Joint Standing Committee on NDIS Culture Submission

Introduction

My name is , I am my grandson’s NDIS Child Representative. My grandson’s name is . He is 9 years old and his disability is ASD Level 3, non-verbal, ADHD with a significant intellectual disability. He came to live with me in June 2020 and stayed with me until December 2021, when we began to transition him back to his home with his mother and father. Him coming to live with me was a family decision because, as an educationalist, I was able to introduce/establish routines, boundaries, and structures to help my grandson learn to self-regulate, use ACCC methods, computers, and to sign. In addition, to begin to use words to request, to self-comfort and sleep and to help him to participate in his community. I made the decision to send him to after school-care with the PCYC because the stress of looking him was affecting my health and because I recognised that he was starting to become socially aware and he needed to reconnect with his parents. To access after-school, he must have a support worker because he is what is called “a runner”, and after-school care facilities are not secure.

I am in my 75th year; after 18 months, I found caring for my grandson was very stressful and tiring and it was affecting my health as stated above. However, in that time and with the funding from his NDIS plan, my grandson’s progress was significant. I am still very involved in this progress and I want him to continue his positive progress.

The role I have fulfilled for my grandson and his parents has been that of a carer and Support Co- cordinator. I have not only cared for him, I provided emotional and physical support to him. I developed all his NDIS goals, organised and liaised with his therapists, documented all his routines and I developed social stories to help him learn. In addition, I have helped his parents to create the necessary routines and boundaries to help my grandson continue to progress and develop, but I cannot afford to pay for shortfalls in funding for capacity building or core support.

My submission will address the following issues:

Adjustments in Funding Recommendations

It is then up to the NDIS to approve or refuse LAC recommendations.

The 2018 report, ‘Evaluation of the NDIS’ (Mavromaras, K., Moskos, M., Mahuteau, S., & Isherwood, L.) stated that NGO LACs felt that ‘…they were not doing what they were employed to do.’ (p. 83). Sadly, participants and their families believe LACs are not doing what they are supposed to do either and this remains the case. I often hear the complaint from other parents and carers that LACs do little during meetings other than informing participants what they are not entitled to receive in funding. It is a very negative approach.

Participants and their families want LACs to help them obtain the funding needed to achieve their goals, as well as develop plans that give them a good life, and permit them to exercise some choice and control, and positively engage with the NDIS. LACs should help participants obtain the evidence required to support funding requests. Instead, participants feel they are left to negotiate the complexities of the NDIS without any LAC assistance.

LAC Time and Training

It is clear NGOs and LACs are under pressure; research and a number of reports highlight a high turnover of LACs. This year when I called Carers Qld to arrange a plan reassessment, I was told to email my grandson’s reports and documents and they would put my grandson on the list. The unnamed receptionist said I would have to wait for a response; this does not meet the NDIS Participant Guarantee. I complained to the NDIS and within a week had a plan review appointment.

The LAC who conducted my grandson’s 2021-2022 plan review was no longer working at the North Lake’s office and so we once again had another new LAC doing the plan review/assessment interview. Each year we have had a different LAC. The few times we called Carers Qld, we were connected to a different ‘no name’ LAC or admin assistant. When I emailed Carers Qld, their response was from a generic pitc.lac.northlakes@ndis.gov.au email address with ‘no name’ other than NDIS LAC PITC Program. When I complained about not knowing who I was dealing with, I was advised:

“It is common practice for our team not to include a name on correspondence sent from this email, as it allows any member of the enquiries team to answer your enquiry. This practice factors in for when staff are on leave or unexpectedly unwell and allows our team to provide a timely response to participant enquiries” (Carers Qld email 18 Aug 2022 at 11:10).

This does not mean this practice is either good, acceptable or a standard practice, but indicates they do not have enough staff to meet their responsibilities. Such constraints make it difficult to develop trust. It is a symptom of a system that is not working effectively or efficiently and one that is task oriented and not client centred.

