connected - winter 2009

8/14/2019 Connected - Winter 2009

http://slidepdf.com/reader/full/connected-winter-2009 1/20

The magazine or amilies with disabled children

and all those who work with them

Incorporating The Lady Hoare Trust

Winter 2009/10

Home sweet home

Housing matters

Grants, adaptations

and living alone

Keeping a smile on his ace –one mother’s fght or housing adaptations

Our amily, our uture

Exploring the lives

o 30 amilies

Trolley campaign

Fighting or special

shopping trolleys


http://slidepdf.com/reader/full/connected-winter-2009 2/202 Connected Winter 2009/10

Contents

Contact a Family 209-211 City Road, London EC1V 1JN

Tel: 020 7608 8700, Fax: 020 7608 8701e-mail: [email protected]

Contact a Family Northern Ireland The Bridge Community Centre, Railway StreetLisburn BT28 1XP

Tel/Fax 028 9262 7552

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

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

Contact a Family Cymru33-35 Cathedral Road, Cardi CF11 9HB


Contact a Family Cornwall Tel: 01736 756 037e-mail: [email protected]

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

Newcastle upon Tyne NE3 1PH Tel/Fax: 0191 213 6300e-mail: [email protected]

Contact a Family North West England Region6th Floor, St. James HousePendleton Way, Salord M6 5FW


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

Contact a Family EalingRoom 3, 1st Floor, St. Andrews Church CentreMount Park Road, London W5 2RS


Contact a Family LambethLambeth Accord, 4th Floor,336 Brixton Road SW9 7AA


Contact a Family Lewisham1 Forman House, Frendsbury RoadLondon SE4 2LB

Tel: 020 7635 6333Fax: 020 7732 8494e-mail: [email protected]

Contact a Family SouthallSt. Georges Community Centre8-12 Lancaster Road, Southall UB1 1NW

Tel: 020 8571 6381

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

Contact a Family Southwark 54 Camberwell Road, London SE5 0EN


Contact a Family Sutton and MertonHill House, St Hellier Community AssociationBishopsord Road, Morden SM4 6BL


Contact a Family Wandsworth1 Siward Road, London SW17 0LA

Tel: 020 8947 5260

Fax: 020 8947 9506e-mail: [email protected]

www.caamily.org.uk Helpline: 0808 808 3555

From our Chie Executive3 Srabani Sen: Getting into estive mood

Contact a Family 4 Our family, our future: The launch o our new report and exhibition

5 Two o the 30 stories: The Gurney and Brumell amilies tell their story

6 Summer un and 5K run! More 30th anniversary celebrations

6 Helping make your Cash Count: Our new online nancial planner

7 Calling all parents…we need you: Vital parental involvement

7 News in brie: The uture o care and new children’s centre advisers

Beneft news8 Housing and Council Tax Beneft: A look at the new, more generous rules

Support groups9 Lending a helping hand: How to best use your volunteers

Other news10 Aiming High or Disabled Children: Short breaks and bicycle rides

11 Adapted trolley campaign: Calls or all supermarkets to ollow

11 Carers Poverty Charter: Representatives call at No. 10

Housing matters12 Housing matters: Introducing our theme oering guidance on grants,

adaptations and helping an older child live independently

12 What can a Disabled Facilities Grant do or you? One parent’s story

13 The waiting game: Housing adaptations or one amily in Northern Ireland

14 A garden makeover: Contact a Family and WellChild help a amily15 Going it alone: One young man nds a home o his own

16 Home sweet home: A mother’s ght to get the adaptations her son needs

18 Housing grants in Scotland: Our Parent Adviser examines the new rules

19 A day in the lie: Featuring one o our podcasting Family Workers

Connected inormationEdited by: Karin Beeler, Elaine Bennett, Adele Humphries and Yvonne McGahrene-mail: [email protected] Design and layout by: Adele HumphriesNote: Although great care has been taken in the compilation and preparation o this magazine toensure accuracy, Contact a Family cannot take any responsibility or any errors or omissions.© Contact a Family 2009Next issue: The Spring edition o Connected will be published in February. We are alwaysinterested in stories, especially rom parents. I you would like to contribute, please submit articleso up to 750 words. e-mail: [email protected] The deadline is 25 January 2010.

4 Our amily,our uture

10 Aiming High– on wheels

14 A gardenmakeover

http://www.cafamily.org.uk/




From our Chie Executive

Connected Winter 2009/10 3

Getting into estive moodSrabani Sen, Contact a Family’s Chie

Executive, gives an update on events

Thirty amilies with disabledchildren have sharedtheir hopes, dreams andrustrations, and we havean exhibition o wonderulphotos. See pages 4 and 5to nd out more. We are verygrateul to all the amilieswho shared their honest andinspirational stories.

Things are hotting up onthe political ront. In Wales,we gave evidence to theWelsh Assembly inquiry intowheelchairs. In England we havebeen lobbying to encourage primarycare trusts to disclose how they havespent the £340 million, given to thehealth sector to invest in services ordisabled children and their amilies. In

Northern Ireland, we have beenresponding to a number o consultation documents,

and in Scotland, thealliance For Scotland’sDisabled Children is goinggreat guns.

As we enter the last six months beorea general election, this political activityis crucial to keep the prole o disabledchildren and their amilies on thepolitical agenda.

In the 5K HydePark run.

Speaking at the House o Lordslaunch o Our amily, our uture .

“We know the holiday

can be both a joyul

and stressul time…”

We may be in the run up to the estiveseason, but things are not slowingdown at Contact a Family.

We know the holiday season can beboth a joyul and stressul time, withamilies seeing support dwindle andan extra strain on nances all round.With this in mind we hope to makelie a little easier or you with our new‘Cash counts’ online service, developed

to help you make the most o yournances and claim everything you’reentitled to. Find out more on page 6.

As part o our 30th anniversary, wehave been holding a series o eventsat the parliaments o the our nations.At the time o writing we’ve held threeo them, and at each one, the keygovernment minister attended: Ed Ballsat Westminster, Adam Ingram inScotland, Jane Hutt in Wales.Opposition politicians came

too, which is really goodnews as it suggests thereis cross-party support orissues aecting amilieswith disabled children.

We used theseparliamentary eventsto launch ournew report andexhibition,Our family,

our future.

Finally, what would Christmas be withoutSanta? In the summer a number o women ran a 5K race at Hyde Park toraise money or Contact a Family (hencethe embarrassing photo o me on this

page looking rather hot and disheveled);well, on 6 December it was the turn o the men. A team o men ran 5K to raisemuch needed unds to support ourwork. And, at this close to Christmas youwould expect a seasonal theme. You’veguessed it. All those taking part weredressed as Santa!

