Edel Shaw Laois Offaly Families for Autism (LOFFA)
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Transcript of Edel Shaw Laois Offaly Families for Autism (LOFFA)
Edel Shaw Laois Offaly Families for Autism
(LOFFA)
‘Partnership Now’
A partnership is an arrangement in which parties agree to cooperate to advance their mutual interests.
A partnership is a relationship between individuals or groups that is characterized by mutual cooperation and responsibility, as for the achievement of a specified goal:
As a Parent of a child with a disability who do I need to create Partnership with?• Teachers• SNAs• Doctors• Therapists• Service Providers • HSE • Dept of Health• SENOs• National Council for Special Education• Dept of Education• Support Groups• Politicians
What Parents are looking for?
• Simple? or Complicated?
VERY Simple
•Support and Intervention which will allow our children to reach their full true potential
What are we met with?... EXCUSES
• Waiting Lists• Lack of Resources• Embargo on Recruitment• Everyone looking for Assessment of Needs
What is the reality?• 3 years waiting for Occupational Therapy• 2 years waiting for Speech & Language Therapy• 18 months for Psychology• Lack of therapeutic support in ASD units /
special school setting• AON only way to get written information• No Respite
And if you challenge this? ……
Culture of Circling the Wagons
Response from those in charge?
• Suspicion - of parents who ask questions• Arrogance – if you don’t like it complain• Lack of Information & Engagement• Sinister undertones – clinical outputs• Differing answers at local vs national level -
resources available local vs PQs• Progressing Disability – another talking shop
but excluding organised groups of parents
Effect this has on Families?
• Families crying out for help ……..• Stress / Anxiety / Depression• Children fall through the cracks• Leave school early • Don’t reach full potential• Martial breakdown• Siblings affected
• Reach out to support groups
Parent Support Groups - LOFFA
• 350 families in Laois / Offaly
• raise awareness of autism in our area and • seek health, educational and support services
that are appropriate to meet our childrens needs
• subsidised private therapies SLT / OT– 2012 €13,100– 2013 €11,678– 2014 €11,205
Is this our first priority?NO ….
because our 1st priority is as a PARENT
What do we want?
• Organisations to deliver on the services they are suppose to -- Stop making excuses
• Consistent standard approach across the country
• Respect• Communication • Information • Openness