Human services support and care work depend more on trustful relationships than other occupations. Establishing and maintaining effective relationships with participants and their families is vital as it effects how both LACs and participants are perceived. If these relationships are not well-established, or sustained, or if they fail, participants and their families will not develop trust LACs. They will not think LACs work to help them develop plans that best meets their needs or that they have the participants’ best interests at heart.

LAC training appears to concentrate on what funding participants are not entitled to; the parameters within which LACs are expected to work are restrictive and they lack alternative approaches by which to conduct review interviews. It is apparent that LACs do not have the time to build and establish trust with their clients. They fail to ask many of the necessary probing or relevant questions to develop good plans; this leaves participants and/or family to fill

• In the gaps without really understanding all the intricacies and complexities of NDS legislation and terminology, or what evidence is required and how to present that evidence. They do not know how to write a goal that LACS and the NDIs understand. They cannot phrase funding requests properly to avoid automatic rejection and/or how to prepare good carer impact statements.

Planning interviews

to date, the planning interviews I have attended have been disordered with few questions from Lacs. It seems there is an indifferent an uncaring approach to planning reviews. Parents and carers sometimes need help to bring all the information and knowledge from therapists and their daily life into play. Explicitly communicating what they deal with on a day-to-day basis. This is not a case of how do you know what you don’t know, but a situation where parents/carers are regularly dealing with so many difficulties that the knowledge and practice becomes inculcated and instinctive. parents and carers do not think about what has to be done consciously, they just deal with it because they have no other defensible choice. The Carer’s Impact Statement is supposed to bring these issues to the surface. The purpose of carer’s impact statements is to help LacS and the ndis understand the issues that affect participants and their families every day and the effect the disability(ies) has on everyone’s life. Trying to cope with extraordinary issues, remain sane and have some normality in their lives is difficult. Routines and problems have become systemic and instinctive, second nature to them; they do not consciously think about all they do every day. Participants and families need help to write carers impact statements. Planning review interviews should be more structured using, for example, tools like Williams (2009) semi-structured routines-based interview™ (rbi) tool. It helps Lacs develop a sound and better understanding of their clients, realise the issues faced and how participants and their families manage or do not manage. Planning interviews are about more than reading reports or letting the participant/family ramble on using incorrect terminology with hopes of being understood to get funding that will allow them to attain reasonable goals for a good life, to exercise choice and control and engage in their community in a meaningful way. Another tool that should be used in conjunction with the rbi instrument is the eco-map. An eco-map is a graphical representation that shows how all of the parts at play in an individual’s life interlock. Eco-maps improve a LacS understanding and build a relationship with participants and their families. They facilitate Lac question development, and highlight the social contexts of relationships within the immediate and extended family and the community. What remains consistent with our experience of LacS and planning review meetings is a deficit of trust that LacS will help develop a plan a meeting that best participant’s needs. This is also highlighted in the 2020 “Parent Experience Of The National Disability Insurance Scheme (NDIS) For Children With Hearing Loss In Australia” (Barr, M., Duncan, J., & Dally, K.) research paper. This paper reveals how parents found the NDIS system perplexing, along with how they felt they lacked the education and advocacy skills to manoeuvre through the NDIS process and to prepare evidence to justify funding for the participant. This supports that there remains little trust in LacS to provide the required assistance for developing a good plan. during Covid, participants and/or their family were given the option to attend a planning review at the NGOs office, or to have the meeting via Microsoft Teams. Both these methods for plan reviews prevent the development of any relationship or understanding and trust. They do not help Lacs understand participants or their families, and do not help Lacs to develop a sound knowledge of participants’ disability. my grandson’s last two plan review meetings were done via MS teams.

The LAC was, and is, unable to see the conditions and changes that we made to help my grandson progress, and to cope with and manage his disability.

The online interview limited and prevented a better understanding of what the family and his carers are doing to help him develop. For example, the use of ACCC communication methods, using images and apps that allowed my grandson to make requests, give responses, follow routines and know their boundaries. They cannot see all the images stuck to walls and doors to help my grandson communicate and learn. These are the visible supports that are recommended by a therapist to help the family and his carers help him. It does not show how we have reorganised our homes and our lives. Home review meetings allow LACs to detect any safety issues and underscore the importance of funding for addressing any identified safety issues. It is unfortunate that Covid restrictions have prevented LACs from conducting home plan reviews, which continues to exacerbate the trust issue.

