Fight for the Rights of Children with Verbal Dyspraxia/Apraxia

Fight for the Rights of Children with Verbal Dyspraxia/Apraxia

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Contact information, map and directions, contact form, opening hours, services, ratings, photos, videos and announcements from Fight for the Rights of Children with Verbal Dyspraxia/Apraxia, Education, Newport.

We believe children with Verbal Dyspraxia have a human right to access daily speech & language therapy funded by health authorities & special education units if needed for the entirety of school years (UN Convention on Children's Rights: Article 23.3.)

23/10/2021

What is ‘Fight for the Rights of Children with Verbal Dyspraxia/Apraxia’ (FRCVD/A)? It is simply a page set up literally in the spur of an angry moment by a dad who’d come to a painful realisation that the support for these special youngsters was below an acceptable standard. Do you relate to that? Do you feel that your boy or girl is just not getting the best support? And you just want to do something about it? If so, would you support FRCVD/A becoming a proper campaigning charity? Is it possible that parents could join in a unified front and start fighting for these children together?

27/09/2021

The doesn't know how many children there are in England with verbal . The Dept of Education admits there are no specific figures available, following a FOI request.

The Dept of Education says: "DfE does not hold figures on the number of children diagnosed with verbal dyspraxia. We publish annual figures on the number of pupils in England with different types of special educational needs but verbal dyspraxia is included within the broader category ‘Speech, language and communication needs'."

Deaf man is moved to tears when his neighbourhood learned sign language to talk to him! 14/09/2021

Deaf man is moved to tears when his neighbourhood learned sign language to talk to him!

This is how the world should really be. Come on Boris Johnson, when are you going to make sign language a compulsory second language for school children - so that those with speaking, hearing and other related issues feel included?

https://www.youtube.com/watch?v=CnL4USny6tQ

Deaf man is moved to tears when his neighbourhood learned sign language to talk to him! In this video, Muharrem was secretly filmed as he walked through his neighbourhood with his sister, Ozlem, and the people in his neighbourhood "talked" to hi...

31/08/2021

The Department of Health & Social Care has been officially unable to answer ANY* of the following questions put forward via a FOI request, about children with verbal dyspraxia. [*Yes, you read that correctly. No answers at all!]

The questions sent to the Dept of Health were:-

Children with Verbal

1. How many children are currently diagnosed with Verbal Dyspraxia in England, Wales, Scotland, and Northern Ireland?

2. Is the UK Government funding research into finding a cure for Verbal Dyspraxia or better treatments?

3. How much money was allocated by the UK Government in the 2021 to 2022 budget to help children with verbal dyspraxia?

4. Pre-pandemic support for parents of children with verbal dyspraxia was acknowledged in a parliamentary debate in 2018 to be below acceptable standards
(https://hansard.parliament.uk/commons/20180704/debates/FA01C7F7FE59419087A5643E0C9FDF87/SpeechLanguageAndCommunicationSupportForChildren?fbclid=IwAR3AuHJmPcl1sz5PtXgs-WflpKRwuiZPCmLxVomKOxY64XVecQBMgk35Aug) and what plans does the UK Government have to increase support for children with verbal dyspraxia to beyond pre-pandemic levels of help?

5. Apart from speech & language therapy, what research is being conducted into finding a cure for children with VD?

6. Why is the UK Government not funding daily speech & language therapy for children with VD, when it has been proven to be beneficial for outcomes?

7. How many special teaching facilities, for speech & language disorders, have closed in [A] primary schools and [B] secondary schools in the past five years, 2016 to 2021?

8. How many special teaching facilities, for speech & language disorders, are planned to close in [A] primary schools and [B] secondary schools in the next five years, 2021 to 2026?

9. What strategy is the UK Government implementing to check local councils are providing education for children with VD?

10. What research has been conducted by the UK to review whether it is beneficial for the mental welfare of children at Reception Class age, to travel more than five miles from home to receive specialised teaching appropriate to their special needs?

11. If no such research as above has been conducted, why does the UK Government allow councils (e.g. Monmouthshire council sends children to Newport; Barnstaple council sends children to Exeter) to send children aged 5 to STFs at a distance of more than 10 miles in either direction from their town of residence? (e.g. Abergavenny children go to Newport, 30 miles per day; Barnstaple children go to Exeter, 60 miles per day)? What studies have
been conducted to see if this has a positive or harmful effect on the psychological, educational and physical development of these child passengers, who have VD?

12. What is the UK Government's strategy to ensure children with VD, who are unable to normally access the whole curriculum, are resourced so that they can actually access the whole curriculum, in England, Wales, Scotland and Northern Ireland?

