guide for fathers - Contact a Family

guide for fathers - Contact a Family

FathersInformation for familiesIncorporating The Lady Hoare TrustUK

IntroductionHaving a disabled child affects all members ofa family. No matter if you are a new parent, oran experienced one – everyone can react indifferent ways to the news that their child has adisability or medical condition. As a father of adisabled child you will have to adapt to a newand sometimes challenging set of circumstances.This guide will help you learn more aboutpractical information you may need andhelp you understand how other fathers haveexperienced having a disabled child.In the development of this guide we met anumber of fathers and talked to them abouttheir experiences and their advice for others. Wehope it helps you.This guide will provide you information on the following issues:• practical information• tips from other dads• signpost to benefits• overview of some legal issues• further places to go for information, advice and support.2 Fathers

What do you need to know about?This flowchart is a quick guide for you to find out what things you need to know about.Use it to get a brief overview of what is involved or what you may be entitled to if youare a new father, or an experienced one, and whether your child has a diagnosis or not.I am a father of a child, or havechildren, with additional needs. Ineed some information.You and your familyIt is important to think aboutyourself and your family. See pages4–10 for advice and information.Tips from other dads can be foundon page 7.For relationships information,including if you are separated fromthe mother of your child, look at theadvice on page 9–10.Dealing with employersIf you work, you may be entitled toparental leave, or to ask for flexibleworking to make sure you can be athome when you need to be.See page 11 for quick informationon what that means and what to do.Also see the pull-out guides onpages 23–24.Getting further informationThere is a lot of information outthere to help you understand andfigure out what to do.Read this section on page 20 to getin the know.MoneyIf you work, or if you don’t, thingsstill cost.See pages 14–16 to find out aboutbenefits, or other help, you mayclaim to help cover those costs.“We always try to be happy and live fortoday, and at the same time fighting likehell so there’s a tomorrow... my childrenremind me every day that strength comesin many surprising ways!”Freephone helpline: 0808 808 3

Your roleThe dads we met all agreed that their rolewas a mixed one. Many highlighted thefact that they often needed to work morethan their partners, particularly becauseof the extra costs of caring for a disabledchild. This often led to them being absentfrom meetings or from carrying out muchof the day-to-day care of their child.Others however, became the main carerfor their child and dealt with most of theappointments and professionals to gettheir child’s needs met.Some challengesFathers tell us that they usually reachacceptance of their child’s disability ata different time to the child’s mother,and that often needs honest discussion.This can sometimes be challenging forcouples who are together and parentswho are separated.One of the main concerns dads sharedwas the management of servicesavailable for disabled children andprofessionals who are designing thoseservices – fathers who cannot attendmeetings are sometimes presumed to benot doing anything.Fathers often see their role as oneof providing strength and stability –maintaining normality during a periodof uncertainty, very often ensuring theiremployment continues at times ofuncertainty. As a result, they are oftenabsent from meetings which can beseen as indifference by partners, familymembers and service providers.A survey of 500 dads by Netbuddy andScope found that fathers of disabledchildren are doing all they can to beinvolved in their child’s life, but facehurdles at most steps along the way ₁ .This can leave fathers feelingmarginalised and unsupported. Thesurvey found that dads often worry aboutmoney, do not often know about theirright to request flexible working, and wantmore support in their relationships withtheir partners and their children.This guide is meant to help getyou started in finding support andinformation. For further advice, ourfreephone helpline is always availablewith the most up to date information foryou and your family.Top Tip: It is crucial at this time tomake your position as a father clear toall professionals concerned and ask forwritten information about decisions madeabout your child. Then it will be clear forall on how to keep you updated.4Fathers

“Dads often find themselves without theright information, professionals don’ttell me what’s going on because I’mnot at the meetings and her mum can’tremember everything they talked about.When I go to the meetings they think I’vecome to make trouble!”As a dad, you may feel you have a dualrole; you may need to offer support, butalso provide the practical help when itis needed. Mothers usually take on therole of ‘keyworker’, sometimes becomingoverwhelmed by a system that is complex.At these times your partner may ask forsupport from you, mainly when tryingto access a particular service, therapy oradaptation. Sometimes, without priorknowledge of decisions previously made,fathers will have to ‘enter the fray’ which canbe very daunting. Many dads have been‘tripped up’ by simply not understanding thecomplex systems surrounding their child –who does what and when do they do it?Top Tip: In these situations it is worthspending time getting your knowledgetogether. In other words, do yourhomework.Information for new dadsIf you have a premature or sick baby,or have just received a diagnosis fora new baby then you might find theorganisation BLISS helpful.Freephone helpline: 0500 618 provide information and advicefor parents with children ‘born toosoon, too small or too sick.’The needs of fathersLike any parent, when you find out yourchild has a disability or additional needsthe first thing you’re likely to look for isinformation and possible solutions. Mostfathers feel this is the most importantissue – but most soon learn that it is vitalnot to forget the child in their search forinformation.“When we were in the hospital we keptwatching the bleeps on the monitor.The nurse came in and said don’t worryabout looking at the monitor so much,the child is here on the bed.”“I spent hours looking for information onthe internet. In the end I realised I wasjust torturing myself. My time is betterspent with my children.”Solutions can be found if you know whereto look. Be pleasant, but push for answersand seek out services that are there tosignpost you to the most helpful path.Contact a Family has multiple waysof delivering information, supportand advice. Call our freephonehelpline on 0800 808 3555 tospeak to expert advisers and receivefree resources.We have parent advisers and officesaround the UK to offer face-to-facesupport. Visit our to see if wework in your area.Freephone helpline: 0808 808 5

