgins, e-mail:[email protected],Tel: 0131 659 2938

Disabled children letdown by rulingontact a Family is deeplysappointed at a recent court ruling

ejecting a challenge to the law whichrevents disabled children under threeaiming mobility benets.

tephen and Wendy Meek fromanark, whose son Justin cant walknd is oxygen dependent, argued inourt that the Department for Worknd Pensions regulations contravenedeir sons human rights (seeonnectedAutumn 2009).

ut judge, Lord Brodie, at the Courtf Session in Edinburgh rejectede claim.

rabani Sen, Chief Executive of ContactFamily, said: We strongly believe theurrent rules barring disabled childrennder three from claiming mobilityenets is unfair. Around 7,000 of the

most vulnerable disabled children ine UK are affected by this rule.

Families with severely disabled younghildren are often left houseboundecause they dont get help towardsavel costs. Some children need travel with bulky and life-savingquipment. It is not down to their ageat they have mobility difculties.nd yet their families have to struggleithout the mobility benet for threeears before it can be paid.

urrent Department for Work andensions regulations state that

hildren under the age of threee not entitled to the mobility

omponent of Disabilityving Allowance.

tephen and Wendy Meek began theirgal challenge in 2005 when Justinas just a baby. They had to take him hospital 150 times during his rst

ear alone and paying 500 a monthr a disabled access taxi service was

nancially devastating.

ustin Meek is now over ve and haseen eligible for mobility benets forome time, which the family choose tose on a specially adapted vehicle. Yettephen and Wendy continued their

ght on behalf of other disabled toddlersand their families in the UK, culminatingin a judicial review at the Court ofSession in Edinburgh in Novemberlast year.

During the hearing, the family andtheir legal team claimed that if the lawrestricting the 45 a week mobilitypayments was fairer, up to 7,000children throughout the UK wouldbenet. However, the written rulingrejecting the Meek familys legalchallenge was published on 16 February.

Lord Brodie ruled that parliament hadtaken the decision on the basis of expertadvice and that the regulations did notcontravene Justins human rights.

Srabani Sen added: Despite thedisappointing result, we applaud theMeek familys efforts to challengethis law on behalf of all other familieswith disabled children in the UK andfor raising awareness of this veryimportant issue.

Participation grantlevels set at 10kParent participation grant levels for2010-11 have now been conrmedat 10,000. These can be applied forby parent forums working in Englandto improve services in their localarea under Aiming High for DisabledChildren (AHDC).

More details and applicationsforms can be downloaded from:www.togetherfdc.org/Topics/PPFundingandGrants.aspx. The closingdate for applications is 30 April.

A recent survey sent to parent forumsshows that, since the start of the AHDCprogramme, more areas are now

producing newsletters for families ofdisabled children, involving parents inconsultations and have structures tosupport parent forums.

Read more about the types of activitiesthat have been taking place acrossEngland on the Together for DisabledChildren (TDC) website.

Resources for professionalsKeep up to date with the Contact a Family resources and briengs

Resources can be downloadedfromwww.cafamily.org.uk/professionals/childrensservices/resources/resourcepack.html

Contact a Family provides childrenscentres and family information serviceswith resources to help them provideinformation relevant to families withdisabled children.

Many childrens centres and some familyinformation services have purchasedour Resource Pack which contains allour guides for parents (currently thereare twenty seven) along with postersand leaets. All the materials come ina folder, which is particularly useful forfamily support workers and outreach staffwhen visiting families at home.

Keeping track of changes, particularlyaround benets and tax credits can be

challenging. Contact a Family sendsout new and updated guides overthe course of the year, ensuring theinformation in the resource pack is keptup to date.

The Contact a Family Resource Pack isideal for anyone who meets or workswith families, so please call 020 76088742 if you would like to order one.

We also have other tools availableto assist professionals working withfamilies, such as our brieng papers.Our Inclusion Checklist can helpmanagers to review and improvetheir services for families withdisabled children.

Our Directorycontains information onover 1,000 long-term medical conditionsand rare disorders, including details ofUK family support groups. Each entryis written and endorsed by a leadingmedical expert. Childrens centres canhave FREE unlimited access to the onlineversion of the Directoryuntil the endof 2010 by simply emailing [email protected].

...we applaud theMeek familys efforts

to challenge this law
http://www.cafamily.org.uk/http://www.cafamily.org.uk/Inyourareahttp://www.cafamily.org.uk/Inyourareahttp://www.fsdc.org.uk/mailto:kate.higgins%40cafamily.org.uk?subject=http://www.togetherfdc.org/Topics/PPFundingandGrants.aspxhttp://www.togetherfdc.org/Topics/PPFundingandGrants.aspxmailto:ccsubs%40cafamily.org.uk?subject=mailto:ccsubs%40cafamily.org.uk?subject=mailto:ccsubs%40cafamily.org.uk?subject=mailto:ccsubs%40cafamily.org.uk?subject=http://www.cafamily.org.uk/professionals/childrensserviceshttp://www.togetherfdc.org/Topics/PPFundingandGrants.aspxhttp://www.togetherfdc.org/Topics/PPFundingandGrants.aspxmailto:kate.higgins%40cafamily.org.uk?subject=http://www.fsdc.org.uk/http://www.cafamily.org.uk/Inyourareahttp://www.cafamily.org.uk/Inyourareahttp://www.cafamily.org.uk/


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Contact a Family News Contact a Family News


Counting the cash for familiesFind out what youre entitled to with our online calculator

ontact a Family has launched Cashounts, a new online service dedicated ensuring families with disabled

hildren get every penny theyrentitled to.

ash Counts includes:

An online benets calculator, allowingfamilies to work out how much theyshould be gettingA top tips guide on the benetsavailable to families with disabled

children, written by experts in theContact a Family helpline teamA frequently asked questions page tohelp families navigate the complexbenets system.

rabani Sen, Contact a Family Chiefxecutive, said, Cash Counts givesmilies with disabled children the latestnancial advice and information specic them.

t costs three times more to raise a childith a disability, so families with disabledhildren are more likely to be living inoverty and be reliant on benets. Inese tough economic times, nancese tight for all families, but for thoseith a disabled child, things are evenarder. They need a helping hand toavigate the complex benets system.

ther facilities on the Cash Countservice include a save option, whichlows families to save their benets

alculation and return to it at a later date.