13. Is the UK Government aware that many prisoners have speech and language problems, and that intense resourcing of support services (inc. schooling facilities) for children with speech & language disorders, would have a beneficial effect on such children, and therefore result in less adult prisoners?”
_
The Dept of Health gave this response to the FOI questions: "DHSC does not hold this information. We suggest that you may wish to direct your request to the Department for Education (DfE), which may hold the information you seek. However, outside of the scope of the FOIA, you may be interested in the following information. The
National Institute for Health Research has published a number of projects on speech and language
difficulties and interventions, which can be found on
https://nihr.opendatasoft.com/explore/?sort=modified
__
Note: A FOI request asking the same questions has now been sent to the Dept of Education.

28/07/2021

Yesterday the UK Government announced £300 million to support children with special educational needs via a National Disability Strategy. It sounds a lot... but today (just 24 hours later), the Government confirmed it would set aside up to £250 million to buy a big boat.... it beggars belief.

This is a good public reaction to the £300 million figure, quoted in national media by Amanda Batten Chair of the Disabled Children’s Partnership and CEO of Contact:-

“The strategy doesn’t reflect the full lives of disabled children or their families. There is no recognition of health and care services that children and families need, how these interact with education, access to therapies and other aspects of day to day life. Once again children and families have to wait for the long delayed SEND review for more answers.

"Disabled children and their families cannot wait any longer; the government must back up its strategy now with action and investment to help families recover from the pandemic and address longstanding shortfalls in funding and provision across education, health and social care."

Speech, Language and Communication Support for Children - Wednesday 4 July 2018 - Hansard - UK Parliament 26/07/2021

Speech, Language and Communication Support for Children - Wednesday 4 July 2018 - Hansard - UK Parliament

A FOI request about children with verbal has been sent to the UK 's Dept. of Health. Some of the answers may already be in the public domain but it's important to have updated information.
_

How many children are currently diagnosed with Verbal Dyspraxia in England, Wales, Scotland, and Northern Ireland?

Is the UK Government funding research into finding a cure for Verbal Dyspraxia or better treatments?

How much money was allocated by the UK Government in the 2021 to 2022 budget to help children with verbal dyspraxia?

Pre-pandemic support for parents of children with verbal dyspraxia was acknowledged in a parliamentary debate in 2018 to be below acceptable standards (https://hansard.parliament.uk/commons/2018-07-04/debates/FA01C7F7-FE59-4190-87A5-643E0C9FDF87/SpeechLanguageAndCommunicationSupportForChildren?fbclid=IwAR3AuHJmPcl1sz5PtXgs-WflpKRwuiZPCmLxVomKOxY64XVecQBMgk35Aug) and what plans does the UK Government have to increase support for children with verbal dyspraxia to beyond pre-pandemic levels of help?

Apart from speech & language therapy, what research is being conducted into finding a cure for children with VD?

Why is the UK Government not funding daily speech & language therapy for children with VD, when it has been proven to be beneficial for outcomes?

How many special teaching facilities, for speech & language disorders, have closed in [A] primary schools and [B] secondary schools in the past five years, 2016 to 2021?

How many special teaching facilities, for speech & language disorders, are planned to close in [A] primary schools and [B] secondary schools in the next five years, 2021 to 2026?

What strategy is the UK Government implementing to check local councils are providing education for children with VD?

What research has been conducted by the UK Government to review whether it is beneficial for the mental welfare of children at Reception Class age, to travel more than five miles from home to receive specialised teaching appropriate to their special needs?

If no such research as above has been conducted, why does the UK Government allow councils (e.g. Monmouthshire council sends children to Newport; Barnstaple council sends children to Exeter) to send children aged 5 to STFs at a distance of more than 10 miles in either direction from their town of residence? (e.g. Abergavenny children go to Newport, 30 miles per day; Barnstaple children go to Exeter, 60 miles per day)? What studies have been conducted to see if this has a positive or harmful effect on the psychological, educational and physical development of these child passengers, who have VD?

What is the UK Government's strategy to ensure children with VD, who are unable to normally access the whole curriculum, are resourced so that they can actually access the whole curriculum, in England, Wales, Scotland and Northern Ireland?

Is the UK Government aware that many prisoners have speech and language problems, and that intense resourcing of support services (inc. schooling facilities) for children with speech & language disorders, would have a beneficial effect on such children, and therefore result in less adult prisoners?
_

Speech, Language and Communication Support for Children - Wednesday 4 July 2018 - Hansard - UK Parliament Hansard record of the item 'Speech, Language and Communication Support for Children' on Wednesday 4 July 2018.

