Appendage to 2022 Sept submission

The issues already documented have continues to reflect a bullying, & discriminatory undercurrent within the NDIA bureaucratic culture & this addition (as granted by Senior Research Office on 23rd Feb 2023 due to complexities in attending the invitation to the Adelaide hearing) tables such. Dear Dr Squirrell, Thu 23/02/2023 3:10 PM Thank you for your detailed and considered response. I understand that the challenges of an in-person appearance can impose a serious burden, and the added risk of Covid. Although this hearing will not have videoconferencing facilities available, we anticipate that the committee will hold a Canberra hearing in coming months, where videoconferencing will be available, using the Webex platform. The Canberra hearing will also be video broadcast, and live captioning can be arranged. I think that this may be a preferable option for you. If this is something that would like to do, please let us know. The committee can accept further attachments to your existing submission. Please send them by reply to this email or to ndis.joint@aph.gov.au Please feel free to contact me if you have any questions. Kind regards, | Senior Research Officer

2020 AAT experience

2022 AAT hearing – my disability needs to deliver evidence were not considered by NDIA &

it was only negotiation with the AAT Registrar in Adelaide that enabled use of Live Captioning that assisted. After presenting the copious examples that underly my case the outsourced lawyer states that they were not interested in my evidence & the only thing on the table was a review of my Plan & I felt pressured into signing a document. Added to this was the lawyers’ comment that not to comply would lead to a Tribunal hearing at my own cost. Subsequent discussions have raised the question of this being in breach of the Model Litigant Guidelines as documented https://ndis.gov.au/about-us/legal-matters/our-model-litigant-guidelines#:~:text=The%20model%20litigant%20obligation%20is%20codified%20in%20the,while%20also%20acting%20in%20line%20with%20the%20law.

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Under the model litigant obligations, government organisations—including the

NDIA—are required to act honestly and fairly while also acting in line with the law. This means we (and the lawyers who represent us) are required to act with honesty, integrity, fairness and in accordance with the highest ethical standards.

Plan 5 & still dealing with a discriminatory NDIA Culture

When Plan 4 ceased it took approx. 6 weeks to gain a Plan 5 & herein lies a significant issue 1. Without discussion I was not informed Plan 5 was available 2. The submitted commentary by the Local Area Coordinator was not discussed 3. I was not informed nor had any dialogue as to having my Choice & Control terminated as the new Plan forced me to have a Support Coordinator & be Plan Managed. Comments 1. I felt that the Plan writer was a. Not acting in consistency with the new CEO Falkingham vision of “Reasonable and Necessary”, said people will “hear me speak a lot about transparency, trust, consistency and compassion. And they’re the values I want for my agency” b. Failed to deliver in my preferred format c. Gave me the strong impression that I was not only deafblind (adult onset) but cognitively impaired & incompetent despite academically having 13 University degrees & my last career being as a senior medical consultant in Rehabilitation Medicine & prior to that was a Director of an Emergency Department & well versed with budgets & accountability. 2. From past experiences I considered a further S100 & AAT process too demanding on my mental health wellbeing as the perceived culture was of harassment, intimidation, neglect, coercion, stalling and bullying by the NDIA and its officers

Communication pathways

I decided to change tactics & demonstrate evidences to Federal Minister Bill Shorten & Federal Minister Amanda Rishworth after Labor won the election. Comments 1. Minister Bill Shortens “Contact” web page was problematic in style but after complying with the box driven format the result was that his office passed

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I am writing in response to correspondence onto a complaint officer & the email response was of a preformatted dialogue & directing me to a hyperlink that failed to answer my question.

2. I did not communicate with the NDIA Complaints Department section as prior attempts & an hours discussion with one of their senior managers failed to achieve any outcomes despite email attached documents to substantiate my grievances. The culture appeared to be to tow a bureaucratic line & no significant resolutions. This maybe recognised in the numerical AAT hearings, S100 applications & outsourced legal costs that NDIA utilises.

I have tabled the evidences with Federal Minister (my Local MP) Amanda Rishworth & await a definitive reply. I summarise below & added evidences of a discriminatory & failed NDIA culture. Initially she contacted Minister Bill Shortens office & the outcome was again as documented above – NDIA Complaints was engaged by Minister Shorten’s office & a preformatted style response was received without actually attending to the issues.

