some sort of card

[kaycollins95]

I was wondering if anyone knows where you can get some sort of card form that says your child has aspergers. This year i have noticed a few times that on trying to get into theme parks etc and saying we have a disabled child with us, they always look at us like we are dirt whilst chelsie stands there smiling sweetly!. Also at he airport recently we had to explain why chelsie had such a humongous hand luggage bag (full of her 101 damations) and they where brilliant and gave us front seats on plane with extra leg room. But i hate having to stand there explaining whilst people are behin me gawping at us .

Any info i would be really grateful for

[Amanda32]

Hi Kay

 

Try this link from NAS.....

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=435&a=5171

 

http://www.nas.org.uk/nas/jsp/polopoly.jsp?d=522&a=6233

 

This explains about the problems that a child with Asperger's has and they have got Alert cards on Autism as well. If its not what you want im sure someone else will offer more advice.

 

Take care

Amanda <'>

Edited September 1, 2005 by Amanda32

[Tez]

Autism West Midlands have also launched an ID card. Unlike the NAS one this card has all details of the individual on a database so that it can be verified by police social services if necessary.

 

Contact details for Autism West Midlands card

[annie]

Hi Tez,

 

That's a brilliant idea.

 

Annie

[Tez]

My son's psychiatrist gave me the details because she thought that the NAS one could be abused since there is no proof that the person carrying it has an ASD. The Autism West Midlands one has a unique identifying number on each card and a telephone number to phone to verify it. The database will contain details of the person's name and address, full details of diagnosis and who diagnosed them, current medical contacts and contact numbers for a supporter.

 

It doesn't currently contain a photo but there is some campaigning being done to alter this.

Edited September 1, 2005 by Tez

[nellie]

Hi Kay,

 

Blue badge or DLA can be used as documentary proof of disability for concessions to theme parks etc.

 

 

Tez,

 

That's a great idea. Well done West Midlands!

 

Nellie xx

[kaycollins95]

Thanks a lot for your advice. I do have little cards saying 'my name is chelsie and i have aspergers etc' but i wanted something official so that i dont feel like a fraud anytime i say chelsie is disabled . Hope im not the only one who feels this way i just think its really difficult when there standing there really pleasently!!

[phasmid]

Kay, you are not alone with your thoughts on this. We have been in a similar position on many occasions. We have resorted to carrying Phas Jr's DLA book with us and have then had to 'explain' what Aspergers means. We also carry the NAS 'This young person has Aspergers' card but, as has been pointed out this is not really 'proof' and the DLA book does not give details of what it has been awarded for. It does feel demeaning to have to go through this rigmarole (sp?) every time we want to claim a concession. Add to that that Mrs P also has DLA for a medical condition that also is not obvious we then have to go through it all for her as well!!

 

Perhaps this is something that could be addressed by the issuing of an offical card from the DSS when DLA is awarded - it still leaves the problem for those who do not have DLA but do have a diagnosis. However, it would be a start! Aspergers and Autism are not alone in being 'Hidden Disabilities' there are plenty of others (I am sure you can all name some). So it isn't just an ASD issue it is a 'Disability Awareness' one. Too many organisations claim the 'disabled friendly' tag because they have ensured they have ensured access for wheelchairs (thanks - when I take my mum out in hers I appreciate it) - but, being 'wheelchair friendly' is like the tip of the disabilty iceberg in reality. There is much more to being disabled than having to use a wheelchair.

[phasmid]

In fact having committed 'thought's to Internet' I am going to e-mail a link to this thread to the Disability Rights Commision right now asking them for their thoughts on this. We'll see what they have to say about it.

[phasmid]

Done! I have asked them to come and have a look at this thread.

 

When (if???) they respond to my question I'll let everyone know what they have to say on the subject. (Hope you guys from the DRC - - are reading this!!! )

[baddad]

Hi Kay -

It's not an 'official' document, by I have found it useful to take ben's Cinema Exhibitors Concession Card around with me. It has his photo on for ID, and most places offering concessions seem to know that the cards are only given to those with a recognised disability.

Oddly, I had just commented elsewhere about the attitude to concessions offered by a nearby attraction... They gave me a concession for Ben (I as his carer got in free) on the day, but when I enquired about a season pass they advertise i was told they generally only offer concessions to those with a PHYSICAL disability, because they can't take full advantage of the facilities! I'll not bother you with my response, but I'm sure you can imagine it was quite colourful! I do plan to take them to task over it, but as the 'season' is now almost over, i'll wait until next year.

