Submission to the committee’s current inquiry into General issues around the implementation and performance of the NDIS

Date: 17th June 2018

I attended the recent Sydney forum on the topic of Quality & safeguarding framework.

As President of the Adelaide Branch of Blind Citizens Australia & also on the National Board of DeafBlind Australia I often receive calls from those applying for the NDIS. There are some generic issues expressed:

• Delays in a formal interview from the initial lodgment

• The lack of personal knowledge of specific disabilities by the LAC or the interviewing person (example – Deaf Blind is a distinct entity & not just duel sensory loss)

• Deafblindness is described as a unique and isolating sensory disability resulting from the combination of both hearing and vision loss or impairment. This has a significant effect on communication, socialization, mobility and daily living.

• People with deafblindness are a very diverse group because of the varying degrees of their vision and hearing impairments, plus possible other disabilities. This means there are a wide range of communication methods including speech, oral and aural communication; various forms of sign language including tactile and deafblind fingerspelling; alternative and augmentative communication; and print and braille.

• The nature of the questions do not reflect the reality people experience with their disability

• Can you dress yourself does not take into account the clothing’s cleanliness, appropriateness & colour coordination for a person who is blind or has severe vision loss

• Can you feed yourself does not reflect food purchase, preparation, use by dates, storage & the need to have assistance or orientation as to what is where on the plate.

• Can you use public transport does not address travelling to a set location, identifying the salient service, locating a seat, locating where to egress & then locating the destination – this has been raised by several who have been denied taxi assistance in their package.

• The packages often poorly reflect the reality of living with a disability & encourages the assessed person to present the worst case scenario.

• The significant delay in receiving documentation as to the outcomes of the initial assessment

• The number of appeals needed & the delays in consideration of any appeal

• The confusion created for service providers as to lack of uniformity in packages for similar disabilities

• Several clients have commented they feel they are worse off

• The issue related to the 65 year cut off & perception of lack of supports under My Aged Care for those with a disability

11. The nature of specific costs associated with Blindness or DeafBlind such as information technology, adaptative technologies, Guide dogs

12. Requests to provide further information that are unnecessary such as being blind from birth or becoming “legally Blind as per the 1991 Social Security Act definition” yet being instructed to seek an ophthalmologists report as to any additional treatments that may improve vision despite being on a DSP-Blind pension & travelling down this bureaucratic pathway in the past with Centrelink.

13. Not all persons with a disability have a carer with a carer’s allowance or carer’s pension or have family & friends to assist & have to pay for assistance out of their disability pension or limited personal financial assets.

At the forum Sydney NDIS Quality & Safeguarding Framework forum I asked a significant question to the final session panel & gained silence as they appeared stunned. After 30 seconds a response came as to the Standards that relate to NDIS advocacy which is not what I had asked. My question is as follows:-

We have heard advocacy groups & the Speakers raise the issues of the justice & education
  aspects that people with a disability needs assistance with, but I would like to raise a whole
   of government approach.

We have various Standards at Federal, State, Council & corporate level that are supposed
   to be complied with. When we use these as part of advocacy we are often told they (the
  governing body or organization) are compliant with the Standard, they have exemption from
  the Standard or they have to be 80% compliance with the DDA by 2020. This is a very
   minimalist approach & discriminatory.

 Many Standards are not kept up to date, are not specific to disability, are not adequate for
  the needs of people with a disability & I would like to ask what the NDIA can do to open
  dialogue as to the Whole of Government approach to rectifying this & hence improve
  access, social inclusion, safety and decrease costs for the NDIS in this process.

 Examples include public transport, environments – public & building, etc.

Disability is multi-faceted & the review, updating, implementation of Standards from a whole of government approach has the ability to save many tax related dollars & decrease EOC & HREOC complaints. Two years ago there were State by State forums looking at the development of a Whole of Journey concept to public transport with a report published detailing improvements necessary. I would argue that we need to have a whole of government focus on Standards that impact on the accessibility & social inclusion of people with a disability in keeping with the DDA & UNCRPD rather than the current system which tends to act as a minimalist paradigm & often lags behind changes in technology or people’s experiences.

Permission given to list name & committees served on but not phone number details

Dr David Squirrell Retired Medical Consultant

MB BS Dip Obst RACOG FRACGP FACRRM Grad Dip Disaster Management Grad Dip Musculo Skeletal Medicine Grad Dip Rural Health Dip Business CEMST Dip Theo

• Blind Citizens Australia (Adelaide Branch) President
• BCA National Policy development Committee
• DeafBlind Australia National Board member