SA Government discriminate against Autism

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Posted on 20th April 2009 by Gerhard Pieterse aka jail4bail in Real stories about real families with Autism | Uncategorized

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I cannot sit day in and day out listening to all the bullshit  from Political Parties and Government alike. It’s time to take a stand against the discrimination against Individuals with Autism in South Africa.

More children will be diagnosed with Autism this year than with Diabetes, Cancer and AIDS combined. Current world ASD population is estimated at 67 Million people, with South Africa estimated at about 600 000  Individuals with Autism.

The Jonas Brothers supports Autism in America:

How can the South African Government ignore the epidemic?

For the last 7 years we have been playing by the rules and regulations of the Departments of Health, Social Development and Education, with very little impact. The Department of Health has negated on their commitment to take care of adults with Autism in South Africa against the grain of what the Department of Health stands  for:

In order to improve the quality of health care for everyone in the Western Cape, the Department of Health has committed itself to a long-term strategic plan called Healthcare 2010. This plan aims to reshape public health services in the Western Cape to focus on primary-level services, community-based care and preventative care.

Mission

Our mission is to improve the health of people in the Western Cape and beyond, by ensuring the provision of a balanced health care system, in partnership with stakeholders, within the context of optimal socio-economic development.

Vision

“Equal access to quality care”

The Department remains committed to the vision of providing better health care to communities. The vision of Healthcare 2010, “Equal access to quality care”, has become increasingly significant and consideration is being given to making this the vision statement of the Department as a whole. This vision statement is more consistent with the Departments central goals of accessibility, appropriateness, affordability, equity, effectiveness and efficiency.

One of our projects, named Hurdy Gurdy House has been in existence since 2001, providing a 24/7/365 home for 10 individuals on the Autism Spectrum presenting challenging and aggressive behaviour. The residents cannot be accommodated in any other environment due to the nature of thier difficulties, previously from Alexandra Hospital Psychiatric unit. The residents were moved based on the Dept. Heath’s 2010 Hospital Care plan which dictates the reduction of beds in Government psychiatric hospitals and quality of service provision which is too disgusting to even mention.

3 Years we have submitted funding applications to the Dept. Health Western Cape for financial assistance for the residential care project with very limited or no communication.  The lastest application was submitted in Febraury 2009 based on the prescribed procedure.

We submitted reams of paper conforming under the exact format, proving that we need funding to sustain the HGH project or alternatively face the closure of the project as  soon as the end of May 2009. We have been following up as a matter of urgency with no joy. Telephonic communication with 7 individual representatives passing the buck resulted in discussion with a lady by the name of Carol Dean & Pat Collis, both requested to put it forward as matter of urgency via e-mail 8  April 2009.

Dear Carol,

Thank you for taking the time for our telephonic discussion. As discussed for the last 2 years we’ve had various discussions regarding funding for Autism Western Cape. Various site visits including Mrs. Marinda Roelofse and Mr Titus and correspondence with Mrs. Pat Collis resulted into our latest application being declined.

The reality is simple, if we do not get funding from your Department we will be forced close Hurdy Gurdy House, currently under the management of Autism Western Cape. We are currently providing 24 hours residential care to 10 residents who cannot be reintegrated to any Government Psychiatric Service based on the Hospital Care Plan 2010.

The project has been running since 2001 and we cannot sustain the existence of the project on our own and parent resources in a very challenging economic environment. Parents are currently contributing R 5000 per month and we cannot increase any fees.

Should we have to close the project your Department will have to take responsibility for the said residents based on the fact that the residents present challenging and aggressive behaviour and CANNOT be incorporated into any other service.

This is a very serious matter, without at least R 300 000 financial support, we will have no choice but to close down the said project by the end of May 2009.

We are currently doing everything in our ability to ensure the existence of the project; however we will not be able to do it with immediate intervention from your Department.

With NO response I attempted  again on the 14th April 2009 to establish dialogue:

Dear Carol,

Since my previous mail I have received no correspondence, response or acknowledgement for any of the recipients included in my e-mail dated 8 April 2009.

