Despite the global commitment to Family Centred Practice and partnering with families, it doesn’t always work as well as it should. During several recent conversations with mothers, they have expressed their frustration at not being take seriously, not begin asked what they think and respectfully engaged in the planning and decision making processes for their child. Parents have bluntly described to me their feelings of eroding self-confidence, distrust, frustration and exhaustion at continuously trying to make it work with service providers. These parents feel invisible and powerless.
During the writing phase of my pending book, “Becoming Chief – Leading your child’s special needs to team for brilliant outcomes”, I have returned to the relationship between parents and service providers many times, spinning it and looking at it from different angles. Why is it still good luck rather than good management?
Here are some thoughts.
For me it is about attitude, organisation, time, sharing knowledge, communication and respecting differences. I have enjoyed re-reading documents from the Disability Services Commissioner, Family Centred Practice gurus and my clinical and coaching heroes. However, I appreciate that relationships are a two way thing and that parents and carers also need to get informed and advocate assertively in order to lead their child’s team towards the outcomes they desire.
Service providers need to fast track their understanding of international and nation laws detailing the rights of Persons with Disabilities. Then roll this and the guidelines from the Disability Services Commissioner into their organisational cultures, their people and their service delivery. The additional benefit being that their organisation is moving to become NDIS ready. This commitment should be in writing and clearly and consistently articulated at all levels by all staff to all consumers all of the time. Parent consumer feedback, participation and involvement at board level lifts this to inspirational heights.
Families, educators and service providers need time to invest in their working relationship. Face-to-face and/or virtual meetings with all team members, importantly out of ear shot of the child are critical. A time and place but more importantly, a commitment to discuss concerns frankly, clarify and ask questions, talk through problems, share information and resources. This is a basic requirement of most business teams yet for many children with disabilities their teams rarely (ever?) all meet regularly.
Families need to be as actively involved in their child’s education and programme as they possibly can be. This is what I hear when I ask parents the question – what advice would you offer to other families new to the disability experience? I see huge value in this wisdom. Additional parent-to-parent advice includes attending meetings, understanding the theory and steps of therapy, grasping the gist of funding streams, being clear on the Individual Learning Plan, Behaviour Management Plan and how it fits inside the child’s overall programme. Be honest, seek explanation if you are unclear.
Get informed. Time, reading, investigation is required and never before has knowledge been so readily available. This builds parent’s conceptual understanding of the systems at play, the legal entitlements available to their child and all the associated vocabulary, ultimately placing parents well into the planning and decision making process.
It takes two to tango. Disability service providers and parents both need to invest time and energy into building a strong working relationship that serves the end game of brilliant outcomes for children with special needs. I plan to unpack more of the concepts behind families and disability service providers working together in coming blogs. Readers are more than welcome to contact me to discuss these issues and to read more about my services.
Occupational Therapist, Disability Service Consultant, Coach, Facilitator.
M: 0488 316 319