3. Disability Support Workers, Online Platforms, and Allied Health The NDIS scheme has had the effect of producing a new gold rush, a ‘cash cow’ where some entrepreneurial organisations and people believe the system can be exploited for easy money. There are some rather unethical and dubious service provider organisations, disability support workers, and allied health professionals cashing in on the NDIS bonanza. Currently, in Queensland to work in this sector, a person is only required to hold a Blue Card (working with children and young people) and/or a Yellow Card (working with adults with disability). To qualify for a Blue Card (working with children), a person only needs to not have a criminal conviction related to any child protection legislation. Just about anyone can have one of these cards now. There are multiple people working, or wanting to work, in this sector that have no qualifications in disability support work. I would like to point out to the committee, a Certificate III in Individual Support (Disability) is equivalent to a high school year 12 certificate. At a Certificate III level, individuals have basic factual, technical and procedural knowledge in a defined area of work and learning. Their skills are rudimentary and they are qualified to undertake only routine activities and only able to provide solutions to predictable and sometimes unpredictable problems. I stress individuals at this level are deemed able to apply knowledge and skills to demonstrate autonomy and to take limited responsibility in known and stable contexts within established parameters. In other words, supervision is required. The 2018 “Individualised funding and its implications for the skills and competencies required by disability support workers in Australia” (Moskos, M. and Isherwood, L.) report concluded that disability support workers needed different skills to better provide choice and control, to be client-focused and to provide person-centred care. While that may be in progress, there is still a long way to go and this needs to be addressed.

3.1. Disability Service Providers technically service provider organisations supply people to provide the support (other than the basic needs of living) needed for a participant with a disability to allow them to live in a non-institutional setting and to participate in their community. some service provider organisations expect support workers to do a Certificate II or III in Individual Support (Disability), but often aspiring support workers are put to work when they have no qualifications or are in the process of starting or completing a Certificate II or III. These qualifications are insufficient. many service provider organisations have decided that a 3-hour shift is the minimum shift. while this is somewhat understandable given issues around employing and keeping support workers, the disability support workers’ award, ’Social, Community, Home Care and Disability

Services Industry Award [MA000100]’ (SCHADS) clearly states that the minimum shift is 2 hours.

If the NDIS does not approve sufficient Core Support funding that takes this 3-hour minimum shift into account, participant’s goals become difficult to achieve and the budget is blown long before the plan is due for review. Our family has unsuccessfully tried to renegotiate with several service provider organisations to reduce the minimum shift to 2-hours to make my grandson current funding last the duration of the plan. Service providers are still insisting on the 3-hour shift minimum despite the NDS SCHADs information webpage on changes to the SCHADs award stating that the minimum shift is 2-hours.

Is the NDIS aware of that service providers are enforcing a 3-hour minimum shift? If so, what is the NDIS doing about this?

Online Support Worker Web Platforms

Many individuals looking to work as disability support workers use online platforms like Mable. Often these people have no qualifications or, if they do have qualifications, they believe, for example, that they can work as a disability support worker and be paid as an enrolled or registered nurse. Some have limited experience in aged care and think that experience is sufficient for working with children with disabilities. This is simply wrong.

The most annoying aspect of the online platforms is subscribers are told they can negotiate their hourly rate. While it is correct that negotiations can be conducted, it is unreasonable that unqualified individuals with ABNs expect to be able to charge the full $62.17 per hour as stated in the NDIS pricing guide. The Disability Support Worker award Level 1 standard weekday hourly rate is $21.57, while the Level 2 rate is $22.30, and Level 3 is $29.56. If they have their own ABN, I am willing to negotiate a slightly higher hourly rate because as a contract worker, they have to pay their own tax, super, and insurances. However, an ABN does not entitle them to charge the full $62.17 per hour that service provider organisations are permitted to charge.

