Tag Archives: Disability Gamechanger

“I wanted to know that the future was going to be okay.”

Menna, mother of Cerys who was born with Down’s Syndrome, talks about the lack of support, emotional and financial from birth onwards.  

I’m Menna, I am a single parent. When I found out I was pregnant, the relationship was over. I had no support and direct family support is minimal as my family live far away.

I didn’t know that Cerys was born with Down’s Syndrome until she was ten days old. The hospital just gave me a leaflet. No-one really discussed it with me. I was in a room by myself. The midwives were fine, but they didn’t know enough about Down’s Syndrome themselves to be able to discuss it with me. There was no one able to sit down with me.

We got referred to specialists to check her hearing and heart and everything else. I felt alone, there was nothing. I was just handed this baby and left alone. Obviously, being a new parent is scary in itself, without finding out that you have a disabled child. I was just left to get on with it.

The consultant we saw said that Cerys will possibly always have the mental age of 13. That was all she said really. There was no advice about her having Down’s Syndrome. There was nothing they could really tell me.

I couldn’t see a future for her

There is no disability in our family. I didn’t know anybody with a disability. I just remember thinking, I couldn’t see a future for her.

A young girl on a bed with her head resting in her hands and smiling at the camera
A young happy Cerys

They actually gave me a DVD to watch, which was no help whatsoever. It didn’t reassure me at all. In fact, it made me feel worse. The DVD was all about young children and toddlers, nothing about the future. I wanted to see older children and adults rather than babies. I had my baby and I wanted to know that the future was going to be okay. I needed a bit of reassurance really, which I didn’t get.

I just kept plodding on

There were no local support groups. I don’t drive. It made things hard. There are no support groups at all in my area.

I just kept plodding on. I did have a close friend who had a little boy, without a disability, who were quite close. Obviously, her experiences were different to mine.

You feel a bit vulnerable. Cerys was slower with everything. Things like eating solids, I couldn’t just give her solids because she would have choked. It was quite difficult. She was probably 18 months old before she started experimenting with food. I worked that out myself.

It’s been a case of trial and error. Obviously, I had friends who had children so I learnt from them, rather than specialist advice.

There is nothing when they are babies

When Cerys was a toddler, I started to have specialist support coming out to meet her for things like physiotherapy. Probably from about nine months old. In the early years, there is nobody.

Once you get the Disability Living Allowance [this is now Personal Independence Payment] you get other support like carer support. Financially there is nothing. If you have a disabled baby, there is nothing when they are babies.

A mum holding her baby and smiling and looking at the camera
Menna holding a new born Cerys

I applied for Disability Living Allowance for her when she was a baby but got refused. They said she was no different to any other baby. Although the hospital appointments begged to differ. There was no financial support until she was three.

I was advised not to go on the internet and not google because of the wrong advice I would be given. If I needed any advice, I would go through the Down’s Syndrome Association. If I had a specific problem, they were good.

Any support you can get, grab it

In the early years you should look for help if it’s out there. That’s what I lacked. Not getting the help and support from anybody. And if there are support groups, try them.

Any support you can get, grab it with both hands. I have noticed that as my daughter has gotten older, that the support has gotten better, but I still think that they do fail parents.

Cerys is beautiful inside and out

As a teenager, Cerys is no problem whatsoever. She has her moments, like any other teenager, but she is better than any other teenager.

She is amazing. She is funny. She is beautiful inside and out. She’s caring. She’s just the most beautiful teenager you could ever meet. You get the stroppy teenager, there is none of that. She is a lovely child. She always has been.

Cerys loves dancing. She loves posing. She had a couple of photoshoots. She is beautiful. I know you are biased as a parent, but so many people have said what a beautiful girl she is. She would love to go into something like that. I am looking into her going into modelling at the moment, but I don’t want to put her on the road to being rejected. Apart from that, she would love to be a model. She is amazing.

41 percent of families aren’t offered emotional support during their child’s diagnosis and become increasingly isolated. Donate today to help us provide vital services and support for families that need it most.

