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Edel Shaw

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.

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Edel Shaw

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  1. Edel Shaw Laois Offaly Families for Autism (LOFFA)

  2. ‘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:

  3. 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

  4. What Parents are looking for? • Simple? or Complicated? VERY Simple • Support and Intervention which will allow our children to reach their full true potential

  5. What are we met with?... EXCUSES • Waiting Lists • Lack of Resources • Embargo on Recruitment • Everyone looking for Assessment of Needs

  6. 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? ……

  7. Culture of Circling the Wagons

  8. 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

  9. 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

  10. 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

  11. Is this our first priority? NO …. because our 1st priority is as a PARENT

  12. 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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