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

From: To: Community Affairs, Committee (SEN); Subject: Submission to the Inquiry into the National Disability Insurance Scheme Bill 2012 Date: Saturday, 22 December 2012 10:07:06 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.

From when my son was diagnosed with Pervasive Developmental Delay at one year old to when he started school at six years old, we received almost no funding assistance.

When we did apply for funding, from various Government bodies or NGOs, including Centrelink and FAHCSIA, we were treated like sub-citizens, forced to prove our claims over and over again and expected to submit to in-home assessments over and over again, for extremely little in return. We found the agencies inefficient, incompetent and secretive. When we did access a service we found it to be sub-standard and irrelevant to our child’s needs. It seems to us that the funding services have become corrupted. For example, our son needs one-on-one support all the time, and therefore he can’t access kindergarten or after-school care or holiday activities without a carer. When we enquired about funding assistance for this we were told we would need to hire a specialist carer, of whom there is only one available in our region. She charges $60 an hour and is so booked out that you can only access her services for one or two hours a week at most. To gain access to the services of this person we would have had to submit to ANOTHER assessment and submit more paperwork. We chose to hire our own carers, who have no qualifications except for the love and energy they put into caring for my son. They charge $20 an hour, live locally, and are keen to work. This is just one example among countless ones of how the system is looking after itself rather than our needs or the needs of our community.

Another example - we heard there was potentially $7,000 worth of funding available for a child with my son’s condition. I applied to FAHCSIA and found out that this funding could only be spent on approved services by approved providers. When I managed to winkle their Top Secret list of carers and services from them I found they were all for conditions my son doesn’t have, and in locations as far away as Sydney, which is too far for us to go. I asked if we could use the funding on services we were already using which had proven to be very effective for my son. No, we were told, because they had not been approved or recommended by an approved provider. I asked if our specialist paediatrician or physiotherapist could be approved providers - no, we were told, because they had not been approved by this specific organisation. So then one of our therapists went through the process to become an approved provider and after submitting her application she never heard from them again. Despite repeated attempts. So where has this $7,000 worth of funding gone? I have no idea, but I suspect into the maw of that organisation with its complex funding approval processes. At no point in my communication with them did they express the slightest interest or concern in how things were going for my son.

We had no choice but to go our own way, using the therapists and therapies that have proven to be very helpful for my son. These include a one-on-one carer to take my son to pre-school, an occupational therapist, a physiotherapist, a homeopath, and most importantly of all, a heated pool for my son, which had a

• direct impact on my son’s learning how to walk at four years old. We have paid for 95% of all of this, which has put extreme financial pressure on our family. We have heard anecdotally, and experienced, how difficult the financial pressures of caring for a child with a disability are on a family and on a marriage, and most don’t make it. This deprives a child further, because the most important thing for any child with a disability is a strong and loving family unit. Let alone the other social and economic harms family break-ups cause.

I am very proud to say that with the financial and emotional support of our family and friends our marriage is still in tact and our son is thriving. But when I look back on the last six years I am shocked and angered by the role government agencies and NGOs have played. They have been almost never helpful and at times harmful, until we realised it was a waste of time and precious energy dealing with them and accepted that we would need to fund ourselves and go our own way. They have patronised us and treated us as if we were trying to take something from them. I have found ‘experts’ in education to be completely ignorant of the system as it actually works, and have contradicted me when I have tried to disabuse them. I could go on and on about how poor and dysfunctional the system at present is, and how uninterested many policy makers seem to be in even facing that fact, but I won’t. Suffice to say that disability itself is certainly a challenge, but the greatest one for us, and the one that posed a threat to the wellbeing of our family has been the lack of funding and assistance and the extreme financial challenge of providing for the needs of our child and making sure he has all he needs to develop and grow.

The murkiness and chaos of the funding world, and the attitude of the funding agencies which seem to exist for their own reasons which have nothing to do with actually servicing the needs of children with disabilities has convinced me that families must be in control of their own spending. We have contributed greatly to our local economy through the jobs we have provided and the services we have accessed, just as they have contributed to us. They do not need to be ‘specialist’, they just need to be useful, and we, our son’s parents, are the best judges of that.

For funding to be useful for us it needs to be clear how much we are entitled to and under our control to spend it. We are more than happy to be accountable for it, and more than happy to consult with the people we have found to be helpful who could be in liaison with the government also. Our specialist peadiatrician, for example, or our physiotherapist. There should be just one of these people, however, who assesses and meets with us, and it should not be more often than annually.

The NDIS has the potential to revolutionise the lives of people with disabilities and their families. It needs to be under the control of the people with disabilities themselves, or their families, though to spend it. And it doesn’t need to be on ‘specialist’ services, although sometimes of course it will be. It also has the ability to assist the communities in which people with disabilities choose to live. For example, if funding follows the person, they might choose to live in a small town, which we have found to be a very good place for our son. They will become an employer in that town, as they access services. Most importantly, they will be able to look after themselves on their own terms, based on the assumption that they know best what they need and be able to get it.

As a mother of a child with a disability, I hope the NDIS will mean that no family will go through what we have gone through in the last seven years. The welter of paperwork and demeaning interviews and assessments that result in nothing except disempowerment and passivity, and the feeling that we are second-class

Citizens begging. I hope marriages and families won’t break apart under the financial pressures, and I hope the services that are currently so ineffective and self-serving will disappear.

I hope when a child receives a diagnosis of disability that the family can be informed of their rights and entitlements in a way that allows them to get on with their task of looking after and loving their child.

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

• People with a disability can choose the types of support to use,
• Better access to mainstream support and services,
• The ability to receive services when needed and in the way that suits the person

The most important services for the NDIS to provide are:

• Therapy and allied health services,
• Equipment and home/vehicle modifications,
• Education support (technology/services/equipment)

I support the introduction of the NDIS.

I clicked the first three because I was required by the program to do so. However I didn’t want to click any. I don’t understand the above question. I am not expecting the NDIS to provide any kind of support, except funding. Once there is funding the services and supports will emerge that meet the needs of the people with the funding to spend. ie the people with disabilities and their families and carers.

I support the NDIS Scheme because it will do away with a system that is abusive and broken and replace it with a system that allows people with disabilities and their families to live and grow and learn with dignity and pride. It will locate people with disabilities in the mainstream economy where they can access mainstream services at a mainstream price. When they do need specialist services there will be a proper competitive market for those services instead of the complicated and inefficient system that exists at present where, for example, the subsidised speech therapy available for my son was at least ten years out of date with current research and completely ineffective for my son. They kept offering it, however!

I agree for my submission to be made public

Regards,

Ms Laura Bloom