Spam: Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012

From: To: Community Affairs, Committee (SEN); Subject: Spam: Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012 Date: Tuesday, 22 January 2013 9:40:56 PM

Please consider this email a formal submission by me to the Senate Standing Committee on Community Affairs Inquiry into the National Disability Insurance Scheme Bill 2012.

The current disability system has many problems that need to be addressed.

My daughter is nearly 13 and is profoundly disabled. I have 3 other younger children. We need extra care so that we can function in a normal way and we need respite so that we can have a break. It’s hard to know where to start looking for extra services and often feels like its not worth it because I don’t have the time, and am not inclined to start jumping up and down and getting mad about it. We have to fit in with the services, not the other way around. It often feels like we drew the short straw so we just have to ‘suck it up’. We need extra care to help with our daughter regularly after school hours. (we currently get one afternoon a fortnight and we rely heavily on our own parents for other days in the week) We need more respite so that we can have a break, we are often exhausted and broken by the ’Groundhog Day Effect“ of caring for our disabled child. The majority of services we receive are provided by the local council who all but freely admit that disability services are not their strong point and we have no choice on who can deliver this service. They are all wrapped up in rules and regulations about lifting and showering and hoisting in order to protect themselves and their workers which virtually renders them useless to us anyway, as they cannot actually assist us to do anything useful with our child like shower her or put her to bed. In my experience, the best carers are those who care for my daughter as if she were their own (and with common sense), and are not bounded by the ridiculous rules and regulations of organisations who generally don’t have her best interests at heart.

The main features of the NDIS that will make a difference to the community are:

• Increased ability to coordinate services to suit the “whole” person/family, Less red tape, with planning done locally by people who know their community, Older parents and families will not worry what happens when they can no longer provide support

The most important services for the NDIS to provide are:

• Support for families and carers, In-home care and domestic assistance, Flexible in-home/outside home respite

I support the introduction of the NDIS.

As a parent of a disabled child I feel that my family’s daily existence is compromised by my daughters disability. Of course we just get on with it, but it is frustrating to have to just cope and get by with the services we receive. We rely heavily on our own parents for extra support that is not always going to be there. We would like to have the opportunity for success in our own lives as well as our other children’s lives, however sometimes it feels as if we do not have that chance simply because of the compromises we have had to make for our daughter. Families and individuals affected by a disability should have the same

opportunities to succeed in their lives as everyone else. I hope that the NDIS will go much further to lighten the load that disability can bring.

I don’t really know how long my daughter will live for. She is generally healthy, however the extent of her disability means she is physically very underdeveloped; she cannot sit/stand, hold up her own head, grasp, chew. It can’t be comfortable, and I hate to think about what it feels like to be squashed into a wheelchair, or lying in bed, or on the floor, or having food shovelled into your mouth, or having a bath that is too hot, or too cold and having all of those things being decided for you by someone else. But while she is alive she deserves to be cared for with compassion and dignity, and I hope the NDIS will go some way to allow that to happen.

I agree for my submission to be made public

Regards,

Ms Alison Musk