The petition
My daughter is 20 months old and has recently been diagnosed with congenital bilateral hip dsyplasia.This means that both hips are affected.Mia underwent an open reduction operation at the end of September and is now in a hip spica cast in a frog position with a bar inbetween.Unfortunately her right leg was unable to be operated on so after the treatment for her left hip is finished she will need to have another operation on her right hip.For each leg time spent in casts is typically around 18 weeks.This means Mia is going to be completely immobile for around 8 months and then there is the time afterwards where she will need to learn to walk again.I have tried unsuccessfully to obtain a blue badge but under current legislationshe is not eligible.
Qote-
Taken from an excerpt from the disabledpersons(badge for motor vehicles)(England)regulations 200.
"The prescribed descriptions of disabled person whom a local authority may issue a disbaled persons badge are a person who is more than 2 years old who falls withinone or more descriptions specified..."
"has a permanent and substantial disability which causes innability to walk or considerable difficulty in walking".
I have been incontact with my local MP Maria Miller who contacted Hampshire County Council on my behalf,she sent a letter they had sent to her.
Quote-
"I do sympathise with Mrs.Grindrod but regrettably I am prevented from issuing a badge by the regulations as they currently stand."Jean Frost Blue Badge team leader.
Mia is extremely heavy in the cast,she is completely immobile and needs her pushchair with us at all times.She's also very wide,50 cms at widest part.It's not possible for us to get her in and out of the car in a normal parking space.I don't wish to risk her legs being redislocated.There are not always parent spaces available and some people do abuse them.
There are many other parents/children in our position and I feel strongly that something should be done to get the Department of Transport/Government to look at their current legislation r.e the age of the child claiming,most children are walking independently by the age of 2 and also that there needs to be a temporary badge made available.If you agree with this petition please sign.Thankyou so much for your help.Helen Grindrod
Jessica is 8 months old and is currently waiting for her operation. Jessica is only affected in her left hip, but will go through the same procedure as Mia and also the same aftercare with the casts. Jessica has already been in a harness for 6 weeks, which unfortunately was unsuccessful. The procedure is a week in traction in hospital, followed by the operation.
Jessica and her family are going to face the same struggles as Mia and her family and we all need your help.
Kelli
With this in mind Helen and Kelli (the mum’s) have joined forces to try and get the current legislation changed. Not only will it hopefully benefit us, but will also benefit other children going through this. Statistics show that 1 to 2 babies in every 100 are born with development hip problems. The procedure these children go through is heart wrenching enough, let alone having to worry about having enough room to park your car. If you feel you would like to help, please sign the petition. If you would like to help further by collecting signatures then please contact us.
If you or anyone you know is in the same situation, please pass on our details as we are also looking to set up a local support group.
Thank you for your support.
To view a clip of one of the news programmes we have done and to see exactly how hard it is lifting these children in and out of a car please visit the link
http://news.bbc.co.uk/1/hi/eng...
UPDATE
During our campaign we contacted the charity mobilise who promote disabled peoples rights to get out and about.This is what they had to say
"In December 2002 The Disabled Persons Transport Advisory Committee submitted 47 recommendations to Government on improvements to the Blue Badge Scheme.
Number 6 was:
Children under two whose medical needs require the transport of bulky medical equipment at all times should be eligible.... subject to further assessment and clear definition.
The response was:
Government accepts this recommendation and will seek the earliest opportunity to amend legislation governing the scheme.
I think your daughter should be covered by this recommendation.
To date, after 4 years, government has only acted on one of the 47 recommendations and that came into effect last month and WAS NOT the one that might help your daughter."
The Departmnet of Transport were quoted by the BBC as saying ""We are going out to consultation on the question of extending the scheme to children under the age of two, along with several other issues, and hope to publish the draft regulatory package by the end of the year. Following consultation, we aim to implement the changes as soon as possible. "
four years down the line and nothing has changed.When pressed to answer when this will come about they cannot/will not give us an answer.
