Family member of a person with disability

I am writing a submission as I have concerns that with the roll out of the NDIS, vital advocacy services will be no longer funded. As a family member (parent) of a person (my daughter) with disability, I am daily involved with advocacy for her – family advocacy. This is not carer (or parent) advocacy which may prioritise the needs of carers. It is also not advocacy by a disability services provider which may prioritise the viability and sustainability of the service provider. This is family advocacy that solely prioritises the family member with disability and their full inclusion. My goal is to ensure the best outcomes for my daughter with disability in an inclusive setting, to enable her to have the same opportunities in life that other Australians enjoy.

Families are best placed to advocate for a person with disability as they are the closest people to them, are the people most likely to advocate over the long term for their family member with disability, and who will act in that person’s best interests. Many of the family members with disability have an intellectual disability or multiple disabilities which impact their ability to communicate, and thus are not in a position to advocate for themselves. These people are especially vulnerable and without family advocacy, their rights and interest may not be promoted or defended.

I do not carry out my family advocacy alone, but with the support of an advocacy organisation which supports families to advocate with and on behalf of a family member with disability. It is clear that without this support, my daughter would not be experiencing the success with inclusion in a mainstream public school that she is experiencing. Though there are Disability Standards for Education, many schools do not fully embrace the inclusion of children with disability to the extent that their learning potential is realised. Even where the school and the teachers have the best intent, inclusive education for a child with disability is an uphill battle, contrary to what is usual, or typical. In my experience, every organisation, whether school, sporting group, employment, has a status quo – “yesterdays good enough”. However my role as a family advocate for my daughter is to push through “yesterdays good enough” into “today’s better” – a more inclusive, improved community. It requires more thought, effort, and focus than an environment without disability and that is where family advocacy can assist in a positive way, for all involved. Without advocacy it would be very easy for my daughter’s school to take a more passive stance on her education. With advocacy – encouraging of the school to view her as a valued student, helping form strategies with the staff so she can access the curriculum, promoting her abilities not disability, she is fully included in all classroom activities and is learning the same material as her peers. Socially she is so well liked she was voted the class captain this year. Having her at the school and fully included is having a major positive social change in that community. This does not happen without persistent, long term family advocacy. As a family advocate, with the help of an advocacy organisation and a network of people with experience and expertise, I champion her cause for education with the same opportunities as her peers without disability and full inclusion in her community – she can’t do that for herself and the school has minimal motivation to do that, it is only us as her family who really do it.

Systems may change and the NDIS is a new system which brings many positives, but people’s fundamental vulnerabilities remain. It states in the NDAF Outcomes at (e): “people with disability receive independent advocacy support that is free from conflict of interest”. Family advocacy can do this, service providers inherently cannot provide advocacy without a conflict of interest. To achieve Outcome (e), independent advocacy organisations must continue to exist and be funded under the NDAF to provide the support they do.

Families are at the forefront of advocacy through family advocacy for their family member with disability. This is especially so for those who have intellectual disability or multiple disabilities making self-advocacy almost impossible. Despite this, not once in the Principles, Outcomes or Outputs of the Framework are families or family advocacy mentioned. (It is only mentioned in the glossary). I find this omission almost insulting in its lack of acknowledgement of the most fundamental long term advocacy that is undertaken.

With a view to the Principles, Outcomes and Outputs of the Framework, a principle which should be included is one such as:
– Disability advocacy strengthens the capacity of the families of people with disability to speak out for inclusion for people with disability by actively supporting and encouraging family advocacy.

An outcome should be included such as:
– people with disability are supported to have a network of natural and informal supports, including family advocates. Where possible, families are supported to advocate for and support their family member with disability.

An output should be included such as:
– Disability advocacy that builds the capacity of family leaders who can advocate both systemically and for full inclusion of their children and siblings with disability.