I hope you have a happy and peaceulestive season and wish you all the bestrom everyone at Contact a Family.

Srabani Sen



Contact a Family – News

Many are worried about the uture andwhat will happen when they are nolonger able to care or their child. Thereis great uncertainty about the supportavailable to those who reach adulthoodand this is adding to the pressures thatamilies are under:

“It is absolutely terriying thinking

about the uture. As long as we are here it is fne, but who will look ater

her when we’re gone?” Julie Ryan

Others have to live with theheartbreaking knowledge that theirchildren have lie threatening conditions:

“We can’t worry about next year,

we just have to think about the here

and now.” Clare Lally

Our family, our future The lives o 30 o our amilies across the UK

And most worry about how society

accepts people with disabilities and wishor increased understanding and tolerance:

“I hope those people whose lives Max

touches will become more tolerant

and understanding.” Nicola Reid

Our family, our future was publishedas part o Contact a Family’s 30thanniversary celebrations and isaccompanied by an exhibition o amilyphotographs. Both were launched

across the UK at the House o Lords inWestminster, at Holyrood in Scotland,and the Welsh Assembly in November,with the launch at Stormont in NorthernIreland taking place in December.

The House o Lords event took placeon 4 November, and was hosted byBaroness Jill Pitkeathley and attended bySecretary o State or Children, Schoolsand Families Ed Balls MP.

Ed Balls MP said: “Contact a Family has

a antastic history o supporting amilieswith disabled children and providingthem with good quality inormationat the right time. It is an honour to behere today to mark the launch o Our family, our future and I look orwardto celebrating Contact a Family’s40th anniversary.”

Families who eature in the report wereamong the many guests to attend thisand the other events around the UK. They

took the opportunity to meet Ministers,MPs, MSPs, Assembly Members andMembers o the Legislative Assembly.

Elaine Bennett, Contact a Family Mediaand Communications Ocer, said:“We wanted to raise awareness o theissues acing amilies with disabledchildren, reduce the stigma they ace andcelebrate their amily lie and the hugecontribution they make to society.”

Contact a Family’s latest report highlights

that many amilies with disabled childrenare missing out on amily lie due to thebureaucracy and prejudice they ace.

Our family, our future eatures the storieso 30 UK amilies whose children areaected by a range o disabilities andrare conditions. They celebrate amilylie, acknowledge the challenges and talk about their hopes, dreams and ears orthe uture.

The stories are written in the parents’own words and are a unique insight intotheir lives.

All o the amilies show strength,determination and creativity in overcomingthe challenges and pressures they ace,and there is a real sense o overwhelminglove and pride or their children:

“Our greatest achievement was being

able to bring our little girl home rom

hospital.” Natalie Pearson

But there are those at breaking pointbecause o the constant battle to getsupport and help or their children andthemselves, which is preventing themrom enjoying amily lie:

“Alex has a progressive, degenerative

condition and yet, every year the

council tries to reduce his care.”

Sara Hunt

Pointing out vital sectionso the report to Ed Balls MP

Check out our website or a copyo the report and details o theexhibition which is touring the UK– www.caamily.org.uk







I could see immediately ater Rosswas born that something was wrong.He was rushed away and I thought hewas going to die. Ater an agonisingwait I saw him on the neo-natal ward,but was scared to touch him in caseI hurt him.

Bladder Exstrophy is a rare condition,which causes the bladder to ormexternally and abnormalities in thepelvic bone and genitalia. Rossneeded corrective surgery at sevenweeks, and I was led to believe thateverything would be normal whenhe came home. However, a series o health complications ollowed andRoss spent his rst six years in and outo hospital. I never let his side.

One o the hardest things is theconstant battle or support. Familieswhose children have rare conditions just don’t t into government criteria.

When we applied or a grant or anextra bedroom and bathroom orRoss, we were reused because noone understood the condition andits psychological impact around bodyimage. I got legal aid to ght the councilusing the Convention on the Rights o

the Disabled Child. We won, but it wasso draining.

I also had a huge battle trying to getRoss into a suitable school. Rossmust catheterise at the righttime or it can be a lie anddeath situation. The school10 minutes rom where welive has sta experienced incatheterisation, so it’s perector him. However, the local

authority reused him a placebecause it’s outside ourcatchment area. I ought this,going through the appealsprocedure, but lost.

The Brumell amily’s story rom Burnage, Manchester

Now Ross attends a school with2,000 pupils where he struggleswith privacy issues and sees apsychologist. Most people don’t knowabout his condition, he knows he’scarrying this big secret, which is hardor him emotionally.

As a result o these battles, I had anervous breakdown last year. A hugescare or everyone and I’ve had tolearn to take care o mysel.

It eels like someone pressed the

button on a rollercoaster and orgotto stop it.

It rustrates me that proessionalsalways put any problems down to thechromosome disorder, which is sorare there is little inormation aboutthe prognosis. Rebecca is aectedby Hypotonia, Hypermobility, visualimpairment, sensory dysunction andglobal delay. I am Rebecca’s advocateand have to ght or her to receive the

best medical treatment.

Last year she screamed seven daysa week, had black eyes and headinjuries rom banging her head andpulling out her hair. Some specialistswho assessed her were arrogant andinsulting, dismissing our concerns.Eventually a therapist suggested herbehaviour was because she was‘sensory seeking’. With appropriatesupport and equipment, Rebecca’sbehaviour has improved. We have to

be respectul to all proessionals evenwhen they do not treat us the same way.

Recently a neurologist rom England wasvisiting Northern Ireland and assessedher while she was in hospital. She thinksRebecca may have an underlyingneurological condition, not part o her chromosome disorder, and hasordered tests.

Many people lack compassion

and over the years some people’sattitudes have made my lie hell. I wasonce reduced to tears at a baby andtoddler group. People are not toleranto conditions they cannot see.

Rebecca’s lie is appointments andhospitals. This aects the wholeamily. Hannah and Ellie miss outon things, and when my husbandand I took Rebecca to the UK orassessments we had to leave

them behind.

With the possibility o an additionaldiagnosis it is dicult to think o theuture. Additional problems mayshorten her lie expectancy. We get alot o strength rom our aith.

The greatest achievement or ouramily is that we are such a close unitand the children are genuinely happyand loved. All I ever wanted whenI was growing up was to be a mum.

The Gurney amily’s story rom Aghadowey, Coleraine, Northern Ireland

Two o the 30 stories eatured in Our family, our future…




Summer un and 5K run!More 30th anniversary celebrations

Helping make your Cash CountContact a Family’s new online fnancial help with benefts calculator

Contact a Family was given part o theextra £3 million announced by Ed Balls,the Secretary o State or Children,Schools and Families, to provide

enhanced services to amilies beingaected by the recession. The moneyis to be used to provide online supportaround money issues or amilies withdisabled children.