Half of disabled people feel excluded from society. Join our campaign to end this inequality and become a #DisabilityGamechanger

When Leo was born deaf, it was the start of big changes in our lives

Leo was born deaf. In this blog his mother, Keighley, shares how the right support is so important to parents of disabled children to ensure their children get the best start in life.

From the moment Leo’s test came back with no response, support started that day.

It took two to four weeks before Leo was officially diagnosed as being deaf.

Considering I am profoundly deaf, you would think I would have had at least thought about the possibility of my children being born deaf. I had grown up believing my deafness was caused by childhood illness.

Leo was born deaf. From the moment the lady told us that Leo’s new born screening hearing test had come back with no response, support started that day. We were given phone numbers for support lines, direct numbers to them and leaflets explaining the next steps. Along with the reassurance that a Teacher of the Deaf (TOD) would be in touch soon to arrange a home visit. I remember thinking how stupid! He is only four weeks old, why does he need a TOD? How wrong was I?

Three ladies have supported us and helped make Leo the person he is

As well as the TOD support we have a family support worker who’s been with us since Leo was six months old.  The third person is Leo’s speech and language lady therapist who again has been involved since Leo was six months old.

Our TOD is the person we turn to when we have question’s no matter how silly they may seem. She has been there to give recommendations on simple things.  Like toys to help support Leo’s listening skills.  To celebrate all Leo’s achievements which might seem silly to other people, but she knows how important they are to us.

Our family support worker has become part of the family.  In the early days she was at our house weekly.  Supporting Leo with his listening and waiting skills he needed to complete a hearing test.  Without these skills Leo would have had to undergo testing while sedated which carries its own risk. Leo will quite happily sit and undertake testing using all the skills he has learnt.

When Leo was about two years old, his speech and language therapist observed him from a distance, getting ready to step in when she felt was needed.  Working with Leo to get him ready for when he needed his implants.

These three ladies have supported us and helped make Leo the person he is. Without them Leo wouldn’t be the confident chatty little boy he is today.  Of course, there are many more people involved in his care.

Attending that first group was a turning point for me and has changed our life.

This journey has changed me, its broken me at times emotionally and physically.  Without the support of the people mentioned I don’t think I would be where I am today which would have affected Leo and his progress.

As well as teaching Leo important skills, my concerns and worries plus my hopes and dreams for my children are listened to.

When I was nervous to attend a playgroup for deaf children for the first time, I was offered support by someone coming along with me without me having to ask. I know if I didn’t have her there that day I would have not gone.

That first group was a turning point for me and has changed our life. We have met new friends, started learning British Sign Language, and got involved in other support groups.

I have now come to terms with my new identity.  I am Keighley. I’m deaf and proud. My son will grow up never questioning his identity.

If we didn’t have the support, Leo would have started falling behind without a doubt

Writing this, I have been trying to think how we would have coped if we didn’t have the support. I truly believe we wouldn’t be informed and confident to attend meetings and say what needs to be said rather than allow people who don’t know Leo tell us what is best for him.

Support workers have listened and answered the same questions 101 times about Leo’s schooling. Stuff that we have understood at appointments is explained in simpler terms. Different people involved in Leo’s care have been brought together to make sure everyone was on the same page.

I have been given the confidence to remove Leo from the nursery he was attending after I was having doubts about Leo’s needs not being meet.  I’ve had support in attending nursery meetings and help finding a new nursery.

These examples don’t even scratch the surface of the times support has been there to help.  Leo wouldn’t be getting any of the support he gets from both of his nurseries and he would have started falling behind without a doubt.

Leo surprisingly hasn’t fallen behind in any other areas of developments

Today Leo is coming up to a year of having implants.  He wears his processors all day long and can tell us when they are not working.  His speech is developing so fast thanks to his Speech and Language Therapy and all the support he had leading up to and after his implants.

Two smiling young boys and a man playing the snow

He attends two different nurseries, one local to us. He has the best support from his Key Worker, the TOD and Family Support Worker.  They all work together to allow Leo to assess sound. He will start attending school in September which has a hearing-impaired unit. His Education Health Care Plan is being prepared and, thanks to everyone’s hard work, we have plenty of evidence for the support Leo will need in school.

