Hi All

I have not being posting on this site for quite some time! The reason being that myself and Audrey are planning a new and exciting event to be held in the Phoenix Park on Saturday 8th September 2012.

This will be a festival and grand
celebration of disability in Ireland and the World. The venue is already booked
for that day.

We will host this event in conjunction with all of the
organisations in Ireland that act as advocates for people with disabilities and
the event is called Our Worlds United. Over 40
organisations have already ‘signed up’ to be part of this event
including Down Syndrome Ireland, Special Olympics Ireland and Fragile X.

The Dublin
event will  cater for 100,000
people in the Phoenix Park

The objectives of
the event are many with the key objectives being:

1. To raise Awareness of Disabilities and their issues.

2.       To Unite
all the Disability  representative bodies for 1 day with one voice.

3.       To ‘Normalise’ or ‘mainstream’ disability i.e.  people’s special needs should
not define them

We expect
that it will be a day to remember and a defining moment in the history of Disabilities Advocacy.

The afternoon will  host live bands (we hope to get some or all of the
following: Boyzone, Westlife, Jedward, U2) , funfairs, face painting, music,
dance and games. It will also feature Speakers and contributors from around the
globe , and celebrity actor Colin Farrell
has already agreed to be our Keynote Speaker.


Fingal Community TV (FCTV) are making a documentary about the making of the
event – and filming has already begun.

But it gets even
better! – we have spoken with Vicki Graff and Gregory
Ruzzin-both of whom are professors at Loyola Marymount University in Los
Angeles –and they suggested that we run simultaneous events in LA, South
Africa, Hong Kong, UK and Finland. Vicki has already said it will happen in LA
and is confident that South Africa will also happen. It will be truly a Global Event.

Although there is a time difference we can synchronise a huge fire works
display simultaneously around the globe at a certain time – albeit it will be
the middle of the night for some venue/venues.

The event will be the culmination of a massive media campaign across all media
channels over the next 8 months.

We have already recruited a ‘small army’ of volunteers to help make this event
happen and we have an experienced  professional event management company
in place to deliver the day in conjunction with ourselves.

Please visit our website www.ourworldsunited.org for further details.

We are currently securing financial backing for the event – and once this has been secured we can go public with the event- hopefully in the next few weeks.

If you or your organisation would like to get involved in any way with this initiative – we would be delighted to hear from you – as this is a huge undertaking and we will need as much input as possible from volunteers.

In keeping with our philosophy that there are too many organisations advocating for people with disabilities – we feel that that a lot of organisations could merge with others to become  more effective – we intend closing down this site soon after September 8th this year.

We hope that you will all attend the event – as ticket prices will be affordable – and it is not a fund raiser – but an AWARENESS raiser!

This week  I attended a meeting of the Family and Parent Council of St Michael’s House Northern Region. These meetings are very frustrating to attend as they achieve very very little.Challenging or questioning the status quo at these meetings is overtly frowned upon and dismissed. The fact that the Parent and Family Councils are in place 4 years but cannot identify even one acheivement of note in that period says it all about their usefulness. They are generally used by St Michael’s House itself to spread self promoting propaganda among the parents.

This meeting was no different. We had a presentation from acting Chief Executive  Paul Ledwidge. He retired on 31st December receiving a six figure redundnacy payment and a pension fund that will cost the tax payer many millions of euro to fund. He made much play on the fact that he was acting Chief Executive in a voluntary capacity until a replacement is found and appointed in early March - but failed to say that his annual pension is exceedingly more than twice the average industrial wage -so he can well afford to be there voluntarily. He also says that he would be working in a voluntary capacity 2 days per week for the year 2011 – saying that he didn’t want things to go pear shaped after all his hard work – a huge insult to the current management team.

He gave a presentation lamenting the Government cutbacks and the effect it was having on the Provision of Services at St Michael’s House. During the presentation he proudly announced that one of the efficiencies that had happened was that employees now had to work a full 39 hour week. He stated that over the years it became customary for employees not to work a full week – but still to be paid for it. This outrageous statement was not picked up on by anybody attending. Here we had the Chief Executive of an organisation receiving almost 100 million euro of tax payers money and some of this money was being wasted by paying dishonest employees for a full week’s work when they were not doing a full week’s work.

What a disgrace and an insult to all those who do volunteer work at St Michael’s House that others can get paid for not working. More disgracefully Management were fully aware and allowed this despicable behavior to continue. Is it any wonder that there are cutbacks. When I listened to Paul Ledwidges presentation I was disgusted at the wanton waste and weak management within the organisation that he portrayed and I would have to say that until St Michael’s House becomes more efficient – no further expenditure should be allocated to them.In fact it is time to look at whether the organisation should be restructured and maybe broken up into smaller units.

