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Getting help with those additional costs

jason4946 Member Posts: 1 Listener

Jason, a former graphic designer is a 35-year-old full-time dad to his sons Samuel (14 months) and Alfie (5). He writes about his experience of applying for Disability Living Allowance on behalf of his youngest son.

After what we both agreed was a smooth second pregnancy, my wife, Heidi, gave birth to our son Samuel in the middle of spring. He was strong from the get-go and we took him home to meet his brother on the same day. It was only over the next few months that we realised, despite his rapid development in other areas, something wasn’t quite right. He wasn’t responding to sounds.

After countless appointments and tests Samuel was diagnosed as hearing-impaired. With the diagnosis in mind, we made the difficult decision that my wife would go back to work and I’d stay at home with Samuel. It was a decision that was met with a lot of opinions and a few that have definitely made us reconsider some of our friendships, but it made the most sense for our family.

When Samuel was around 9 months old, a health visitor mentioned Disability Living Allowance to us. We’d never applied for benefits before, but we were struggling to adjust with only one income and the additional costs associated with Samuel and travelling to his appointments and she told us it could help with the extra expenses caring for a disabled child incurs.

We were very apprehensive at first and worried his hearing loss wouldn’t be ‘serious enough’ to qualify. A friend had applied on behalf of her slightly older child who had been born blind and been declined. Among our new network of mums and dads of disabled children, we’d heard so many negative stories, we didn’t think we stood a chance. We agreed we wouldn’t get our hopes up. If we were successful, great, but we wouldn’t push it.

Man holding baby

Then the claim pack arrived, and it seemed overwhelming. So much of it seemed irrelevant and reaffirmed our belief that there was no point in even bothering. Luckily our health visitor put us in touch with Families in Focus, a local charity helping families of children with additional needs. They helped us go through the form and explained that sometimes you need to look outside the obvious. For example, our son needed a lot more comfort than a non-disabled child. We couldn’t soothe him with the sound of our voices or reassure him in the way you usually would. The forms were horrible and made us confront all the additional challenges a hearing-impaired child can face. It forced us to compare Samuel’s needs to our older son and it brought up a lot of emotion for us all.

We were shocked when just 7 weeks later we received a payment into our bank account and a few days later a letter arrived confirming Samuel had been awarded middle rate care.

Our health visitor then encouraged me to claim Carer’s Allowance. I took a while to come around to the idea and felt guilty for even considering it. I didn’t want to be paid for caring for my son, but we eventually reasoned that by doing so, we’d have extra money to provide even better care. It’s helped towards the cost of BSL lessons and access to plenty of other things.

I know we’ll have challenges down the road and I’m already dreading any fights we’ll face when Samuel’s reassessed, but our journey so far has been really smooth and I hope this blog will encourage parents who are reluctant to apply for DLA to give it a go. I didn’t realise that it wasn’t means-tested and even working families could be eligible.

Need some more information about applying for Disability Living Allowance? Check out Scope’s advice and support page here.

How have you found the process of applying for DLA? Were you hesitant to claim? Are you going through it now?


  • Ami2301
    Ami2301 Member, Community Co-Production Group Posts: 7,945 Disability Gamechanger
    Thank you for sharing @jason4946 :) I can definitely relate to you when you expressed that you felt guilty for claiming, I feel guilty for claiming PIP and having a straightforward and positive experience with it. Here on the community we read so many stories of negative experiences so it's always refreshing to read a positive experience. I wish you and your family all the best for the future! :)
    Disability Gamechanger - 2019
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,555 Disability Gamechanger
    Hi @jason4946, thank you for taking the time to share this experience with us all. I'm so glad you have been able to access the support you are entitled to. Wishing you and your family all the best. I hope the BSL lessons go well! :)