We have now launched our Cash Countspackage o online tools to help amilies.

These include an online benets

calculator – providing parents with astarting guide to the entitlements theycould potentially claim – a top tipsguide written by our very own helplineto get parents through the recession,

videos eaturing parents’ experiencesand strategies or how they managetheir nances, and a requently askedquestions page. There is also a step-by-

step online sel-assessment tool.

As part o our 30th birthday celebrations,

we’ve been encouraging more amilieswith disabled children to get out andabout to enjoy leisure time together.

In July, Contact a Family Northern Irelandheld a Family Fun Day at Horizon Housewith puppet shows, magic tricks anda Mad Scientist! Funded by Energy orChildren and hosted at the NI Children’sHospice, the day was great un.

While in Scotland we teamed up with

leading visitor attractions to oer amiliescomplimentary or discounted passesacross the region.

Meanwhile, our ‘Big Day Out’ to HydePark in August was also a huge success.There was music rom our resident DJ,a puppet show, circus skills training,ace painting, balloon animals, bubbles, jugglers and juggling. To top it o, wefnished the day with Bollywood dancing!

5K women’s run

We also had an amazing turn out or our5K run, which also took place in HydePark in the summer.

We wanted 30 runners to mark our30th anniversary and, although we

didn’t quite reach the requirednumber, those that ran, walked

or trotted their way to thenishing line did us proud! Itwas another sunshine day withso many people either takingpart or cheering on whichcreated a antastic atmosphere.I’d thoroughly recommend it!

Contact a Family runners in the 5K Hyde Park run

Contact a Family Facebook ans top 2,000…

Contact a Family’s Facebook anpage now has over 2,100 ans.Users chat, share advice andinormation and comment ontopical issues and other users’ wallpostings. To become a an, visit:www.acebook.com/contactaamily

I you are interested in taking partin any undraising or us, thenplease contact our undraisingteam, e-mail: [email protected] Tel: 020 7608 8733 or visit ourwebsite or more inormation.

Check it out or yoursel atwww.caamily.org.uk/cashcounts

http://www.facebook.com/contactafamily

http://www.cafamily.org.uk/cashcounts

http://www.cafamily.org.uk/cashcounts

http://www.facebook.com/contactafamily





Calling all parents… we need you Jo Palmer, our National Volunteer Representatives Manager, looks

at how vital parent involvement is to Contact a Family

Our Volunteer Parent Representatives(known as reps) are all parents orcarers o disabled children themselves,and provide support to other parents.Parents’ involvement is so importantthat we spent much o the time atour recent residential weekend orvolunteers discussing the issues andsharing achievements.

We were very honoured to be invited to

a civic reception at the City Chambers byEdinburgh City council in honour o our30th anniversary, and took some timeout rom all the hard work to sight-seeand shop in the city!

It has been an extremely busy year orparent involvement and participation.With the support o Aiming High or

Disabled Children in England, and withsimilar work going on in the nations,parent participation is high up onthe agenda.

And who better to ask how things aregoing than our volunteers, many o whom are actively involved in theirlocal parent orums. As a parent-drivenorganisation, our parent volunteers arevery important to us, and we will be

using what we have learnt rom theweekend to improve our own ways o working and letting local authorities knowwhat parents want.

Local authorities rom all over the UKare suddenly discovering that working inpartnership with parents is not just goodpractice, but essential to making the

biggest dierence to the lives o disabledchildren. But one size does not t all andthings are developing in dierent ways,depending on many actors, such as thesize o each local authority, its culturaldiversity and its mix across urban andrural communities.

We are currently looking or new parentsto join the volunteer team to coverCumbria, Teesside and Luton and there

are likely to be more opportunities in2010. Keep an eye on our website andFacebook page or updates in your area.

I anyone would like an inormal chatabout being a parent volunteer withContact a Family, then you can email meat [email protected] or call meon 07599 167 561.

Our Volunteer Parent Representatives are all parents or carers o disabled children themselves.

The uture o care in EnglandThe ‘big debate’, the government’sconsultation on the uture o careand support in England, nished inNovember 2009. Contact a Familywelcomed the commitments made inthis green paper to the much neededradical reorms to the currently unairsystem and a new national careservice. But we expressed concernsabout the options proposed to und

these reorms. We also think thegreen paper is a missed opportunityto reinorce better joined up workingat transition between children’s andadult services. Much more is needed

to reassure parents that their ownhealth and nancial wellbeing will notcontinue to be put at risk due to theircaring responsibilities.

New regional children’scentre advisersDebbie Ravensdale and KarenRobinson have recently joined thechildren’s centre team at Contact aFamily. They are oering children’s

centres and amily inormation servicesa range o support to help theminclude amilies with disabled children.So please get in touch!

Debbie covers Hampshire, Dorset,Wiltshire, Sussex, Bournemouth,Southampton, Portsmouth and the Isleo Wight, Tel: 0148 989 5501 e-mail:[email protected]

Karen covers the North Westo EnglandTel: 01706 220578 e-mail:[email protected]

Una Summerson continues tosupport children’s centres in otherareas. Tel: 020 760 8742 email:[email protected]

Contact a Family news in brie

mailto:[email protected]










Beneit news

More generous Housing Beneftand Council Tax Beneft rules

Our Parent Adviser and fnancial expert, Derek Sinclair, explainsthe new beneft rules

However, rom 26 October 2009, thisage limit has been urther reduced tohaving a child aged under 10. Many loneparents whose youngest child is aged 10

or above will now be expected to signon and claim income-based Job Seeker’sAllowance instead o Income Support.

However, these rules will not apply toany lone parent who is able to claimIncome Support on some alternativegrounds. For example, a lone parentwho is able to claim Income Supportas a carer will not be aected by theserules, regardless o their youngest child’sage. In order to claim Income Support

as a carer, you do not necessarily needto be getting Carer’s Allowance – it issucient that you are providing regularand substantial care to someone gettingDisability Living Allowance (DLA) carecomponent at the middle or highest rate(or Attendance Allowance at any rate).Sometimes it is also possible to claimIncome Support as a carer while you arewaiting or a decision on a DLA claim.The new rules also won’t apply to certainother lone parents such as those who

have health problems which mean theyare incapable o work. I you are a loneparent who has been told your IncomeSupport will stop – get urther advicerom our helpline.

On 2 November 2009, new HousingBenet and Council Tax Benet ruleswere introduced which should allowmore amilies than ever beore to qualiyor help with their rent and council tax.

What are the new rules?Housing Benet and Council Tax Benet

provide help to low and moderateincome amilies with their rent andcouncil tax charges (or rates chargesin Northern Ireland). Both benetsare means tested. This means that theamount o income and capital thatyou have aects how much help youget. But rom 2 November 2009, ChildBenet payments have been ignoredas income.