Leo surprisingly hasn’t fallen behind in any other areas of developments which sadly does happen when there is no support.  To think what would happen if we were without our support workers fills me with fear.

I was shocked and horrified when I found out that we are in a minority.  Most families don’t get this support because of cuts to funding!  I can truly say the support we have received has been fantastic.

41 percent of families aren’t offered emotional support during their child’s diagnosis and become increasingly isolated. Donate today to help us provide vital services and support for families that need it most.

Half of disabled people feel excluded from society. Join our campaign to end this inequality and become a #DisabilityGamechanger

Everyone focused on the negatives, the things that were ‘wrong’

Sam is mother of nine-year Lucy who has a complex genetic condition. 

In this blog Sam talks about her journey in pregnancy to the birth of Lucy, highlighting the gap in parental support.

Sam during pregnancy
Sam during her pregnancy

I’m married to Craig and we have our daughter, Lucy.  Lucy’s our only child.  She’s now nine years old.  Lucy was born with a very rare, almost unique condition called an unbalanced translocation. One of her chromosomes is missing a little bit off the end and in its place is an extra bit of another chromosome.

Clearly somebody thought there was a problem

I had been trying to conceive after getting married for about three years with no success and went through all of the different tests that you do.

The first round of IVF was unsuccessful.  Then we paid for our second round of IVF. We succeeded. We thought, ‘Great.  That’s fantastic’.  Then at the twenty weeks scan, everything changed.  She was too small, there was not enough fluid in the womb.  I had the scans twice a week for the remainder of my pregnancy.  I also had something called Dopplers every fortnight. Basically, measuring the levels of oxygen and other things, going in to make sure that there’s no placenta lymph insufficiency. We also saw an obstetrician every week, from about 22 weeks. Clearly somebody thought there was a problem.

I had a high-risk pregnancy. When I got to 37 weeks they pushed us into having a C-Section a bit earlier than, perhaps, we should’ve done.  She was born at 5 pounds 1 ounce. I bled a lot. I was quite poorly.

I hadn’t held my baby much or seen her enough

When she came out her left leg was above her head. It was a right odd shape because of her hip dysplasia, which they still didn’t know about because they just said she was breech.  I wanted, skin-to-skin contact but I only spent about five minutes with her. They took her off to a whole different department in the hospital.  She wasn’t even, in the room next door.

A paediatrician stuck her head through the ward curtain and said, ‘I think your baby has got a genetic problem,’ and tried to go away again.  I said, ‘What do you mean, like Down’s?’ that was the only genetic condition I knew.  She said, ‘Yes, I think your baby has got Down’s Syndrome,’ and then left me.  I was on my own for about two hours after that.

In high dependency unity
Lucy in the high dependency unit.

I hadn’t held my baby much or seen her enough.  I couldn’t feel my legs because of the spinal block, but I persuaded the nurses to let me go with my mum and my husband to see my baby.  They had to wheel me to the other bit of the department.  I was so physically poorly I was sick when I got back but I was determined to see her, she was tiny but perfect.  She was in the high dependency unit (HDU).

I would’ve broken sooner had I not been able to see her

I was in hospital for five days.  To be honest I think I would’ve gone stir crazy if I’d stayed any longer in that room.  For my own sanity I came home, but having to leave her, I howled like an animal.  Coming back without your baby having gone in to have one, it’s absolutely horrendous. The worst experience of my life.  My heart and soul were 25 miles away in this hospital where Lucy was in her little cot.  Every day we’d go in to see and cuddle her.

You’re not supposed to travel, really, having had a C-Section, you’re not supposed to be in a car travelling, so I got this special scar cover for protection.  All the things I did physically were wrong in terms of healing after major surgery, but emotionally I would’ve broken sooner had I not been able to go and see her.

I just lost it

The initial diagnosis side of things came on day two.  There was a whole load of stuff going on and it wasn’t handled very well. There was no counsellor there at all. I do think that was a bit odd.

When she was born there was a paediatrician there.  He said she had ‘Dysmorphic features’ which I took to mean he thought she was funny looking.  To be told that when you’re literally high on drugs because you’ve just got the morphine flowing through you, I just lost it.  He should’ve known better, than to say that.