Evidence 1 In summary – I was transferred to a NDIS Planner rather than LAC to work through grievances due to 4 years of ongoing significant issues. I contacted (NDIA Planner Marion SA) multiple times with attachments & no response. I was told I had not presented myself to a nominated appointment so another appointment given. Each time I had responded via the email they gave me Marion@NDIS.gov.au . In the end we were so frustrated we contacted the 1800 nos & no resolution. We sent messages of complaint to Minister Bill Shortens web based email NDIA link – it looks like “AI” response – a hyperlink message saying the answer to my question can be located at this link. In the end my wife took me to the NDIA Marion office & we discovered the emails were all on their computer but had not been passed on. In the end after 11 months of no care support & other bureaucratic nightmares we met (pleasant person at Marion NDIA) along with my RSB Support Coord & RSB Auslan Interpreter. Its now 12 months of no carer support.

Hi 07 12 2022 Trying again as there seems to be a block getting emails through & acknowledged I have tied to confirm Thur 22nd Dec 10.30 So far sent 6 emails through & get the auto message (Email has been logged) but as you said this week only 2 appt’s left I gather you did not receive my prior email requesting 10.30 on the 22nd. Also sent some attachments through but no acknowledgement (Oct 10 & Nov 30) The only contact you gave me was marion@ndis.gov.au or the 1800 number

With the assistance of Christina we contacted the 1800 800 110 nos (three times 2nd, 5th, 6th Dec) as phone call are very problematic for me especially if the receiver is female or accented. They said they sent a message but cannot give me a phone number or direct email. I have contacted Bill Shorten via his web page but no response as to assisting my communication pathway. I have contacted my LAC but no response, as I gather, I have been passed to you & no longer a client of theirs. We are left with no alternative other than getting Christina to bring me to the Marion NDIS office to see if we can sort out how to overcome this dilemma. Can you urgently confirm receipt of emails & appt or contact Christina on her mobile (SMS) 0406 936 689. Its very problematic being deafblind & NDIA communication pathways to support my disability. David David Squirrell To resolve this my wife/carer took me to the NDIA office, & after presenting the dates & times of emails over the past few months, they were located & I was informed that they were not passed on to anyone for actioning Finally a mediation meeting occurred & summarised below Evidence 2 On 16 Jan 2023, I had a 1 ¾ hr mediation meeting with NDIS & succinctly presented my case, my frustration, NDIA’s negligence & adding to risks & that if they did not review my case as a matter of urgency then my 5cm thick of detailed documentation & emails etc would be looked at from seeking a media or legal perspective & they have shown blatant discrimination is failure to understand deafblindness. I gave them a simulation of my deafblindness but the take home message is that there is always another bureaucrat higher up who may overturn or has to counter sign. Some highlights – from todays conciliatory meeting. David was supported by Royal Society Blind Supp Coordinator & an Auslan Interpreter.

1. The most common word they used was “sorry for your experience” so I put it back to them as to what are they prepared to do & what would be a time frame as I have lacked care support for 11 months now.

• 2. They raised that special glasses lens & hearing aids can be reimbursed with a specific letter from an OT or professional for consideration. Prior rejected as medical not disability.
• 3. A mobile cannot be reimbursed but a I-Pad up to $500 can be despite this not fitting in one’s pocket & not as functional for my needs & allowed in WA for deafblind persons. The mobile is not utilised for calls but for the applications enabling functioning in regard to vision & hearing.
• 4. A replacement Guide Dog needs a formal assessment & request at least 8 months before the due date with no guarantee of acceptance. I have elected that I increasingly need human assistance in the environment & can no longer cross a road safely so may not apply for a replacement when Viking retires.
• 5. They agreed that despite adequate & appropriate credentials & care for 12 years they will not pay Christina despite Thin Market issues & Auslan training but became a little uncomfortable when I said words to the effect as to what would happen if we divorced & I made this public as to why NDIA forced me into this or I could get a company to employ her at higher costs but she would only have me as a client.
• 6. They agreed that all my documents had not been read & understood as when they have staff turnover, they lack the time so just make blanket decisions.
• 7. They said that Christina could/might be able to be refunded via my Plan for outside home related work if the Plan manager gave consent & then the costs could be backdated to March 2022 but stated Plan Managers are cautions of audits where an informal family member is involved. The Support Coordinator is going to tackle this one as Christina is credentialed & has all of the clearances, the Invoices were legal in layout & I charged less than NDIA gazetted costs & I am happy to be audited at any time to show no fraudulent activity occurred.
• 8. We have been asked to get OT opinion/assessment yet again re assistive technology, GD replacement if needed, OT, Orientation & mobility, continues support coordination (don’t they realise that when already done I have deteriorated so my needs are greater). A wastage of Plan associated budget.
• 9. They did not care that I am 7am-7pm in need of care/assistance in a range of issues & now that SA has passed legislation that all carer call outs attract a minimum of 2 hrs pay so casuals are not discriminated against, & this is a waste of Plan money.
• 10. They agreed that there is a wide degree of variation between States or Planners making decisions.
• 11. They still suggested I train a carer or pay for them to have Auslan lessons despite this does not happen in a short time frame, is expensive & does not guarantee the person stays with me. Where is Duty of Care & legal liability re risk mitigation.
• 12. It appears I may now have won in getting all correspondence by email or paperwork in 16 font (they don’t do 14) in word format. (I await results of this)
• 13. They agreed that documents presented at AAT hearings are not available to planners but don’t publicise this.