  • Ails
    Ails Member Posts: 2,256 Disability Gamechanger
    Thank you for sharing your story with us @jason4946.  A really interesting read and I'm sure a lot of parents with disabled children will be encouraged to apply for PIP by this.  I'm glad to hear that you are getting this financial support for Samuel and hope things are going well for you all.  All the best.  :smile:
    Winner of the Scope New Volunteer Award 2019.   :)
  • April2018mom
    April2018mom Posts: 2,868 Connected
    This is so true!
    DLA has been a lifesaver seriously. I was initally reluctant to claim but I am pleased I did so. Our social worker is amazing. She told me about DFG and the family fund as well. We use the money for short vacations in the UK and to cover any other costs. Raising a child with mobility issues is both challenging and easy at the same time. Thanks for sharing this with us @jason4946
  • Joanne_Alumni
    Joanne_Alumni Scope alumni Posts: 188 Pioneering
    Hi @jason4946
    It is lovely to hear about such a positive experience of claiming DLA.
    Over the years I have had many good experiences of helping people to claim what they are entitled to, but obviously, it is the always bad news that makes the headlines! 
    I hope that things continue to go well for you and your family.
  • northwestmum2
    northwestmum2 Member Posts: 55 Courageous
    I applied for DLA for my youngest child after bringing him home from hospital,he was born at 28 wks& spent 3mths in neonatal unit.came home on oxygen,was on it for almost 20 months,first i had answered form all wrong so turned down,so neo natal community nurse helped me apply correctly.Got higher rate care for his respiratory problems,then his older brother attended one of his out patient appts with me,where it was revealed by dr(he also born at 29 wks,had physio regularly)that older brother has cerebral palsy!) No one medical had ever actually told me this!so,i applied for DLA for him,but because he could 'walk&feed himself' at 6 (i had spent many hours teaching him this!) He was turned down.i assumed they must know best, so yrs went by,i tried again,he turned down.i never tried again! Meantime,younger son,moved onto middle rate care,as his breathing problems improved a bit,then he reached 12,and they decided  he 'should be able to manage' his own medication,(even though at time he was on 122 pills a week) and he could not manage his own inhalers properly,he also had a heightened hearing problem,and other underweight problems,sleep problems,behaviour issues!i felt the medics were 'missing something' as surely he should not still have all these problems.i appealed his DLA to no avail,as they just said he should be able to manage,this went on 3yrs,when it turns out,by my insisting they look properly,he has cerebral palsy,just like his brother,all his life and no one even looked for it!(which explained so many things,and why he could not 'manage' as DWP suggested.Back on the benefits treadmill, i waited till hes 16,thought he would be eligible for PIP at least,as its designed to help you be independent isnt it?well no they turned him down for that too! Even though i had eventually secured that for his older brother,after an appeal,(and a second review put him on higher rate daily living&standard mobility)my youngest son has exactly same CP scans/ problems as his brother,and he also has quite a few other medical problems of his own,on top,so how can one person get a benefit and 1 not?Sorry if you think you just have to fill in a form& you get the benefit,but its just not true,in most cases you have to fight for it,and struggle,and if you have no one to fight for you im sure many disabled people just give up trying(as i did,applying for my son when he was younger)these young people should NOT have to 'prove how disabled 'they are,as they do now,on these forms,or to DWP,it should be paid automatically when they give medical info,as these benefits were surely intended to help them live a more independant life,yet theyre made to feel like theyre asking for handouts,as though theyre not entitled,as though they have to 'perform' at these assessments,for the DWP assessors! Its not fair on them,or us as parents!things MUST change!!
  • northwestmum2
    northwestmum2 Member Posts: 55 Courageous
    I am still awaiting a mandatory reconsideration for my youngest son as we speak,which does drag on longer than the 10 wk DWP 'guidance'! We should also have the choice to be re-assessed' instead,or move straight to appeal,if we want,not just be dragged through all this 'waiting game' that government& DWP have invented so people dont bother as its too hard a older son had extra 'disabled support credit' on his child tax credit,but that stopped at 20 yrs,even though he was in education still for almost another year,but instead of being able to leave him on that,they moved him to universal credit of his own,but instead of automatically giving him the disability allowance,hes had to fight that too,as a mandatory reconsideration,which has dragged on since january,and still not heard! Its a disgrace,disabled people(young or old) deserve better!
  • northwestmum2
    northwestmum2 Member Posts: 55 Courageous
    Family fund have been a big help,over the years,as they helped both my sons,even though only 1 was on DLA,but its not mentioned enough,It was another parent who mentioned it to me,and i asked my health visitor who said she'd never heard of them,eventually i got info about it from someone else,( another parent of a disabled child) but if my neo natal nurses had told me  about this we could have had help sooner,not a few years down the line! Also ive never heard of DFG either,no one medical ever tells you about the things you can claim.but its a minefield we need help with from the outset for our children.There should be more help from the start.
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,555 Disability Gamechanger
    Hi @northwestmum2, It sounds like you certainly have been going round in circles! I cannot imagine what it was like. I completely agree when you say that medical professionals don't actually tell you about things like Family Fund or DFG. Do you need any support with any current benefit claims?

    Thank you for sharing this. :)

  • Faz
    Faz Member Posts: 3 Listener
    I am writing on behalf of a disabled person who has carers and PA and his PIP payments stopped for over 12 mounths now. Pending.

    "I worked all my life and paid into the system. Also served our country.
    Had a serious accident fracturing vertibras, diabetic on insulin and had organ failures. The assessor came to visit because i was on 2 crutches and home bound.
    Before the disability assessor arriived i had a serious hypo-glycemea attack and was unfit to be even assessed at the time and she said an appointment can be re-arranged only to find out later that they refused in a letter that no-longer allowed help.
    The DWP were notified by my brother who works in the NHS regarding the incident and still draggimg their heals and will look into a reconsideration but have to wait 10 weeks and still NOT heard anything."

    Ps. The disabled person attempted suicide because of the negligence and psychological torcher he has faced in the last 5yrs.

    Seems like this Conservative Governments Department of work and pension should be prosecuted in the International Human Rights Court of Law for this and also Paying off the 2 Organisations to reduce the support required which includes 'Citizens Advice'
    The Austerity Measures also failed resulting in 85 extra people a day died since 2010 to date under this Conservative Government, resulting in approximately 250,000 extra deaths date of vulnerable, elderly, children and families due to negligemce, psychological torcher by assessors and corruption and bribery by  DWP ministers.
  • shebill
    shebill Member Posts: 1 Listener
    I have been Deaf in both ears for 51 yrs, since the age of 4 when I had Mumps. Although I was not diagnosed properly until the age of 11 when I went through several operations to try and help though none of them did. However at no time was my parents nor myself told there was financial support available. It wasn’t until I claimed DLA for Breast Cancer through McMillan Nurses was it brought to my attention. I am now claiming PIP but it seems my deafness is glossed over despite wearing 2 hearing aids nothing much is said about it. I often wonder why the NHS didn’t bring it to our attention earlier. How much have we lost out on?


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