What i really 'liked' though, was the sheer lack of recognition about the inappropriateness of such a policy - just hadn't occurred to them.... I mean, could you imagine a policy on racial discrimination that didn't recognise people of mixed race parentage because they were only HALF coloured? Or a sex discrimination policy that implied it was OK to differentiate against gays or lesbians because they didn't fit either of the usual classifications

Laugh... I nearly did...

L&P

BD

[oracle]

It will be very interesting to see how the DRC respond to your mail Phasmid? I have to say sadly that at this moment in time I feel that the DRC know as little about ASD as everyone else They certainly did not appear to understand the 'inclusion' issue where children with ASD were concerned. So I will be VERY interested indeed to see how they respond?

 

Carole

[UltraMum]

We use a copy of the DLA award letter - we blanked out the bits for the amount of the award as we didn't want some nosey parker knowing what we got! We use the NAS card to 'explain' what Asperger's is, although J has HFA but no one can cope with that!

 

By the by - we went to Chester Zoo on Sunday - �12 total for my husband and son with the DLA letter, while I got in for �13 with my NUS card!

[lorryw]

I approached the DRC over an autism related issue. They simply sent me pages of blurb and didnt take my question on board at all.

Not very impressed!

[phasmid]

Well hopefully they will take the time to come and read the thread, and take on board the negative response people have had in the past when dealing with them. I will e-mail them again and again if I need to in order to illicit a response from them. They are supposed to be 'our voice' on disability issues. Therefore they should listen and take action on our behalf. They are supposed to have the clout that we, as individuals, simply don't.

 

I will make them listen!

[phasmid]

I have e-mailed them again. I will continue to do so until they reply. Below is a copy of the e-mail:

 

I am the parent of a child diagnosed with Aspergers Syndrome. My wife also has Systemic Lupus Erythimotosis. Both of these are what I term as 'hidden disablities'. Both of them have been awarded DLA and we therefore are often entitled to concessionary entry to cinema etc. However the process of obtaining these concessions is often drawn out and humiliating. As an example I would like to draw your attention to a thread on an Autistic Spectrum support group forum. The thread can be found here:

 

http://www.asd-forum.org.uk/forum/index.ph...t=0entry36580

 

If you read it you will see that the DRC comes in for a certain amount of criticism regarding your knowledge of, and approach to, Autistic Spectrum Disorder issues.

 

The incidences of ASD's are growing. The last figures I have quote in the region of 100,000 people with the condition in the UK. We are not a small band of people dealig with this on a day to day basis. This is just one issue of many that those of us with ASDs in the family have to contend with. But it is one I feel can, and indeed should, addressed quite easily. My user name for the site is 'Phasmid' and as you will see I have suggested a possible solution. I'd like the commisions thoughts on this please.

 

- Ends-

 

I WILL e-mail them again and again and again. If any one would like to add anything to future e-mails let me know. I will not let this drop until I get a response. If it is a negative one...well, I like a fight over issues like this.

[Tez]

This is an issue that is discussed on a number of boards that I go on, not necessarily ASD related. If the DRC do look they might like to look at this link also.

 

Handling invisible disabilities

[oracle]

I really do think that more people should follow your example Phasmid. I know that my group Autism-in-Mind were snowed under with mails from parents after the DRC Briefing on Disabled Children and Education was made public.

 

Parents felt that the DRC were saying that inclusion can work for all children if enough effort is made on behalf of the schools and LEA. There was no mention at all that for some children with ASD, no matter how much effort is made, please do not all laugh together here, for some children 'their' disability will prevent them from being included. They just do not appear to realise that placing a child unable to understand non-verbal communication and with limited comprehension into a mainstream setting is cruel. Surely inclusion is about a child feeling included and not alienated?

 

Many parents told AIM that they are no longer happy for the DRC to speak on their behalf until they can show that they have an understanding of the disability. Sadly I have to agree

 

Carole

Edited September 2, 2005 by carole

[mossgrove]

By the by - we went to Chester Zoo on Sunday - �12 total for my husband and son with the DLA letter, while I got in for �13 with my NUS card!

