“Severely disabled persons who are non-speakers are an ‘invisible sector’ within the disability sector itself.”
"This collaborative project of the Federation of Disability Information Centres and Complex Care Group revealed findings which will be of interest to government and disability sector organisations.
"The Voice of the severely disabled, those with very high and complex needs, the non-verbal - is ‘spoken’ by parents and those who know the disabled person well and can communicate with them effectively. In order to ensure New Zealand has a future system of disability support which is appropriate for all disabled people - including the most vulnerable disabled New Zealanders - these voices must be heard. This report contains a plethora of valuable insights into what works, and what doesn’t for the profoundly disabled and the families supporting them.
"Parents’ concerns focused on these three overarching areas in particular:
- Lack of targeted and practical supports, particularly respite
- Eligibility criteria which is misaligned to some severe disabilities and needs
- Desperation that despite trying to raise awareness of their circumstances and submitting their concerns to decision makers, the issues parents raise are not addressed."
From the Conclusion:
"At present the Office for Disability Issues works closely with Disabled Persons Organisations. We believe wider representation of parents’ voices - via an existing or new overarching parents’ representative group - within the framework of the Office for Disability Issues is also necessary. In this way the perspective of parents can be reliably heard and considered.
"Parents of the most vulnerable members of our community – speaking on behalf of their severely disabled loved ones – can then contribute to policy and legislative mechanisms about the issues which will affect them and their family member. We believe that only in this way will New Zealand ‘leave no one behind’."