22/07/2021

💙

09/07/2021

This is why we're going to fight for the children

18 years after I received my diagnosis of verbal dyspraxia/apraxia, 6 years of which I have actively been raising awareness and still there is so little understanding. I get messages all the time from people who aren’t getting the understanding and support they need. Parents messaging me about people making assumptions and comments thinking that they know better than the experts about the prognosis of the diagnosis. Children in school not getting the understanding or support they so desperately need. Teenagers/adults still searching for understanding from those around them.

For those who are still unsure:-

1. Verbal Dyspraxia/Apraxia is a neurological speech disorder.

2. Children with verbal dyspraxia/apraxia have difficulty making the precise movements required for speech but there is no evidence of nerve or muscle damage.

3. They have difficulty pronouncing individual speech sounds and sequencing sounds together in words. This makes their speech unintelligible, even to family members.

4. There is no quick fix and no cure. Children with verbal dyspraxia/apraxia will need years of intensive speech therapy to have any chance of improving their speech.

5. Learning to talk is a VERY slow process.

6. For most of us, our speech will eventually become intelligible but even then we can still have speech sound errors and word retrieval difficulties which can make our speech seem disjointed.

7. Verbal dyspraxia/apraxia can be a stand alone condition or be co-morbid with many other conditions, making no two cases exactly the same.

8. It is not known by any other name such as tongue tie, speech delay or my favourite one to date, laziness!

9. It is a life long diagnosis which evolves and presents itself differently over time.

10. It is believed that 1-2 people per 1000 live with verbal dyspraxia/apraxia.

At 20 years old I still have to fight to get my speech where it is today. I have to fight an internal battle, daily, when it come to talking to people I don’t know. So when I hear someone refer to it as just being lazy, I can’t sit and say nothing! Can you imagine how it must feel for a child working so hard to do something that comes naturally to most people to then hear someone say that they’re just being lazy. You’re just coming to terms with being different, to then hear those words from an adult who should know better is soul destroying. It is also NOT just a speech delay. It is a neurological condition. It’s like the wires in our brain are misfiring and messages from our brain to our mouth get disrupted, mixing up the messages. It can also affect our literacy, making all aspects of school life difficult. It can also affect our friendships, our self esteem and confidence. To end on a positive, living with this, fighting for our voice from such a young age, makes us strong, compassionate and understanding.

Please don’t be that family member, friend, teacher or work colleague who lacks compassion and understanding.

(A few more facts in the graphic).

04/07/2021

The Cinderella Sector

Sober reading in this Hansard ( debate on speech, language and communication support for children) report from July 2018. A massive 1.4 million children have speech, language and communication difficulties in the UK. ‘Thousands of children and families suffer needlessly’ because ‘not enough progress has been made’ in this ‘Cinderella sector’. - ‘Young people referred to mental health services are three times more likely to have SLCN’... ‘73% of parents and carers found it difficult to get help with their child’s speech, language and communication needs’.
“To sum up, if communication was given the priority it deserves, the 1 million-plus children in England who are suffering with communication problems could be helped. We should be thinking about the 7.6% whose life chances could be improved. Not addressing the issue will be a cost to society and the economy. If there are things out there that we can do to help, we must try to do them.” [MP Rebecca Pow]
Read the debate here (yes, it’s three-years old but the lack of support given to children with speech difficulties such as verbal dyspraxia is STILL a national scandal!).
https://hansard.parliament.uk/commons/2018-07-04/debates/FA01C7F7-FE59-4190-87A5-643E0C9FDF87/SpeechLanguageAndCommunicationSupportForChildren

Ministers ‘knowingly underfunding’ childcare sector in England 15/06/2021

Ministers ‘knowingly underfunding’ childcare sector in England

Evidence that the UK Government is not prioritising children's education and development. Unfortunately the article does not mention youngsters with verbal dyspraxia, who are also/equally underfunded.

https://www.theguardian.com/education/2021/jun/15/ministers-knowingly-underfunding-childcare-sector-england

Ministers ‘knowingly underfunding’ childcare sector in England Early Years Alliance investigation finds government is ‘shamelessly’ driving costs up and quality down

10/06/2021

Sir Peter Bottomley MP [pictured] has promised to keep asking the Government for extra financial help for specialist services in West Sussex, affecting children with verbal dyspraxia.

