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Published byLeonard Booth Modified over 9 years ago
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Edel Shaw Laois Offaly Families for Autism (LOFFA)
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‘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:
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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
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What Parents are looking for? Simple? or Complicated? VERY Simple Support and Intervention which will allow our children to reach their full true potential
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What are we met with?... EXCUSES Waiting Lists Lack of Resources Embargo on Recruitment Everyone looking for Assessment of Needs
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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? ……
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Culture of Circling the Wagons
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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
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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
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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
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Is this our first priority? NO …. because our 1 st priority is as a PARENT
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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
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