I strongly suggest that the NDS price guide needs to provide information and advice to participants and their families regarding what the disability support workers hourly rate is and what they can expect to paid per hour for casual, part-time and permanent work if they employ or contract a disability support worker. There are a lot of participants who are paying way too much to unqualified disability support workers.

Allied Health

Is the NDIS aware that there are some Allied Health professionals and organisations first question to participants is to ask whether participants are self-managed and, if not, can they afford to pay the gap fee? This has twice happened to me. In other words, they do not want you as a client if you cannot afford to pay the gap between what the NDIS pay guide states and the fees they charge. These professionals and organisations should be barred from taking on NDIS participants. It is, in my opinion, outrageous that they take advantage of the system this way.

Personal Experience

This year, the family decided to go for a two-year plan to help me, because I am the one who organises and collates all the evidence, plus arranges the plan review interview. I help my grandson’s parents to write their carer’s impact statement, to ask therapists for reports, read these reports and provide any feedback to therapists.

I personally find the review planning process a stressful and often frustrating experience. My grandson has made significant progress in the last year and we wanted to continue his positive progress and development. I do not feel the review went well as I think I did not phrase my grandson’s funding needs well and it was a very rushed MS Teams meeting. I found myself troubled by the apparent lack of empathy in the LAC’s advice on what funding my grandson was not entitled

NDIS Plan Funding Reductions

There were few questions asked to clarify any of his needs or to establish a good understanding of his needs.

4.1. NDIS Section 34 (a), (b), (c,), and (d)

4.1.1. Explanations and justification

When a plan was approved it come to us without any reasoned explanation or justification as to why a decision was made to reduce or deny funding. Section 34.1 is quoted, and if we opt to appeal the decision, we are expected to appeal the decision without explicitly knowing the reasoning behind the reduction in funding.

My grandson’s new plan funding was reduced. His NDIS Capacity Building funding for 2021-2022 was $16,826.08; this was reduced in his NDIS 2022-2024 plan to $21,543.10 ($10,771.55 per year), which is a 33.125% reduction in capacity building funding. I feel sure that this is an error.

His Core Support funding for his 2022 to 2024 plan was reduced by 1.95% to $47,127.50 per year from $48,064.81. I do not feel this reduction is justified. In fact, when the committee considers the information provided below, the decrease is discriminatory.

The request for a support co-ordinator was denied on the grounds it was not value for money and would duplicate what Carers Qld LACs do. Carers Qld does not act in the capacity of a support co-ordinator. I, as grandmother, have filled that role, and I cannot any longer act as, or want to be, the family’s support co-ordinator.

4.2. Justification for Reduced Funding 2022-2024 Plan

4.2.1.

In my grandson’s plan for 2022-2024, the justification provided as to why funding was reduced are set out below. An email from Carers Qld quoted 34.1 (c), (e), and (f) without any justification or reasoning as to how they came to that decision: “The request for increased Core supports were not deemed to meet the reasonable and necessary criteria specifically section 34.1, (e) reasonable expectations of informal networks and section 34.1 (f), most appropriately funded through the NDIS. Child support arrangements after/before school and during school holidays for employed parents is a support arrangement that all parents - irrespective of the disability status of their children - must meet, and thus is considered to represent parental responsibility. Support Coordination has also not been included in the plan as this was not deemed to meet the reasonable and necessary criteria specifically section 34.1 (c), value for money as this support would duplicate the role of the Local Area Coordination team. We can discuss this further during our implementation meeting if required (Carers Qld Email 7 Sep 2022, at 16:27).”

4.3. Section 34.1 (e) reasonable expectations of informal networks:

My grandson’s parents pay for his after-school and vacation care at the PCYC with support from Centrelink.

My grandson needs more support than other children of the same age because of his disability. He is ‘a runner’, which means that he will take off without warning, escape the confines of an unsecured area or facility and run down the street. He is fast and very adept at climbing fences. To keep him safe and help him engage with other children and to increase his socially awareness, he requires 1:1 support.