A spokeswoman for the Worthing West says: "Sir Peter Bottomley MP is aware that there are not enough resources for all in need of specialist services throughout West Sussex. To this end he and his West MP colleagues continue to press the government for additional funding. They had some success prior to the pandemic but there remains a funding problem for specialist resources which he and colleagues continue their work to address."
_

We will be mindful to watch Sir Peter's efforts for children with VD in the time ahead, and report any progress (or lack of progress) for these very special youngsters; who deserve better than this UK Government, and the national governments, are currently providing. The lack of comprehensive support by the for children with verbal dyspraxia is a countrywide scandal: no cohesive planning with local authorities; not enough funding for learning resource units, or the closure of such units, or a change in focus of such units with a one-size-fits-all approach to children with varying disabilities; and not enough funding for intensive S&L therapy, leaving 'motivated' parents struggling to fund private therapy. Children with verbal dyspraxia suffer enough already - to be ignored by the Government is an affront to their human rights.

05/06/2021

Parents of children with verbal dyspraxia/apraxia have to advocate for their children. Sadly they have no choice but to fight for the services their children so desperately need and deserve. This is down to the lack of understanding of this neurological speech disorder, how it affects those who live with it and lack of funding.

Be the ‘voice’ for your child! Keep advocating for them because if you don’t, who will?

30/05/2021

1 in 1000

Why can’t they understand what I’ve said?
It makes so much sense inside my head.
I say the words over and over again,
The effort it takes drives me insane.
The sounds get muddled, words hide away,
Most people don’t struggle to have their say.
Confusion, frustration rise from deep within,
To verbalise my feelings I can’t even begin.
So I sit in silence, hold my feelings inside,
It hurts so much, it attacks my pride.
Do I come across as stupid? Am I weak?
‘Cos I can’t do something as simple as speak.
I may struggle to do what most people can do,
But I was chosen for this, I’m one of the few.
I’m 1 in 1000, that makes me unique,
But I know one day I will learn to speak.
Verbal Dyspraxia’s the diagnosis with which I live,
But to others I know I have so much to give.

Mikeys Wish

21/05/2021

The Family Fund charity in York, whose motto alleges to be 'helping disabled children', has refused to help a boy [not pictured] with diagnosed 'severe' verbal . A spokeswoman told the family who applied for funding: "... it is only when a child meets our Child and Young Person’s Eligibility Criteria that we are able to help.
"Family Fund uses its own Child and Young Person’s Eligibility Criteria to assess whether a child is eligible for a grant. This criteria is based on a social model of ."

Verbal Dyspraxia Ireland 30/04/2021

Verbal Dyspraxia Ireland

...another story about a parent forced to fight for their child with verbal - this time in Ireland - because the support from authorities is lacking. The mother had to seek (and pay for) private help...

WHEN are governmental and health authorities going to realise that young children with VD need intensive daily therapy ASAP, instead of leaving parents in the dark, trying to fumble their way to finding the best educational solution? Paying privately for therapists with money they can't afford? These children need professional therapy every day! It is a blatant abuse of children's rights!




https://www.youtube.com/watch?v=2HksySkjJ2U

Verbal Dyspraxia Ireland My turn to talk about Charlie and his life with Verbal Dyspraxia - or Childhood Apraxia of Speech. All funds raised will go directly to this Chairyt to help ...

Lockdowns hurt child speech and language skills - report 27/04/2021

Lockdowns hurt child speech and language skills - report

What this report should also say is that it's the UK Government's lack of interest in the issue, which is also affecting children with speech & language problems - and especially no unified policy approach when it comes to youngsters with verbal dyspraxia. authorities often fail to provide proper learning resource bases in schools, leaving parents with no choice but to either relocate or travel miles each day to obtain the appropriate education in other areas.
https://www.bbc.co.uk/news/education-56889035

Lockdowns hurt child speech and language skills - report Delays to speech and language skills are a top concern for primary schools, researchers say.

10/04/2021

Children with verbal dyspraxia MUST get the right support in their school days. Authorities in the UK are failing to take this issue seriously. These children matter!

I need to open up about something. As I become more of an advocate, the more I feel like I need to tell you guys. With my Apraxia and upbringing, I was severely bullied. I’ve talked briefly about bullying, but I haven’t ever in full because I was processing the trauma it caused me. I’m still processing it to this day. The bullying got so bad in my sixth grade year that a kid would bang on my locker and classroom door, mock my speech, and make it into my speech therapy room, where he would act as he would attack me. My speech therapist did nothing about this. She allowed him to be in the room. My mom didn’t know because I couldn’t bring myself to verbalize it. The event and others have still affected me to this day, and they come back as flashbacks & unwanted memories of anything remotely similar. I want to speak out about this more, hoping a kid or teenager will read it and tell their parents what is going on at school. At times, I was too afraid to because I thought others would hurt me. But please don’t live your life in fear, you are stronger, and you will overcome any obstacle life throws at you. Please believe me when I say this. I love you guys.
Love,
Jordan Christian

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