To the Joint Standing Committee Inquiry into the

National Disability Insurance Scheme - Assistive Technology

Thank you for accepting this submission on behalf of who was accepted into the NDIS in 2016. Her first plan commenced in December 2016.

BACKGROUND INFORMATION -

         is 16 years old, has spastic quadriplegic Cerebral Palsy and uses both a

manual wheelchair and a powered wheelchair. She is not able to transfer between her wheelchairs and seats/bed/toilet independently. As her carers, we undertake continuous manual handling.

         is currently in Year 11 at our local mainstream high school and receives

significant support from the teachers aides for learning support and personal care.

     has received services from Cerebral Palsy Alliance since she was 2 years

old - initially under the old block funding (State) system. All of equipment needs were assessed by Cerebral Palsy Alliance and most was funded by ENABLE NSW.

From the very beginning of life we have encountered delays with the provision of equipment - working our way up waiting lists; undergoing endless assessments; applying for funding and awaiting decisions - sometimes waiting well over a year per application and often only being funded for one piece of equipment within a two year period. We have had to undertake private fund raising activities to pay for approximately $40,000 worth of equipment for due to a lack of government funding.

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Our family dad, mum and older sister) resides in south western Sydney.

We built the house in 1994 and it is is not wheelchair accessible. is

unable to stay at home by herself - not ideal for any 16 year old. We are

unable to engage support workers to assist with personal care due to

WH&S policies - for example no lift policies and a lack of equipment to assist

with transfers.
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      name was initially placed on a waiting list at Cerebral Palsy Alliance for
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assessment for home modifications when she was 5 years old (2007). Through

some administrative oversight, was not assessed by an Occupational

Therapist (OT) until August 2016.
At first NDIS planning meeting in October/November 2016, a request

was made for funding for home modifications and replacement wheelchairs

(powered and manual) to assist Hannah to achieve her goal of independence.
The scale of works for home modifications was deemed major and outside the

scope of works which Cerebral Palsy Alliance could undertake. We were referred

to a home modifications service, which undertook an “Initial Needs Assessment”

in October 2016 (full report in PDF format has been submitted).

ASSISTIVE TECHNOLOGY NEEDS -

Manual wheelchair - TiLite Aero Z with customised seating. This wheelchair was

funded by ENABLE and delivered in October 2013 (after a two year wait) when
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  was 11 years old, weighed 18kg and was about 110cm tall. She is now
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16 years old, weighs 42kg and is approximately 145cm tall.

We requested funding to replace this wheelchair in first planning

meeting (in October/November 2016) as had already outgrown the

wheelchair and was experiencing extreme discomfort.

In June 2017, trialled a number of manual wheelchairs and her OT

submitted a report to NDIS recommending the most appropriate for
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Powered wheelchair - Invacare TDX SP base with customised seating. This

wheelchair was funded by ENABLE and delivered in 2009 and had the original

seating, which had outgrown, replaced by ENABLE in approximately July

     uses  this  wheelchair  daily  at  school. We  only requested

replacement seating on this wheelchair because had only been using

the powered wheelchair regularly since commencing high school in 2014 so the ase had “low mileage”. The current seating on the powered wheelchair is not

ideal as postural needs have changed.

          trialled a variety of powered wheelchairs with her OT in August 2017

who then submitted her recommendations to the NDIS.

In July 2018          current NDIS planner phoned me to discuss the funding

for replacement wheelchairs. I was told that would not be funded for

both chairs, regardless of need.

   I do not think the planner is the person making the decision as to what  is most

appropriate for but I do think she is trying to advocate for

within a number of restrictions placed on her (apparently it’s not “reasonable

and necessary” for a person to need two wheelchairs - and NDIS would fund the

more expensive powered wheelchair).

   I explained the problems with only having a powered wheelchair are that

home modifications have not been done so would not be able to

access her own home. Additionally, we could not transport said powered

wheelchair and would not be able to access the homes of family and

friends! I advised the planner that replacing the manual wheelchair was critically

urgent and absolutely necessary and that we would apply for a new powered

wheelchair later.

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11. Home modifications - This process has caused more angst and frustration than anything else we have experienced in the disability world.

The initial site visit and assessment was done by Cerebral Palsy Alliance’s OT in August 2016, then referred to Macarthur Home Modifications Service as it was deemed beyond the scope of works that Cerebral Palsy Alliance could undertake.

At this stage, was registered for NDIS but had not had a planning meeting.

In October 2016 an OT from Macarthur Home Modifications Service did a joint site visit with the OT from Cerebral Palsy Alliance. We were informed that if was “registered for NDIS (NOT EVEN FUNDED!!!)” that Macarthur Home Modifications Service would not fund the job because their funding was being reduced due to the NDIS national roll-out.

      was put onto yet another waiting list as Macarthur Home Modifications Service was not an approved service provider to assess major modifications.

Months passed and I finally made contact with one of the three NDIS approved OTs authorised to assess major home modifications and was advised that Macarthur Home Modifications Service’s OT was now approved to assess major modifications for NDIS. I was also advised that a Project Manager would need to be appointed to oversee the works and that funding would be added to plan.

In approximately October 2017, the OT from Macarthur Home Modifications Service did another site visit with an NDIS approved Project Manager for compliance before final proposed plans were drawn up and submitted to NDIS.

By this time, the OT’s report had to be reviewed because the NDIS’s validity had lapsed. There was another delay because the Project Manager’s fees had not been paid so he would not proceed with obtaining quotes from trades.

With each delay, a new report has been required which adds to the cost of assessments and drains the public purse.

It is now September 2018 - almost another year has passed and still no

approval although the planner has been in contact requesting photographs, scope of work, a second quote and original house plans in order to escalate the application. ALL of the aforementioned material has been lodged with NDIS already but for some reason is not visible on portal.

CONCERNS -

mental health is suffering as a result of the constant delays she is experiencing with getting what she needs and deserves from NDIS. She is under the care of a psychologist and at high risk of self harm. psychologist wrote a letter to our local MP in support of our applications for assistive technology and home modifications (A copy has been uploaded).
is about to commence Year 12 and we are very concerned that we will either be living in a constructions zone or still in limbo as she attempts her HSC exams.
Without home modifications we are unable to employ support workers to assist with personal care. This means that cannot stay home alone with friends which is socially isolating.
I have chronic health issues and am unable to lift into our shower recess which means that her father is showering daily. This is fracturing the father/daughter relationship.
My husband and I are at high risk of injury. Our physical health is deteriorating from constantly lifting and carrying

RECOMMENDATIONS -

I believe that it is critical for the applications for assistive technology to be assessed by qualified people like occupational therapists, psychologists and doctors not lay-people.
A time frame standard needs to be introduced for applications. In my daughter’s case two years (so far) in limbo waiting for a decision of home modifications is cruel.
Reports prepared by therapists and quotes for equipment should be valid for at least one year.
There needs to be consistency in the application and approval process. Decisions on supplying equipment seems to vary from state to state - even for participants who have the same or very similar needs.