Acknowledge and support the roles, responsibilities and issues facing family, whānau and carers of people experiencing disability.

Key steps:

• Ensure that, where appropriate, the family, whānau and carers of people who experience disability are given a legitimate voice in issues that affect them or their loved ones.
• Work actively to ensure that the families, whānau and carers of people who experience disability can be involved in policy and service development and delivery, and in monitoring and evaluation processes where appropriate.
• Encourage debate around responsibility for caring and how to further recognise and value the caring role.
• Improve the support and choices provided to carers of people experiencing disability (particularly children) in order to minimise loss of employment and income, the impact on families and siblings, social isolation and pressures on women to remain at home in a caring role.
• Address questions regarding rates of pay for professional carers and whether families should be paid for caring services.

"One April morning, after eight months of assessment, observations and countless appointments we were told that our physically perfect, attractive four-year-old daughter was "handicapped"; she was diagnosed as having autism and intellectual disability. The grief was almost all consuming and our lives changed forever.

Our daughter’s inability to understand people and language caused her constant stress. She coped by organising her life into structured routines that only she knew. She is now nineteen and a valued member of our family. With a lot of energy from us and professional behaviour support, our daughter now has an acceptable communication method - we all write everything.

We still feel tremendous grief, but now it is for our daughter, not ourselves. Just coping is difficult for our family and for her. This has been compounded by the difficulties of the "system" and an unaccepting community. With each milestone it feels as if we are the first ones to have got there. After years of trying to work with unaware, unco-operative teachers who failed to equip her with skills for adult life, we are faced with the task of supporting our daughter into adulthood. All we hope for is that our daughter be an accepted, valued member of our community who has the opportunity to contribute and participate."

Anne

Questions

27. What is the cost of disability experienced by families?

28. How can more effective support be given to families, whānau and carers?

Seeking any further feedback on the action areas

29. Are there any other key areas for action that have been left out?

The Government is also interested in feedback on the best ways to practically advance the action areas and steps outlined above. Your ideas might include advice on:

• how local government can contribute most effectively to Implementation of the New Zealand Disability Strategy
• how public service structures or responsibilities might be changed to advance the Strategy’s vision (for example, where responsibility for funding disability support services should sit)
• what debates, discussion and work are still needed
• what issues are most important and should be addressed first.