Guest blogs
If this is your first visit, check out the community guide. You will have to Join us or Sign in before you can post.

Community updates


• Read over some of our recent discussions and have your say!

• Upload a new profile picture and give your profile a personal touch.

• Get the latest information on issues relating to coronavirus.

Yet another cost, the journey of raising a disabled child

CharlotteGCharlotteG Member Posts: 9 Connected
edited February 3 in Guest blogs
My name is Charlotte, and my daughter Amelia has Cerebral Palsy. She is three years old and very cheeky. She loves to sing nursery rhymes and clap and dance to music. I blog occasionally about some of the joys and challenges of having a disabled child and mental health awareness.

We all know that having a child can be expensive. According to Child Poverty Action Group, the typical cost for a couple raising a child to 18 is £153,753. When I found out I was pregnant, I came up with a plan for managing costs whilst I was on maternity leave and for childcare costs when I went back to work. However, what I could not plan for was the additional costs that have come with Amelia’s additional needs from Cerebral Palsy.

 

Scope did a study in 2019 about the Disability Price Tag which found that families with disabled children face an average of £581 a month of extra costs. This would suggest that the average of raising a disabled child to 18 is an added £125,496. That would nearly double the average cost of raising a child!

In Scope’s Disability Price Tag report, they highlight three categories of additional costs most commonly experienced:
  • Specialist goods and services
  • Greater use of non-specialist goods and services
  • Higher costs for non-specialist goods and services

I want to share two examples of where we have faced additional costs due to Amelia’s disability.

Higher Costs for non-specialist goods and services

One of the costs many parents will face is childcare costs. When I went back to work after maternity leave, I found a nursery which seemed right for Amelia. At 9 months old, Amelia did not have defined additional needs in comparison to the other children in the baby room. However, as Amelia got older, she needed more support to be involved in age appropriate activities like crafts or sand play.

 

The solution offered by the nursery was to provide 1:1 support for her through the day. They said that we would need to fund this as there was no available government funding to support a child under the age of two. This doubled our nursery costs from £45 a day to £90 a day. They still struggled with her needs and we ended up moving to a different nursery who do not ask us to pay any extra for additional support. Despite this, they are a more expensive nursery and we now pay £75 a day. This is a saving to us from the other nursery, but still a considerable amount more than we had originally planned for!

Specialist Goods and Equipment

We purchased a Firefly Go To seat which is a supportive seat insert that helps Amelia to sit on chairs, in a shopping trolley and in swings. One of the reasons we bought it was so that we could use it on an airplane when we go on holiday. We had previously used it for our holiday in May last year. We had a trip to Disneyland Paris booked for September, with a different airline from our previous holiday. When we contacted the airline to inform them we would be bringing the insert, they said we could not use it as it was not on their approved list. None of the three pieces of equipment on their approved list were suitable for Amelia.


They offered to refund our flights, but obviously we still wanted to go to Disneyland, and we would have lost the money on tickets and hotel! After a lot of research, we found a car seat which was on their approved list and suitable for Amelia. The airline had to grant us a concession to use it, but they did eventually agree. We had to pay £95 for the car seat so that Amelia could use the plane ticket we had paid £75 for. That was in addition to already having purchased a specialist piece of equipment which was suitable for other airlines.

Worries about the future

I know that we are lucky that we could afford to do this, and to even have the trip to Disneyland in the first place. But I do worry about the future. There might be unexpected costs to come and if we don't have the money, the concessions we could be forced to make would have a detrimental impact on Amelia.

 

Scope’s report calls on the government to take action and reduce the impact of these additional costs on families like ours. I would also like to call on companies to take a more common-sense approach when dealing with disabled people. For example, having a consistent set of rules about what equipment is allowed on-board an airplane, so that if we must purchase something, we only have to do it once!

Charlotte blogs about some of the joys and challenges of having a disabled child and mental health awareness. You can find her blog at ARG has CP.

Do you have extra costs due to having a disabled child? What do you believe needs to be done to reduce this? Let us know in the comments below!

Replies

  • pollyanna1052pollyanna1052 Member Posts: 1,998 Disability Gamechanger
    Hi Charlotte, I know from personal experience that as an adult disabled person, it certainly does cost more to live a comfortable life.