We can only hope that the New Chief Executive to be appointed will have the necessary skills and ability to properly manage an organisation that  up until now,on the above evidence has been very poorly managed.

We at My Special Needs have had a meeting with the Minister for Disability and Mental Health John Moloney re the setting up of a National Database for disability services.

This database will allow people throughout the island of Ireland to  ascertain within seconds what services are currently being provided in their area and by whom. These services could be Occupational Therapy,Physical Therapy,Speech therapy, Pre school services, primary secondary and third level educational services, training courses, respite services and so on.

This would mean that people in every village in every county in Ireland would be aware of the nearest available  service available from cradle to grave for all  people with special needs.

We are scheduled to have another meeting this month to progress the matter and the Database should be live within 6 months. We will keep you posted on progress.

Have families who rely on disability services been used as pawns? Why were they forced to take to the streets across the country yesterday , disrupting their already highly stressed lives caring for people with a disability to protest about cuts in frontline services?

Behind the scenes was a carefully orchestrated public relations battle between private companies, hired by the voluntary bodies, and government spokesmen.

On the face of it, people with a disability and their families are victims of years of inertia on the part of the Department of Health, health boards and the Health Service Executive (HSE) to ensure the vast sums paid to disability organisations are properly accounted for .

The 40-plus voluntary bodies, which received over €1bn to provide disability services this year, are failing to show proper financial transparency and have highly paid executives on their staff as well as outdated management structures.

Health authorities here have been content to hand over taxpayers’ money to these organisations for years without tackling inefficiencies that have now come to a head due to the cuts imposed this year.

The response of the Brothers in Charity was to warn that respite and other services might have to be cut while the Sisters of Charity is to impose similar reductions in service in Dublin.

Yet we know little of how these organisations are run, the level of salaries paid and what efforts have been made to follow up on a highly critical report by the Comptroller and Auditor General four years ago which called for a massive overhaul of this whole area.

It found that one leading provider of disability services got €288m in health funding without furnishing any audited accounts.

Despite this lack of transparency, the health service imposed no sanction and did not alter its level of funding.

The investigation by the taxpayers’ watchdog found poor controls generally over non-profit organisations providing services to people with a physical or mental disability.

A spokesman for the St John of God organisation at the time confirmed it was the unnamed organisation referred to in the report. It said pressure on resources meant the emphasis was put on hiring frontline workers rather than adminstrative staff. It later produced audited accounts.

The report showed that, in one year, the bodies received €877m in funding to care for 65,000 people with a physical or mental disability. Yet, in many cases, financial reporting norms were not being followed.

In one year, 25 organisations got more than €10m; another 75 got between €1m and €10m; while another 683 grants, averaging €100,000, were distributed to smaller bodies.

In 12 of the 42 cases examined, financial statements for 2003 were not on file, although the bodies concerned received €100m in funding.

Checks of annual financial statements varied. It was noted that spending on headquarter costs and overheads was not generally reported.

And remuneration packages of executives and management of non-profit organisations were not generally disclosed.

Junior Health Minister John Moloney was yesterday talking about the need for backroom savings in areas like transport services and procurement where voluntary bodies could band together to get greater value for money.

There are other key issues that need to be tackled, such as the quality of service provided by several of the voluntary organisations, and anecdotal accounts of families being afraid to question what they were receiving for fear of losing out.

There is now talk of sending auditors in to examine the accounts for these organisations in advance of the Budget.

The run up to the Budget gives both sides time to do a overdue root and branch overhaul.

- Eilish O’Regan

Irish Independent Thursday July 8th

To this end 22q11 Ireland will work together with:

• Families affected by the 22q11.2 deletion.
• Other rare chromosome disorder groups.
• National and international organisations concerned with rare chromosome disorders.
• The medical and scientific community.
• Educational institutions.
• Government bodies.

Their Website is www.22q11ireland.org and they are organising a conference

This year’s conference will be held on the

19th June 2010

in

The Best Western Ashling Hotel, Parkgate Street, Dublin 8.

Our Keynote speaker will be Donna Cutler-Landsman author of Educating the Child with Velo-Cardio-Facial-Syndrome.  Donna is an educator who has spent 30 years in the classroom teaching children in grades 5 through 8.  She has also served as a co-operating teacher with the School of Education, University of Wisconsin-Madison for 15 years and as an educational consultant for issues related to the special education needs of children with Velo-Cardio-Facial-Syndrome/22q11 Deletion Syndrome.  She is a past president of the VCFS Educational Foundation and a popular speaker on issues related to VCFS/22q11 and education throughout the United States and abroad.

Please log on to www.22q11ireland.org for more details