This also means that if a family wantsto check the calculation using Contact aFamilys helpline, their information canbe accessed by a helpline adviser tohelp speed up the process.

Families with disabled children faceenormous nancial challenges. Thereare additional costs of caring for adisabled child, including childcare,heating, transport, home adaptationsand equipment. It can also be difcultfor parents to hold down jobs due to thedemands of caring. Despite this, manyfamilies are not claiming the benetsthey are entitled to.

Mum, Stephanie, said, My husband

recently stopped working because the

Top marks for the CornwallParent Carers CouncilFollowing a recent Carers GrantReview, the Contact a Family ParentCarers Council in Cornwall has beenawarded an excellent grade for theservice and information it provides forlocal families.

Cathy Hunte, the Parent Carer CouncilManager said, Not only are wepleased to receive this really positivefeedback but we have also beengiven another year of funding, so wecan continue our work.

Family Support Service goesfrom strength to strengthOur family support service recentlyreceived the welcome news of twosuccessful Big Lottery bids for theEast of England and the South Westof England.

Helen Bourke, the National FamilyService Support Manager at Contact aFamily told us, Im delighted RachelHill is back in post as senior familyworker for Suffolk. Watch this space fordetails of new family workers to coverNorfolk and Cambridgeshire.

Showcasing our servicesAs usual Contact a Family staff havebeen out and about at various eventsacross the country. Louise Derbyshirehas been delivering training to studentchildrens community nurses in

London, as has our Northern Irelandofce to second year medical studentsat Queens University Medical Schoolin Belfast. We have run a variety ofworkshops aimed at professionals,such as childrens centre practitioners.

We also attended national events,such as the Family Information DirectShowcase in January. This gave usthe opportunity to give presentationsabout Contact a Family services. Wespoke to delegates from childrensservices about our helpline, familysupport service and online tools suchas Cash Counts. Having an exhibition

stand also provided us with anopportunity to display all of our parentguides, leaets and posters. We alsoexhibited a selection of photographsfrom Our Family, Our Future.

Events for parentsWe offer events for parents such asresidential multi-activity weekendsand music workshops in Wales. InLondon, many of our local ofces arerunning Disability Living Allowance(DLA) group sessions for parents.Dawn Charles, our Family Workerin Lewisham, pioneered thesesessions with good results, so otherofces are following suit. The aimis to give parents the tools to beable to complete and understand aDLA form, so that parents will havethe condence and knowledge tocomplete the form on their own.

Contact a Family news in brief

strain of working and caring for our sonIsaac was too much. It has meant wehave had to tighten our purse strings.Isaac is doubly incontinent and thismeans clothes, bed linen and furnitureneed replacing far more frequently thanis usual. And we have the washingmachine on at least twice a day oftendoing a boil wash. This is not somethingwe can reduce, so we have to incur theextra costs.

Srabani Sen added, We urge all familieswith a disabled child to use Cash Counts,or telephone our helpline on 0808 8083555 to make sure they are getting every

penny they are entitled to.

Check it out for yourself atwww.cafamily.org.uk/cashcounts

Our stand at theFamily InformationDirect showcase

Support for Allin the FamiliesGreen Paper

Support for All: the Families andRelationships Green Paper, launchedrecently by the Secretary of State forChildren, Schools and Families, EdBalls proposes new measures to helpfamilies with disabled children to leadordinary lives.

The Green Paper proposes to extendthe offer of key-worker support tofamilies with disabled children aged 0to 19, initially with a testing phase in2010-11 and with a view to creating a

national programme.

There is also a proposal to increaserelationships support specicallyfor families with disabled children,including extra support for Contact aFamilys helpline.

Srabani Sen, Chief Executive of Contacta Family, said, We are delighted thatfamilies with disabled children feature soprominently in the governments FamiliesGreen Paper. It is acknowledgementof the particular pressures that familieswith disabled children face and wehope these proposals will lead tostronger families.

The investment in key workers is greatnews. Families have always told us thatthey need a central point of contact forsupport and information. Key workers willhelp families with disabled children enjoyfamily life, rather than being boggeddown and stressed out with never

ending appointments and meetings.

Srabani Sen continues, Families withdisabled children have always beenmore vulnerable to breakdown due tothe emotional and practical pressuresthey are under, so the relationshipssupport targeted specically at them ismuch needed. We are delighted thatthe Contact a Family helpline has beenidentied as a valuable source of supportaround relationships for families withdisabled children throughout the UK.

Families with disabled children want tolead ordinary lives. We believe that t hesemeasures will help them achieve this.

Counting the Costs 2010 a Contact a Family survey

out if and how things have changed.There is a lot of talk that the economyhas turned a corner and things arebeginning to improve. But we would liketo know what the experience of familieswith disabled children is.

We will use the results to raiseawareness of the nancial worriesand difculties specic to families with

disabled children and to campaignfor change.

Please take the time to ll out ourshort online survey, which will take nolonger than ve minutes to complete.

In 2008, Contact a Family askedfamilies about their nances in theCounting the Costs survey. Theresults were shocking, with one insix families reporting that they weregoing without food and heating.

Now, two years on, we would liketo ask families about their nancesagain so that we are able to nd

www.surveymonkey.com/s/T2S2ZZF
http://www.cafamily.org.uk/cashcountshttp://www.cafamily.org.uk/cashcountshttp://www.surveymonkey.com/s/T2S2ZZFhttp://www.surveymonkey.com/s/T2S2ZZFhttp://www.surveymonkey.com/s/T2S2ZZFhttp://www.surveymonkey.com/s/T2S2ZZFhttp://www.cafamily.org.uk/cashcountshttp://www.cafamily.org.uk/cashcounts


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Benefit news Other news


Interested in tax free?Our nancial expert, Derek Sinclair, explains

how you may be eligible for tax-free interest

Savings GatewayLater this year, a new government-backed savings scheme calledthe Savings Gateway is to beintroduced. Aimed at people ofworking age who are on lowerincomes, the government will giveyou 50 pence for each 1 you saveinto your Saving Gateway account.

