There has been much activity in Northern Ireland regarding the proposed Autism Bill. Among other things, the Autism Bill proposes to amend the Disability Discrimination Act regarding autism and to change the description of what autism is or is not. (ALARM BELLS!)
The Bill passed its second reading in the legislature (Stormont) on 7 December 2010. ( You can read the proceedings of the 2nd reading of the bill here: http://www.niassembly.gov.uk/record/reports2010/101207.htm (watch it live here: http://news.bbc.co.uk/democracylive/hi/search?q=autism+17+december+2010&type=media ) (Scroll down to 7 December 2010 and 13 January 2011)
Relentless lobbying by one charity in particular, (Autism NI/Autism Ulster/PAL/) has resulted in every MLA now knowing a little bit more about autism than s/he did last year.
To the uninitiated and to general 'do-gooders' out there, enshrining the rights of persons with an ASD, under law, sounds like it would be a good thing, unless, of course, you are person with cerebal palsy, multiple sclerosis or Down Syndrome. You would be forgiven for asking, 'hey, where is my bill?' (Well, don't worry, if this bill passes into law, your advocacy groups will be following suit for their own legislation and rightly so!)
Persons with a diagnosis of ASD in Northern Ireland are already classified as having a 'disability'. Their rights are already protected under the Disability Discrimination Act (DDA).
Relentless lobbying by one charity in particular, (Autism NI/Autism Ulster/PAL/) has resulted in every MLA now knowing a little bit more about autism than s/he did last year.
To the uninitiated and to general 'do-gooders' out there, enshrining the rights of persons with an ASD, under law, sounds like it would be a good thing, unless, of course, you are person with cerebal palsy, multiple sclerosis or Down Syndrome. You would be forgiven for asking, 'hey, where is my bill?' (Well, don't worry, if this bill passes into law, your advocacy groups will be following suit for their own legislation and rightly so!)
Persons with a diagnosis of ASD in Northern Ireland are already classified as having a 'disability'. Their rights are already protected under the Disability Discrimination Act (DDA).
An Autism Act won't magically change the hearts and minds of those, who prior to such an Act happily bent the rules. An Autism Act won't legislate away the past 'wrongs' and the past 'mistakes', and it won't correct yesterday. Quite simply, an Autism Act won't clean up what has been the biggest problem in Northern Ireland, that of people in high places not working together and passing the buck where our kids are concerned.
We can legislate all we want, but unless the individuals who are paid to work with and for our children actually start working together and come out of their 'silos' nothing much will be achieved. This was made clear as a major problem regarding the Scottish Autism Bill. How is an Act going to enforce cooperation? It won't. The Scottish Bill for an Autism Act failed miserably last week. The Scottish situation compared to Northern Ireland is very similar. The Scottish Bill idea was instigated by basically one person, Hugh O'Donnell, MSP, backed by the National Autistic Society. It failed by votes of over 100 to 5. Last September an Autism Strategy was introduced for Scotland and it wasnt felt that legislation could add anything to that strategy. Actually the Scottish strategy was and remains woefully inadequate but it was felt legislation would make things even worse. See here for transcript of the Scottish debate which took place on 12 January 2011.
We can legislate all we want, but unless the individuals who are paid to work with and for our children actually start working together and come out of their 'silos' nothing much will be achieved. This was made clear as a major problem regarding the Scottish Autism Bill. How is an Act going to enforce cooperation? It won't. The Scottish Bill for an Autism Act failed miserably last week. The Scottish situation compared to Northern Ireland is very similar. The Scottish Bill idea was instigated by basically one person, Hugh O'Donnell, MSP, backed by the National Autistic Society. It failed by votes of over 100 to 5. Last September an Autism Strategy was introduced for Scotland and it wasnt felt that legislation could add anything to that strategy. Actually the Scottish strategy was and remains woefully inadequate but it was felt legislation would make things even worse. See here for transcript of the Scottish debate which took place on 12 January 2011.
Here are some of the dangers we face with autism legislation here in Northern Ireland. As a parent, I do not subscribe to 'getting all I can just for my child'. If we just take and not worry about others, we all lose out which is why I believe there is a grave danger our scarce and diminishing public resources would be concentrated by an autism act (how much is it going to cost? anyone?) and that this may seriously disadvantage others and pit parents against parents, families against families. There is an inherent danger that society will come to dislike us and our children!
An Autism Act would set our child as 'more deserving' in his or her disability. Our kids are already ostracised and isolated. We don't need to risk society disliking them and us because of a perception that we are 'getting it all' to the exclusion of others. If you are a parent of a child with autism and think your life is difficult and that no one understands your family or your child, try and think of those parents out there whose children have very rare diseases, or genetic problems, problems that barely warrant a support group because so few people have the difficulty.
Further, if your services aren't up to scratch, it really is about time that you, the PARENT started complaining, and actively campaigning for your child with your own voices. Don't ever expect that anyone, government or voluntary will pick up the tab or the responsibility for your child. The people heading up the call for autism legislation are in paid jobs, jobs that with funding cuts are at risk of being lost. Autism legislation will create jobs, but will it create services and positive change for your child?
With the financial cuts already here, it's going to be a tough road ahead and parental advocacy, parental strength, and parental responsibility is going to be the most important thing you can do for your and for my child.
Here is a link to the draft budget, now open for consultation: http://www.northernireland.gov.uk/website_-_draft_budget.pdf. Read and weep. There is no money.