I have furthermore not received any formal response regarding the application submitted to the Department of Health re funding for Hurdy Gurdy House.

Please advise.

Today I received the formal reply for Pat Collis:

The Metro District Health Services are unable to fund Hurdy Gurdy in this financial year. It is with regret that we are unable to do so. Regards Pat Collis. Should you wish to email me Pcollis@pgwc.gov.za. A formal letter of regret will be sent to your organization.

Sorry not good enough, if you do not have funding available is because you are not competent in your position, because you did not apply to national treasury for budget and how do you justify underspending in your department?

Please tell me what more do I have to do to get the Western Cape Department of Health to take responsibility for the most vulnerable of society?

I have committed to do whatever it takes to make a difference to Autism in South Africa, sitting 74 days in  “Jail Cell” :

Jail4Bail

Jail4Bail

In November 2009 we will be “Putting AUTISM to the TOP – Kilimanjaro”

Putting AUTISM on TOP - Kilimanjaro

Putting AUTISM on TOP - Kilimanjaro

WHAT ELSE CAN I DO TO GET THE GOVERNMENT IN SOUTH AFRICA TO TAKE AUTISM SERIOUSLY?


“More children will be diagnosed with autism this year than with diabetes, cancer, & AIDS combined” World Autism Awerness Day

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Posted on 26th February 2009 by Gerhard Pieterse aka jail4bail in Autism | Real stories about real families with Autism | Uncategorized

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Autism is taking over the world in April 2009.

WAAD (World Autism Awareness Day) was proclaimed 2nd April annually, which started in 2008.

The Autism World had this to say:

So what has happened since WAAD 2008 Internationally?

Autism became a political ball game internationally. US elect Barack Obama took action , the Government in the UK took action, and one have to ask why? Would it be to gain votes or is it because reality has set in that Autism Spectrum Disorder is currently affecting 67 Million world wide?

What did parents have to say?

Jeanette ODonnell mother of 6 children of which 5 on the Autism Spectrum said:

We will see families struggling for services and education. We will see Jenny McCarthy, yet again, telling us about her knowledge about Autism and “curing”, “recovering”, “almost curing” her son….maybe she will make up her mind this time. She will go head-to-head with prominent doctors about vaccines and Autism…now that will be worth watching.
We will see Larry King massacre the pronunciation of Autism…
We will see families with multiple children saying how difficult their lives are by having so many children with Autism. We will see meltdowns and temper tantrums. We will see tears flowing from the faces of parent’s who envisioned a better future for their children.

What we won’t see is children and adults with Autism actually thriving in our communities. You won’t see that there are children getting better and thriving every day. You won’t see promotions for amazing programs out there that are seeing results from Sensory Integration Therapies and Play Therapies.
You won’t see children with Autism who can go to school, sit quietly and respectfully in a classroom, because they have been inclusioned since 5 years old. You won’t see parent’s who have worked hard with their children and not allowed inappropriate behaviors in public….

Instead, we are going to be subjected to the “gloom and doom” bias of Autism. The Autism that requires a parent to slap a tee shirt on their child and blame their Autism for their behaviors. It is much easier not to parent that way. We are going to get to see mothers and fathers crying about the child they were supposed to have, instead of the glory of the child who is sitting right in front of them.

I think I will celebrate WORLD AUTISM DAY in our home. I will remind my children to be on their best behaviors today…because the WORLD is watching them. I will let them know they are the most wonderful, amazing children in the WORLD and I am so very proud to be their Mother.

Are we missing the point of World Autism Day? Big hype with no action means nothing.

The South African Government up to date has not acknowledged WAAD in any way. Individual private organisations for profit jumps at the opportunity to claim that they recover even state that they cure Autism. These organisations usually target families of  newly diagnosed vulnerable families making false promises of recovery to improve their bottom line.

Please understand with appropriate intervention in an multi-disciplinary team dynamic, consisting of a toolbox of acknowledged  therapies and interventions most children’s developmental ability will improve significantly .

It leaves me with the burning question?  How to participate in World Autism Awareness Day 2 April 2009? What would you do to make a meaningful difference?

South Africa rural reality