Am I eligible for a savingsgateway account?You will qualify for an account ifyou are getting one of the followingbenets or tax credits:

Carers Allowance (you must

actually get this, not just have anunderlying entitlement) Income Support Incapacity Benet Severe Disablement Allowance Employment and Support

Allowance Jobseekers Allowance Child Tax Credit and your income

is below 16,040 (this guremay increase slightly after April).

How do I apply foran account?When the scheme launches laterthis year, Her Majestys Revenueand Customs (HMRC) will write toeveryone who is eligible, invitingthem to apply for an account andtelling them how to go about doingthis. Savings Gateway accounts willbe offered by a range of banks,building societies and credit unions.You can only open one SavingsGateway account during the courseof your lifetime so you need tothink about if and when would bethe best time for you to do so.

How much can I saveinto my account?You can save from as little asyou like to a maximum of 25 amonth. At the end of the two yearsthe government will then add areward of 50 pence for each 1youve saved.

Feel free to ontact our helpline on0808 808 3555 for updates on theSavings Gateway.

you are on a low income but haveavings with a bank or building society,ou may be paying tax on interest fromour savings when you dont need to.anks and building societies normallyeduct 20% tax from the interest theyay on most savings accounts. However,your taxable income is less than yourx-free personal allowance, you can ask get the interest on your savings paidx free.

your taxable income is only slightlygher than your personal allowance,en some, or all, of the interest on your

avings, may be taxable at 10% ratheran 20%. If this applies to you, it maye possible to reclaim some tax.

How much is my tax freeersonal allowance?or most people, their personal allowance6,475. However, if you are blind or

ged over 65, this gure can be higher.

am a non tax payer. How domake sure I dont pay tax on

my savings?o long as your taxable income is lessan your personal allowance, you

an register to pay no interest on youravings. Fill in form R85 for each accountat you have and send it to yourank or building society. Form R85 isvailable from your local tax ofce or viattp://tinyurl.com/4tqa4w

What should I do if I want toeclaim tax I wrongly paid on

my savings?you think you have paid too much taxn your interest, you can reclaim thisy completing a R40 Tax Repaymentrm. You need to ll in a form for eachx year you think you paid too muchx. The time limit for reclaiming tax isve years from the end of the tax yearwhich you overpaid. For example, if

ou paid too much tax on your interestthe year April 2004-05, you mustclaim by 31 January 2011. Form R40available your local tax ofce or viattp://tinyurl.com/y8sshq5

What about my childssavings?Your child also has a tax f ree personalallowance of 6,475. So long as theirtaxable income is less than this, you canapply on their behalf (using form R85) toreceive interest on their savings withouttax deductions.

There are also some savings schemesfor children that are totally tax free.

For instance, if your child was bornafter 1 September 2002, they shouldhave a Child Trust Fund (CTF). Up to1,200 can be paid into this accountevery year. There is no tax paid on anyinterest or gains from a CTF. However,any money invested cannot betouched until the child is 18.For moreinformation on Child Trust Funds seehttp://tinyurl.com/y9kmbjv

National Savings and Investments (NS&I)offer childrens bonus bonds for childrenunder 16. You invest a lump sum andreceive tax free interest every year withan additional bonus if money remainsuntouched for ve years.

I am a tax payer. Are thereany ways I can reduce the taxI pay on my savings?Most banks and building societies offerIndividual Savings Accounts (ISAs). FromApril 2010, each person can invest upto 10,200 a year in an ISA. However,

the most that can be held in cash(rather than stocks, shares etc) will be5,100. You do not pay any tax on theinterest you receive from a cash ISA. Inaddition the government backed NS&I(http://www.nsandi.com/savingneeds/taxfreeinvestments.jsp) offers a range oftax free investments. For example, theyoffer xed interest savings certicatesand index linked savings certicates.These investments provide guaranteedrates of interest over a set period oftime and are exempt from income tax.For further advice about ISAs or othernancial products, speak to a nancialadviser regulated by the FinancialServices Authority.

Whats your kidz school like?Whizz-Kidz, the national charity forwheelchair children, is launching aconsultation of disabled childrenacross England by targeting over20,000 state-run primary, secondaryand special educational needs schools.The survey was conceived and createdby the Kidz Board themselves, who areaged between 13 and 19 and activelyinvolved in advising on key issues.

The consultation is a condentialquestionnaire and aims to take anational picture of modern school life

both inside the classroom and out for disabled pupils and students. Ithas the backing of the Department forChildren, Schools and Families (DCSF).

Get involved and encourage your sonor daughter to have their say.

Complete the survey atwww.whizz-kidz.org.uk/getinvolved/nationalschoolsconsultation/

The deadline to take part has beenextended to 9 April 2010.

Budding musiciangets head start

Benet changesCarers Allowance earnings limit upFrom April 2010, the amount you canearn and still claim Carers Allowance isto increase from 95 to 100 per week.

In calculating your earnings, you candeduct amounts for any tax and nationalinsurance you pay, 50% of any pensioncontributions and certain childcare costs.This means some carers earning morethan 100 per week gross can still qualify.

Child maintenance to be ignoredFrom 12 April, child maintenancepayments will no longer be treated asincome when calculating means testedbenets such as Income Support,income-based Jobseekers Allowance or

income-related Employment and SupportAllowance. These payments are alreadyignored as income for Housing andCouncil Tax Benet and for tax credits.

If you receive child maintenance andwere told in the past that your incomewas too high to receive a means testedbenet, you may nd these new rulesnow allow you to qualify.

New carers creditFrom 6 April, a new carers credit will beavailable to those providing 20 hoursor more care a week. In order to claim,you must be providing at least 20 hourscare for one or more persons who areeither in receipt of a qualifying disabilitybenet (e.g. Disability Living Allowanceat the middle or highest rates) or, whereno qualifying benet is being paid,have a signed certicate from a healthor social care professional to conrmthat the level of care being provided isappropriate. People who get Income

Support as a carer on the basis theyprovide regular and substantial careshould also qualify. This new credit willhelp you protect your entitlement to thestate retirement pension.

You do not need to apply for the newcarers credit if you get Carers Allowanceas you will already be receiving nationalinsurance credits via that claim. A similarcredit will also be introduced for parentsclaiming Child Benet for a child agedunder 11. At the time of writing, detailedguidance is still awaited.