How does it feel to be a father?Becoming a dad is a big change in yourlife. Being a dad to a disabled childinvolves more changes than you mighthave imagined – you will need the rightinformation and to know where to go foradvice or support. Here are some of thethings the dads we met said:“We did it at different stages – she wasbusy looking on the net, finding othermothers, talking to professionals – I justwanted to take it all in, in my own time,get my head around it.”“We spent the first few months in a stateof anxiety and shock, the nurses werefantastic, but then we were on our ownand that’s when you don’t want to sayhow scared you are.”“My boys have shown me the value oflife.”“It just hits you – you don’t hearanything else other than the diagnosis. Ittook about two days before I looked onthe internet.”Top Tip: Tell someone you trust howyou are feeling because if you don’t itwill build up. Talking about it may helpyou find some solutions and comfort.Remember to be as positive as you can,when you can.Sound AdviceMost of the dads we met felt their mostimportant need was to be listened to. Tryto make use of all your support networks– this might be your partner, family,friends, neighbours or other dads. Youcan also call our freephone helpline.Some key tips:• try not to keep your problems orfeelings to yourself. Share them withsomeone you trust• try to find some time to be with yourpartner without your child• try to take care of yourself – you can’tbe as supportive of your family if you’retired and stressed• you may find it helpful to spend timeon your own or with some friends doingthings for yourself• remember it is okay to ask for helpfrom the people around you.“As soon as I was able I made her amember of our football club. Now she’sa regular mascot – I am so proud!”6Fathers

Tips from dads for dads• Adore your child for their individualityand be proud of their achievements.• There is no such thing as a stupidquestion – don’t walk away until youunderstand.• Don’t be afraid to negotiate onappointment times. An early or lateappointment will give you a muchbetter chance of attending andworking too.• Take some time for yourself – it’s notselfish, but essential.• You need to sleep. Tiredness causesirritability and arguments.• Make time for your partner too. Evenif all you talk about during this timeis your child, it is healthy to do thiswithout your child there.• Talk to other dads who have disabledchildren – they are much more likelyto understand.“Acknowledge your partnerwhen you come homeinstead of going straightto your child, your kid willhave been well lookedafter, whereas your partnermay need some tenderloving care.”“Groups or organisationsspecific to your child’sdisability exist. Use themas both a source ofinformation and someoneto talk to.”• Always emphasise and rejoice in thethings your child can do.• Make contact with other dads whosechildren have the same condition orlive nearby.• Investigate what help is available foryou and your family. There are peoplewho can advise you on this.• Talking to someone who actuallyknows what you’re going through ispriceless.• Take information from the internetwith a large pinch of salt unless youtrust the publisher.• Other people are often embarrassedby disability. This is their problem, notyours.• Never be embarrassed to explain yourchild’s disability. Don’t assume thatothers will understand first of all.• It’s normal to feel confused, dazed,angry and annoyed.• Don’t be too proud to accept help –its part and parcel of the journey.• Don’t be too proud to accept benefitsor grants. If you qualify for them, youdeserve them and you can use them.Freephone helpline: 0808 808 7

Balancing thingsBalancing work with responsibilities ofcaring for children and running a familycan leave little time to devote to yourselfor your partner. The unpredictable natureof some conditions, and difficultiesgetting time off work for hospitalappointments means that informationwill need to be shared and discussedbetween you and your partner. Thinkabout ways you can best support eachother, particularly when decisions aboutyour child need to be made.“It can be a balancing act betweenkeeping your employers sweet, wantingto spend time with your family, trying tokeep abreast of what is happening withyour child and supporting your partner.”Lone or single fathersSome dads become separated from themother of their child and some becomethe main carer for their disabled child.“At first I felt completely excluded andblamed my son’s mother. I knew thatleaving was my decision but I missed thekids. Then, when I found my feet, I likedmy time with both kids.”If you are or will become the main carerit is important to access as much adviceand information as you can. Call ourfreephone helpline, see our list of usefulorganisations at the end of this guide andremember to share what you find outwith other members of your family.StepfathersStepfathers need just as muchinformation and support as any otherfather – perhaps more when they comeinto a child’s life without experiencing allof their history. If this is you – see ourlist of useful organisations on page 20 ofthis guide.“I found out he has most of my interests –cars, lorries, aeroplanes, buses andmotors in general. We have morein common than his real father andcertainly more than his mother! I marriedinto the perfect family.”When you find out your child has adisability the first thing you’re likelyto look for is information. When youare ready, sift through it to see whatsuits your family and always lookfor trusted and verifiable medicalinformation. Contact a Family’smedical information on our websiteis a good place to start.8Fathers