Evidence

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14.

They are not allowed to have personal emails used as communication so you have to use enquiries@ndia.com.au & put the reason or potential contact person on the subject line & hope it gets passed on. They are working on a better system but did not say which decade. So what would happen if I put a planner involved in my case etc on the subject line & they were no longer available. As I proved my past attempts did not get passed on by the receptionist & I literally had Christina take me to their office to solve this issue. None of my emails had been passed on once a person allocated. Also sick leave, long service leave, annual leave, resignation etc might mean it was not passed on to the correct person or appropriate person.

15.

I raised that it is potentially illegal to remove autonomy, & choice & control without discussing with the person. This negated transparency, responsiveness, respect, empowering & connectivity which the Participant Service Charter & Guarantee state is their commitment.

16.

I raised that the Code Of Conduct they expect of carers is negligent if they force me to have someone not appropriately trained & credentialed & could open them to risk associated litigation should something happen – I read the Code out to them.

17.

The Portal now has a participant pathway to view all submitted documents.

18.

They said deafblind is not considered a complex disability.

19.

We tabled the waste of time to have to contact 20 odd carer organisations (after I did for the AAT) to prove Comm Guides are not available. This is when it came to light that they were unaware this already happened but as was before the AAT so they did not have access to the documents.

20.

They did not seem upset that I had written submissions to the Royal Commission, Senate enquiry, Joint Parliament enquiry, & Bill Shorten – Its almost as though any outcomes are not taken seriously & lack teeth to bring about change in the likes of deafblindness – I guess our numbers are not significant & we lack a loud voice (no pun intended).

Evidence 3

The issue of no smell or taste (encephalitis 1979) adding to severe impairment of vision & hearing is not complex despite being told in mid 2022 that I would be granted such a Planner was rejected & this decision could not be reviewed.

Wed 11/01/2023 3:09 PM In relation to your query regarding the referral to the Complex Support Needs (CSN) planner, the outcome from them is you have not been found suitable for the Complex Support Needs pathway. Their decision regarding CSN suitability is not a reviewable decision under the NDIS Act. WLN148

Evidence 4

Some of the decisions to resolve were overridden by the Planner’s up-line manager

MC22-003862 Dr David Squirrell squirrell2@bigpond.com Dear Dr Squirrell

Thank you for your emails of 30 September and 15 November 2022 to the Hon. Bill Shorten MP, Minister for the National Disability Insurance Scheme, about the issues Deafblind people, including yourself, experience when engaging with the National Disability Insurance Agency (NDIA). The Minister has asked me to reply on his behalf. I apologise for the delay in responding.

I appreciate the time you have taken to provide feedback about your experiences with the NDIA. It is not the NDIA’s intention to communicate with a participant or their family in a way which will upset or cause any distress.

                                , NDIA representative, contacted you on 30 November 2022 to acknowledge your correspondence and discuss your concerns. I am advised then followed up on your phone conversation and arranged for your National Disability Insurance Scheme (NDIS) Planner,            , to organise a meeting to further discuss your concerns about your NDIS plan.

I have been advised facilitated a face-to-face planning meeting on 16 January 2023 with yourself, your wife Christina, Support Coordinator, and AUSLAN interpreter, . During this meeting further information was provided to you in relation to your Assistive Technology (AT) request, including the option to self fund the difference between the NDIA approved AT iPad, and the requested iPhone 14.

During this meeting you advised you have made several attempts to secure suitable support workers in your local area, but you have been unsuccessful in sourcing one. I further understand the NDIA has previously discussed your requests for Christina to be paid as your support worker, and that further information was provided to you about this during the meeting. As previously advised, and reiterated in your most recent meeting, funds in your NDIS plan are not currently approved to pay Christina for the support she provides you.