Liam is 17 years old. He has cerebralpalsy, epilepsy, ADHD and learningdifculties. Liam and his family havebeen receiving nancial help from theFamily Fund since he was six.

Since rst approaching the Family Fund,the family have had a much neededholiday each year. The holidays havebeen a fantastic source of relief, andan opportunity for the whole familyto recharge their batteries and havefun together.

Living with a child with disabilities canbe very difcult for the f amily. Liamsmum Mandy said, Having the chanceto go away means you can put all theproblems behind you and just live thenormal life that everyone strives for. Weall benet from getting away from it all.

The Family Fund cannow help young peoplewho are aged 16 and 17with grants. These canbe put towards anythingfrom driving lessons toequipment for collegecourses or travel costs tohelp young people keepin touch with friends.

Recently the Family Fundhas been delighted to

be able to support Liams passion formusic. Over the past few years, grantshave been given to Liam to t urnhis bedroom into a state-of the-artrecording studio. He loves being in hisstudio where he plays his drums andguitar and enjoys some much neededtime out. He also sings and mixes hisown music discs.

Liam is going through transition andhis mum describes this as a difcultand emotional time for them all.

However, they are looking forwardto the future and Liam is thinkingabout going on to a residentialcollege to pursue his interest in artsand music. His home music studiomight just have given hima head start!

For updates, call the Contact aFamily helpline on 0808 808 3555

To nd out more, please visitwww.familyfund.org.ukor ring0845 130 45 42
http://tinyurl.com/4tqa4whttp://tinyurl.com/y8sshq5http://tinyurl.com/y9kmbjvhttp://www.whizz-kidz.org.uk/getinvolved/nationalschoolsconsultation/http://www.whizz-kidz.org.uk/getinvolved/nationalschoolsconsultation/http://www.familyfund.org.uk/http://www.familyfund.org.uk/http://www.whizz-kidz.org.uk/getinvolved/nationalschoolsconsultation/http://www.whizz-kidz.org.uk/getinvolved/nationalschoolsconsultation/http://tinyurl.com/y9kmbjvhttp://tinyurl.com/y8sshq5http://tinyurl.com/4tqa4w


6/13

0 Connected Spring 2010

Other news Other news


Make every disabled childmatter in the electionts that time of the political cycle when politicians seize every

opportunity to be photographed kissing a babys head youve

guessed it, were approaching a general election

s easy to get put off the wholeection process with the endless newsories, the slogans, the posters ande apparent bickering and sniping, asolitical parties jostle for position.ut at Contact a Family we think its

mportant for families with disabledhildren to have their say.

he election has to be called by 3 June010 and there are strong rumours thatcould be held at the beginning of May.t the time of going to print, an electionadnt been called, but it couldappen at very short notice st 17 working days beforeveryone goes to the polls.

o vote in an election, youust be registered. There is a lot

f information about how to registernd the entire voting process on thebout My Vote website (see box below).

amilies with disabled children may note able to go out to a polling station onection day. However, you can applyr a postal vote. Postal votes are usually

ent out about a week before electionay. Once youve got it, mark your voten the ballot paper and make sure youend it back so that it arrives by closef poll 10pm on election day. If itrives later than this, your vote wonte counted.

you have a teenager with a disabilityho would like to vote, there is supportvailable. Polling stations should beccessible to disabled people and therehould be help for blind or visuallympaired people. You can contact yourcal authority to get information on yourearest polling station and its facilities.your child needs help on polling day,ou can apply to the presiding ofcer atour local council to ask them to marke ballot paper.

your child is unable to get to a pollingation, they can apply to vote by proxy

and appoint a family member to voteon their behalf. Contact the electoralregistration ofce at your local council foran application form. A power of at torneydoes not extend to the electoral process.

CampaigningAt Contact a Family, we also think itsimportant to make sure that families withdisabled children are a political priority

for the next government, whatever shapeor colour that may take. As part of theEvery Disabled Child Matters (EDCM)campaign, we are calling for:

Sustained investment in disabledchildrens services

Improved social mobility of familieswith disabled children

Embedding the rights of disabledchildren in legislation.

In the weeks before a general election,those running for election in a local area known as Prospective ParliamentaryCandidates or PPCs want to meetwith local residents to hear about whatissues are important to them. Through

these meetings MPs and PPCs are ableto set out their political priorities and

to tell their local community howthey will represent their viewsin parliament.

EDCM would like every MP and

PPC to commit to taking actionthat will benet disabled childrenand their families by signing up totheir Constituency Pledge.

The pledge is a series of vecommitments for MPs to carryout following the election.They include commitmentssuch as meeting with localdisabled children andtheir families, visiting local

services and nding out whetherlocal authorities and primary care trustsare using money that the g overnmenthas given them to improve disabledchildrens services.

If lots of MPs sign the pledge, thenthere is a chance that there will bemore action in the rst few months ofthe new government to improve rightsand resources for disabled children andtheir families.

EDCM is encouraging supporters to

approach PPCs in their local area andask them to sign up. There is a separatepledge for the UK devolved nations anda campaign toolkit on EDCMs website totalk you through the different ways youcan encourage your MP and PPCs to signup such as meeting with them, writinga letter to them or your local paper orholding a local event.

Go on make your vote count!

For more information visit:www.edcm.org.uk/electioncampaign,www.direct.gov.ukorwww.aboutmyvote.co.uk

Need help buyinga new boiler?Catherine Tyrie, ourdevelopment ofcer forthe North West, is fundedby Scottish Power to raiseawareness of fuel povertyand assist the families ofdisabled children to addressfuel povertyThe Boiler Scrappage Scheme beingrolled out by the Energy Saving Trust(EST) in England may save you 400off a new boiler. So, if you have aworking G rated boiler (or equivalent)

over 10 years old, then check if youare eligible. You will not have to payfor an assessment for the scheme andmost Gas Safe engineers will be able toadvise you over the phone.

Energy bills for households who swaptheir boilers could fall by an average of235 a year. But, if your old boiler isreliable and reasonably cost effective,do weigh up carefully the expenseinvolved in changing it especially asyou have to pay for the replacementbefore receiving the rebate.