RelationshipsYou and your partnerHaving a disabled child may put pressureon your relationship with your partner,or you may react in very different waysto issues concerning your child. It isimportant to keep talking and at timesyou might need to compromise. Talkingto others about your relationship is fine,but remember the main person you needto talk to is your partner.If you are worried about your relationship,there are organisations that can help.RelateTel: 0300 100 offers advice, relationshipcounselling, sex therapy, workshops,mediation, consultations and support.This can be done face to face, by phoneor through their website.We have a Relationships guide availablefrom the Contact a Family website oravailable for free through calling ourfreephone helpline.Making decisionsLots of the dads we met were keento add that, “decisions are madejointly.” They felt there is a real needfor a lot of talk and discussion betweenparents. Dads can sometimes feel a bituninformed because their partner seesinformation first.“Lots of information goes to my wife. Sheopens all the letters and information weget that explains things like benefits.”“I’d say to most other fathers – make ityour business to read the letters and findout what’s going on.”“Be part of the planning otherwise you’llget left behind, everything moves fastand you need to know what’s going on,it’s your business too.”Of the dads we spoke to, most felt theirpartners wanted to know everything,whereas they were only interested in thekey facts. Your partner may be the onewho talks the most with professionals andservice providers. There are often also keydifferences in the way that parents dealwith information.All the fathers we met said there was areal difference in the way that informationand situations are handled by each parent.“There is a difference between partnersabout when and what is discussed aboutthe child’s disability.”It is important to try and find a waythrough that you are both happy with.Talking about how each of you handlesituations is important. Remember thatall families are unique and each of youmight use different methods.Freephone helpline: 0808 808 9

Having a breakHaving some time together as a couplecan be really valuable so make use of anyhelp that might be available.For information around getting a break,ring our freephone helpline. You canalso get our guides Disabled children’sservices and Getting direct payments foryour disabled child from ourfreephone helpline.Top Tip: Have a date with your partnerevery now and then. It will be hard not totalk about the kids, but see a film, havelunch or make sure you find somethingelse to concentrate on. Time for justthe two of you is important and wortharranging, even for just a couple of hours.Relationships with your other childrenIf you are a dad with other children, youmay find you need to juggle your timeeven more.“It’s hard trying to give all the childrenequal attention.”Most families recognise that siblingsare often mature for their age and doenjoy the opportunity of being involvedwith their disabled brother or sister.However, it is important to allocate timespent doing something just with them.Also, make sure that siblings have theinformation they need to understandthe disability.“Give children the words so that they canexplain disability to their friends.”Some siblings benefit from attendinglocal siblings support groups, or a youngcarers group, where they have theopportunity to meet other children insimilar circumstances.For information about local sibling oryoung carers groups, call our freephonehelpline. You may also find our Siblingsguide useful, available free from ourfreephone helpline and our website.Top Tip: Plan times to spend with otherchildren and stick to that.Dealing with other people’s reactionsOften dealing with how other people reactto your child’s disability can be one of themost difficult issues. The best way is toapproach other people directly and talkopenly about your child having a disability.You might find that other people youwork with or socialise with do not knowmuch about disability. You might alsohave to prepare yourself for the factthat some people may try to avoid you.Remember that before your experienceas a dad of a disabled child, you mighthave felt this way too.“Two years ago I wouldn’t have knownwhat to say to other dads either.”Sometimes people will feel as thoughthey have to offer advice. Tell them whatsupport you want and this will help youto communicate with each other. Thismay make it easier for others to ‘be there’for you when they may have little, or no,experience of disability themselves.10 Fathers