The NDIA makes sure supports are provided to participants to help sustain and maintain their relationships with people who are important to them.

Evidence shows that care provided by family members is not good practice because of the potential impact this may have on family relationships. For this reason, the NDIS generally does not fund family members to provide supports. There are very limited situations where the NDIA can consider this.

The NDIA will consider all other options before funding family members as supports. More information is available on our website here www.ndis.gov.au/about- us/operational-guidelines/including-specific-typessupports-plans-operational- guideline/including-specific-types-supportsplans-operational-guideline-sustaining- informal-supports

I am further advised based on information you have provided about paying Christina for the support she has provided you, Core funding in your current NDIS plan has been changed from self-managed to plan-managed.

I acknowledge you previously requested to be allocated a Complex Support Needs (CSN) Planner, and that your request was declined. I can advise that NDIS Participants are identified for the CSN Pathway by the complexity of their situation and personal factors such as being homeless or returning to the community from living in residential aged care. Involuntary or voluntary involvement with particular government systems such as Justice or mental health would also be factors which would necessitate entry to the CSN pathway. More information on the pathway is available at the following website: hhttps://www.ndis.gov.au/news/1002-improved-ndis-planning-peoplecomplex- support-needs

I understand your concerns about a lack of supports for Deafblind people in your local area. I can advise the NDIA, in partnership with Commonwealth, state and territory governments and key stakeholders, is progressing a more flexible approach to address NDIS market gaps nationally. The NDIA monitors markets and identifies, prioritises and intervenes in markets to address supply and demand issues that may be limiting participant access to disability supports. The approach is flexible and iterative, recognising that a one-size-fits-all approach is not suitable to address market gaps faced by certain geographic locations, particular cohorts or disability support types.

The NDIA’s approach is tailored to local circumstances, and may include improving plan implementation, improving information signals, market facilitation, coordinated funding proposals and, if required direct commissioning of services. Direct commissioning or coordinated funding packages enable participants to pool plan funding to more efficiently secure services from providers. Further detail on project locations can be found at on the NDIS website at www.ndis.gov.au/providers/marketmonitoring-and-intervention

I would like to thank you for your suggestions about how the NDIA and NDIS can be improved when it comes to engaging with Deafblind people, and for your feedback.

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The NDIA takes feedback seriously and relies on feedback to identify what is working and what can be improved. If you have any further queries regarding your current NDIS plan, I encourage you to contact , NDIS planner, on 1800 800 110 or at enquiries@ndis.gov.au and attention to L. Thank you again for writing. Yours sincerely

Branch Manager Internal Review and Complaints Branch National Disability Insurance Agency 31 January 2023

Evidence 6 Communication barriers of a failed system. Despite compliance with the stipulation of email correspondence to a designated person the e-mail was still rejected not only from me but also the Support Coordinator . Heading of e-mail stated all of the stipulations & repeated again in the e-mail once opened. We both had similar as did an interstate friend.

Dear David, It is madness! I received the same from NDIA Inquiries. To date, I have not received a reply to the e-mail I sent to them. He replied - Thank you for your e-mail. I am unsure why you can’t identify me. I very clearly stated my full name and NDIS number in the subject line of this e-mail.

Reply received almost identical wording to myself & my Support Coordinator Good Afternoon Thank you for contacting the National Disability Insurance Agency (NDIA). Unfortunately, the e-mail you sent us did not give us/ enough information to identify which NDIS participant your enquiry relates to. In order for us to assist you with your enquiry, can you please provide us with the following information:

• NDIS reference number
• Date of birth
• Full address
• The details of your preferred method of contact (eg your phone number or email) Once we have received this information, your enquiry will be forwarded to the

relevant team to make contact with you via your preferred contact method.

   Please note that ALL email replies are to be sent to enquiries@ndis.gov.au

   Kind Regards
 Ann
   National Contact Centre General Enquiries

This also raises the question as to the Planner in question not being available for a number of reasons – leave, left, etc……as to who the email is directed to or addressed to.

