Senate Joint Standing Committee

23rd Sept 2022

I have attempted to comply with the terms of reference

The committee will inquire into and report on the implementation, performance, governance, administration and expenditure of the National Disability Insurance Scheme (NDIS), with particular reference to:

• a. the capability and culture of the National Disability Insurance Agency (NDIA), with reference to operational processes and procedures, and nature of staff employment

• b. the impacts of NDIA capability and culture on the experiences of people with disability and NDIS participants trying to access information, support and services from the Agency; and

• c. any other relevant matters.

My comments focus on personal experiences & are categorised as neglect from a government organisation that was set up to care for those with a disability.

Personal Background

I had to prematurely cease work as a senior medical consultant in aged care & rehabilitation due to my disability in 2008. I fall into the diagnostic category of deafblind.

In 2013 I was asked to be involved in the design of the most appropriate questions to ask as a person’s disability needs are explored. From a rehabilitation perspective I made a submission using the tools we utilised in Spinal trauma, Amputation, Stroke & Traumatic Brain Injury but it appeared the input was totally ignored & the outcome was a Yes/No style generic questionnaire which failed to capture the varied needs. For example – To ask if a person can dress them selves ignores the aspects of clothing choice, appropriateness, cleanliness, colour coordination, assistance etc & the degree of assistance needed which can vary day by day.

Functional Independence Measure

Overview

The most comprehensive tool in my experience is the Functional Independence Measure

Description

The Functional Independence Measure (FIM) is an 18-item measurement tool that explores an individual’s physical, psychological and social function. This is part of Uniform Data System for Medical Rehabilitation (UDSMR)

Purpose

The tool is used to assess a patient’s level of disability as well as a change in patient status in response to rehabilitation or medical intervention. The FIM uses the level of assistance an individual needs to grade functional status from total independence to total assistance. https://www.kcl.ac.uk/cicelysaunders/resources/fimfam-manual-v2.2-sept-2012-print-double-sided.pdf Page 3 of this demonstrates the scope. It was used both clinically & legally. The latter to demonstrate improvement, deterioration or plateauing of disability functioning.

My Journey & experiences

In 2018 I was invited to participate in the Quality & Safeguarding forum for disability advocacy organisations re represented Vision Impaired/Blind & DeafBlind. The issues tabled appear to once again been ignored & neglect of needs continued.

Initial Interview

The initial interview was conducted by a Local Area Coordinator. I had prior knowledge as to the sub-standard questionnaire & wrote a report on my reality & needs utilising the FIM. The person conducting the interview was uncertain what to do with this report as it did not fit into the Yes/No questions asked.

Plan Application

In 2018 I applied & received my Plan 1 , which was considered to be generous. In keeping with evaluating the areas to validate use I gained OT functional assessments by 4 occupational therapists in their area of expertise. Each cost between $700 - $1600 & was comprehensive as to risks, needs & recommendations. I phoned each month as to progress by NDIA in approving but they were not considered or actioned.

In 2019 Plan 2 arrived without any dialogue. A 75% funding cut, insufficient funding for my known & documented assistance accredited Royal Society of the Blind guide dog was given & $100 allocated for assistive technology. This created the need for a S100 appeal. Despite frequently requesting a time frame for this to occur & no communication, the issue was tabled with the then salient Federal Minister. I was informed my appeal would be escalated. It was – from 9 months to 8 ½ months. The Plan ignored all the OT’s reports & I was told they would need to be undertaken again as now close to 18 months from when submitted. One person from NDIS also told me I should consider moving rather than making my home safer despite much work already taken my me pre NDIS.

In Plan 3 I substantiated that there were no sensory loss training modules in care associated Cert courses & that there were no modules for those employed as carers for continued education, which I had prior reported at the 2018 Quality & safeguarding forum. Centrelink ceased my carer’s allowance & pension due to marrying my carer & told us NDIS would pick this up. However, despite being significantly credentialled NDIS refused as she was now considered family. An S100 was once again lodged & minimal discussion before rejected so I asked for a second opinion & rejected the following day with no dialogue so taken to an Administrative Appeals Tribunal. I was given inadequate time for any advocacy support so represented myself. They were made aware of my hearing loss but despite this a female case worker & female out-sourced lawyer represented NDIA, both of which I could not hear.