This ollows a similar change made lastyear when Child Maintenance payments

also became ully ignored as income orHousing Benet and Council Tax Benet.

Who might gain rom the new rules?Families who don’t get maximumHousing Benet or Council Tax Benet,but who do get some help, shouldhave seen the amount o benet theyget increase rom the beginning o November. I this has not happened yet,contact our helpline or urther advice.

I you have applied or Housing Benetor Council Tax Benet in the past butbeen told your income was too high,contact our ree helpline or urtheradvice. We can check to see whetherthe new income rules will help you toqualiy or Housing Benet or Council Taxbenet or the rst time.

Income Support and lone parents– new rulesPrior to November 2008, a lone parent

was entitled to claim Income Supportso long as they had a child aged under16. In November 2008, new rules tiedentitlement to having at least one childaged under 12.

Direct payments in England– new rules

On 9 November 2009, thegovernment introduced new rulesallowing direct payments to bemade to the amily members o adults who lack mental capacity.Prior to this change, directpayments or a child who lackedmental capacity had to stopwhen the young person reachedthe age o 18. Under the newrules, direct payments can nowbe made to a amily member orany other willing and appropriate‘suitable person’ to receive andmanage the payments on behal o the adult lacking capacity. Thegovernment have updated theirguidance on direct paymentsto refect this change – this isavailable along with a user guideat: www.dh.gov.uk/en/SocialCare/Socialcarereorm/Personalisation/Direct payments/DH_076522 Paper copies are available romthe Department o Health

order line on 0300 123 1002(re 296235 or guidance and re 296787 or user guide).

http://www.dh.gov.uk/en/SocialCare/Socialcarereform/Personalisation/Direct%20payments/DH_076522







http://slidepdf.com/reader/full/connected-winter-2009 9/20Connected Winter 2009/10 9

Support groups

Lending a helping hand…Family Linking Ofcer, Louise Derbyshire, looks at using volunteers

I volunteered or Contact a Family while

studying. This involved attending eventssupporting amilies, working with aspecic child at workshops, or generallylending a spare pair o hands at theChristmas party or local events. I metsome inspirational people and had asense o making a real dierence to theday o that parent, child and amily.

Volunteers add a new dimensionto the support that groups can oeramilies and, although unpaid, most are

dedicated and enthusiastic.

I you are considering asking orvolunteers, it is useul to have adiscussion with your committee or theother parents in the group. That way, youare clear about what you want to achieveand the support that can be oered.

A volunteer may need to be shown howto put a newsletter together or howbest to use a computer package. I they are going to be answering the

phone, it may help to give themguidance. When using volunteers oran event you should brie them onhealth and saety, and on what levelo support you expect them to giveamilies. For example, you maynot expect volunteers to take soleresponsibility or a child or perormany personal care (such as changingnappies). You should also makeamilies aware o what they canexpect rom the volunteer.

Whatever you use a volunteer or, it’s

good practice to discuss condentialityand child protection issues withthem. The national voluntary supportorganisations listed below have lots o useul inormation on their websites.

Criminal Records Bureau(CRB) checksA CRB check is needed or anyonevolunteering to regularly support childrenand vulnerable adults. A new Vettingand Barring Scheme was introduced in

October 2009. Contact the CRB or theIndependent Saeguarding Authority orurther inormation.

Depending on what activities a volunteeris involved in, and how requently theywill be working with your organisation,you may not need to do a CRB check.

Case study: Prader-WilliSyndrome Association

This is the only organisation inthe UK dedicated to supportingpeople with Prader-Willi syndrome

(PWS), their amilies, carers andproessionals who work with them.Prader-Willi syndrome is a complexgenetic disorder present rom birth.

In 2006, the Association wasawarded a grant to set up anddevelop a network o volunteerparents to provide listening earsupport across the UK. Prospectivevolunteers had a one-to-oneconversation with members o the Association’s team, and each

volunteer was allocated a memberwho could support them. Parentsin the network take calls on specicissues that they have experienceo, and are provided with dedicatedmobile phones or this purpose.

The Association considered thatCRB checks were not necessary inthis situation as they were oering alistening ear by telephone to adults.

There is a charge to conduct your own

CRB checks, but an umbrella body canmake checks on your behal. Checks orvolunteers are ree, although you maybe charged an administration ee.

National voluntary support organisations:

Central Registered Body Scotland Tel: 01786 849 777www.crbs.org.uk

Welsh Council or Voluntary ActionTel: 0800 288 8329www.wcva.org.uk/volunteering/index.cm?sub=3&display_sitetextid=103

Criminal Records Unit Tel: 0800 019 7391www.wcva-cru.org.uk

Volunteer Development Agency – NI Tel: 028 9023 6100www.volunteering-ni.org

Access NI Tel: 028 9025 9100www.accessni.gov.uk

Independent Saeguarding Authority Tel: 0300 123 1111www.isa-gov.org

Volunteering England (see theirsection ‘The Good Practice Bank’)Freephone inormation line:0800 028 3304 (Mon-Fri 10.30am-12.30pm and 2pm-4pm)www.volunteering.org.uk

Criminal Records Bureau

www.criminalrecordsbureau.co.uk

Volunteer Development Scotland Tel: 01786 479593www.vds.org.uk

http://www.crbs.org.uk/

http://www.wcva.org.uk/volunteering/index.cfm?sub=3&display_sitetextid=103


http://www.wcva-cru.org.uk/

http://www.volunteering-ni.org/

http://www.accessni.gov.uk/

http://www.isa-gov.org/

http://www.volunteering.org.uk/

http://www.criminalrecordsbureau.co.uk/

http://www.vds.org.uk/

http://www.vds.org.uk/

http://www.criminalrecordsbureau.co.uk/

http://www.volunteering.org.uk/

http://www.isa-gov.org/

http://www.accessni.gov.uk/

http://www.volunteering-ni.org/

http://www.wcva-cru.org.uk/



http://www.crbs.org.uk/



Other news

Aiming High orDisabled Children

Parents and young people participation

Involving parents and young people inshaping services is a key component o Aiming High or Disabled Children. This isa government programme to transormservices or amilies o disabledchildren in England. One strand o theprogramme is to improve and increasethe number o short breaks available.Below are a couple o examples o how

parents, children and young people havebeen involved, helping to bring aboutreal improvements in amilies’ lives.

Stoke on Trent: Summer holiday provisionThe commissioner responsible ordeveloping short breaks met a group o parents to ask them what type o shortbreaks they wanted. The parents saidholiday times were dicult with theirchildren stuck at home with nothing todo. The parents described the types o

activities their children enjoyed and said

they thought special schools were thebest place to hold them, as the buildingshad the necessary acilities and thechildren already knew the sta.

