From: To: Community Affairs, Committee (SEN); Subject: Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012 Date: Thursday, 17 January 2013 10:27:44 AM
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.
Our much loved son, who is profoundly and multiply disabled, and now aged 17 years has had fragmented, inadequate services and supports for himself and his family during his lifetime and a severely inadequate lack of planning for his future since his birth despite his family’s efforts to do so. So, what we needed and/or need now is for the NDIS to guarantee that he can access the services and supports that he needs, in a timely manner, to live a satisfying, enjoyable life and services and supports which enable his family to do the same. We can’t live full lives contributing to the community and earning adequate income if we are frequently needing to invest considerable time and energy into obtaining services and supports and engaging with these services for many hours weekly, even though our son lives in a group home which is funded ’to meet his care needs for 24/7 ’ in this group home. Some of the problems with this service is that the care is provided, for the most part , when he is at home, rather than the care going with him wherever he happens to be in the community. How can he be expected to belong to, and be valued by, the community if the essentail support he needs is limited to ‘in home’ support? (because the service provider has deemed this is the ‘best’ way to provide him with support…despite that support for 24/7 care only being in excess of $175,000 annually, paid by Australian and West Australian taxpayers. The agency prides itself in being a ‘leader in the field’ but is top heavy in management.) How can he spend many hours with his family when this means his family is forced to forgo the assistance of a support worker and provide all the (considerable) care ourselves? The result: we see our son much less than he and we would like….and the loss of connection to each other hurts deeply him and the rest of his family. Similarly, we had no choice re the suburb in which he lives…which also means it is harder for us to see him and spend time together. These are very heavy prices to pay..because we can no longer care for our son at home and have chosen the ‘best’ of our ‘un’preferred options…..it is hard to say in words how that heartbreak feels, but be assured that it is real and deep and ongoing…and it needed be like this. This is why we fight for the NDIS so we, and other people with disabilities and their families, can use their energies positively rather than to have them drained in this way. Love and family connection are two of the most basic needs of human beings, aren’t they? So an NDIS which puts our son and his family back in the driver’s seat is priceless and gives us hope for today and the future. We have limited recourse to financial scrutiny of how our son and the other residents’ monies are used. This lack of transparency and our limited abilities to customise and maximise the benefits of our son’s funding needs to be changed in the NDIS. The power to make key decisions about where our son lives, who we lives with and who cares for him need to be back in his and his family’s hands. We are fraught at many turns to drive the quality of our son’s life and his active and valued participation in the community in which he lives. We have to ‘ask’: can he change schools (yes, we can choose that, but we need the agency’s support in transporting him there), can he do a small newspaper round (yes, if we take him; there isn’t enough money for a support worker to assist him in this way) etc etc. We request ‘special’ times for him to have support worker care in the community and the house manager has to balance that with others’ requests.
We rely on the goodwill and ‘kindn ess’ of the house manager for our son to access the community. Clearly this is intolerable. So for our son and our family, the opportunity for choice in quality, innovative and flexible services driven by our son’s and his family’s needs is essential as is the opportunity for all people with disability and their families to access professional, but not necessarily formal, training/upskilling/facilitation to support them in developing skills and understandings to maximise these opportunities for self directed services. However, I am concerned that this process could easily become present service providers telling people with disabilities and their families what to do, rather than supporting their own capacity to drive their own dreams and goals. We need to guard against this occurring. Our son also needs equipment and equipment providers that respect his time and value in society. We were recently stunned that a provider said that it was usual practice to take 48 hours to make covers for his wheelchair insert…something that meant he could not sit or be comfortably supported for those 48 hours. A situation like this would be intolerable to most members of our community, but apparently this was an acceptable standard of service for this service provider. When I checked with other providers they too considered this an acceptable time frame. Implications of this meant our son could not attend school for two days and was relegated to being on the floor or in his bed for two days even though he was well and able to participate in the community if he had access to his (custom modified) wheelchair and insert. We were also stunned that for the agency who provides his care in a group home this situation which regularly occurred for many of their 120 odd resid ents across their group homes had not voiced any complaints/discussions re this poor service standard.
Our son will leave school at the end of 2013 and only very nominal services are available to him and his family to make this vital transition: this is in contrast to the varied and extensive range of supports available to his peers attending mainstream schools.
Our son needs therapy input for the rest of his life, but has currently very limited access - on a consulting basis and mostly limited to the choosing, ordering and management of equipment like his wheelchair. If we are assertive enough we can say, “No, this wheelchair doesn’t suit his needs….let’s look at this one,” but we are powerless in accessing a different wheelchair, whether it is more or less expensive, than the one the therapist deems is best because we cannot access funding without the therapist filling in the request and justifying his/her choice. The present processes do not allow the individual to state their preferences/argue their case. The alternative would be for us to self fund and we nor our son quite simply don’t have the personal funds to do this. On lots of occasions we may agree with the therapist, but on those occasions we haven’t we have felt powerless to do anything about it. Situations like this create on-going conflict, even resentment at times and do not promote our son’s ability to live the life he wants to lead…which is surely a basic human right?
There is much more I could say, but will leave it at that as I think readers can get the gist of what i am saying….
The main features of the NDIS that will make a difference to the community are:
Ensure support and equipment is available when needed, People with a disability can choose the types of support to use, People with a disability can plan their lives and pursue their goals and dreams
The most important services for the NDIS to provide are:
Therapy and allied health services, Equipment and home/vehicle modifications, Support for families and carers
I support the introduction of the NDIS.
Quite simply Every Australian should be supported by our Governments and legislation to access quality, flexible, innovative services and supports when they need them and to plan their lives so that they can focus on their abilities and unique gifts and talents, rather than the focus of their lives being on their disabilities and being defined by what they can’t do.
Every Australian should be equal in their opportunities to access their basic needs. At present, people with disabilities and their families cannot, consistently, do this in this country and it is a shame that Australia needs to cast aside and support people with disabilities to contribute meaningfully to society and to be valued for their unique and often amazing contributions.
I agree for my submission to be made public