Sam holding baby
Sam holding Lucy

You can’t even see your child. They’re in a completely different room in a different ward.  Somebody you haven’t even met has said these things about your kid and you think maybe they’ve got it wrong. I went into, sort of, pretty much denial.

The system seems to write off your child

I know she understands what we’re saying and we understand what she wants.  I can’t describe it, really, apart from that.  Everybody who knows her loves her.  She’s a very warm personality and funny, a wicked sense of humour.  These are qualities I don’t think I saw at first because everyone focused on the negatives. Certainly nobody told me about these and we had to just find out ourselves.

That’s the point.  The real shame that at the beginning, the system seems to write off your child, particularly with learning disabilities. It’s all focused on what they’re going to be able to achieve. You know, job, marriage, that we have put categories on those as valuing, as important. It’s society that makes it difficult.

Lucy and her mum and dad on a day out
Lucy and her mum and dad on a day out

She’s just won a Triumph Over Adversity award. She got picked out of thirty in her age group in the category.  She’s just incredible.  She has this depth of soul, just having suffered so much. She has a bravery that is truly empowering to be around and a forgiveness, as well.

I really wish somebody had told me that beforehand.  ‘You are going to enjoy this kid.  Yes, it’s going to be hard work, physical hard work,’. I wish there’d been more out there saying, ‘This is an opportunity.  You, your husband, your family, your friends and everybody that comes in to contact with her will grow into better human beings because of this experience.’  I know that sounds really rather profound, but it’s genuinely true.

41 percent of families aren’t offered emotional support during their child’s diagnosis and become increasingly isolated. Become a #DisabilityGamechanger and  donate today and help us provide services for families and provide the vital support they need.

 

Our toolbox of tips that every parent of a disabled child needs daily!

The Ratcliffe Family consists of two dads, Garry and Kyle, and four kids – Haydn, Isobella, Curly and Phoebe – three of whom have a disability. Haydn has cerebral palsy and is blind in one eye, Bella has Downs Syndrome and Curtis has a number of impairments and conditions including cerebral palsy, epilepsy, global developmental delay and he is blind too.

Here Kyle and Gary, write a letter to you to help you in the journey to get a better start in life for your disabled child.

Dear Parent,

We are writing to you as two dads of four awesome kids.  Three of whom have a disability. We wanted to let you know about some of the things we have picked up over the years.  Our toolbox of tips, tricks and attitudes that every parent of a disabled child needs on a daily basis!

Tip one

Our children get to do everything that every little person should do!

Never let anyone tell you that your child “can’t” do something because of their disability.

It’s currently Half Term, and our kids are already exhausted!  It’s only Wednesday and we’ve already been punting on the river in Canterbury, pumpkin picking in Medway, Chinese buffet eating, Leeds Castle exploring and sightseeing in London.

Two adults behind four children in a London Eye Pod. Two children are in wheelchairs and three are wearing hats.
The Ratcliffe Family on the London Eye

Curtis loves the smell of the flowers, Bella loves the variety of food at the Chinese, Haydn enjoys being surrounded by different people to talk to, and Phoebe (our non-disabled daughter) gets the chance to explore and climb.

Each of our children gets something different out of every experience. Our children get to do everything that every little person should do!

Tip two

Warrior parent needs to come out every so often

Be prepared to face a side of you that you might never have seen.  Warrior parent needs to come out every so often.  When your child isn’t getting a good deal, don’t be afraid to challenge people.  Whether in a shop, during a visit to an attraction or a medical service you encounter on a regular basis.

There should never be an apology or excuse made for our children.  We always make sure they are treated equally. Good luck to any shop assistant that thinks it’s okay to show us to the disabled changing facilities in a shop, that is clearly being used as a second stock cupboard. Not acceptable.

Tip three

Start to build up a series of questions ready to challenge systems

What to do when you are at your wits end with frustration.  It will happen, regularly. Usually with people that really should know better.

Start to build up a set of questions. Use flashcards if you need to in the early days. Some questions we have found useful are:

  • “What policy does this ridiculous decision come from?”
  • “What is your complaints procedure?”
  •  “Who is your line manager?”
  • “Explain to me how this decision is in the best interests of my child?”
  • “Do you know the contact details for our local MP?”