Dealing with employersFor working dads, finding a balancebetween work and home life might be achallenge.As a working parent you may have alegal right to take time off in certaincircumstances. You may also be able torequest a change in your working weekto help you juggle your work and caringresponsibilities. For the purposes of theinformation below a disabled child is onewho qualifies for Disability Living Allowanceor Personal Independence Payment.Relevant employment rights can include:• parental leave• paternity leave• time off for dependents• adoption leave• flexible working.Parental leaveMany working parents have the rightto take parental leave. This is the rightto take time off to look after your childif they are under 5 or under 18 anddisabled. Parental leave is normallyunpaid but you should check yourcontract of employment in case youremployer has a more generous policy.See pull out guides on pages 23–24 formore details about parental leave.Call our freephone helpline aboutwhether you can claim any extra benefitswhilst you are on unpaid parental leave.Paternity LeaveThis is leave fathers can take after a childis born, or has been placed with them foradoption. There are two types of paternityleave – ordinary paternity leave andadditional paternity leave.Ordinary Paternity LeaveThis is for one or two weeks shortly afterthe birth or adoption of your child.To be eligible you must:• have worked for the same employer for26 weeks. The 26 weeks’ work musthave happened before week 25 of thepregnancy or by the week in whichyou are notified of being matched foradoption• be the father of the child, or themother’s husband, civil partner orcohabiting partner (same sex partnersare included)• have, or expect to have, responsibilityfor bringing up the child.Freephone helpline: 0808 808 11

You can take either one or two weeksof Ordinary Paternity Leave. This must betaken within 56 days of the baby’s birth,or 56 days of the due date if the babyis early. The leave must be continuous soyou can’t take a day here and there. Youmust tell your employer how much leaveyou want to take and when you want it tostart. You are normally expected to givethis notice 15 weeks before the baby isdue, or if this is not practicable as soon aspossible once you know you want to takeleave.Depending on your earnings, you mayqualify for Statutory Paternity Pay whilston Paternity Leave. Statutory PaternityPay is £136.78 from April 2013 or 90per cent of your earnings, whichever isless. Some employers may pay extra viacontractual pay, check your contract ofemployment.Additional Paternity LeaveIf the mother of your baby is entitledto Maternity Leave or Pay or MaternityAllowance and returns to work early, youmay be able to take some additionalleave. Normally this leave can only betaken once the baby is at least 20 weeksold. You can only apply for AdditionalPaternity Leave once the mother hasreturned to work and if she hasn’t usedup all her Statutory Maternity Leave. Youmay then be able to take the remainderof their leave period to look after thechild. Depending on your circumstances,Statutory Paternity Pay may be available.Similiar rights to Additional PaternityLeave are also available where you havejointly adopted a child, for example ifyour partner returns to work beforeFuture changesThe government plans to introducea new system of flexible parentalleave in 2015. This will allowparents to choose how they willshare the care of their child in thefirst year after birth. Employedmothers will still be entitled to 52weeks of Maternity Leave, howeverif they choose to end their MaternityLeave early the parents can thenopt to share the remaining leaveas flexible parental leave. Thegovernment also intends to create anew statutory payment for parentson flexible parental leave, with thesame qualifying rules that currentlyapply to Statutory Maternity andPaternity Pay.they have used up all of their StatutoryAdoption Leave.Time off for dependentsThis is the right to take time off work inorder to deal with an emergency, suchas your child becoming suddenly ill,or an unexpected breakdown in carearrangements. This right is available to allemployees no matter how long you havebeen in the job for. There is no statutoryright to being paid for this but checkyour contract of employment as someemployers offer a more generous policy.Flexible workingThe right to request flexible working isavailable to parents with children under17 years of age or with a disabled childunder 18. It is also available to close12 Fathers

elatives looking after a disabled adultaged 18 and over.The government has proposed extendingflexible working to all employees atsome point after January 2014. Contactour freephone helpline for furtherinformation.This is the right to apply for a change inyour working pattern, which may be towork from home, reduce the hours youwork, or change the times you work.Fathers, as well as mothers, have a rightto apply for flexible working, although anemployer can refuse the request if thereis a business case. To be eligible to makean application for flexible working you must:• have worked for the same employerfor 26 weeks prior to the applicationbeing made• not be an agency worker or member ofthe armed forces• not have made an application forflexible working in the past 12 months.Adoption LeaveThose who adopt children in the UK maybe entitled to up to 52 weeks’ AdoptionLeave. This is made up of 26 weeks ofOrdinary Adoption Leave followed by26 weeks of Additional Adoption Leave.To be eligible for Adoption Leave youmust be newly matched with a childfor adoption and have worked for youremployer for at least 26 weeks by thedate you are matched with a child.Therules are different for people adoptingfrom abroad – seek further employmentadvice on page 14.If a couple are adopting jointly, they canchoose which partner takes AdoptionLeave and which partner (male orfemale) takes Paternity Leave. If you areon adoption leave, then depending onyour earnings you may qualify forIt is important when considering flexibleworking to also look at the effects on yourmoney and income. You may earn less,but be able to claim some benefits. Moreinformation about benefits can be foundon pages 14–16 of this guide, or call ourfreephone helpline for advice.“Most people at work have been eitheroverly kind or ignored it – I’ve made apoint of bringing it up, explaining herdisability and my shock, which has madeit easier. It’s a classic ‘elephant in theroom’ situation.”Freephone helpline: 0808 808 13

