June 27, 2016

New program helps parents and carers prepare for NDIS

Pilot program prepares parents to advocate for their children under National Disability Insurance Scheme (NDIS). 

A new pilot program that equips parents with the skills and support needed to advocate for their children is underway at UOW. 

‘The Parent Room’ is an eight-week program, designed and run by a multidisciplinary research team led by Dr Amy Conley Wright from UOW’s Early Start Research Institute in collaboration with local not-for-profit community organisations CareSouth and Noah’s Shoalhaven, prepares parents of children with disabilities for the National Disability Insurance Scheme (NDIS).

From July 2016, the NDIS will be progressively rolled out in all states and territories (except Western Australia), with the Illawarra-Shoalhaven district receiving support from July 2017 and a view that the scheme will be fully up and running by 2020.

Social welfare expert Dr Wright said the NDIS shifts allocation of funding from programs to eligible individuals and service delivery from government to the private and not-for-profit sectors and hence, it is imperative that parents know how to advocate for their children in such a system.

“The NDIS will mean that parents are now responsible for identifying and securing services for their children.”

As part of the program, parents are coached on how to identify their children’s needs and act as the voice of their child, for example, writing letters and attending meetings on their behalf, in order to gain support and funding for special medical and education needs.

“For example, a parent participating in the program was having trouble getting support for his child’s particular needs at school, which was hindering his ability to work full-time,” Dr Wright said.

“We found a statute stating the school’s responsibility to meet this need and encouraged the parent to use this to assert his request. The school has since provided the additional support required, and the parent has been offered full-time work with his employer.” 

Over the course of eight sessions, participants are encouraged to create a vision and goals for their children, and develop a service plan for the NDIS.

Dr Wright said the program, which is funded the NSW Department of Family and Community Services, would also give parents the opportunity to meet others in the same position, providing a sense of community and support to the parents of the 290,000 children (aged 0-14) living with a disability in Australia.  

“Parents of children with disabilities can feel isolated.  It can be powerful to find out ‘you're not alone’ – that there are other people out there who have been through similar, or even more challenging experiences.”

Families participating in the pilot will receive a Discovery Space annual membership at the completion of the program, to continue building relationships with each other.  The UOW Early Start Discovery Space offers valuable learning experiences for young children with their accompanying guardian through play-based learning.

Following the completion of the program, Dr Wright and her team, which includes Dr Claire Manning, who is conducting the trainings, Dr Amanda Webster, Senior Lecturer in Special Education and Dr Jane Warren, Lecturer in Early Childhood who also runs a supported playgroup for children with additional needs, will evaluate the changes in participants’ empowerment, advocacy knowledge and skills, and service usage. They will also write a training manual so the program can be implemented around Australia.

“We are designing this program so that it can easily be used by community organisations and playgroups.  All the resources are there, and the manual will be available for free upon request, so community organisations can deliver the program in an intensive two month session as we have in the pilot, or over a more gradual basis such as a monthly meeting on a different advocacy theme.”

“This Advocacy Training Program is all about empowering our families. Each week we are expanding their knowledge and building on their current skills and confidence,” Noah’s Shoalhaven Family Disability Support Program Co-ordinator Debra Jefferis said.

“We hope going forward that families will feel prepared to speak out for their children,” added Rhonda Miller, Project Manager for Disability Services for CareSouth."