The AAT organised a stenographer to allow live captioning in a font size I could see due to my concern raised to NDIA but not actioned. After presenting my factual & substantiated case I was backed into a corner to sign a document to create a pathway to have another Plan assessment. To date 3 months passed & the LAC stated no allocation has occurred & an independent assessor rather than senior Plan manager would most likely be appointed.

Plan 4 (2021) eventually arrived & took no account as to the AAT hearing, personal & organisational recommendations & comments.

Plan 5 (2022) – choice & control removed & I was relegated to having to use a Support coordinator & fund manager. I was made to feel as though I was incompetent despite my skill base & evidence supplied. The Support

• coordinator wrote a report which was rejected & we had to go through the process again of contacting 20 care organisations to substantiative that their employees could not provide the skill set needed. Even when this was submitted they failed to recognise the arguments, the concept of Thin markets so since Deb 2022 I have had no adequate & appropriate care support. Deafblind is very poorly understood in terms of the variations in communication support needed & technology utilised. For a deafblind person a mobile & computer are not every day items but as essential to functioning as a wheelchair is to a spinal cord injured person. My care whom I have had for 11 years who is adequately & appropriately credentialled became my wife & now she is no longer allowed to provide paid support despite the substantiation. I have continuously asked for a complex care planner & have now been allocated to have one but still await contact. Yet if we divorced or she was employed via an agency for a greater cost she could be my carer. Cut & paste from support Coordinators researching independently what I had prior researched in 2020 for the AAT. Email from support coord to NDIA Tuesday, 19 April 2022 I have been trying to organise support services for David and it has been impossible to engage any support services with the appropriate communication skills to work with David. I have now had the opportunity to observe David’s communication needs first hand and I feel without the support of an interpreter he is unable to meaningfully communicate with people without whom, he has not had a long standing relationship. This adds to the complication of attempting to engage appropriate support personnel.

         I am a qualified NAATI - Auslan Sign Language Interpreter and I am also a qualified DeafBlind Communication Guide. (Deafblind Communication Guides provide direct one to one support to people who are deafblind. They assist them with their communication and social needs,
  

mobility, daily living activities and advocacy). Thus, I have some first-hand understanding ofDavid’s unique communication needs.

    Interpreters and CommGuides are both occupations that are in high demand. To engage an interpreter or commguide to support David has been next to impossible.   I understand there have been some issues in the past, regarding David’s reliance on his wife’s support.  I am attempting to ease this pressure by trying to engage generalist home maintenance supports. However, if David is to engage in the community and re-establish or create new friendships and/or attend any community social gathering of any description or participate in any activity outside his home, he will require one-to-one support. One to One full time support is common

Definition of Comm Guides

Commguides are support workers who have trained to develop additional skills required to work with people with deafblindness. These skills include safely guiding a person through unfamiliar and outdoor environments, and supporting communication between the person with deafblindness and others. They act as the eyes and ears for the person, providing the information they are missing due to their deafblindness. This might include:

• Information about the environment, including shops, buildings, or other points of interest
• Written information on personal letters and on signs
• Navigating a safe path to a desired destination. For example, a particular building, or a room inside a building, including bathrooms
• Signing or repeating spoken information from others such as shop assistants or staff at a community facility like a library or leisure centre.

The commguide will support the person to get to the appointment, and find the room, bathroom, toilet if needed and assist with any food or drink requirements.

Commguides can also assist the person with deafblindness to develop new skills, particularly in using new pieces of equipment, practicing walking new routes independently, or practicing strategies to

Skills Development Activities

manage difficult emotions. All of these skill development activities would be undertaken under the guidance of a therapist such as an Occupational Therapist, Orientation and Mobility Specialist, or Deafblind Consultant.

