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