Statutory Adoption Pay for the first 39weeks. From April 2013 this is paid atthe rate of £136.78 or 90 per cent ofearnings, whichever is less. There is alsothe option of taking a further 13 weeksleave, usually unpaid.Fathers can begin the leave on thedate of placement, or a fixed date upto 14 days before the expected date ofplacement. This leave is not availablewhere a child is not newly matched, forexample where a step-parent is adoptinga partner’s child.From April 2013 if your average earningsare less than £109 per week, you mayfind that you do not qualify for eitherStatutory Paternity Pay or StatutoryAdoption Pay. Seek further advice fromour helpline if this applies to you.More information about youremployment rightsYou can find out more aboutemployment rights on the GOV.UKwebsite FamiliesParents and Carers sectionTel: 0300 012 Act 2010The Act makes it unlawful to discriminateon the grounds of gender, age, maritalstatus, race, religion and belief, anddisability. The Act also makes it unlawfulfor people to be discriminated againstor harassed because they have anassociation with a disabled person. Thiscan apply to a carer or parent of adisabled person. Information and adviceis available from the Equality AdvisorySupport Service on freephone0808 800 0082 or online atwww.equalityadvisoryservice.comMoneyAs the father of a disabled child, makesure you claim all the benefits you areentitled to, to help ease some of theother pressures on family life. We haveoutlined some of these benefits on thenext three pages. For detailed adviceon the full range of benefits, call ourfreephone helpline. We employ welfarerights specialists who can advise youon any aspect of claiming benefits andtax credits.We also produce free guides with moreinformation about benefits and financialentitlements available on our website Living Allowance (DLA)DLA is the main benefit for disabledchildren. A claim can be made for eachdisabled child in your family. DLA isnot means tested, so you can claim nomatter how much income or savings youhave. If your child is awarded DLA thismay lead to an increase in any meanstestedbenefits or tax credits you get.14 Fathers

There are two parts to DLA – a carecomponent and a mobility component.Your child may be entitled to one orboth of these components. The carecomponent is for children who needextra care or supervision because of theirhealth problems. It is paid at one of threerates depending on your child’s needs. Itcan be paid from three months or frombirth if your child’s condition is terminal.Claiming DLACall our freephone helpline or downloada copy of our guide Claiming DisabilityLiving Allowance for children, whichincludes details about making a claim andwhat you might be entitled to.To maximise your chances of beingawarded DLA it is usually best to get helpwith the form from a local advice servicesuch as a Citizen’s or welfare rightsservice.In June 2013, the governmentintends to introduce a new PersonalIndependence Payment (PIP) toreplace DLA for adults aged 16-64.DLA will still remain for children agedunder 16. For more information onthese changes, call our helpline.Carer’s Allowance (CA)If your child gets the middle or highestrate of DLA care component, you or yourpartner may also be able to claim CA astheir carer. In order to qualify for CA youmust be:• caring for your child for at least 35hours per week• over 16 years of age• not treated as in full time education• if you work you must earn no morethan an earnings threshold. This iscurrently £100 per week (after takingoff certain childcare costs and otherexpenses).If neither of you are able to claim CA –perhaps because you both work and earntoo much – someone else who helps carefor your child may be able to claim instead.From June 2013 you may also be ableto claim Carer’s Allowance if you lookafter someone aged 16 or above whoqualifies for the daily living componentof the Personal Independence Paymentat any rate. Call our freephone helplinefor more information.Claiming Carer’s AllowanceCA cannot be paid at the same time asIncapacity Benefit, Maternity Allowance,bereavement benefits, contributoryEmployment and Support Allowance,contribution-based Jobseeker’s Allowanceor the State Retirement Pension. But aclaim for CA may still be worthwhile evenif it cannot be paid, since it can help youto qualify for some means-tested benefits.If you are out of workIf neither you or your partner work, or ifyou have low earnings, you may be ableto claim certain means-tested benefitssuch as Income Support or incomebasedJobseeker’s Allowance. NormallyFreephone helpline: 0808 808 15

WTC can be claimed by some families inwork on relatively low incomes. Contactour helpline to see if you cannot claim these benefits if youwork more than 16 hours a week, butsome carers can claim Income Supportregardless of their hours. These benefitscan include help with mortgage interestpayments after a waiting period. Youmay also need advice on protectingyour National Insurance record. Call ourfreephone helpline for further help.If you are on a low income and pay rentyou may also be able to claim HousingBenefit. This can be claimed regardlessof whether you are working or notalthough your income will affect theamount of help you get.From October 2013, the governmentplans to introduce a new UniversalCredit to replace all the currentmeans tested benefits and tax creditsfor people of working age. For up todate information, contact our helpline.Tax creditsThere are two types of tax credit. Child TaxCredit (CTC) and Working Tax Credit (WTC)CTC can be claimed by anyone with adependent child whether they work ornot. You may get a higher amount of CTCif you have a child with a disability.DebtSometimes the additional costs involvedin looking after a disabled child cancontribute to financial problems. NationalDebt Helpline offers free specialisedadvice if you are struggling to manage.National Debt HelplineFreephone: 0808 808 on where you live ourfreephone helpline may also be able torefer you to a local debt project for faceto face advice. The helpline can alsoprovide details of charitable trusts thatmay be able to offer financial assistance.Support and advice for youAs a dad of a disabled child, you mayhave found it difficult to access supportwhen you felt you needed it most, orit might have come in ways other thanthose you expected.Support from professionalsSometimes there is a key professionalwho can open the door to lots ofinformation or contacts.Contact a Family has trained andexperienced parent advisers and volunteerparent representatives who can help. Callour freephone helpline to find out aboutlocal contacts and support.16 Fathers