If you are eligible, then shop aroundand search consumer websites tocheck reliability. Visit the Whichguide for the best buys on mostefcient boilerswww.which.co.uk/reviews/boilers?

If they are replacing and installing yourboiler, British Gas is currently offering tomatch the governments 400 rebate,as is npower, for any boiler over ten

years old. So you could double theBoiler Scrappage rebate to potentiallysave 800 off the cost of a new boiler.

Low-income families may be ableto apply for a grant from the FamilyFund for the remainder seewww.familyfund.org.ukor Tel: 0845130 4542. Check whether you areeligible for the Warm Front Schemegrants for insulation and replacementboilers atwww.warmfront.co.ukorfreephone 0800 316 2805.

To ask for further advice and applyfor the scheme, call ACT ON CO2advice line on 0800 512 012 or visitwww.energysavingtrust.org.uk

Award-winning mumsMums of disabled children scoop

Tesco Mum of the Year awards

Mum of twins, Clare Lally, who featuredin Contact a Familys Our family, ourfuture report has been named theTesco and Real Radio Scottish Mumof the Year.

Clares partner, Derek Steel, nominatedher for the award, for the love, strengthand devotion she has shown her familyand others since Holly and Katie wereborn. Due to complications during birth,Katie has quadraplegic Cerebral Palsy.

Derek said, In the three years of ourtwin girls lives, Clare has been out ofthis world with their care and wellbeing.Katie was born with special needs andrequires 24 hour care and Holly is yourtypical toddler into and up to all things.

Last year, Clare agreed to be the voiceof a campaign run by Childrens HospiceAssociation Scotland (CHAS), due to thefamilys connection with Robin House inBalloch. She has since offered support

to other families with disabled childrenand is involved in campaigning for betterlives for all independently throughfor Scotlands Disabled Children.

Clare was shortlisted from 5,000nominations and Real Radio listenersin Scotland voted her their winner. Shesaid: I still cant quite believe it andam in shock. Its brilliant.

Another Scottish mum who has a sonwith autism won the Seless categoryin the Tesco Mum of the Year awards.Lynsey Findlay from West Lothianhelped to raise a staggering 100,000to enable her sons school, PinewoodSpecial School, to build a newplayground. She has now undertakenanother challenge of raising money fora school minibus to give children theopportunity to go on trips and outings.

Lynsey is a local hero and held inextremely high regard by those aroundher who are inspired by the dedicationthat she has shown for helping others.

The awards recognise theachievements of two exceptional

mums whose love, dedication, braveryor kindness has touched the lives of

those around them.

Clare Lallywith partner,Derek, and Hollyand Katie

Lynsey Findlaywith her children
http://www.edcm.org.uk/electioncampaignhttp://www.edcm.org.uk/electioncampaignhttp://www.direct.gov.uk/http://www.aboutmyvote.co.uk/http://www.which.co.uk/reviews/boilers?http://www.which.co.uk/reviews/boilers?http://www.which.co.uk/reviews/boilers?http://www.familyfund.org.uk/http://www.warmfront.co.uk/http://www.energysavingtrust.org.uk/http://www.energysavingtrust.org.uk/http://www.energysavingtrust.org.uk/http://www.warmfront.co.uk/http://www.familyfund.org.uk/http://www.which.co.uk/reviews/boilers?http://www.which.co.uk/reviews/boilers?http://www.aboutmyvote.co.uk/http://www.direct.gov.uk/http://www.edcm.org.uk/electioncampaignhttp://www.edcm.org.uk/electioncampaign


7/13


Support groups Working and childcareTheme of the issue


Working and childcareLooking after children and holding down a job is something that many parentsstruggle to cope with. For parents of disabled children, though, nding childcareand working can seem almost impossible.

This month, Connectedfeatures womens experiences from early years totransition, including an interview with Sharon Coleman, who won the rstdisability discrimination case at the European Court of Justice.

To be... or not to be a charity?Adele Meader, our new Local Groups Ofcer, talks about what

makes your group a charity and registering with the Commission

ecently, I took a call from a local groupho thought that registering with theharity Commission was a necessary

equirement to turn their group into aharity. It quickly became apparent thatere was some confusion regardinge status of an unregistered charity.

here was also a misapprehensionat, without registered charity status,

roups could not apply to funders whoated they only donated to charitable

rganisations or charities.

egistering with the Charity Commissionmply turns your group into a registeredharity (and is a legal requirement whencertain annual income is reached, seeetails below). But, registered or not, youhould run your group in a responsiblend well managed way.

o matter the size of your group, youill be seen as a charity in the eyes ofe law if you have charitable purposes.resently, there are 13 denitions ofharitable purposes, such as running

our group for the advancement ofducation and for other purposesecognised as charitable (like offeringmoral support to families).

ther than operating your group for aharitable purpose, you simply have tohow that it exists for public benet, inat you respond to a need, adopt a

ense of community and improve andnhance the lives of the people youupport. Its about what you do ratheran the numbers of people who benet.

Who needs to register their groupwith the Charity Commission?

your group has a charitable purpose

and an annual income of 5,000 ormore, then you have a legal obligationto become a registered charity. This is aminimum requirement, so you will notbe able to register your group until thislevel of income is reached.

A big advantage of registration is thatmany charitable trusts and foundations,as well as some businesses andcorporations, state that they will only give

to registered charities. It is also fair tosay that the public perceives registeredcharities as being more credible. Thismay raise the publics condence in yourgroup, help you attract more volunteersand assist you in fundraising.

Claire Stockton of The EchoesFoundation in Hull has just registeredwith the Charity Commission. I askedwhy she chose to register, I always hadintentions to register because of thefunding opportunities it would open upand it wasnt until I received a letter fromthe Charity Commission that I realisedthe legal requirements surroundingregistration. The Charity Commissionwrote to me as they had noted variousfundraising activities within the media.The commissioners had also studiedthe content on our website and feltwe met the criteria for registration aswe have been very successful in grantapplications and are well supported bylocal businesses and also by our MP Alan

Johnson, the Home Secretary.

