Australian autistics locked out of advocacy group

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http://www.asan-au.org/?page_id=23

Interesting, we are going through the same thing with a government task force on autism here in Minnesota. At the last minute, some senators decided to remove from the task force the allocation for 2 persons with autism (not just 1 mind you but all that was requested). This resulted in a huge debate on the floor but the result those who had the power to make the change got what they wanted.

I however think the issue had died with the close of this years session which in a way, even with a lost year, I think may be for the best because next year, we will be ready for this again.

This idea appears to be deeply wrong, while us aspies do not have a monopoly on matters to do with us it is deeply disturbing to think of an autism & aspergers group which excludes the voice and point of view of the aspies from its board. It is interesting to note that the British society for the blind (RNIB) has a rule that its board must be at least 50 % people who are blind or partly sighted.

No group should be advocates for a a group that they don't permit to join. How would they have a bulls notion of what is needed for Aspies and Auties without letting them say what they need!?! How do they justify the stupidity of excluding those who they claim to be helping?!?!

I would have no idea how to help a blind or deaf person. I would not know their needs, I could guess but it would be better to ask the blind or deaf person what they need. Exclusion of the people whom they claim to help is utterly stupid.

This is about each of us. We have all been excluded from decisions made about us. I think it is time that organizations which represent autistics understand that we need an equal voice in determining the laws and structures which are supposed to support us.

Hi all,

I have permission to post this letter for you to read. It clarifies some of the issues regarding the lockout of members of an Australian Advocacy organization. I post with the permission of the author and for this, I thank her.

To the Convenor of A4

A post has appeared recently on the ASA forum website of the recent circumstances of locking out Steering Committee Members with an ASD.

I am writing in response to the post as a private person and member of A4 and not in the capacity being an Office Bearer of Asperger Services Australia. I am a parent of a 21 year old son and have volunteered on the Board of Management and other positions at ASA for the last 15 years.

Although I joined initially the A4 group in 2002 at the Inaugural World Autism Conference A4 has done nothing to increase the support services for my son. I think we all had face in Ms Judy Brewer Fisher to be the Convenor of the Steering Committee at the time due to her connection with the then Government and her enthusiasm to bring the attention of ASD to the then Government.

My concern is that over the last 7 years that A4, which I believed was to become a lobby group to lobby the Federal Government for services for ASD, and it appears still has not developed into a statutory entity, ie being incorporated or otherwise to become a peak body speaking on behalf of all concerned with ASD. The Steering Committee was well located to be close to Canberra and the Government sources. At the conference I attended the AGM of the then Autism Council of Australia in Melbourne and I found to my horror that they had been in existence for almost 40 years and nothing had been achieved to advance services for Autism. A group of parents were most upset that the Autism Council was ineffective to people with Autism/Asperger’s.

Since Autism NSW revamped itself and other Autism organisations, new CEO's of the respective State Autism Organisations have joined the Council now known as Australian Advisory Board on Autism Spectrum Disorders. Only invited members are allowed to join. ASA has not attempted to join this group due to the exclusion clause in their policy nor has ASA been invited to join as an incorporated body with over 700 members.

I read on the A4 website that A4 was ...."acting to complement the work of the Australian Advisory Board on Autism Spectrum Disorders"... If this is the case, is A4 associated with the Advisory Board and was it acknowledged as such? I cannot find any reference to that on the website it only shows the State Autism Organisations as members and no other organisation is part of it or associated with the Advisory Board. I can only assume that A4 is not recognised as an entity to complement the work of the Australian Advisory Board as stated on A4’s website.

I assume A4’s Steering Committee was structured by governance and accountability to its members. It would have engaged office bearers and members on the Committee. I am not aware of how many members where part of the Committee, which is my fault not taking note of the proceedings. I have never received any Minutes of any decisions to be made by A4. As an incorporated body by law it is required to work under the basic rules set down by the Office of Fair Trading and/or have a constitution.

Steering Committee Definition
A group of high-level stakeholders who are responsible for providing guidance on overall strategic direction. They do not take the place of a sponsor, but help to spread the strategic input and buy-in to a larger portion of the organization. The Steering Committee is usually made up of organizational peers, and is the combination of direct customers and indirect stakeholders.

As a member of A4, the first notice I received was on 20 May of the changes of name and changes on the Committee. IMHO the Convenor of the Steering Committee had the duty to inform the members of A4 of any upcoming name change or change of direction if this what is going on. At no time have I been informed of any changes to take place. As far as I am concerned, I am a member of A4 and I should have been informed of any changes that the Steering Committee is suggesting and it is my privilege to stay as a member or leave the membership, if A4 does not reflect my view or direction the Steering Committee is taking without my knowledge. Although I have not kept in contact with A4 I cannot recall that any of this was discussed or advised via the newsletters.

IMO A4 is an email group, where a dedicated group of volunteers have joined the Steering Committee and has taken on the task to lobby Government to support development of services for ASD, but has failed to develop the lobby group into an entity to have political clout to make services happen.

Although I read in the A4 newsletters over the years of lobbying, it seems that the Convenor was not effective and I assume that the committee members were starting to get nervous about the direction the Steering Committee was taking, if any. I am not privy to the Steering Committees disagreements, but from the Convenors email on the 20 May it must have been serious.

I am supporting all members of a Steering Committee, as I am unable to join the Committee due to my own commitments on the ASA Board of Management, but agree whole heartedly that any committee of any organisation should have representatives of people whom they represent on any Board, in this case ASD. I know personally of the calibre of expertise several ASD A4 Steering Committee members have and acknowledge their contributions made. I also acknowledge that is appears that the expulsion of a minority group has been very unprofessionally handled by the Convenor of a National Steering Committee.