 

 

Not sure how close to Chester Zoo you live, (We live in Birkenhead) but the season tickets there are very good value. You can go as often as you like for 12 months. If you haven't paid on the day to get in, you can leave after an hour or two and not feel that you have wasted money. This comes in especially handy if the kids aren't coping or it starts raining. We go a lot in the winter as I love it when there aren't many people there!

 

 

Simon

[Amanda32]

I have rang the number from west midlands they are sending me an application form for the Autism card. She told me he will have a number and they have had a very good response from it.

 

Take care

Amanda

[phasmid]

Well, I got a reply from the DRC. Here it is. Comments anyone?

 

 

Dear Mr phasmid

 

Thank you for contacting the DRC Helpline with your enquiry relating to the

Disability Awareness.  I apologise for the delay in responding to your

email, this being due to the high volume of demand we experience for our

service.  I hope that this has not caused you any inconvenience.

 

The Helpline can only provide you with initial advice and information, and

what we say cannot be considered to be a statement of the position in law of

your son/daughter on whose behalf you are calling. In order to advise you

further in the future or take any other appropriate action with the issue,

if your child is under 16, we can give full advice on the issue and we do

not have to send a consent form.  If the child is over 16, we would need to

send a consent form to your son/daughter. This is to ensure that they are

aware that their issue is being discussed with us and to ensure we have

their consent to take any appropriate action. If your son/daughter is not

able to complete the consent form, we will make an adjustment to allow them

to consent in another way.

 

In answer to your email, there are several points for me to answer.  Firstly

the DRC Helpline cannot comment on any drawn up policy, this is not within

our remit.  Secondly Concessions are not covered under the DDA, it is down

to the service provider to decide what, if any concessions they wish to

make.  Thirdly DLA is not covered by the DDA, because it is under other

legislation.

 

If for any reason your son or wife is refused a service due to their

disability and as long as they meet the criteria of the definition of

disability, then the service provider could be in breach of the DDA and

would have to give a justification.  I have written the definition below.

 

In Part 1 of the DDA, the Act sets out the definition of a disability, which

an individual must meet in order to be covered under the Act.  This

definition is 'a physical or mental impairment which has a substantial and

long-term adverse effect on a person's ability to carry out normal

day-to-day activities'.

 

The effects of an impairment would need to be considered as if a person were

not taking any medication.  Also for an impairment to be considered

long-term, the effects would have to have lasted at least 12 months or are

likely to last at least 12 months or are likely to last for the rest of the

life of the person affected.

 

This definition can be further explained on the attached link, below.  I

would advise that you specifically refer to sections 5, A1, B1, C4, and C14,

as these details the individual criteria of the Definition, along with

examples of substantial adverse effects in relation to mobility.  Only the

Chair of an Employment Tribunal, or Court of Law, could determine if you

meet this criteria and therefore, have protection under the DDA.  I have

provided a link to a guidance document in relation to the definition of the

disability.

 

http://www.drc.org.uk/uploaded_files/docum...29_guidance.doc

 

Please note that the DRC can provide publications in alternative formats,

i.e., Braille, audio, diskette, etc; and ethnic languages. To order or view

a DRC publication please contact the Helpline or order online using this

link:

 

http://www.drc-gb.org/publicationsandrepor...ublications.asp

 

To respond to this email please use the links below.

 

The DRC Helpline will be unable to answer your enquiry if you have not used

one of these mailforms. This is because we need to gather as much relevant

information as possible to enable us to assist you.

 

Individuals who feel they have been discriminated against should use:

 

http://www.drc-gb.org/whatwedo/enquirydiscriminate.asp

 

For Employers, Service Providers, Education Providers and all other General

Enquiries please use:

 

http://www.drc-gb.org/whatwedo/enquirygeneral.asp

 

I hope this information is useful, however, please do not hesitate to

contact the Helpline once again if you have any further questions or queries

quoting your reference number above.

 

Kind Regards,

 

 

Advisor

DRC Helpline

 

To subscribe to our email bulletin service for monthly updates from the DRC,

including details of new publications, and legal, policy and campaign news

please click on the link below:

 

http://www.drc-gb.org/newsroom/ebulletin.asp

 

Telephone: 08457 622633

Fax: 08457 778878

Minicom: 08457 622644

Website address: www.drc-gb.org

Postal address: Disability Rights Commission Helpline

                          FREEPOST

                          MID 02164

                          Stratford upon Avon

                          CV37 9BR

 

Visit www.drc-gb.org/employment for up to date advice on success in the

workplace.