How to registerClaires next step was to enlist the helpof her solicitor to ll out the paperworkthat the Charity Commission requestedas she simply did not have time herself.However, I would ll out the formmyself next time round, as the CharityCommission offers you your very owndedicated case worker in supporting you

with your application all form lling canbe done (as part of a free service) overthe phone.

Voluntary registration is also mentionedon the Charity Commissions websitebut, as yet, this has not been approvedand there is no policy in place. However,non-registered charitable groupscan apply to Her Majestys R evenueand Customs (HMRC) to have their

organisation ofcially recognised asa charity. You will need to contactHMRC Charities section and makean application (see the web detailsbelow). HMRC may ask to see a copyof your accounts these do not needto be formal records approved by anaccountant, but you should already bekeeping a record of the money thatcomes in and goes out of the group.Once HMRC has ascertained thatyour group is operating for charitablepurposes, it will issue you with areference number. You will then beeligible to be exempt from income taxand can claim gift aid on donations.

These perks, of course, bring with themobligations, such as extra paperwork,adopting a constitution (this sets out theaims and objectives of your group, thestructure and rules which will controlhow you are run) and the selection ofTrustees (a Chair, Secretary and Treasurerform the basis of the group) who will be

responsible for management. The CharityCommission will not register charitieswho work with children unless they canprovide evidence that all their trusteeshave had a Criminal Records Bureau(CRB) check.

An overview on CRBchecking was providedin the last editionofConnected.

HMRC: Charities www.hmrc.gov.uk/charities

Charity Commission, England and Wales www.charitycommission.gov.uk

Charity Commission, Scotland www.oscr.org.uk/

Charity Commission, Northern Ireland www.dsdni.gov.uk/ccni.htm

You will be seen as charity in the eyes

of the law if you have

charitable purposes

I enjoyed working as a librarian andwe needed the salary, so after my rstchild was born in 1993, I fully expectedto return to work at least part time.As a civil servant I was fortunate inthat maternity leave and career-breakprovision was generous so I took a careerbreak hoping to have a second childbefore I returned to work.

When our son was 15 months old Ibecame pregnant again but, sadly, hada miscarriage and around this time wewere becoming concerned about oursons development. He had startedto speak but this faded away. He washyperactive, couldnt concentrate for longand, although his eye contact was OKand he was affectionate and seemedhappy, he didnt try to communicate. Ihave an autistic brother and, although

I was worried my son might also beautistic, I hoped he was simply alate developer.

So, we began the round of speechtherapists and paediatricians and,having almost given up hope of a notherpregnancy, I returned to work part-time.A month later, I discovered that I wasexpecting! Later that year our son, whowas three and a half, was diagnosedwith autism. The childminder whohad been looking after him for threedays a week was excellent, but shetoo suspected there was somethingnot quite right about his behaviour.Although she was very supportive,

she clearly found him quite difcult.I think she was relieved when our sonstarted nursery on the recommendationof an educational psychologist.

My husband and I took turns drivingour son to the nursery. He was unableto use transport as he didnt yet havea statement. I continued to drive himthere in the mornings until two daysbefore our daughter was born. My sonsstatement was agreed around the sametime which was just as well as I hadvisions of giving birth in a trafc jam onthe Greenford Road!

Having sympathetic line managers, I wasable to take a career break and, whenI returned to work, my son had star tedschool, which helped. I was also luckyto be able to work from home two days

a week. My son was able to attendan after-school club for children withdisabilities two days a week, offeringone-to-one care and transport to andfrom the club. He also attended a playscheme for two days a week duringschool holidays. Any shortfall wascovered by my husband or me usingannual or exi leave.

For a few months, I got up at 5.30amand worked until 1pm so I could behome when my son nished school.My husbands support and involvementwas crucial as we had no family nearby.He had the unenviable task of gettingboth children ready in the morning.

The fact that our son needed one-to-one care meant only limited childcareoptions were available. Had he beenless severely disabled, he could haveattended the after school club/playscheme ve days a week. Gettingsuitable childcare is the major hurdlefor children with special needs. Somechildminders say theyll consider a childwith a disability, but we never foundanyone prepared to take our child.More specialist provision and trainingis highly desirable.

My life was taken up with statementissues, Picture Exchange CommunicationSystem (PECS) courses, Makaton (asystem of communication, includingspeech, signing, and writing, intendedfor use by and with people who have

language or learning difculties) courses,occupational therapy appointments etc.Work gave me an opportunity to be me,have social contact and, of course, earnsome money. Work let me keep one footin the normal world.

I took early retirement in 2007. Myhusband had a major illness and tookmedical retirement. Im hoping to returnto work for nine hours a week as aninformation ofcer during term time. Illbe job sharing with another parent whoalso has a child on the autistic spectrum.Working is possible, but you needsupport from your employer, suitablechildcare and some luck too!

A little help goes a long way

One mother shares her experience of workingwhile looking after a child with a disability
http://www.hmrc.gov.uk/charitieshttp://www.charitycommission.gov.uk/http://www.oscr.org.uk/http://www.dsdni.gov.uk/ccni.htmhttp://www.dsdni.gov.uk/ccni.htmhttp://www.oscr.org.uk/http://www.charitycommission.gov.uk/http://www.hmrc.gov.uk/charities


8/13


Working and childcare Working and childcareTheme of the issue


Why are your children always up halfe night on the days that you work? Isaying home with Jeremy Kyle moreppealing than earning a little abovearers Allowance for working part time?

am a single parent of three fabulousoys six year old twins, Max andharlie and 11 year old Joshua. Maxas quadriplegic Cerebral Palsy andncontrolled generalised Epilepsy.e cannot walk, speak, has severeevelopmental delay and is on the

etogenic prescription diet. I work as aart-time primary teacher on a temporaryontract from August to June whichxcludes my employer from having toay me for seven weeks in the summera time when you require three times

our normal salary in ice cream!

very August I arrive, usually at a newchool, armed with my own mug andags of enthusiasm. Instantly, the same

mantra and grovelling apologies areequired due to my need for exibilityhould the inevitable appointments fall

r emergency childcare issues arise one same day Im expected to work. I

ome out feeling demoralised, vaguelyscriminated against and a total liability.honesty the best policy? Would I avoid

atronising statements like, Is it reallyorth your while dear?, if I just ag reed everything and whipped out the carerump card whenever the need aroseithout apology or guilt.

have a social conscience. I want toork, to leave the house in the morningith a purpose and, frankly, I have bills pay. The pressures on lone parents are

mmense. I dread the appointment lettersoming in. Nobody can be sick or be the

star of the school play on a work day incase I might need time off for Max! Headteachers in the past have been exible,allowing me to swap days or owe themtime if I had an appointment. Others arenot so impressed when still having to payyou when an emergency arises and insistthat you agree to any time off as unpaidwith loads of notice.