The job as a commguide is to orient my client to this new environment because it’s a different environment each time, letting them know who’s there because different people come each month, not always the same people, letting them know whereabouts in the room the people perhaps are, if there’s coffee or tea facilities, where the toilets are located, and also then providing communication support if they need it.

https://www.deafblindinformation.org.au/ & https://www.deafblind.org.au/ are useful resources

My carer & now wife has the following, & I have substantiated carer service providers cannot cater for my needs.

This is value for money & maximised my care needs.

Qualifications

• Cert 3 Aged care
• Cert 3 Disability
• Cert 4 Community & Home
• Dip Enrolled nursing
• Auslan
• Special areas - vision & hearing impairment
• First Aid
• NDIS Worker Orientation Module

Checks

• National Police
• Vulnerable persons Dept Human Services SA
• Disability Dept Human Services SA
• Aged care Dept Human Services SA

I raised the substantiation that NDIA own documents state I have choice & control & need to ensure Safety &

Quality as documented below. I have also documented that where Thin Markets exist (geography, critical mass in

service delivery etc) family can be used.

This was given to another person but the precedent did not flow on to me.

    Given you have chosen to self-manage your NDIS plan you have complete choice and control in the

     delivery of your supports and your capacity to engage both registered and non-registered providers.

    Please note the Act does not preclude you from engaging friends or family as a paid support, but does

    seek to sustain informal supports and minimise the risk of carer burnout.

  `redacted`

   Lead Delegate

     Internal Review Branch

    Reviews and Complaints Division

     Participant Experience Delivery Group

    National Disability Insurance Agency

   E Intrenal.reviews.planning@ndis.gov.au

Issues listed as to Neglect shown by NDIS

 1.  Lack of understanding of DB as a distinct entity by LAC, Plan writers & appeal persons.

Recommendations

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Deafblindness

They are many disabilities & all staff making decisions should a=vail themselves of the nature & variable

presentations & associated needs. At any time the assessor could have checked the web site

https://www.deafblind.org.au/deafblind-information/what-is-deafblindness/

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, socialisation, 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.

2. Lack of understanding as to a wide range of presentations & needs – not one shop fit all. One contact was told they could claim deaf or blind but not both

Recommendations

• Awareness & research via Web site as to the nature of uncommon disabilities.
• Adequate & appropriate communication utilising the persons preferred format (as outlines in UNCRPD article 9). Many cannot read pdf documents with their assistive technology.

3. Lack of understanding as to assistive technology costs, maintenance & absolute necessity.

Recommendations

• Awareness & research via Web site as to what is available & costs.
• Adequate & appropriate communication utilising the persons preferred format as to what technologies are used, their cost in terms of purchase, maintenance, upgrade. For those who are deafblind this may be a computer with adequate software to enable speech to print or via versa.

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is both reasonable & necessary but often poorly understood in terms of communication, access &

social inclusion.

4. Lack of understanding as to Thin market re functional assessment & care support. Its not just geography.

Recommendations

• An improved understanding as to the existence of thin markets & the impact of those with a disability

that cannot access the reasonable & necessary services.

https://engage.dss.gov.au/ndis-thin-markets-project/ re Thin Markets

About the project

The Department of Social Services (DSS) and the National Disability Insurance Agency (NDIA) have

commissioned the NDIS Thin Markets Project to develop strategies to address supply gaps in ‘thin markets’ in the NDIS. The project will examine options for different cases. Noting that there is not

necessarily a one-size-fits-all approach to addressing thin markets and related challenges, the ultimate focus of the project is on making sure NDIS participants affected by ‘thin markets’ challenges have access

to the supports they require.

Thin markets are being described as inadequate service availability resulting in participants’ needs not being met. Thin market categories being considered include:

• Geographically rural/remote areas

• Support type (e.g. specialised supports with insufficient supply or low demand)

• Supports for people with complex needs such as (but not limited to) early childhood, behaviour intervention, specialist disability accommodation

• Support for Aboriginal and Torres Strait Island participants
• Support for Culturally and Linguistically Diverse (CALD) participants.