“I couldn’t manage withoutgrandparents. Families canreally help if you are luckyenough.”Support in the familySupport and understanding from otherfamily members such as grandparentscan be a lifeline. Emotional support canhelp you feel understood. Practical helpcan create time to deal with essentials oropportunities to spend time together withyour partner.Other fathers can feel disappointedby the lack of help they receive. It isn’talways easy for family members to knowwhat to do or how to help and it may feelthat you have to support them. It’s okayto seek advice from others about this.Contact a Family produces specific guidessuch as Grandparents and Siblings –you might find these useful for yourother family members. Free copies areavailable from our freephone helpline, ordownload them from our website.Contact with other dadsYou may find it helpful to get informationfrom others who have been in the samesituation. A support group or nationalorganisation which specialises in aparticular condition is a good place tostart. Call our freephone helpline fordetails of support groups.“You need local support from peoplewho ‘get it’ – only parents who are in thesame situation can really understand.”“I had a guy at work that had a childwith a disability but not the same one asmy child. He offered support and said it’snot all doom and gloom.”“Groups about conditions are veryimportant. The Down’s SyndromeAssociation gave us all the basicinformation we needed. You need onecentre where you can get everything from.”“Both mums and dads can join supportgroups – they can be a real opportunityfor dads.”Similarly, support groups don’t have tobe focused just on sitting and talking. Twodads told us about a football team theyhave set up for their children. This hasa double advantage – the children getaccess to sport and whilst they are playing,their parents get to talk to each other.Talking and advice servicesYou might find a professional counsellingservice helpful. Your GP should be ableto tell you about any local services. Someemployers also have a confidentialcounselling scheme for employees, seegeneral resources on page 21.Setting up a dads groupIf you are thinking of starting your owngroup for fathers or are trying to make anexisting group more accessible to dads,Contact a Family produce a series ofguides with information about setting up asupport group. It also has a section calledFreephone helpline: 0808 808 17

Reaching out to fathers which containsideas on how to include fathers in localand national support groups. You candownload it from our website or requestit for free from our freephone helpline.You can also get help and support toset up a fathers support group from ourdedicated officer and get linked in withour Local Groups Network. Contact detailsare on our website.When you don’t live withyour childThis next section looks specifically atsome of the legal and practical issues thatdads may face if they live apart from theirchildren. It includes information on:• maintaining contact with your children• dealing with disputes and familymediation• getting legal advice about the ways ofending a relationship• financial issues such as child supportand changes in benefit entitlements.Maintaining contact with childrenLiving apart from your children meansthat it will be necessary to agree contactarrangements with your former partner. Itis often best if both parents can discussand agree appropriate arrangementsinformally. This may need a trial periodto try out arrangements before settlingon something more permanent. Wherean agreement can’t be made, it may benecessary to consider taking legal advice.Legally, a person with parental responsibilitycannot be denied contact with their childwithout the intervention of the courts.Parental responsibilityThe law is different depending onwhether you are, or were, married toyour partner. The law presumes marriedparents both have parental responsibility(PR). Unmarried mothers have parentalresponsibility, but not all unmarriedfathers do. If you are an unmarried fatheryou can get parental responsibility, forexample by entering into a parentalresponsibility agreement with the motherof your children or by a court order. A civilpartner or member of a same-sex couplecan also get PR in this way.Family mediationFamily mediation services help separatingor divorcing couples to resolve disputesand reach their own decisions on specificissues; particularly matters involvingthe children of a relationship. This canbe a helpful service to use when goingthrough the difficulty of a relationshipseparation. They can also help withdisputes around finance and property.Although often helpful, mediation is nota substitute for legal advice. Services varyfrom area to area, and there may be afee (although help from publicly-fundedlegal services might be available).Family and tax credits when arelationship has endedIf you are in receipt of benefits or taxcredits seek advice immediately followingthe break-up of a relationship. This isbecause some benefits are assessedand paid for the whole family, and achange in the family circumstances,18 Fathers