If you have a child with profounddisabilities you require specialistchildcare, especially when they are ill.

Max is educated in another authorityso his holidays last year were differentfrom the rest of the familys. I haveagency workers provided within my carepackage who are trained in emergencymedication and are indispensible. Topay them during the time when Max isoff would mean working for less t hannothing and they are considered healthcare workers, not childcare providerswithin Working Tax Credit criteria, sono help there. I enlisted the help ofvarious local charities and they, despiteadmirable searching, could not comeup with a solution. I was forced toreduce my hours and thus my incomeas parental leave was deemed toodisruptive` to the job I was doing.

Even the Carers Allowance discriminatesagainst those working with low income.It has a weekly earnings allowance but,when calculating entitlement, uses yourearnings over the whole year. I workedout that I was earning only marginally

more per week pro rata than I wouldreceive in Carers allowance with doublethe stress!

My experience has shown that, despite atightening of legislation protecting workingcarers rights, in practice the sympathyline is often ver y narrow. You becomea minority statistic. I appreciate thatpeople cant understand what life is likebeing a carer but feel that the legislationis greatly misunderstood and muchmaligned. One plus side is that, withoutit, some employers would be rigid in theirviewpoint and rather you just quit andstayed at home. I tell you, folks, JeremyKyle is looking better every day!

Does life get easier?The trials and tribulations of working part time by Nicola Reid

Nobody can besick or be the star

of the school play

on a work day in

case I might need

time off for Max!

I come out feelingdemoralised, vaguely

discriminated against

nd a total liability.

I was working as a Staff Nurse in a busyA&E Department of our local hospital,20 years ago, when my son Peter wasborn. Peter is a young man with Downsyndrome, and my second child. Hisolder sister is studying at university.

Peter had so many appointmentsto attend and I was extremely busydoing his physio and speech therapy using the buzz words of today my work-life balance wasnt working!

The hours were impossible to workaround the management werent veryaccommodating. I have a very supportivehusband but he has very rigid hours, too.

Peter was a year old when I left nursing. Itwas difcult to leave a job I loved and onethat, although stressful, was rewarding andwhere I was known. When I left, I left myidentity there, too. But I had to go.

I set up the local Parents Support Groupfor parents who have children withDown syndrome and, ten years later,a small catering business, all the whilelooking after Peter.

I decided to become a VolunteerRepresentative for Contact a Family aboutten years ago, which was probably thestart of me looking at doing somethingfor me and getting out there again. I wasable to use my knowledge to help otherparents, it was exible and I could t itround the children.

Then, in December 2008, I received aphone call from Frances Murphy, themanager of Contact a Family NorthernIreland, who told me they had fundingfor a post of Family Support Ofcerin the Northern Trust Area and was Iinterested in applying.

Over the Christmas period, I debated thepros and cons and didnt know if I wouldapply or not. My children were quiteindependent and I had been thinkingof running down my small cateringbusiness but who would want toemploy me? It had been years since Ihad been interviewed and employed!

So, after much debate, I sent off theapplication form and waited evengetting an interview wouldve been agood boost to my morale! I got a datefor the interview in January and took afriend along for support.

I went into the interview af ter having readeverything I could on Contact a Familyand the campaigns they were supporting,and all the information I could aboutthe subject.

Two days later, I got a phone call fromFrances telling me I had been successfuland would I like to accept the job?Would I? Not a problem!

So a year has passed in my new job and it was one of the best decisionsI have ever made. As this is a new post,

I have had to do a great deal of talkingto people about the benets of FamilySupport Services. Meeting parents ischallenging, and I am constantly in aweof families who have to deal with verystressful situations. I barely notice timepassing and, as I only work 17 hoursa week, there is never enough of it!

Peter has left his day centre and has ajob. Weve just got Direct Payments forhim, and he now has his own personalcarer who gets him to work and collectshim, so I can get on with my visits.

Going back to work has t aken mea time to get used to, and also thefamily have had to get used to dinnernot always being ready when they gethome or shopping not having beingbought, but its still the best thing Icouldve done! The family is enjoyingthe much more condent Mum whothinks nothing of getting in the car anddriving over 100 miles to a visit, and willthen speak to consultants regarding afamily she feels need extra help.

I enjoy the challenges I face with eachvisit to a family. Life denitely begins atnearly 50 at least it did for me!

Volunteering back to workVirginia Maxwell rediscovers her own identity

The family is enjoyingthe much more

condent Mum who

thinks nothing of getting

in the car and driving

over 100 miles

Virginia Maxwell (right) on oneof her visits.


9/13


10/13


11/13


Working and childcare Working and childcareTheme of the issue


in my position had found. Despite thevulnerability of children like Stevie due totheir extra needs, the choice of childcareprovision will continue to be based ontrial and error.

Crucially, around this time, a part-timejob was advertised with Contact aFamily North West. Determined not tolet childcare issues stand in the way ofsuch a fantastic opportunity, I appliedfor it and was offered the position. I feelextremely privileged to have a positionwhich not only ts with our familysneeds, but is working for other parents insimilar positions and for an organisation

that is sensitive and fair to the needs ofparents with disabled children.

As for childcare we have temporarilyopted out of ofcial services. Betweenus, with annual leave and unpaid leave,we have this school year covered andthrough the grapevine, I have just heardthat another parent at Stevies school,has found a childcare service she wouldrecommend to other parents. It seemsthat until the Extended School Servicesare initiated in all areas with good qualitycare and specialist training on disabilityissues, as parents, one of the best waysto nd good quality childcare is still torely on each other.

about who to contact regarding localchildcare provision.