The outputs of the project will include:

• a framework for addressing thin market challenges, including for rural and remote areas
• a roadmap for developing and delivering practical trial projects.

CEO Martin Hoffman states in the National Disability Insurance Scheme. Market Enablement Framework.

October 2018

The NDIS relies on the development of a vibrant and competitive market of innovative and quality supports to ensure that participants are able to access choice and control. The NDIA has an important shared role as market steward for this new disability support services market, supporting and guiding the market as it develops to maturity.

5. Lack of appreciation that care organisations often (usually/always) lack workers with Auslan or other communication skills but a family member often has.

Recommendations

• Understanding that often a non-agency person appreciates & can meet the needs of a person with a disability cheaper, more effectively & safer.
• Realising gaps in training exist & finding solutions to address for the future as a matter of urgency.

Equals training institution in SA states CEO Marie Chittleborough

A Melbourne based ASQA (Australian Standard & Quality Authority) is the regulating authority & is

involved in accrediting vocational trainers & they in turn regulate the trainers. There is an industrial Skills council that is involved in writing & developing training packages to cover disability, aging & individual support. To develop these modules, they are supposed to consult with industry, government & community but it seems bureaucracy often dictates making a decision independent of this process as to content.

Within the training courses there are core subjects of which hearing & vision impairments are not covered ( courses in Disability, age, nursing, individual support).

There are electives that can be undertaken if adequate supervision & resources are available but lacking in certain areas including vision & hearing impairments.

You can see from some of the unit titles, the content is often broad and not necessarily contextualised to any particular client group. I’ve selected a few units for you to look over. For example, ‘Meet Personal Support Needs’ is a generic titled unit. One of the performance competencies in the unit is “Safely prepare for each task and adjust any equipment, aids and appliances” – this is largely left to the interpretation of the reader. So, you could see how the application of the Certificate III in Individual Support is left open to interpretation, and this qualification is the industry standard for care workers in Australia. You’re onto something with the gaps you have identified!

• CHCDIS004 – Communicate using augmentative communication strategies
• CHCCCS026 – Transport individuals
• CHCDIS007 - Facilitate the empowerment of people with disability
• CHCCCS011 - Meet personal support needs
• CHCCCS023 - Support independence and wellbeing

I hope this information is helpful to you. Of course, I would be interested in supporting you in whatever small way I can, particularly as it comes to VET training content and advocating for change.

ACH Group states (Large care provide in SA)

Thanks for your online enquiry yesterday certainly you’ve raised a great point that finding support can be difficult and workforce availability and training is certainly an industry gap.

6. Lack of consistency in appealing & verdicts. Precedents not made public due to (Admin Appeals Tribunal) AAT decision signed documentation agreements.

Recommendations

• All AAT & NDIS precedents are made public & applied to others in a manner which is transparent & equitable.

7. Lack of applying the Code Of Conduct & 2013 section 3:1 (see high lighted areas – I believe NDIA fails in most of these in regards to those with sensory loss especially Deafblindness). I cannot leave home without Guide dog, White cane (for pavement irregularities) & human guide (due to behaviours of other people & crossing roads).

• Understanding their own documents & the added risk their decisions can place a person with a

disability in. By neglecting their duty of care my potential to experience risk in increased substantially

as examples are tabled below.

• Training modules need to be incorporated back into disability training courses & staff providing the care

need to show & demonstrate the standards as per the NDIS Code of Conduct Part 3. (below dot points)

- Adequate worker expertise and competence is central to safe and skillful service delivery

- The obtaining and maintenance of the expertise and competence necessary for the supports and

services delivered

- Having adequate & appropriate qualifications where required for the role

- Developing and maintaining the knowledge and skills required for their role

NDIS Code of Conduct states

https://www.ndiscommission.gov.au/sites/default/files/documents/2018-

06/code_of_conduct_workers.pdf

• Part 3. Provide supports and services in a safe and competent manner, with care and skill

• 36.Obligations under the NDIS Act are intended to ensure safe and quality service delivery to support

positive outcomes for people with disability.