 

So, I think the next target ought to be the DLA people themselves. If anyone has a website address or an e-mail contact for them please PM me with it. I'll see what they have to say about it.

[annie]

Hi Phasmid,

 

I've just had a look on the DLA website, only contact details are for local offices or a snail mail address. I found this though

 

http://www.dwp.gov.uk/aboutus/ministers.asp

 

It's the Ministers for Works and Pensions that cover DLA. There is an e-mail address at the bottom of the page.

 

Annie

[bid]

Is it just me, but I feel uncomfortable with a card for a child containing their name...

 

I'm concerned that it could be misused, and a child with an ASD wrongly think that an adult 'knows' them legitimately if they appear to 'know' their name??

 

Just a thought...

 

Bid

[Tez]

No Bid I don't think it's just you. I'm not sure but I think that the Autism West Midlands Card only contains a number and you have to phone the administration centre to access details such as the child's name, contact details etc.

[Mother in Need]

Mmmm, I would have thought that if a child is upset and shows someone the card then might it not be reassuring for that child to be called by their first name?

I have made up a little card myself for my son, and it contains his name and address and my phonenumber, and his array of diagnoses, with a basic 'please help and understand this child' on it. I have put it in the NAS' autism alert card folder which also contains more detailed info on autism.

My problem as yet is, he does not want to show it to anyone, so how could it be used?

[Tez]

I think the mention of the child's name on the card should be a matter of parental discretion. I can see that for some children the use of their name might be reassuring, but given the naivity of many autistic children and the inability of large numbers of them to recognise faces there are inherent dangers as well.

[Kathryn]

Bid,

 

Just got my membership pack from the NAS with the card in it and the same thought crossed my mind. L has very poor facial recognition - she can't always tell a stranger from someone she ought to know, and we are always conscious of how vulnerable this makes her.

[UltraMum]

Phasmid and everyone - this has just been published:

 

Disability Discrimination Act

Consultation Document:

Guidance on matters to be taken into account in determining questions relating to the definition of disability

 

Download a copy of it from here - it's a pdf file - you may wish to right click and choose 'save target as' onto your computer.

 

The Disability Discrimination Act 1995 (?the Act?) (as amended) includes a definition of who a disabled person  is for the purposes of the Act.Only those people who are defined as disabled in accordance with the Act are entitled to the protection that the Act provides.

 

Under the Act, the Government can publish statutory guidance which provides advice on matters to be taken into account by adjudicating bodies, such as courts and tribunals, when they are determining whether a person  is a disabled person for the purposes of the Act.

 

The existing guidance was written in 1996 and is now being revised and updated. The Department for Work and Pensions is holding a consultation on the revised text to give those associated with adjudicating bodies, and other users of the guidance, the opportunity to comment on whether:

? the structure of the guidance is helpful in guiding users through the aspects which need to be considered in deciding whether a person is a disabled person for the purposes of the Act;

? the text is sufficiently clear in its explanation of how the definition operates;and

? the examples used are appropriate and useful in illustrating the related text.

 

Issued: 5 September 2005

Respond By: 31 October 2005 

Enquiries To:

Andrew Timeyin

FREEPOST RLSG-BZTB-GSBA

Disability Rights Division

Department for Work and Pensions

London

WC2N 6HT

Telephone: 020 7712 2162

Fax No: 020 7962 8647

Email: consultation-disability@dwp.gsi.gov.uk

Edited September 9, 2005 by MotherEve

[phasmid]

Thanks for the replies everyone. Mother Eve, I will e-mail the DRD with the same e-mail I sent the DRC and see what happens.

 

I can understand everybodys concerns with the cards, though only to a point. Pjas jr has a bus pass typ card already with his name and picture on it (this is a local thing due to his age not his AS). He has something similar for the youth club he attends. No doubt some of you reading this thread will have children with DLA and therefore, in some cases - but not all, may have a disabled parking badge for your child. This too will have a photo and name on it. My point being that this sort of card is already 'out there' in a different form. Therefore a card saying that this person has a registered disability would just be an extension of this. I won't let Phas Jr carry any of his cards with him when they are not needed and he knows exactly when they need to be shown and, more importantly, to whom.