We have recently learnt that the Department of Transport will not recognise the casts children with hip dysplasia have to wear as"bulky,essential medical equipment"which we argue this is exactly what they are.The casts are extremely heavy,wide and render the children completely immobile.They are an essential part of the childrens treatment and recovery and cannot be removed.
We have tried and failed to talk with/correspond with the Department of Transport to get someone to clarify to us exactly what these terms mean .We have sent emails which have not been replied to and also called on numerous occasions and left messages with our questions name and contact numbers and have not had a call back.I did manage to speak with someone three days ago and was told someone would call back...we are still waiting.....
UPDATE 11/1/07
Kelli and I were invited to the House of Commons on the 9th January.There we met with Maria Miller and some other MP's(including Jeremy Hunt)to talk about our campaign.The understate secretary of Transport Gillian Merron was supposed to attend but very disappointingly didn't and said that it wasn't appropriate with all of the media attention.Despite this we both felt the meeting was positive and all of the MP's went away with action points to follow.
Maria Miller has asked for a ten minute rule bill which is where she will get to put our argument as to why the law needs changing to the backbenchers(so they are neutral).She is also asking for a debate in Westminster Hall so we are very hopeful that even though things are moving slowly they are moving forwards.
Maria Miller has tabled an Early Day Motion and so far we have got the support of 60 MP's from accross all the political parties.We still need to get as many MP's to sign this as possible so we are calling for your help again.If anyone feels strongly enough about this campaign and the issues we have raised we would like to ask that you contact your local MP's and highlight this issue and also ask them to sign the Early Day Motion.The EDM is number 413.The link to this is http://edmi.parliament.co.uk/e...
Many thanks for your continuing support.
UPDATE 23rd February 2007
Jessica has now had her operation and is currently in a hip spica cast,she will be immobilised for 24 weeks.
Mia is due to go back in for another operation on the 13th March and will then be placed back into casts.
The Department for Transport have offered us a meeting,this was four weeks ago and we are yet to get it confirmed.We have to travel to London as they can't come to us.Kelli called one of the train companies to see if they had facilities for the disabled.She was told there was an area but it was for wheelchair users only.Jessica is too small for a wheelchair.They also could not confirm that Jessica would even fit on the train.
Our campaign is going to be highlighted on BBC Watchdog on the 27th February.
We continue to apply pressure on the Department of transport/government to make true their promises made over four years ago.
The Early Day Motion now has cross party support from 69 MP's.
UPDATE 31ST mARCH 2007
Mia has had her second operation and is currently half way through another stint in a hip spica.Jessica is doing well and has a further 10 weeks in her spica.
We now have the support of 88 MP's who have signed the Early Day Motion
The Department for Transport have finally published an open consultation on the Blue Badge Scheme.This will be a public document on their website link is http://www.dft.gov.uk/consulta...
This consultation period is three months in which time consultation questions will be sent out to different charities/organisations to gather information.
Children like Mia and Jessica still won't be eligible for a badge unless we can get the spica cast onto the "bulky,essential medical equipment"list.Up until now it hasn't been included so we are busy asking for these charites help in getting it on the list.
We have been assured that the new legislation will come into effect in September 2007.This will help so many children and their families.We just hope that children with hip dysplasia will also be included.
UPDATE-4th September 2007
The open consultation has now ended.The Department for Transport have been intouch and put us in contact with the man who has been working on the amendments to the Blue Badge Scheme.He is independent and not part of the Department for Transport.Both Kelli and myself have spoken with him and we both feel very positive that children with hip dysplasia will soon be entitled to a Blue Badge.We are hoping to get the final decisions very soon.The amendments have to be presented to parliament who will then agree/disagree and then it will be published for the public.It is now 11 months since we started this campaign and we are so close to getting badges for those who are in need of them whatever their age or type of disability.
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