• 37.When a person with disability seeks supports and services under the NDIS, they have the right to

receive those supports and services in a safe manner and from workers with relevant expertise.

Consistent with this element of the Code, factors that may be relevant when assessing if conduct complies

with this element of the Code include (but are not limited to) worker’s actions to:

• Part 3. Obtain and maintain the expertise and competence necessary for the supports and services

delivered

• 38. Adequate worker expertise and competence is central to safe and skillful service delivery. In

      practice, having the required expertise and competence for a role means workers: a. adopting the values

  underpinning the NDIS, including choice and control and person-centred approaches

• b. being honest with their employer and the people with disability they support about their qualifications

  and ability to provide particular supports and services, as well the limits of their knowledge, skills and

  experience

• c. having qualifications where required for the role

• d. developing and maintaining the knowledge and skills required for their role (for example, through

training and supervision provided by their employer)

• e. being familiar with and adhering to policies and procedures established by their employer.

National Disability Insurance Scheme Act 2013 - SECT 3

• Objects of Act

• (1) The objects of this Act are to:

• (c) support the independence and social and economic participation of people with disability; and

• (d) provide reasonable and necessary supports, including early intervention supports, for participants in

the National Disability Insurance Scheme launch; and

• (e) enable people with disability to exercise choice and control in the pursuit of their goals and the

planning and delivery of their supports; and

• (g) promote the provision of high quality and innovative supports that enable people with disability to

maximise independent lifestyles and full inclusion in the community

• ga) protect and prevent people with disability from experiencing harm arising from poor quality or

unsafe supports or services provided under the National Disability Insurance Scheme

Examples of harm experienced. I can no longer access the environment without a suitably trained care support

can & actively assessing & mitigating risk as well as my accredited assistance guide dog & white cane.

• Numerous near misses when crossing roads at appropriate locations.

• Inability to hear hybrid vehicles or

• Cannot see the walk/dont walk signage & many auditory tactile devices at traffic light crossing have been inactivated (Adelaide City Council confirmed) Mike Bailey. Team Leader, Infrastructure Trades, Infrastructure Maintenance

• Hit 4 times to date by cyclists on pedestrian pathways but no assistance received & police action not taken as I could not identify the person.

• Hit once by a skate board user on a pedestrian pathway

• Assaulted at a shopping centre once, & verbally abused many times especially as I cannot maintain social distancing with the use of my guide dog or white cane. A Carer is essential.

• Walked into 5 times to date by I-phone texting persons with one episode of being left on the roadway without assistance when the traffic lights changed. I ended up with a significant injury needing treatment by physiotherapy for over a month due to a torn back muscle.

• Inability to hear & at times communicate my needs at shopping centres.

• Lack of consistency in design & use of disability toilets led to loss of privacy – there is no Standard as to design of opening, closing & layout so I need to have care assistance within any disability toilet.

• Experienced 2 episodes of my now retired & currently active Guide dog being attacked by an off leash & ot under control dog & inability to identify the owner or a description of the dog for which I received no assistance from police or council. Due to the ramifications of the last episode my guide dog almost had to be retired after just one year of our partnership.

• Asked to vacate shops due to having a guide dog three times to date – which is illegal

• Being denied transportation by a taxi driver due to having a guide dog – which is illegal

• Snake bite in my garden – thankfully not envenomated.

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8. Lack of understanding needs when appeal/AAT & not undertaken face to face. NDIA has a case worker &

   lawyer with voice tones I could not understand. Despite informing by email as to my communication

   needs they neglected to act upon this & it was only the assistance from AAT that helped. I informed them

   phone dialogue would not work & AAT went out of their way to accommodate my needs.

Recommendations

- Understanding the varied communication needs of a person with a disability & their obligations

   under the UNCRPD Article 9 & 21.

9. Being treated as though sensory loss (Vision/Hearing) equates to lack of cognition.

Recommendations

- Having a disability does not equate to a lack of cognition & NDIA frequently neglect to demonstrate
    understanding & respect in this regard.