such as a person leaving the familyhome, will affect entitlement. With taxcredits you risk a fine if you do not reportwhen you stop being part of a couple.You may also risk an overpayment ofbenefits if you delay reporting a changeof circumstances, which you mayhave to pay back. Depending on yourcircumstances, you may then be eligibleto claim again as a single claimant.One father’s story“Ben has Morquio disease”“I made an effort to avoid contact withsupport groups. They were for peoplethat needed support and I certainly didn’t.I was facing up to things and planningfor the future. I was being sensible andlogical... and miserable. I didn’t feel sorryfor myself and nor did I once think, whyme?’, So therefore I was coping. I flew abanner that stated, Ben’s attitude to hisdisease would be a reflection of mine. SoI made sure that my attitude was positive.On the inside I was contorted with grief.“Ben grew. He didn’t grow quickly buthe grew. He carried on walking. Hedidn’t walk very quickly but he walked.He played football, swam, canoed androde his bike. He talked and, my word,he talked. I never expected so manyquestions. His wit and intelligenceamazed me. His reaction to his nowobvious set of disabilities made me burnwith pride. I had never figured that Benwould appear to be facing his ‘problem’so positively. I was also acutely aware thatmy grief was based on how I imaginedBen would feel about this disease, andin reality there was no way that I couldforesee how he would feel. With Benfeeling positive we could all feel positive.“I plucked up the courage and decided toattend a conference. Yes, we had heardof the conference and even seen thephotographs but have never wanted togo. I really didn’t want Ben to see howthings might turn out. I didn’t want to seehow things might turn out. I did, however,want to see how research into the controlof the disease might be progressing.“We met other people with Morquiodisease; we met people with all mannerof Mucopolysaccharide (MPS) diseases.Freephone helpline: 0808 808 19

The Society for MucopolysaccharideDiseasesTel: 0845 389 organisationsFor fathers“We met parents and carers. We metspecialists. In speaking to people wefound support. I found support and onlythen realised we had always needed it.Not in any cathartic way, just to know weweren’t alone. And we weren’t. We foundhope. We found inspiration.“Ben has Morquio disease. That’s just theway it is. He has a disease. A disease thatat the moment is incurable. We are afamily. We are not your usual family. Oneof our three boys has Morquio disease.There is nothing that we can do aboutit so we mustn’t let it eat us up. We canhowever, learn to live with it. It is notalways negative.“We have all come to know Morquiodisease, but none more closely than Ben.He amazes me and I love him deeply. Iwill always look up to him.”Morquio disease is part of a group ofrare disorders called Mucopolysaccharidediseases, each caused by a differentenzyme deficiency. In most childrengrowth is restricted and some diseasescause progressive mental as well asphysical disability.BLISSFreephone helpline: 0500 618 and advice with a fatherssection offering dads advice on how to dealwith the stresses and practical difficulties ofhaving a premature or sick baby.Family LivesFreephone helpline: 0808 800 support for stepfamilies, tips onfamily life, parenting and information and support forumsfor parents of children with learningdisabilities, autism and special needs.Working FamiliesFreephone helpline: 0800 013 information and advice workingparents of disabled advice, information and support.20 Fathers

The Foundation for People withLearning DisabilitiesTel: 020 7803 resources and information for fathersand professionals working with them.Home Dad UKTel: 01938 810 support for stay-at-home dads, withan online forum.Disabled Parents Network (DPN)Tel: 0300 3300 network of disabled people whoare parents, or hope to become parents,and their families, friends and supporters.Information and resources available.Living apart/lone parentsFamilies Need FathersHelpline: 0300 0300 information on shared parentingissues arising from family breakdown andsupport to divorced and separated parents.GingerbreadFreephone helpline: 0808 802 lone parents with personalisedadvice and puts people in touch withlocal support groups.You can find supportgroups for specificdisabilities and rareconditions online inContact a Family’s medicalinformation section Rights GroupFreephone helpline: 0808 801 advice and information toparents and other family members whosechildren are involved with or require socialcare services.For professionalsFatherhood InstituteTel: 0845 634 1328www.fatherhoodinstitute.orgA research, campaigning and trainingorganisation with resources forprofessionals working with fathers.Freephone helpline: 0808 808 21