Evidence 7 wastage of money & resources when they already have the evidence Total disregard for evidences from RSB, GDSA, Deaf Can Do, DeafBlind Aust, Able Aust, Senses WA, Physiotherapist, 4 OT reports, Hearing Aust……I have not attached for brevity & confidentiality. I am now having new assessments (at NDIA Plan expense) from orientation & mobility, RSB Guide Dogs, Assistive technology, Risk assessment OT & Exercise physiologist (re deafblind vestibular dysfunction & falls risk)….. The bureaucrats fail to understand Deafblind is progressive & delay tactics will not create an improvement. I can no longer venture out without white cane, guide dog & a trained human who is Fit for Purpose. NDIA bureaucracy has all but taken away by confidence, my dignity & at times my will to go on.

Service Providers of care support

Evidence 8 – we wrote to 20 care organisations in 2020 pre AAT hearing) & again 2022 to substantiate a Thin Market exists so that the needs deafblind people have cannot be catered for by their workers & 100% agreed. This was tabled to NDIA but still rejected with comments such as to use the capacity Building funds to train someone in Auslan (it takes at least 2 years with weekly tuition not 4-6 weeks) but this is not my role.

I have evidences copious documentation (original submission) as to Carer training courses not having specific modules into sensory loss (Hearing & Vision) & that I raised at the 2019 Quality & Safeguarding forum Sydney in my capacity as Vice President Deaf Blind Australia. Nothing has eventuated over the 5 years I have repeatedly raised. I cut/paste from my “NDIA planner enforced” Plan 5 support coordinators from Royal Society of the Blind & .

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From Tuesday, 12 July 2022 David and (previous RSB’s Support Co-ordinator) contacted a range of service providers (close to 20) in order to identify possible suitable supports. Unfortunately, we were not successful. Please refer to the communication emails attached, which state clearly they cannot assist David with the appropriate supports. This demonstrates that David’s communication needs are unique and this is a barrier to service provision. David undertook the same exercise re a S100 with the same result leading up to his Administrative Appeals Tribunal hearing of Dec 2020 & is on file with NDIA & was accepted with Plan 4.

   David’s needs falls into the definition of NDIA’s Thin markets including specialised
   supports with insufficient or low demand & complex needs. The NDIA states that
  workers must have ‘expertise and competence necessary for the supports and
   services delivered’ NDIS Code of Conduct section 3 point 38 & hence is both
   reasonable & necessary

   David’s wife, Christina was, prior to marriage, his part time then full time carer (for
  seven years) & has the following skill & experience set

• ABN

• Police Clearance

• Dept Human Resources certification re aged care, disability care & vulnerable person status

• Weekly Auslan tuition for over 2 ½ years so as to assist communication with David’s hearing

• decline.

• Over 10 years’ experience in ACH Group as an aged care giver before she resigned to

• specifically care for his needs as he could not get such from traditional providers of care

• support.

• First aid certificate

   His carer, & now wife is availability in a manner that is respectful & ‘fit for need’ &
   ‘ensure safe and quality service delivery to support positive outcomes for people
   with disability’. (Code of conduct 3.36) As Part 3 of the code of conduct states -
   Provide supports and services in a safe and competent manner, with care and skill.
  Employing Christina meets the criteria within the Code & to use a more expensive,
   untrained (for specific Deafblind needs) person potentially provides an unsafe,
    potentially incompetent level of care & placed him is significant disadvantage, which
      is against the reason for the introduction of NDIS at conception. NDIS states ‘No
   disadvantage means the NDIS will make sure you are no worse off’ yet he maintains
   that for DeafBlind disability this has occurred due to significant assessor lack of skill,
  knowledge & understanding.
  

  An outcome of the Perth Jun 29th-30th 2022 international DeafBlind Conference raised that the same issues exist regardless of location in Australia that there are no

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specific pre-employment or postemployment sensory loss modules & inadequate

Comm Guide, Chuchotage & care supports for the most isolating of disabilities despite yearly advocacy & submissions. Senses Australia, DeafBlind Australia & Able Australia & their legal teams are meeting with the Royal Commission on Wed 6th July as to NDIA’s lack of resolving the needs & placing many of their members in discriminatory positions & to deny them the same rights as enshrined in the DDA & UNCRPD, & NDIS Code of conduct re carers.

From 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 of David’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 amongst people who are DeafBlind because the incidence of this disability is rare, finding appropriate supports is a challenge.

David has a diagnosis of Usher’s Syndrome and this will result is a progressive decline in vision and hearing and which has already manifested as a significant balance impairment and spatial disorientation, which I observed whist attending a meeting

at his home recently. David also has Neurofibromatosis type 1 which is also a neurological disorder with increased skin/nerve tumours and risk of meningioma.