10. Issues with Portal interaction & accountancy practices & regular price guides in accessible formats (last

one released Dec 2020) - One circular frustration I faced recently was

      a. Feedback & request for assistance to my LAC only to be told I have to go through the regional
          office

     b. Only regional office found on Web are the Mission Aust where the LAC’s are located
       c. Contacted LAC again & was told i have to go to a Centrelink office where NDIS are co-located

     d. No apparent email for these locations

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e.

Having a guide dog, no direct transport routes to the Centrelink offices & hence the need to spend money on care support & Centrelink waiting times adds redundancy to getting answers to questions.

f.

Price Guide information & search aspects not disability compliance re accessibility.

Recommendations

• I was recently involved in the testing of the June 2021 release of the Portal upgrade. Feedback over 3 years appeared to not be acted upon. All web sites need to reflect WCAG 2.1 AA Standard.

• The current price Guide can be problematic for self managed persons to navigate & needs to be simplified as well as dissemination each time one becomes available.

11. The impact that NDIS current practice have are often perceived as bullying & neglect to understand the trauma caused.

Recommendation.

• Dealing with any bureaucracy places a person with a disability at a disadvantage & has the potential to create helplessness, hopelessness, PTSD, worthlessness. There needs to be an urgent appreciation as to the impact of staff on the mental health of the client.

12. NDIS needs to champion all Australian Standards to be updated yearly with input from the disability sector so as to encourage safe environments. There are significant savings to be had when environments are maximised as to risk mitigation. Examples include some of the newer technologies that use a touch screen which discriminates against a person with low vision/blind.

Recommendation

• Regular review of all salient Standards

• Input from the Disability sector peak bodies & individuals
• Availability to obtain executive summaries in preferred formats to demonstrate breeches

Added comments

The UNCRPD clearly states that barriers to information (Article 9) & (Article 21) need to be decreased & information provided in my preferred format yet NDIS, continue to disregard & fail their duty of care obligations.

The impact these experiences have led to frustration, helplessness & hopelessness besides having financial impact involving accountant or carer support. I have not found any method by which I can communicate by email as a preferred option.

There needs to be better disability awareness as to vulnerable persons & the impact of bureaucracy on them.

As our society ages the impact of sensory (vision & hearing) impairment will exponentially increase & we need strategies that assist, offer respect & decrease bureaucratic frameworks imposed upon them.

It is estimated there are over 575,000 people who are blind or vision impaired currently living in Australia, with more than 70 per cent over the age of 65 and over 66,000 people who are blind.

In a report, the number of Australians who today have a hearing loss is estimated to be 3.6 million or 14.5% of the Australian population. The figure will more than double to 7.8 million in 2060, according to an Australian report.

Added comments from external agencies

Hello David, Monday, 29 August 2022

Your situation and the situation of many of your DeafBlind colleagues and friends, is disheartening. A systemic approach to enlightening the NDIS as to the unique situation DeafBlind people find themselves in Australia, is the best way to go in my opinion, as there is strength in numbers and it must be so difficult to fight this battle on your own.

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Sign Language Australia cannot offer advocacy services and we do not offer care services, thus we are limited by the support we can provide to you.

May I suggest that research into the supports provided for DeafBlind people in America and England, may provide some guidelines that could possibly be applied in Australia. Both America and England have strong disability discrimination legislation, that could prompt there NDIS to reconsider their stubborn exclusion of family support in extraordinary circumstances, like your own. I am sorry that I am unable to provide any further advice regarding your contest with the NDIS.

Kind Regards,

Hello David, 11 03 2022

As always, sorry to hear of your ongoing struggles. You are certainly not alone. As you are aware peoples plans are being cut across the country in what the NDIA are calling a ‘step down’ approach. This is problematic for many people with a broad range of disability.

There is also a desperate lack of skilled and trained staff in deafblindness anywhere in Australia.

It’s hard to know strategically the best tack to take, so good to see you are continuing a multipronged approach, working with politicians, the NDIA and service providers.

I really do hope things will improve soon.