General resourcesNational DebtlineFreephone helpline Tel: 0808 808 confidential and independent advice.Offers information packs, a personalbudgeting, sample letters and debt advice.British Association for Counselling andPsychotherapy (BACP)Tel: 01455 membership organisation and charitythat sets the standards for therapistsand the general public. Has an onlinedirectory ‘find a therapist’ of registeredBACP Counsellors and Psychotherapists.Citizens AdviceTel: 0844 477 2020 (Wales)Tel: 0844 411 1444 (England) network of independent advice centres,giving advice about rights and entitlements.Use the website to find your local centre.Also has online advice and information.NHS Choices - Carers the information and advice about caringfor a disabled child, employment rightsand benefit for Work and PensionsBenefit Enquiry LineFreephone helpline: 0800 882 200Textphone: 0800 243 355Provides general information about benefits.Useful readingDifferent Dads - Fathers’ Stories ofParenting Disabled ChildrenEdited by Jill Harrison et al.Published by Jessica Kingsley Publishers(2007)Includes stories from fathers about theirexperiences in bringing up disabledchildren.Uncommon Fathers: Reflections onRaising a Child with a DisabilityEdited by Donald J MeyerPublished by Woodbine House (1995)Collection of essays by fathers who wereasked to write about their experience ofhaving a child with a disability.References1Netbuddy and Scope (2012)Dad and me: a survey of 500 fathers ofchildren with results of 500 dads of disabledchildren.Information on your rights from thegovernment.22 Fathers

Do you have parental responsibility for your child?Use this diagram to find out.START HERE:NoHave you been married to themother of your child, either at thetime she got pregnant, or after?YesIs your name on your child’s birthcertificate?YesWas your child born after 1December 2003?If in Scotland, was your child bornNoHave you got a parental responsibility(PR) agreement (written) with theNoYesYesNoHave got a parental responsibilityYesYou have parental responsibility (PR) foryour child.(This is only if you have not lost parentalresponsibility).NoYou do not have parentalresponsibility (PR) for your child.You can try to get it by writing anagreement with the mother, or bytrying to get one through court toget a PR order.To be noted:Mothers and adoptive parents (maleor female) have automatic parentalresponsibility for their own children.Step fathers, or civil partners to amother of a child, have to have:• a parental responsibility agreementwith the mother; or• a court order permission; or• have been appointed as a legalguardian of the child.

Parental leave: use this diagram to find out if you are entitledto a statutory request with your employer.START HERE:Do you have parental responsibility(PR) for your child?NoAre you self-employed, an agencyworker, contractor, or in the armedforces?(If you don’t know see our diagramon PR to check)You can have PR even if you areseparated from the child’s mother.YesNoYesCall our helpline for advice:0800 808 3555Is your child under the age of five?OROr under the age of 18 and theyget Disability Living Allowance orPersonal Independence Payment?NoYou are not entitled to a statutory request forparental leave.However, your employer may be flexible andaccommodating even if this is the case. It’sworth asking about.YesNoHave you worked for your employerfor a full year, or more?YesYou are entitled to put in astatutory request for parentalleave with your employer.You must give your employer 21days notice of when you want tobegin your parental leave.About parental leaveIf you have a disabled child, parental leave can be taken as individualdays, or week long blocks. Leave for non disabled children must betaken in blocks of at least a week.Each parent can take up to 18 weeks leave for each child. Each parentcan take this time off separately from any other parent. The maximumamount of leave that each parent can take within a year is usually fourweeks, unless your employer agrees to more generous provisions.Parental leave is usually not paid. Call the helpline on 0800 808 3555to see if you can claim any benefits while on unpaid leave.From April 2013 all eligible employees are entitled to 18 weeks parentalleave per child. If your child qualifies for DLA or Personal IndependencePayment this has to be taken before their 18th birthday, otherwise thisleave must be taken before they turn five. If your non disabled child isadopted then this leave has to be taken within five years of their adoptionor by their 18th birthday - whichever date comes first. From 2015 it isalso expected that this right to take leave will be extended up until a nondisabled child’s 18th birthday rather than their 5th birthday.

Social networkingContact a Family is on Facebookand Twitter. Join us can download podcasts fromour can watch videos on ourYouTube channel helpline: 0808 808

Getting in contactwith usFree helpline for parents and families0808 808 3555Open Mon–Fri, 9.30am–5pmAccess to over 170 a Family Head Office:209–211 City Road, London EC1V 1JNTel 020 7608 8700Fax 020 7608 8701Email informationbooklets availableThis guide is one of a seriesproduced for parents and groupsconcerned with the care of disabledchildren. Other guides include:• Understanding your child’sbehaviour (UK)• Relationships and caring for adisabled child (UK)• A guide to claiming DisabilityLiving Allowance for children (UK)• Special educational needs• Getting direct payments for adisabled child• Holidays, play and leisure (UK)A full list of Contact a Familypublications is available on request orcan be downloaded from our Office: 209–211 City Road,London EC1V 1JNRegistered Charity Number: 284912Charity registered in Scotland No. SC039169Company limited by guaranteeRegistered in England and Wales No. 1633333VAT Registration No. GB 749 3846 82® Contact a Family is a registered trade markAlthough great care has been taken in thecompilation and preparation of this guide toensure accuracy, Contact a Family cannot take anyresponsibility for any errors or omissions.The photographs in this guide do not relate to anypersonal accounts.Order code i31© Contact a Family, March 2013

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