I believe that for David to be supported to achieve his goals, it would be impossible without the support of his wife to provide communication support. People who are DeafBlind all have unique communication needs. This is especially true, whilst coping with a progressive disability that will require ongoing innovation and adjustment to their expressive and receptive language mode and skill.

At our recent meeting David’s wife was required to sit alongside David and perform this type of communication support, throughout our meeting. Both David and his wife were unaware that I have experience as a chuchotage interpreter and was observing their communication strategy.

I believe this type of communication support (chuchotage) and the need for David to access Auslan signing support, which his wife is also required to provide, is outside of the supports and skills a spouse is normally required to provide for their husband or wife. Added to this is the fact, is the reality that on a day-to-day basis David’s additional health issues can mean that he is quite unwell at short notice. This makes it extremely difficult to engage qualified interpreters and/or communication aids who are familiar with David’s unique communication needs on a regular basis. It is also difficult to provide training for staff who could work with David. Who is responsible for providing this training? Who will pay for this training? Who will ensure that the appropriate level of skill is achieved?

I believe there could be a cooperative approach to David’s supports which would allow him to achieve his goals. This would include services provided for non - communication supports, such as cleaning, house maintenance, cooking etc., whereby his wife could assist David with instructions and simple communications with contractors. For any community engagement and or committee work, whereby David is required to fully participate in communication exchanges of some duration, his wife should be formally engaged and renumerated for performing this communication support.

I require support from the NDIS to realise the achievement of my client’s goals. I have investigated many providers who have all stated that they are unable to support David’s unique communication needs. Please advise of any avenues for support, I may have been unable to access. I await your suggestions.

Added to this, due to NDIA insisting we prove as I had prior done for my 2020 AAT hearing, we communicated with 20 carer organisations & 100% stated that they lack staff with appropriate skills to cater for my needs. Yet my wife/past carer over 12 years is denied. (Part time carer became my full time carer & then in 2019 my wife) Qualifications

• Cert 3 Aged care

• Cert 3 Disability

• Cert 4 Community & Home

• Dip Enrolled nursing

• Auslan 2 ½ years

• Special areas - vision & hearing impairment

• First Aid & CPR

• NDIS Worker Orientation Module

  Checks & Clearances 2020
  

• National Police

• Vulnerable persons

• Disability

• Aged care

The NDIA totally refuses to look at the needs, Thin Markets, evidence & costs to the Aust tax taxpayer. Example – 5 hrs per week at lets say $50/hr (actually NDIA rate higher) over 52 weeks = $13,000 Via an agency the cost is greater but with a person that is not Fit for Purpose Actually Christina supplies 3 hr per day in the home, & then I cannot go out without such assistance. She is Fit for Purpose, has adequate credentialled skills, & is available. It is true that a contingency plan is not available if she is unwell but then we have repeatedly informed NDIA as to a deficit in training programs & Fit for Purpose skilled carers. The Quality & safeguarding 2019 Forum was also informed but appears to have failed initiating any change. The NDIA Culture is one of not reading, not comprehending, not doing basic maths & not willing to assess people of an individual basis & creating an environment of bullying into submission.

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My external to home needs fits into an internationally accepted need, but which NDIA fails

to understand or create a culture of training people to be fit for purpose via sponsoring training.

The complexity & current culture of NDIA was raised at the Perth held International Deafblind Conference 2022 but various presenters & SensesWA lawyers. There is correspondence from the SensesWA lawyers to & from the past CEO Martin Hoffman but as he had to leave the dialogue stalled.

A recent Auslan interpreter documented a report is tabled

  To whom it may concern.   11/01/2023

   This is a follow up letter of support for David Squirrell.

 A previous letter of support was also written for David by a colleague                        .
   Please read      ’s letter before mine.

 My name is                         , and I am also a qualified NAATI- Auslan Sign Language
    Interpreter. I recently met with David alongside his wife Christina and his Support
   Coordinator             . We discussed the ongoing concerns David has and the
  communication strategies him and Christina use when we met. They have not
  changed since     wrote her letter back in April 2022.

   Everything that was stated back then is still ongoing and we are no nearer in
   resolving David’s concerns.

   David is now more isolated than ever. He has lost contact with his friends over the
   years, due to it being difficult for them to communicate with David. David mentioned
       it being, just to complicated, in trying to find the right venue, due to the noise, the
    lighting, and the communication. Christina is the only person that can assist David
   with his personal care, housekeeping, cooking, shopping, communicating and
    practically everything else a person needs on a day-to-day basis. This is taking its toll
  and they need some support to find a resolve to these ongoing issues.