Using this inormation, a range o dierent activities were organsiedover the summer holiday at six specialschools, which were well attended.

Feedback rom parents and youngpeople suggests they were verysuccessul. The parents are nowconsulting with the children and youngpeople who attended to nd out whichactivities were most enjoyed. Thisinormation will be used in the planningo uture holiday provision.

Oldham: Fun activities or amilies with disabled childrenA amily un day was organised orthe summer hal-term to give amilies

with disabled children an opportunity

to try out dierent sports activities.Children and their parents were able totry out trampolining, a climbing wall, asensory room, parachute games andaccessible bicycles.

The parents and children rated the bikesas the most un and so some researchwas done to look into setting up a acilityin a local park.

A day was arranged where bicycleproviders Wheels or All and Activatecame to Oldham with a range o dierent bicycles. Six schools wereasked to send twelve children each atdierent intervals during the day to tryout the bicycles. Transport was arrangedto escort the children and sta romschool and back. All the children wereasked which bicycle they preerred,inormation that will be used todetermine which models to purchase.

The ultimate aim is to have a acilitywhere amilies can enjoy cyclingtogether, and use bikes suitable or allages and abilities.

Children try out a range o bikes provided by Wheels or All in Oldham.

I you have a story about howAiming High is transormingservices, or would like to getinvolved in parent participation,contact Kate Johnstone at Contacta Family on 020 7608 8783.



Other news


Carers Poverty Charter sends clear message to No. 10I the Government is to stop carerpoverty by 2018, as it has pledged,action needs to be taken now.”

Mike Hobday, Head o Policy atMacmillan Cancer Support, whosupported the Charter said: “It’s vital

that the rate o Carer’s Allowance isincreased to stop carers alling intopoverty, and that carers are bettersupported so they can stay in work.”

A mum rom Devon has successully

persuaded her local Sainsbury’s topurchase a specially adapted trolley seator disabled toddlers.

She is now calling or every supermarketto stock the adapted trolley and Contacta Family is supporting the campaign.

Julie Evett said: “The experience o goingshopping or my daughter Rose is reallystimulating. She loves the sounds andsmells and the experience helps her

development. I think disabled childrenshould be out and about with theirparents enjoying lie to the maximum,not hidden away and isolated. This trolleyhas given us a new lease o lie and I’dlike to see all the major supermarketchains stock at least one.”

Julie was determined to take Rose, agedthree, shopping and not isolate herrom the rest o society. Rose has anundiagnosed brain disorder and can’tsit up unaided or support her head. The

typical supermarket trolley seats didn’tgive her enough support and would havebeen dangerous to use. Julie struggledto push Rose in her wheelchair as wellas push a trolley, so oten had to leaveRose at home.

Julie approached Sainsbury’s inBarnstaple, North Devon, about thediculties she was experiencing andCustomer Services Manager, KatieSouthworth, agreed to order a specially

adapted trolley.

Julie has set up a Facebook petitiongroup – Every supermarket needsthis new disabled trolley – to supporther campaign. Contact a Family isurging amilies to sign up to thegroup to help them get out and aboutdoing everyday activities that otheramilies enjoy.

Srabani Sen, Chie Executive o Contacta Family, said: “Families with disabledchildren are oten unairly isolated.

We campaign to reduce this isolationand help amilies lead ordinary lives.This adapted trolley is a simple, practicalsolution to help amilies with disabledchildren take part in an everyday activityand we ully support Julie’s campaign.”

Contact a Family supports adaptedtrolley campaign – join our drive!

Rose in her specially adapted supermarket trolley seat.

Rose’s mum, JulieEvett and KatieSouthworth romSainsbury’s.

P h o t o s c o u r t e s y N

o r t h D e v o n G a z e t t e

Carers UK’s Carers Poverty Charter,launched in May on BBC Breakast,and now signed by 20 major nationalorganisations, including Contact a Family,and over 3,000 members o the public,has been delivered to 10 DowningStreet by a delegation o carers.

The Charter calls on the governmentto set out a timetable o action toimprove carers’ benets.

Neil Hunt, Chie Executive o theAlzheimer’s Society, said: “Carers savethe UK billions o pounds every year…

Sign up to Every supermarket needs this new disabled trolley www.acebook.com/group.php?gid=180123000906&re=ts

http://www.facebook.com/group.php?gid=180123000906&ref=ts






Housing matters

Housing mattersIntroducing our theme, ocusing on housing issues

Home is where the heart is, the

saying goes. But or many amilieswith disabled children, it is an uphillstruggle to get not only the righthousing, but the right adaptationsand equipment their child needs.In this edition o Connected parents

talk about their experiences

o getting help to adapt theirhome, and highlight why it is soimportant. We also hear romone mum who’s helpedher son move on tolive independently.

What can a DFG

do or you? Jesslyn Parkes, our Helpline

Manager, speaks about the

Disabled Facilities Grant (DFG)

We receive lots o calls to our helplinerom parents hoping to have theirhome adapted to their child’s needs.

Adaptations can be anything romwidening doors and installing ramps ora stair lit to improve access around thehome, to building a downstairs bedroomor bathroom, or adapting lighting andheating. In England and Wales, makingor improving access to gardens are alsoclassed as adaptations.

The Disabled Facilities Grant (DFG) is thelocal council grant intended to cover thecost o adaptations, and is not means

tested or disabled children. In England,it can be up to £30,000, in Wales,£36,000 and Northern Ireland, £25,000.To qualiy or the grant, there has to bean agreement that the adaptations arenecessary and appropriate and that theworks are reasonable and practicable.

In Scotland, the scheme is called HomeImprovement Grants, and new ruleshave been introduced (see page 18).

Contacting social services or theoccupational therapist (OT) with arequest or a DFG assessment is not thesame as making a ormal application.To minimise delays, ll in and submit

the ormal grant application orm,available rom your local authority, beorethe assessment is carried out. A localauthority then has a duty to make a

decision within six months o receivingyour application.

Julie Marriott, whose son Toby hasCerebral Palsy and is visually impaired,says that the extension, which includesa downstairs bedroom and wet room orToby, has made an enormous dierenceto the wellbeing o the whole amily.

“Toby couldn’t walk until he was sevenand now, at the age o almost 11, he

still can’t navigate stairs. He has nodepth perception so it is very dangerousor him. We had to carry Toby in areman’s lit up and down stairs to usethe bathroom and go to bed. This wasa strain on us and was undignied orToby,” said Julie.

“We heard about the DFG romContact a Family’s newsletter andcontacted the council. They reerredus to social services who arranged

or an occupational therapist to do anassessment. We then had to ll out anapplication orm we’d received romthe council. I would say to any parentthat you must sit down and think about

all the reasons why you need theadaptation – the dangers, saety issues– and be prepared to argue your case.