There were, however, mixed responsesfrom my local services. Several wereclearly panicked at hearing the worddisabled and referred me on. A few,clearly had no idea what to suggest,recommending services that didntwork in this borough, dealt with otherdisabilities, and who couldnt care forboth girls. Some services had key peoplethat dealt with disability issues, but theyhad a backlog and would get back tome. Other services admitted that somelocal childcare services actively avoided

including disabled children by statingthat they had no available places. Theiradvice was to secure a place and onlythen disclose any disability. Whilst thismight have successfully out-manoeuvredthese services, I felt that if I had to leavemy children in someone elses care, Iwould really rather it was someone whoactually wanted them.

Not one service was able to offeradvice on what I really wanted to know:which childcare services are suitable fordisabled children, in terms of their ethos,staff training, equipment, and facilities?Amazingly, they also had no way ofsourcing what services other parents

When my rst daughter, Billie, wasorn, I was lucky enough to be able leave work because my partnerscome kept us aoat. I planned too back to work af ter our secondaughter was born, however. Stevieas born three months early throughn emergency delivery and numerousxaminations and tests showed thathe has cerebral palsy. She has highne in her hands and feet, meaning

at, amongst other things, she cannott up well or walk and she needselp feeding.

uring these rst few years, it wasot uncommon for appointments average about six a week, withcations ranging from home, toospitals and specialist centrescattered all over the North West.ravelling to, waiting for, attending anden returning from appointments,as exceptionally exhausting and timeonsuming. Meanwhile, the trail ofregular, overlapping appointments thatropped through the door with littleotice, increased these difculties. Theoordination of services, who rarelyommunicated with each other, hadfferent appointment systems, referrals,aiting lists, and procedures, quicklyecame my full-time job. Squeezing anyemblance of a normal family life intoe gaps in the diary, let alone some

ort of paid employment, was tricky!

ventually, things started to calm downnd while we added a sprinkling ofew professionals to the list everyear, we also started to shed them.

We moved nearer to the city andund a full-time place for Stevie at antastic special school. Many of Steviesppointments are now held here, takinge pressure off us to travel to differentcations to attend them. I talked to thearent adviser at school about returning work and my worries about nding

ood quality childcare. She signpostedme to a range of services, one of which

as Contact a Family. There was a hostf helpful information on the website

Relying on each otherCatherine Tyrie on the lack of suitable childcare

or disabled children

The Tyrie family

training for the childcare sector,developed and delivered by parents.A powerful and unforgettable piece oftraining has impacted hugely on thechildcare workers who undertake it

training some of our disabledyoung people to deliver disabilityequality training to their peers and toschool staff.

Another area of concern from

parents was the lack of Makaton andcommunication training in early yearssettings. To tackle this we paid for sixearly years special educational needscoordinators to train as Makaton trainersand are aiming for 50% of our settingsto receive training this year. This meanswhen a family is looking for childcare fortheir non-verbal child there will alreadybe settings who are trained to supporttheir child.

We already knew that childminders werenot being used to any degree by parentsof disabled children. One reason for thiswas that if the child took up more thanone registered place because of their

additional needs this cost was beingpassed onto the parents. We now havea community childminding network ofsupported and trained childminders,which has been commissioned to theNational Childminding Network. Thechildminders will automatically get asubsidy for four weeks to settle the childinto the setting and then, if necessary,this will continue for the duration of thechilds placements. This means parents

pay the same as for all other children,but the childs needs are being met.

Cornwall now has an includer service,which uses teaching assistants to supportdisabled children in activities that areopen to all children. Last October wehad children doing activities such astree surng and skiing on the local dryski slope. They have an opportunity totake part in an activity which is fun andexciting and to be with other children. Andparents get the chance to spend time inthe holidays with their other children, takea break or work knowing their disabledchilds needs are being met.

DCATCH in Cornwall has done muchmore than provide more activities forour disabled children. It has been aboutchanging hearts and minds, raising theprole of disabled children in all strandsof childrens services, and embeddinginclusion into service strategies anddelivery plans. Without the support of

parents and carers as true partners inthe delivery of DCATCH in Cornwall wewould not have had the success wehave had.

Whos looking after baby?Sandy Lawrence, Cornwalls accessible childcare project manager,

shows the way to making childcare accessible for all

DCATCH update

12.5 million funding has beenallocated for the DisabledChildrens Access to Childcare(DCATCH) project. The cashinjection will now fund thenational roll out of DCATCH.The 142 local authorities not partof the original pilots will eachreceive at least 59,000.

Access to childcare has long been anissue for families with disabled children,particularly those of school age. Disabledchildren want the same opportunities asall other children but most cannot accessholiday clubs, sports clubs or extendedservices activities without the additionalsupport of a one-to-one worker.

In May 2007, the Governmentpublished Aiming High for

Disabled Children BetterSupport for Families. In itthey laid out a number ofinitiatives to improve the lives offamilies with disabled children,including making childcare moreaccessible. Aiming High identiedchildcare as a vital ser vice forfamilies of disabled childrenand young people and statedProvision of good quality childcare is anentitlement for disabled children as it isfor all children and families.

Cornwall was chosen as one of the10 local authorities in England to pilotthe Disabled Childrens Access toChildcare (DCATCH) project, to breakdown barriers families face aroundchildcare. Cornwall is a large, rural countywith pockets of severe deprivation andhas strong parent representation throughits Parent Carer Council. So parentswere consulted from the beginning onthe draft bid for pilot status, adding in

a number of initiatives including a sumof money to set up sibling groups inthe county. This recognises the impactthat living with a disabled brother orsister has on the young lives of non-disabled children.

Training is an integral part of any planaround accessible childcare and formeda large part of the project in Cornwall.The training covers three different areas:

good quality disability equalityawareness for all staff workingwith children, which has beenwritten into the countys workforcedevelopment plan


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Freephone helpline: 0808 808 3555Textphone: 0808 808 3556Open Mon-Fri 10am-4pm and Mon 5 30-7 30pm

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

Getting in contact with us

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

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.
mailto:info%40cafamily.org.uk?subject=http://www.cafamily.org.uk/http://www.makingcontact.org/http://www.makingcontact.org/http://www.cafamily.org.uk/mailto:info%40cafamily.org.uk?subject=

connected spring 2010 web

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