In a previous email that David forwarded to me. It states that, his case would not be considered appropriate for a Complex Needs Planner, due to his needs not being complex! Unfortunately, this is inaccurate. In fact, DB is a complex need disability, and David has many documents he can show you that state this unequivocally.

David has been fighting to receive the supports he needs now for many years. He is no nearer in achieving this. Meanwhile his health is continuing to decline and the support he has been actively advocating for has been ignored.

Please can we have open communication and try to work together as a team in supporting David with his needs. Are we able to have easier communication for David. He is unable to use the phone, sometimes the emails that are sent to David with attachments are unreadable, with his vision loss. A lot of the emails that David carefully types, are not the easiest to do. With his vision loss, you can imagine how long one email for David would take and he is having to do hundreds, just to try and book in meetings, find support, and get responses. Communication is number one and this needs to be made easier for a person like David who has multiple sensory losses’, on top of several other medical issues that are explained in one of David’s many emails etc.

Kind regards (name removed for confidentiality)

Also this email from Sign Australia (Auslan) 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.

   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

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Kind Regards, Thanks and Cheers, (Name removed for confidentiality) Sign Language Australia

Comm Guides (Communication Guides) are critical for deafblind persons but few exist in Australia. Why undertake an expensive Auslan course to become a carer on a low income when you can have a greater income as an interpreter & why be a certified carer then do an expensive course for a limited clientele.

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.

Commguids 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 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/

Evidence 9 – Thin markets & Fit for Purpose Hence for many in a similar situation the decision of paying for a Fit For Purpose person being rejected often leads to a family member being denied access to the opportunity to have a career as they have to sacrifice this to be an unpaid carer support person & at times increases the financial Burdon. There needs to be checks & balances but generically the deafblind community has substantiated needs that are clearly validated & the culture of NDIA is to totally ignore the evidence. Deafblind principally fits into the second point below. Thin Markets can be considered as 1. Geographic 2. Insufficient demand for specific training of a skill set I have faced NDIA stating that I should use my funds to train a carer – Auslan is not a 3- month training course but needs in the order of 2 years to gain fluency. If I used my budget then I still have no guarantee of skill set 7 that they will remain available to my needs.

I reiterate fit for purpose in NDIA’s own documentation NDIS Code of Conduct states NDIS Code of Conduct 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

Evidence 10 – lack of internal consistency There is also a lack of consistency within decisions made by NDIA staff as seen by this

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As outlined under section 3(1)(c) of the NDIS Act 2013, you are able to use the principle of choice and control in the pursuit of your goals and the planning and delivery of your supports.

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

So this might imply that due to my Choice & Control being removed without any transparency my rights to employ Fit for Purpose is also truncated & this is a discriminatory decision & reflects the culture of an organisation that is supposed to engage with me & improved my quality of life.

A senior staff member of Able Aust & also on our DeafBlind Board states Hello David, 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. Meredith

Meredith Prain (she/her) PhD CPSP National Head of Research and Centre of Excellence - Deafblind Able Australia & Board DBA

NDIA shows a total lack of understanding as to their blatant disregard for deafblindness needs & the destructive nature of pressures this can place on families due to their bureaucratic, non negotiable work practices.

Evidence 11 – Peak Body Deaf Blind Australia’s attempt to discuss issues with Bill Shorten

DeafBlind Australia presentation to Minister Bill Shorten

In Dec there was a planned meeting with Peak Bodies to discuss issues but the meeting was highjacked by dominating persons. I assisted the CEO of DeafBlind Aust in documenting the issues that can be seen as a culture detrimental to our deafblind persons in Australia. Recommendations are also tabled. I tried submitting this via Minister Shorten’s Contact Us web interface & to date no response

 **CEO Meeting with Bill Shorten** 23rd Nov 2022

 What do I think about the NDIA

   the failings of NDIA for the DB community.