“We were assessed as needing adownstairs bedroom and bathroom, andwere granted £25,000 which was themaximum at that time. The extensioncost was £32,500 so we had to ndthe extra. We were very lucky in that wewere given £5,000 rom Purple DreamsCharitable Foundation.”

Unortunately, the Marriotts wereunlucky with a huge delay to buildingwork due to problems with planning

permission. This meant the process took our years rom start to nish.

“It was a very stressul and tense time,but it was well worth the long hardstruggle,” said Julie. “Toby can now goto his bedroom when he wants and besupervised rather than depending onsomeone. The room is entirely adaptedto his needs, including light switches at aconvenient height, which is a great boostto his independence.”

Julie Marriott with Toby

Contact the helpline on 0808 8083555 or advice on applying or agrant or challenging a decision.



Housing matters Theme o the issue


I live in Ballymena, Northern Ireland.I’m a single mum with two children withdisabilities. My six year old girl has achromosome disorder and mild learningdisability and my nine year old boy hasautism and moderate learning disability.

Our three storey house was built in theearly 1900s, on a very busy main roadwith no driveway. We haven’t beenallocated a disabled parking bay as

neither o the children qualiy or a BlueBadge, so I oten have to park somedistance rom our home.

Because we’ve no driveway and parkingspace, I have to get the two childrenout o the car at the side o a dangerousroad, plus shopping or anythingelse. Neither o my children have anawareness o danger and this is a majorworry or me every day. My eldest reactsadversely to loud noises and screamswith distress or impulsively darts or bolts

directly into trac.

Among my other worries are a sae andaccessible play area so I don’t have to beconstantly supervising the children andwatching or dangers, and a downstairstoilet due to their extra toileting needs.

I ound out about the Disabled FacilitiesGrants scheme and, in May 2008,contacted the local OccupationalTherapist (OT) or an assessment or

housing adaptations. In Northern Ireland,the Housing Executive will only considerhousing adaptation applications that arerecommended by an OT, which can takemonths to arrange.

The OT assessment approved the needor a downstairs toilet and shower anda sae play area. But despite plenty o room or a driveway, this need was nottaken onboard or deemed essential.

I got in touch with Karen, Contact aFamily’s Family Support Ocer, andraised my concerns with the OT.Even though the work was well withinthe grant amount, the OT reused toreview her decision.

We called a meeting at my house withthe Housing Ocer or the HousingExecutive, the OT, me and Karen todiscuss the plans. Again we raisedthe issue o the unsae car parkingand lack o driveway and this time theHousing Ocer agreed to include it inthe adaptations.

I had plans drawn up by an architect,costing £1,300, which I had to pay

up ront mysel. The cost can beully reimbursed when the work iscompleted, providing the architect hasindemnity insurance. But many amilieswith disabled children are strugglinganyway and can’t cover this ee, andthere are no grants to help with thishety outlay.

Nearly 18 months later, there are stillongoing minor details to be ironed out,

I eel I’ve compromised on some issues,but the schedule o works has beengranted by the OT and the architect. I’mnow in the process o selecting a builderrom the approved Housing Executive list,and planning permission is in progressor the Department o Environment tolower the ootpath or access to the newdriveway. We then need ormal approvalrom the Housing Executive, which cantake up to six months. When this stage

is reached, the work schedule should becompleted within 12 months.

In the lives o my two disabled children,this is an unbelievable amount o time!By the time the work is complete, thechildren’s needs may be greater. It’s along time to wait or work that can bedone privately within several months.

The waiting game!One mum tells her story about getting housing adaptations

in Northern Ireland

P h o t o c o u r t e s y i S t o

c k p h o t o . c o m

“My eldest reacts

adversely to loud noisesand screams with

distress or impulsively

darts or bolts directly

into trafc.”

I you’re unhappy with theoutcome o an application or a

grant, or the length o time it’staking, call the Contact a Familyhelpline on 0808 808 3555.

Or download our guide ‘Aids,equipment and adaptations’or details o how to challengedecisions or make a complaint,available ree rom www.caamily.org.uk/AidsUpdate.pd

http://www.cafamily.org.uk/AidsUpdate.pdf






Housing matters

In the meantime, Mr Saglam had startedto clear some o the rubbish in thegarden and tried to fatten it out a bit.When the volunteer team came rom

John Lewis in Oxord Street, they spenttwo days working incredibly hard. Whenwe went back to see the amily theywere delighted with their brilliant newoutdoor space and the opportunities itprovides or them to enjoy as a amily.They’d started growing their ownvegetables so we had the delight o eating home grown tomatoes, whichwere delicious!

We decided to make a video, as

the amily wanted a record o thetransormation. It also provided a

great opportunity to showcasethe work o WellChild, and howContact a Family can help, too.

I made contact with WellChild inFebruary and spoke to Lee Trunks, theHelping Hands Project Manager. He wasvery interested in acilitating a garden

makeover as it was the right time o theyear to start the process. So we took photographs o the garden and sent alittle resumé o the amily and details o how the makeover would benet themto WellChild.

In March, we received conrmation thatWellChild had decided to take on theproject, and a site visit was arranged orMay with a start date or the work sometime in August.

I contacted the amily’s HousingAssociation or permission andto ask or a skip to take awaythe rubbish. This was donewith the minimum o ussand the Association liaiseddirectly with Lee.

Our oce in Southwark oersinormation, advice and support toparents and carers o children withany aspect o caring or their disabled

child, as well as proessionals workingwith amilies. We help amilies ndinormation on their child’s condition,getting extra help at school, benetentitlements and can tell them aboutother organisations who can help.

We received a leafet rom WellChildat the end o last year introducing theorganisation and outlining what theydo. As well as children’s nurses whowork with amilies across the UK, theirHelping Hands scheme enlists the

support o volunteers rom companiesand organisations up and down thecountry to tackle projects in the homeso ill or disabled children. They helpin truly practical ways, or example,completing a garden makeover orbedroom reurbishment.

At about the same time, we weresupporting a Turkish-speaking amily,Mr and Mrs Saglam, who have threechildren. Their middle son has a

condition which causes weaknessin his legs and arms. They had beenallocated a house with a garden, whichwas antastic. But the garden was ina very bad state and needed a lot o work beore the children could use it.We explained to the amily that wewould like to put them orward or agarden makeover and they were keento take part.