As I am not aware of the Steering Committee’s governance and what rules or guide lines were in place, I would like to ask these questions:

Did any documentation exist which included clauses of appointments of steering committee members or removal of them? This procedure should have been adhered to. There must be a clause giving reference to what constitutes a quorum to remove a committee member, it must indicate the circumstance when and how and why and a member can be removed? I think these questions should be asked of the Convenor and should be provided to all members of A4 including the ones that seem to have been locked out without notice.

For A4’s Steering Committee to keep face and professionalism I urge the Convenor to release the circumstances of why a minority group has been voted out of the Steering Committee without notice. Would the Convenor also please explain to all A4 members, why A4 members were not notified of the changes to take place, ie name change and I assume new directions. We as members need to be informed of the Steering Committees intentions and make sure that the Steering Committee is a true representative of its members for Government lobbying. Having read the member notification on 20 May at this moment it seems that the Steering Committee is unworkable and it is difficult for the membership to assess the value of being a member.

I am pleased that the Convenor was able to be involved and being part of the new government initiatives supporting Early Learning for the upcoming generation and thank him for that. Due to my many years of volunteering with Asperger Services Australia and my son’s age, I am very aware that there are still no services available for young adults and adults with an ASD in Australia.

I request that A4 Steering Committee urgently supply the information to my questions above to all the A4 members so that we are informed of the proposed changes, intentions of directions and the circumstances of the minority group having been voted out without notice.

Yours sincerely
Stefanie Evans
Member of A4

Hi,

Autistics are permitted to join the organization. If you read the following, you will see strong encouragement to join. However many of our opinions were not acceptable for discussion, contrary to the advice below.

http://a4.org.au/a4/abouta4

About A4

Autism Aspergers Advocacy Australia (A4) is the national grassroots advocacy organisation for people with autism spectrum disorders including Asperger's syndrome and PDD-NOS.

A4 membership is FREE. Just register on this website.

Our website contains information that we hope people will find useful.

A4 will try to represent your views at the federal level. If there is something you want said about autism/ASD and related issues, just tell the A4 Steering Committee or A4's Convenor.

People with autism/ASD need an effective voice. A4's voice is more convincing to government if we have more members. Please join (it is free) and get your friends to join too.

A4 does not represent a particular view. It aims to represent the views of its members. Some members have contrary views about issues, in which case A4 makes it clear to Government that there are varied views.

Our activities depend entirely on the efforts of our members. A4's past achievements are due entirely to our members making it happen. A4 depends on members like you getting together (over the internet) and acting on ideas. There is a lot that has not been done yet. A4 offers enormous scope for passionate and effective people.

To date:

The Autistic members of the committee of this group have supported initiatives which promote greater understanding and services for Autistics. They have been assertive in stating dissent on information and initiatives which are perceived by them to be detrimental to promoting Autistics as a group with widely differing needs and abilities and as valued members of society.

We have been assertive in requesting that the organization be run with regard to equity, accountability and efficiency. For example, for many years autistic members have attempted to engage members of the steeering committee in preparing a constitution wihich guides the organization and decision making processes of this committee. Our efforts have been dismissed. The result is that a member of the SC (non autistic) was able to be removed by another member without consultation.

The newsletter, edited by an Autistic was frequently altered by one member of the steering committee without consultation.

These are some of the conflicts. We do not know what it was that triggered the lockout. We have never been told.

Today this email was sent out to all members except the autistics who were locked out of the steering committee email list:

Dear A4 member

Recently, the A4 Steering Committee separated due to personality differences, significantly different views and some name calling. Basically, the committee was not working.

In any case, A4 needs leadership renewal and A4 needs more push from members. It needs more members participating in the activities of the organisation, adding their energy to its advocacy. Also, A4 needs members saying what they want and how to achieve A4’s vision and mission (see http://a4.org.au/a4/visionmission).

As a first step, we ask A4 members to decide how the leadership will work. Please think about how you want A4 to run and to represent your views to government. An aim is to involve members in decisions and to use internet technology in A4 decision making. We hope the technology works and A4 members get used to using it.



To vote, go to our ‘A4 membership consult - June 2009’ (see http://a4.org.au/a4/vote/0906). Make your choices and click on ‘Submit’. Each member has one vote. You can ‘edit’ (change) it up until the closing date.

Depending on the outcome of this vote, we will ask for people to nominate for the various positions.

A4 needs more people involved in its operation. More members need to contribute for a more effective organisation. We need people to focus on a specific issue that interests them, a particular age group or an aspect of service need. If you can write a letter or meet (or phone) your local politicians, you can make a considerable difference.

So once you have voted, please think about whether you can give some time to helping A4 be more effective in achieving its vision and mission.You do not need expertise or experience … we will help you develop those. If you can give us any time, if you have enthusiasm for or an interest and want to try some systemic advocacy and lobbying governments on behalf of people with ASD, their families and associates, please consider nominating for a role in A4.

If you know someone who wants to help, please encourage them to nominate.

InJuly, A4 will ask for nomination for election to various roles in A4.Please think about what you would say (at least a couple of paragraphs) to encourage people to vote for you in an election to be part of our executive and/or leadership.

Regards,
Bob Buckley (Convenor)


For your information, to my knowledge there was no name calling by Autistics. Autistic members did however make repeated appeals for an understanding that differing opinions from all members should be respected and heard.

Furthermore, the issues members are being requested to vote on are isssues which were put forward by Autistic members many times. We were ignored or accused of not addressing important matters. Now they want members to vote on a constitution and to vote for a committee without knowing who is on the committee which represents their interests. If you are a member of A4 and disagree with this process or want more information, I suggest asking questions of the Convenor.