These are all useful when challenging systems – systems that were often designed for the majority of the population  – but never designed for the people that need them the most!

Tip four

Appreciate the small things. Celebrate the smallest steps

As we are sitting here, writing this letter to you, we would like to say to you, appreciate the small things.  Celebrate the smallest of steps.  Live in the present and be thankful for every little success.

14
Curtis smiling

Yesterday, we took about 50 photos of our son, Curtis, who was having a particularly good day. Not because he had just won a football match, not because he swam a length of the swimming pool. Not even because he managed to tie his shoelaces for the first time. But because he smiled. Yes, that’s right. Curtis smiled yesterday. The most infectious, smiley smile that you could ever imagine. A smile that curled up one side of his face. A smile that said “I’m really happy today, dad”. A smile that made us smile too. It’s not the big things that matter when you have a disabled child. It is the smallest step, the greatest achievements that mean the very best.

Last tip

Worry about the things you can control

Having a disabled child will mean that there are dark days as well as light ones.  But hey, that’s parenthood!  If you have a non-disabled child, you might worry about their friendship groups as they get older. We have worries too, as parents of disabled children. All we would say is, don’t let things worry you that you can’t control.  Worry about the things you can control which is why, right now, we are off outside.  To swing on a swing, slide on a slide, to push some warm hot chocolate through a feeding tube, and hope and pray for one more sunny day.

8
The Ratcliffe family enjoying the seaside

Your sincerely

Garry and Kyle Ratcliffe

Now is the Time to be a Disability Gamechanger,  sign our petition calling for a new Minister for Disabled Children and Families.

Appoint the first ever Minister for Disabled Children and Families. This appointment would lead to improved accountability for how laws and policies affecting disabled children and their families are made. A dedicated Minister can strengthen how Government and services like the NHS work together to make sure families receive the right support.

Things like this stop me from living my life the way I want to

Bal is a post graduate student at Staffordshire University, disability activist, former President of their Student Union and has Generalised Dystomia.

In this blog Bal shares her campaign story to ensure taxi fares charge the same for all and how she helped change the law.

In 2015 I led a campaign to highlight the disgracefully high taxi fares that disabled people often face. It was stunningly successful; the law was changed, and bad practice prosecuted. But since then it appears taxi firms in my home town have blacklisted me.

Since moving out of home and becoming a student, taxi drivers have been a thorn in my side. I soon discovered that I was being charged significantly more for taxi journeys around the city than my non-wheelchair user friends, this moved me to act. I took part in undercover filming with BBC’s Inside Out which highlighted this existing national problem in a regional city setting. As a result of this, the law was changed. I then used this amended law by reporting the driver of a wheelchair accessible taxi to the local council’s Licensing department for refusing to take me to the train station. This driver was then successfully prosecuted and fined by the Magistrates Court.

A victory for wheelchair users

However, for me personally, because I was the public face of the case for the prosecution, not so much. I feel like I have been blacklisted in Stoke.  I find it impossible to book a taxi using my own name, (a task that seems to be easy for my non-disabled friends), with the taxi operators always saying that there are no available wheelchair accessible taxis when I give them my name.

Am I being paranoid? Well, when I wanted to go to the cinema with a mate, I rang to book a taxi; after being told by seven different companies that there were no wheelchair accessible taxis available I asked my friend to use her phone to try and book a taxi under a different name. She rang the first company that I had tried and they sent a vehicle straight away.

This is not a one-off event. Another example since the court case included not being able to attend a friend’s birthday meal. All the taxi companies that I called said that they had no accessible taxis available and, as I was alone, I couldn’t get anyone else to book the taxi for me. This left me with fear of missing out . On a recent night out, I was turned down by 15 taxis, despite using a small manual wheelchair that would fit in any car boot. Eventually after an hour in the cold and rain, a taxi agreed to take us.