Made up with agarden makeover

Alice Cameron, our Senior Family Worker at Contact a Family Southwark,

explains how many helping

hands make light work

Mrs Saglamwith her son

Beore and ater the makeover organised by WellChild and Contact a Family

Watch the video on YouTube atwww.youtube.com/caamily

I you think you could benet romHelping Hands, please call LeeTrunks on 0845 458 8171, [email protected] orvisit www.wellchild.org.uk

http://www.youtube.com/cafamily


http://www.wellchild.org.uk/

http://www.wellchild.org.uk/


http://www.youtube.com/cafamily





receive the direct payment. We becameemployers. We had to recruit and trainsta, arrange activities to keep Andrewbusy and so on. It was essential thatthese costs were included in the directpayment as well as the cost o direct careand support. His care plan identifed hisassessed needs, his PCP identifed howthese needs would be met.

A home or Andrew needed to be robust

with decent door hinges that couldn’tbe wrecked ater an outburst, and awayrom a busy main road or bend. I oundthe Housing Options and My Sae Homewebsites very useul at this time.

Andrew now lives in his own homesupported by sta that are selectedor their personalities rather thantheir qualications.

Amongst other things, he is sharing thesame community as his amily, and

making riends with his neighbours. He’sa member o the local leisure centre,is a volunteer in a woodland projectand has been supported to develop asmall micro-enterprise collecting plasticor recycling. He does a variety o otherthings and loves going places, especiallytravelling by bus. Many o the bus driversnow know him well, and will greet himas he boards the bus. His lie is busybecause it needs to be!

Andrew’s needs are complex. His directpayment buys him 2:1 support and1:1 sleep-in support at night. His supportteam get a clear induction based on hisPCP, ollowed by urther tailored training.

It has been hard work – that I can’tdeny! But, most importantly, my sonis getting a good lie. The outcomescouldn’t have been better.

When it’s time to do what will work Jan Seamer talks about her son’s needs and why it was

important to fnd him a home o his own

My son Andrew is a young man o 24.He has a severe learning disability andbehaviours described as challenging. Hehas virtually no spoken language anduses his own signs and photographsto communicate. When he becomesanxious and eels insecure his behaviour,which is how he communicates whenthings don’t make sense, can bedicult to manage. As a result this hasled to exclusions.

It was devastating when he wasexcluded rom our local SLD school aged14½ years (a school or pupils withsevere learning diculties). He was alsoexcluded rom a short breaks service.

We travelled the length and breadtho the country to nd a school thatwould be able to meet his needs. I wasespecially worried at how he’d besupported i he became homesick and sad.

Unortunately, the only school thatseemed to be able to meet his needswas a residential special schoolmore than 200 miles away. ForAndrew to have to live so ar awaywas heartbreaking.

My son is a very active, energetic youngman who has physical energy to spare.What works is keeping him busy andproviding structure and routines that

make sense to him.

At the age o 18, Andrew was excludedagain! He had no transition plan, nopathway plan and no idea o howhis needs would be met by the localauthority. He came home to live withme. An agency was contacted at shortnotice to provide support which was arrom ideal.

This was a very dicult time but we

continued to be helped by our Circleo Support (riends and amily) andarranged or a Person Centred Plan(PCP) to be completed. The plan waspulled together by using stories provided

by our amily, Circle o Support andpaid sta – in act anyone who hadsomething to share was invited. It hashelped to identiy:

• WhatisimportanttoAndrewandmakes sense in his everyday lie.

• Whatdoesn’tmakesensetohimandis best avoided.

• Howbesttosupporthimtoleadtheliestyle he chooses.

• Andhowtoenablehimtohavethethings that are important to himwhilst ensuring he remains saeand healthy.

By looking in detail at what works and

what doesn’t leads to success. It reallydoes work!!

Unortunately, providers ailed to seethe importance o the detail containedin the PCP, especially where Andrewwould need to live. The PCP hadidentied he needed to live in thevillage where he was born and hadgrown up and shared with his extendedamily. It became clear that to ‘get itright’ we needed to do it ourselves. So

we decided to take the money in theorm o a direct payment.

This was a huge commitment. The Circleo Support became a Trust in order to

Or visit www.housingoptions.org.uk and www.mysaehome.ino/

Contact the helpline on 0808 808

3555 or more inormation.

http://www.housingoptions.org.uk/

http://www.mysafehome.info/

http://www.mysafehome.info/

http://www.housingoptions.org.uk/





Parents and proessionals workingtogether to achieve change and makedevelopments in present practice isbeginning to be seen regularly acrossCounty Durham, in all areas and servicesor children with additional needs. It wasthis knowledge that has enabled me tocope with my experience. I now know

that the process will change and willget better.

The builder also did not know that thebathroom sink needed to be put ontoa strengthened wall. Then the bath wasput in beore the waterproo foor, tilesand ceiling plastering, so it quickly gotcovered in plaster!

I have ound the whole experience reallystressul and the attitude o the builderupsetting. Despite being asked requentlyto improve his work, nothing changed. Itseems to have gone on or ever and therest o the house has remained ull o boxes rom the kitchen and bathroom!

On the plus side, Cameron loves thebath and obviously eels very secure withall the padding and supports. The bathhas also been designed to be used as

a changing bench, as the side comesdown or easy access.

The push buttons or the door havechanged my lie, never mind Cameron’s.When he’s in his manual wheelchair,being able to push him out withouthaving to hold the door open at thesame time makes lie so much easier.

Because I have been very vocal in mydisappointment with the standard o building work, a senior manager became

involved. It has now been agreed thatparents and proessionals will come

together to orm a ocus group to

write a booklet.

The booklet will explain the DisabledFacilities Grant to both parents andproessionals – what is involved, whatis available and useul inormation suchas threshold sill heights and the need tostrengthen walls, or example.

My understanding is builders will thenget a contract o standards to sign, andthey’ll have to achieve certain standardsi they are to continue winning contracts.

Cameron making use o the electronic sensor tap. The kitchen sink is ftted

with special wall brackets and a handle so it can be manually moved up and down.

Cameron with his cousins, Jacob and Abbie.



Housing matters

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

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living accommodation. I an extension

provides a standard amenity (suchas a bathroom) alongside additionalliving accommodation, then a grant canonly be awarded or that portion o thecosts linked to the standard amenity.I an extension solely creates space ora standard amenity and no additionalliving space is created, then ull costscan be met.

When did the rules come into eect?Local authorities have until April 2010

beore they have to ully implementsome discretionary aspects o the newscheme. However, guidance rom theScottish government emphasises thatthose parts o the new legislation thatplace legal duties upon local authorities,including the provision o mandatorygrants as outlined above, came intoorce in April 2009.

with them, is getting Income Support,

income-related Employment and SupportAllowance, income-based Jobseeker’sAllowance or Pension Credit (guaranteecredit) it must meet 100 per cent o costs. Where someone does not receiveone o these benets, a council maystill decide to give a grant or more than80 per cent o costs.