         1. The LAC writes a report & often fails to capture the important information due to a poor understanding of activities of daily living & functional assessment.
        2. The NDIA staff write their Plan without contacting the client when necessary.
        3. The client finds out about the Plan which is often or usually not in the preferred format.
        4. The client communicates with the LAC & resolution infrequently occurs.
        5. The client tries to communicate with the complaints pathway & is often stonewalled & told to work through the LAC.
        6. The client lodges a S100 appeal & has no communication from the Planners as to rejection of appeal.
        7. The client faces frequent LAC changeovers & yet another person who does not understand the client takes over.
        8. The outsourced legal process uses bullying tactics & the T Documents for AAT appeals are not written in preferred formats. Dismissive & bullying tactics are commonplace.
        9. The NDIA never asks for outcome feedback to complaints or appeal decisions or process.
       10. The NDIA do not seem to take into account supporting evidences from clients from substantiated sources or allied health or specialist reports.
       11. The NDIA falls short of the UNCRPD.
       12. The NDIA does not ask or take into account why package money may not be used (so ends up with a reduced budget in the next Plan).

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What Can They Do Better

Improvements Needed

• Have staff that are educated for the specific needs & variations of people that are deafblind.
• Consider the points above & address them.
• Look at the various submissions & not just file them away.
• Improve the way that feedback or complaints are tabled & actioned on the communication boxes on Bill Shorten’s web site. It is experienced that responses usually don’t actually deal with the issues raised.
• Have documents & communications in the person’s preferred format.(UNCRPD, DDA)
• Get rid of outsourced lawyers who are characterized by being dismissive, arrogance & bully clients.

Definitions

Evidence 12.

There is also an issue of definition

Legally Blind

A person is considered legally blind if they cannot see at six metres what someone with normal vision can see at 60 metres or if their field of vision is less than 20 degrees in diameter. Government departments use the term ‘legally blind’ to define a person whose degree of sight loss entitles them to special benefits.

Legally deaf

Hearing loss is considered to be legally deaf when an individual has a permanent hearing impairment that significantly affects their ability to communicate and participate in daily activities. (counties vary re 60db -70db as their baseline)

Deafblind – no internationally recognised definition due to many variables such as not fulfilling both criteria simultaneously, but the impact prevents functioning within a vocational, social or recreational environment. I am both legally blind & legally deaf by above definitions.

Deafblindness is 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.” Deafblind Australia (2018) Dual sensory loss and dual sensory impairment are other terms that are used for deafblindness. https://www.deafblindinformation.org.au/about-deafblindness/

Evidence

Incomprehensible communications as to lack of understanding

Evidence 13

Over the past 5 years I have received many statements in the form of email correspondence that substantiated a lack of understanding & care from those in decision making roles – a few examples include

• “Move to a location where you can obtain services” – this totally ignores social support networks, Thin Market paradigms, & inability to get a Mortgage on a disability pension.
• Train carers out of my funds without consideration of being Fit for Purpose or available at the end. It is not my role as a participant to pay for a person’s skill set.
• “You don’t fulfil the need for transport allowance as you have a guide dog that can assist you catch public transport & locate where you want to go”. Don’t they realise Guide dogs are trained for regular routes & general safety, but cannot read numbers or signs.

Conclusion

The current CEO – Rebecca Falkingham – stated the pillars of transparency, trust, consistency and compassion are part of her platform but to date I cannot experience any within the current culture of NDIA & compared to pre NDIA as a participant I am in many ways worse off & left with a sense of hopelessness. https://www.ndis.gov.au/about-us/policies/service-charter - transparent, responsive, respectful, empowering, & connected

Evidence 14.

I have documented my experiences to the Senate enquiry, Disability Royal Commission, Minister Shorten, Media, Politicians & remain unconvinced that definitive change is soon to be experienced. A participant can face fund reduction due to not using without consideration as to the reasons which are often legitimate such as lack of availability of appropriate fit for purpose care support, covid, lack of permission re ‘reasonable & necessary’. The expensive reports from professionals seem to be filed & not read or poorly comprehended & then asked to repeat again at considerable costs to the taxpayer. An

example is that from the recent round of discussions they request evidence of need which has been supplied several times already. Hence Plan money is wasted in

• The Support Coordinator’s time spent reinventing the wheel
• Assistive technology review
• Risk assessment from an OT
• Orientation & mobility report
• Guide Dog use report
• Vision reassessment (when already legally blind with a progressive condition.
• Exercise physiologist re vestibular dysfunction common in people with Deafblindness I have not tabled my daily personal needs or risks faced & actualised in this report as personal information but happy to discuss at any interview. I conclude with a screen save of the last paragraph from a report tabled by my Physio to NDIA & apparently ignored

David 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, SA Past President 2012-2022

• DeafBlind Australia National Board Vice President

• Paul Harris Fellow & Member Paul Harris Society (Rotary)

• 2019 Blind Aust of the Year Award finalist

• 2021 Australian of the year award finalist

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