Parents, when are you going to speak up and stop charities who are interested more in your money and their own survival, than they are in your children? How much did the lobbying by AutismNI cost? If you are a member of AutismNI, it was your membership fees and fundraising that paid for all the lobbying. Why didnt you ask the organisation to lobby about what your child really needs, like evidence based early intervention, specialist schools (not special schools), effective peripatetic services, skilled-up teachers and aides, more opportunities (real opportunities) to gain employment and to live independently for adults? These are the issues that are most important.
How many of your children with autism are going to be unemployed for most of their lives?
How many will develop mental health problems? How many of your children are going to be happy as adults? Our kids eventually grow up (unless your children are already adults!) Can a parent out there tell me what is available for my young children? I don't see much. I know that I am going to have to create that myself, work for it myself.
An amendment to the DDA is NOT going to change the attitude of teachers who think that because your child has autism he or she should go to a 'special school', that he or she is really just 'mentally retarded' and always will be.
Here is a link to the draft budget, now open for consultation: http://www.northernireland.gov.uk/website_-_draft_budget.pdf. Read and weep. There is no money.
Parents, when are you going to speak up and stop charities who are interested more in your money and their own survival, than they are in your children? How much did the lobbying by AutismNI cost? If you are a member of AutismNI, it was your membership fees and fundraising that paid for all the lobbying. Why didnt you ask the organisation to lobby about what your child really needs, like evidence based early intervention, specialist schools (not special schools), effective peripatetic services, skilled-up teachers and aides, more opportunities (real opportunities) to gain employment and to live independently for adults? These are the issues that are most important.
How many of your children with autism are going to be unemployed for most of their lives?
How many will develop mental health problems? How many of your children are going to be happy as adults? Our kids eventually grow up (unless your children are already adults!) Can a parent out there tell me what is available for my young children? I don't see much. I know that I am going to have to create that myself, work for it myself.
An amendment to the DDA is NOT going to change the attitude of teachers who think that because your child has autism he or she should go to a 'special school', that he or she is really just 'mentally retarded' and always will be.
I personally would not ask or demand anything for my child that I could not ask, or demand for another child that was in need.
The Autism Bill idea has so many flaws I can't begin to count them. MLA's have just accepted as gospel what was told to them by AutismNI. AutismNI has had the same CEO for 20 years and in my opinion, I think she is probably well versed in how to play politics in Northern Ireland. Where ministers and MLA's have fallen by the way side, AutismNI was always there, always constant, using it's experience and influence. Further, each MLA is after your vote. They know this bill is going to sway voters and they want as much support from you as possible. It's hard to say 'no' to a charity professing to represent the families of children who have autism.
Yet, I have had many people contact on this blog who vigorously do NOT want autism legislation and who immediately saw the dangers such legislation would bring. These people are parents who live with autism and who know what they are talking about, who are articulate. Seems the Assembly doesn't want to listen to them. Their voices don't count.
We have had over 20 years of intransigence and of pouring money into charities (Autism NI, etc) because the government didn't want to do anything, didnt know HOW to do anything. Now along comes this Autism Bill, and its going to make everything alright? I beg to differ.
Yet, I have had many people contact on this blog who vigorously do NOT want autism legislation and who immediately saw the dangers such legislation would bring. These people are parents who live with autism and who know what they are talking about, who are articulate. Seems the Assembly doesn't want to listen to them. Their voices don't count.
We have had over 20 years of intransigence and of pouring money into charities (Autism NI, etc) because the government didn't want to do anything, didnt know HOW to do anything. Now along comes this Autism Bill, and its going to make everything alright? I beg to differ.
The Autism Bill is a case of the emperor's new clothes. It's all smoke and mirrors, it says absolutely nothing, guarantees absolutely nothing, We must carefully examine what happened in Scotland last week. Not a lot of difference between there and here except that the Scottish MSP's had the sense to figure it out. Money was the biggest issue and that's going to be the issue here too, whether we like it or not.
AutismNI, (together with the help of SDLP's Dominic Bradley, et al). MLA's and the Health Committee in general have some serious deliberations to make. I hope now, they get some rest from the lobbying so they can think straight and make the right decision.
I personally don't think the bill will pass, I do believe our MLA's have a modicum of common sense. And if they don't they certainly have sense about money. (HOW MUCH, PLEASE, HOW MUCH WILL IT COST?)
But in the unlikely and unfortunate event that it does pass, I would just like you to know beforehand, that I and so many of my parent friends and colleagues support all human beings and we believe that needs of human beings, must all be met in an equitable fashion, no one more important than the other.
You will know who to blame if this ridiculous bill passes. If you don't I will remind you after the fact. Beware Stormont, beware MLA's for the backlash should this bill pass. It will be your heads rolling when you are being hounded for hundreds of thousands, if not millions to pay for it, and for the future 'bill's' and amendments to the DDA that will follow from other charities who work with people who have a multitude of different disabilities, all equally deserving.
Should the bill pass as law we can also expect that a lot of parents out there will see that the only way to get services for their child is to convince doctors and other professionals that their child has autism or is on the autistic spectrum. I can just hear the local conversation of the disgruntled mummy whose child needs help with her speech delay. Molly says to Mary, "Molly, have you heard of autism, maybe you can get wee Janey an autism diagnosis, after all she has been known to step on her tippy toes and she does like to watch videos. Maybe you can convince her doctor that she has autism! That way you can get all the services those other kids get. Yes Mary, that's a great idea, I am going to phone the child development clinic right now!"
This Bill is not a good thing.
Watch the Scottish Education Committee debating the need of an Autism Bill. http://news.bbc.co.uk/democracylive/hi/scotland/newsid_9191000/9191238.stm
"No law or ordinance is mightier than understanding. "Plato
"No law or ordinance is mightier than understanding. "Plato
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