Things like this stop me from living my life the way I want to

In a wider context taxi drivers overcharging or refusing to take people like me, prevents wheelchair users from living life with the same level of freedom as non-disabled people. Recently I was quoted £35 by one taxi driver and £10 by another on the same taxi rank, the disparity is shocking and has obvious financial implications. I have previously been quoted £55 for a 1-mile journey after a night out when the going rate for that trip is only £10 for everybody else.

Before I was involved with the court case I used taxis a lot more than I do now because they were reliable and on time and, the flexibility and convenience that they gave me was far preferable to using the bus service. However, since the court case I have had to change the way that I plan my journeys and my social life. I try not to let it stop me doing what I want to do, but in some instances, I simply have to change my plans and stay home because I have no way of getting where I want to be, especially at night. This really infuriates me as I feel I am being targeted.  I know that some people may say that I have brought this on myself, I don’t feel that I should have had to accept being discriminated against for being a wheelchair user.

Of course, I’m not alone in experiencing discrimination when travelling. Disability equality charity Scope have recently found that 40% of disabled people often experience issues or difficulties when travelling by rail in the UK and 25% of disabled people say negative attitudes from other passengers prevent them from using public transport. Although campaigning for equality has had some negative repercussions I will always continue to fight for fair and equal treatment with taxis and in all other aspects of life too.

This is a shout out to all taxi companies in Stoke on Trent, please let me know if you have got any wheelchair taxis that will be willing to take me and my friends and not overcharge us. After all I just want to be treated like everybody else.

We know there is still work to do until all disabled people enjoy equality and fairness, with transport playing a huge part in this.  We all need to work together to change society for the better.

There’s something everyone can do to be a Disability Gamechanger so get involved in the campaign today to end this inequality.

Will you be a Disability Gamechanger?

Today, Scope launches a new campaign to tackle disability inequality head on. Head of Policy, Campaigns and Public Affairs, James Taylor, tells us why it’s an issue we all need to get behind.

“Negative attitudes, poor access to support or transport, limited opportunities for work.

Disabled people tell us that these things matter. They lead to discrimination, to prejudice and to being seen as an afterthought.”

“The things that people say to you never go away. There have been times where bad attitudes have made me ask, what’s the point?” – Marie

“People with invisible impairments still struggle for people to ‘believe’ their condition is real.

On buses, trains and planes we’re often denied equal service and equal treatment.

When we want to go on a night out, the disabled toilet is often an extra storage cupboard, because we’re not thought of as customers.

Hear from some of the storytellers in this film, highlighting the barriers disabled people face in their day-to-day lives.”

The scale of the issue

“Our latest research shows how many disabled people feel and experience this.

We spoke to disabled people right across Britain to find out about their day-to-day lives – what makes them happy, what angers or frustrates them and what they want to get out of life.

We wanted to understand what equality means to disabled people today, and we wanted to start from what disabled people think and feel, and how important independence is to them.

Overwhelmingly disabled people told us they want to be independent, to have confidence and to be connected through friends, family, colleagues and communities.

Yet for too many disabled people this isn’t the case.”

“I’ve been excluded from social situations or activities due to my condition. People make assumptions about what I am able to do. It’s really frustrating.” – Shani

“Earlier this year, Opinium polled 2,000 disabled adults for Scope and found:

  • 49 per cent of disabled people said they feel excluded by society
  • Just 23 per cent said they felt valued by society
  • On top of this, only 42 per cent of disabled people believe the   UK is a good place for disabled people

These statistics make it obvious that the fight for disability equality is far from over.

Throughout the last century we’ve seen action that has led to dramatic changes in our society, but our research demonstrates that there is still a way to go until all disabled people are able to live the lives they choose free from discrimination and low expectations.

At Scope we want to change this.

Whilst we might have protection in law, at Scope we know there is still a way to go until until all disabled people can enjoy equality.”

You can read more about the research in our report, ‘Independent, Confident, Connected’.

Be a Disability Gamechanger

“We have launched our new campaign calling on all those who want to work with us to show their support for disability equality. It doesn’t matter if you’re a bus driver, a politician, a teacher or an employer. You can all make a difference.”

We can’t do it alone. We know that we are stronger as a movement, as a community and as a force for change, when we work together.

If you, like us, want to end this inequality, join our campaign today.