DISABILITY SERVICES COMMISSION

ILC 2016/17 Priority One: Information and advice for People with Intellectual Disability who have Complex Communication Needs and their Families and Carers.

Published December 2018

Background

Individuals with an intellectual disability diagnosis, unmet complex communication needs (i.e. no robust communication system in place) and behaviours which can be seen as challenging are cited as some of the most difficult to include in NDIS planning.  This project aimed to bridge the gap in awareness and information about the NDIS by developing accessible information targeted to the needs of this group.

The Key Findings and Recommendations for this target group were:

  • There is a need for explicit NDIS planning related language and also planning processes themselves to be embedded in AAC systems.
  • There is generally inadequate NDIS funding to support the target group to access the level of support necessary to achieve success.
  • There is a need for NDIS Planners to understand that the technical requirements of supporting people with complex needs require a therapy team approach –including Speech therapy, Occupational Therapy and Physiotherapy to address access and sensory needs which can be barriers to access, and physiotherapists for positioning.
  • The group consistently felt that 30 hours of support from a suitably qualified and experienced professional would be the minimum required to get to ‘first base NDIS readiness’ – i.e. to be prescribed a suitable device, and for the person’s networks to be educated and supported in how to use it to model language. Most NDIS plans allow for 10 hours.

Additional Project Outcomes were:

  • Formation of the DDWA CCN families Facebook group-a closed group of 47 members from around the state. DDWA continue to moderate this page and provide updates with information about CCN and upcoming events. Many of these families reported feeling very isolated and unaware of progress being made in this field and now have a point of connection.
  • Two abstracts reporting the process and outcomes of this project were accepted at the International Society for Augmentative and Alternative Communication (ISAAC) conference. (Program available here: https://www.isaac-online.org/wordpress/wp-content/uploads/ISAAC-2018-Conference-Program-ACC__-1.pdf and also attached – Wed 25 July: 1362 Insights from four mothers who pursued robust AAC for their adult sons with developmental disability. Laura Jones, Yvette Theodorsen, & Jaquie Mills; and 1377 Increasing AACcess to information, choice and control for NDIS planning: A project in co-design. Jaquie Mills & Laura Jones. These presentations were well received and resulted in DDWA being asked to write an article on the second presentation for Intellectual Disability Australasia Magazine: (https://www.asid.asn.au/members/members_area/ida_magazine)