    Over the past 2 years, my hubby and I have spent around 35k on specialist wheelchairs, a scooter, vehicle adaptations, special vehicles, house alterations etc. This has caused us to have to extend our mortgage and obtain loans.

    In our retirement we had hope for a better life!

    I think you are an amazing mum and wish you and your family the very best for the future.

    Pollsxxxx
  • jadealyssajadealyssa Community champion Posts: 63 Courageous
    He Charlotte 
    Great to read your post. As a mother my self to a 2 and a half year old with cerebral palsy I also understand your point.
    Having a disabled child does add extra living cost and makes it harder to manage. I would just like to say that all your hard work and commitment does pay off and we appreciate the little things our children with additional needs do. My physiotherapist recommended for my son, horse riding as its brilliant for children with cerebral palsy to help them build muscle tone as the movement of the horse help do this. Not sure if you already know this but it is an idea. There is also specialist horse riding centres who cater for children with disabilities and can set up personalised exercise plans to suit your needs 
    Keep doing what your doing and cherish all the little things your perfect daughter does and raising awarness cerebral palsy!
    Good luck xx
  • AlexW_ScopeAlexW_Scope Scope Team Posts: 210 Scope community team
    For people who are looking for advice, please try reading our information on funding the extra costs of disability - hope this helps!
  • CharlotteGCharlotteG Member Posts: 9 Connected
    @pollyanna1052, thank you for your kind words. You have had a lot of changes yourself that have been costly! I hope that they are all helping though and you can enjoy your retirement.
  • CharlotteGCharlotteG Member Posts: 9 Connected
    Hi @jadealyssa,, thanks for sharing your thoughts. I only know one other family in real life in similar circumstances, so I can feel like we’re the only ones sometimes! I hope that by writing about some of the things we experience other people will also realise they aren’t the only ones too!

    hippotherapy sounds interesting, I had assumed it was for older children. I’ll mention it to Amelia’s physio, as I didn’t find much local from googling!!
  • jadealyssajadealyssa Community champion Posts: 63 Courageous
    edited February 3
    Hi @CharlotteG
    Your welcome,
    Yes this is the issue. Hippotherapy starts from age 4 upwards which is really frustrating as it's amazing exercise especially with children with CP as my physio reccomended however after she said this I was really keen to get my son involved in this, but like yourself Google search didn't provide much apart from the fact they dont accept children until they are 4 minimum, so as you can imagine really frustrating.
    Swimming again as I mentioned is fantastic. I take my son at least once a week and I notice a massive difference afterward with his mobility. That being said it is difficult in the water with him due to his CP.
    Please keep me updated with physio I hope they can offer you some help.
    Much love and best wishes 
  • April2018momApril2018mom Member - under moderation Posts: 2,882 Member - under moderation
    Hello and welcome! 

    My son is also 3 years old now. He has open spina bifida. And I fully agree with you. It has been very difficult at times. Last year I had a considerable amount of trouble trying to pick a nursery for my caree. He accompanied me on trips to the local state funded mainstream nurseries and waited while I asked questions. In the end however I decided to hire a private childcare provider. I do not regret or feel bad about my decision. It was the right one for us personally. Are you claiming benefits or not? 

    Going on vacation last year was tough. But we did it. While it took some more planning, it was worth the hassle. I repeatedly emailed the airline to ask questions. And I checked if the airport would be spacious enough to accommodate a wheelchair safely. Onboard the plane, was easy enough however. I would say that the hardest part was the airport. Once we were actually flying, my partner took over. We sat in the business section of the aircraft. He entertained both kids for six hours or so. We were on a layover flight. 

    Trying to find a wheelchair was hard. I contacted NHS wheelchair services at first. Turns out they could not help me so I asked a friend on Facebook for help. After a lot of stress, my son got his first ever wheelchair. More than two years later he loves it. I use some of my earnings to pay for his wheelchair to be cleaned. Make sure to apply for benefits. 

    And I want to read that report. Our family have attended a lot of appointments since 2016. Gas costs have risen but I and my partner managed to find a couple of ways to lower them. I always go on the bus or train with my son to a appointment in London. Even for our hospital appointments in Surrey we take a bus. Or we cycle or walk if the appointment is for a doctor downtown at the local hospital.  
Sign in or join us to comment.