What is the maximum amount o grant I can get?Under the new rules, there is no longer

any xed upper limit on the amount o amandatory grant. Instead the grant mustcover the costs o the necessary work asidentied in the assessment o need.

How will local councils decide i anadaptation is essential or not?Councils are only under a duty to oergrants where an adaptation has beenassessed as ‘essential’ to the needs o a disabled person.

Are there any types o work that a

grant will not meet?The new rules state that councils cannotgive a mandatory grant to extend aproperty in order to provide additional

I you are an owner-occupier or a

private tenant, you may be able to gethelp rom your local council with thecosts o adaptations. A new system o nancial assistance has been introducedin Scotland – this includes, or the rsttime, mandatory grants to cover thecosts o adapting a property to meet theneeds o a disabled person.

What is dierent about thenew scheme?Under the previous home improvement

scheme, the only grants that weremandatory were those given to providestandard amenities such as baths,showers and toilets. Grants or allother types o work were always at thediscretion o local authorities. Undernew rules, councils now have to oergrants or any structural adaptations(other than certain extensions) thatare assessed as ‘essential’ in order tomeet the needs o a disabled occupant,including a disabled child.

I a mandatory grant is awarded onthe basis o disability, it must cover atleast 80 per cent o costs. However,where the applicant, or anyone living

Housing Improvement GrantsParent Adviser, Derek Sinclair, explains the new rules or Scotland

The Scottish government’s booklet,Help with adaptations to your home

– a guide for disabled people in private housing is ree to downloadat www.scotland.gov.uk/Resource/Doc/266465/0079748.pd

PaymentSubscribe and pay by credit card online at www.caamily.org.uk/amiliesadviceandsupport/publications/connected.html

Or pay by cheque or postal orderI enclose a cheque/postal order made payable to ‘Contact a Family’.

Please send my subscription to:

Name ____________________________________________________________Address ___________________________________________________________ _____________________________________ Post code ____________________Tel _____________________ Email ____________________________________Parent support groups can receive Connected or ree. Please call our helpline, tel 0808 808 3555

The magazine or amilies with disabled children and all those who work with them• Stayup-to-dateontheissuesthataffectfamilieswithdisabledchildrenandthehelpyoumaybeentitledto.• Storiesfromotherparentsabouttheirexperiencesofhavingadisabledchild.• Allthenewsacrosstheorganisation.

http://www.scotland.gov.uk/Resource/Doc/266465/0079748.pdf





http://slidepdf.com/reader/full/connected-winter-2009 19/20Connected Winter 2009/10 19

Resources – Local contacts

Working as a Family Worker or Contacta Family means every day is di erent.I enjoy the variety o my work. Somedays I’m working rom home respondingto telephone and email enquiries, somedays I’m out and about visiting amiliesand attending meetings. I’ve interviewedparents about their experiences o earlysupport, organised amily cinema events

and run siblings groups.

However, when I was asked to doa podcast I was, to say the least,rather surprised!

I didn’t really know what a podcast wasand certainly didn’t know how to makeone. My experiences o recording wentback to the 1980s, when I taped theTop 20 on a Sunday evening!

I ound out a podcast is a digital media

le you can download rom a website.Contact a Family got unding to developthis new way o sharing parents’experiences and raise awareness o conditions. The aim is to give parents avoice, inspire others, and reduce eelingso isolation by letting parents hear romothers who have children with the samecondition as theirs.

Anyway, ater a couple o trainingcourses I elt ready to embark on mynew venture.

So one morning in August I nd mysel checking my podcasting equipment: myrecorder, microphone and headphonesbeore setting o to record my sixthpodcast interview.

This interview is with Sonya, whose15 year old son, Oliver, has Gorlinsyndrome. Gorlin syndrome isan inherited predisposition to thedevelopment primarily o multiple basalcell carcinomas (localised skin cancers)and the development o multiple cystswithin the jaws. I’ve never met Sonyabeore, but have had several telephoneconversations with her ater being putin touch with her through the GorlinSyndrome Group.

As I arrive at Sonya’s workplace, I eellike an extra rom ‘Spooks’ carrying myrecording equipment in a carrier bag!Sonya is very welcoming and we aresoon discussing Oliver and his conditionand the inormation that will be coveredin the podcast.

Sonya is very generous with theinormation that she shares with meand I eel privileged to listen to herexperiences. Ater recording the interview,I spend some time with Sonya beore shehas to return to her work and I pack awaymy microphone and head home.

On the train journey home, I’m hopeul

that the podcasts will be a useulsource o inormation or amilies andalso workers, students, policy makersand politicians. I eel that the podcastscapture an invaluable insight intoamilies’ lives.

Once back home, I transer my recordingonto my laptop so that I can beginediting the interview with Sonya. Thisincludes cutting out background noisessuch as clocks ticking and dogs barking.I’ve ound that I can now identiy an

‘ummm’ by the shape o the soundrather than by hearing it!

For the remainder o the day, I returnto my role as a Family Worker ratherthan Podcaster, making phone calls andreplying to emails.

Sonya’s interview is now edited and willbe on our website soon.

A day in the lie…Our Family Workers oer parents one-to-one help and support

through times o need. Here Corriena Tomkinson talks about one

aspect o her job – podcasting

Volunteer Parent RepresentativesContact a Family has a team o VolunteerParent Representatives throughout theUK. They are all parents or carers o disabled children themselves, some withcomplex and rare conditions. So they ullyappreciate the impact o caring or thesechildren. The team oers someoneto talk to and signposting to local

sources o inormation and support.

Family WorkersOur team o experienced FamilyWorkers covers dierent parts

o the UK. Family Workers can helpwith any o the wide range o issuesthat amilies can ace when caring or adisabled child, such as claiming benets,providing inormation about SEN, throughto putting you in touch with local andnational sources o support.

How to fnd your local contact

Contact our helpline, tel: 0808 8083555 or check our website,www.caamily.org.uk/inyourarea tond out your local Family Workeror Volunteer Parent Representative.

Local contacts – support rom Contact a Family

http://www.cafamily.org.uk/inyourarea

http://www.cafamily.org.uk/inyourarea



Freephone helpline: 0808 808 3555 Textphone: 0808 808 3556

Contact a Family 209-211 City RoadLondon EC1V 1JN Tel: 020 7608 8700Fax: 020 7608 8701

e-mail: [email protected]

www.caamily.org.uk

www.makingcontact.org

Getting in contact with us

Registered Oce: 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 reephone helpline oradvice and inormation on any aspect o caringor a disabled child.

Contact a Family is the only UK charity providing

support and advice to parents whatever themedical condition or disability o their child. Ourhelpline is a ‘one-stop-shop’ or parents andamilies whenever they need answers.

connected - winter 2009

Documents