Section 34.1 (f)

This decision is discriminatory because, to attend the PCY C or any other after-school and vacation care, they will refuse to take him without a support worker. There are several reasons why he needs support. First, because facilities are not secure and second, because the PC YC lacks the staff necessary for 1:1 support, nor do they have the skills to assist my grandson to participate. Finally, because no after-school and vacation care organisation will take him without a support worker due to staff limitation and their facilities not being securer for him. Apart from his father, mother and myself, my grandson has no other immediate or extended family members in Brisbane. As stated previously, I am in my 75th year, and it is not safe for him or me to act as a carer; I am too old, I cannot chase him if and when he runs. There is a risk to his and my well-being.

Section 34.1 (f), most appropriately funded through the NDIS and deemed to represent parental responsibility.

I am not all sure how 34.1 (f) applies to my grandson’s plan. As stated above, his parents and family pay for his after-school and vacation care with Centrelink support. We are not asking the NDIS to pay for this. What we request is that they pay for a support work so that he is allowed to attend after-school and vacation care and this has proved beneficial to his development. Our problem is, and I repeat, without a disability support worker, no after- school and vacation care organisation will allow him to attend; this amounts to discrimination on behalf of the NDIS.

Section 34.1 (c), value for money as a support co-ordinator was judged to duplicate the role of the Carers Qld Local Area Coordination team.

How does it duplicate the LACs role? Carers Qld have never communicated with service providers, organised supports within his plan, checked budgets or asked about my grandson progress, and they have never offered nor helped my grandson with:

• writing goals;
• learning more about the NDIS or our
• finding therapists;
• preparing for a plan review;
• assisting with referrals for assessments/equipment needs; We have been looking for an OT for over 2 years. When I queried Carers Qld claim that they do the support co-ordinators role, they sent the following links: Libraries Guide (moretonbay.qld.gov.au) Moreton Bay school holidays - Moreton Bay Regional Council Healthy and Active Moreton - Moreton Bay Regional Council Scouts Queensland | Join the Adventure (scoutsqld.com.au) PCYC Redcliffe - PCY C Queensland - PC YC Redcliffe - PC YC Queensland YMCA Mango Hill | YMCA Fitness & Recreation None of these activities are in secure venues; none of these organisations will take my grandson after school or during school holidays without a disability support worker or a supervising adult because he is a runner. We tried the PC YC for Trampolining, Gymnastics and Marital Arts, and the Redcliffe League’s Club for swimming lessons. Unfortunately, both venues are in shed type structures and the echo and noise causes my grandson to go into sensory overload, resulting in him becoming very unsafe and difficult to manage. The learning to swim Redcliffe League’s pool has special 1:1 swim teacher(s) for ASD kids, but the noise was too much for my grandson. The PC YC trampolining had to be 1.1 lessons, but the

trainer had no skills or knowledge to deal with children with ASD. Group activities are not suitable for my grandson as he is a runner, and he requires constant 1:1 supervision. On the weekends my grandson’s parents organise activities for my grandson. They go camping, boating, fishing, bush walking, climbing, on bus and train trips to places like Australia Zoo, and/or SEA LIFE Sunshine Coast Aquarium. They also go shopping, as well as visit friends, indoor playgrounds, birthday parties, and play dates with neuro-typical and atypical children etc. His parents do a lot with him. Both his parents have full time work. His father does shift work, 1300-to-2100 hours and sometimes 2100-to-0500-hours shifts. His mother’s shifts are all early morning shifts, starting at 0700-to 1530, 0800-to-1630 and 0900-to-1730 hours. My grandson requires a support worker to access and participate in activities in his community during the week after school and during school holidays. On weekends, his parents engage him in the activities listed above. Both parents work as a team to care for my grandson, but due to their employment conditions, there are limits to what they can do without a support worker. We are not sure if the NDIS expects them to quit working. My son started a lawn mowing business, he mows lawns in the mornings after my grandson goes to school. He started this business because my grandson shows an interest in helping, and loves mechanical motors and physical activity. He takes motors and other devices apart and puts them back together. The hope is that my grandson may be able, with support, to take over this little business when he is older. It is a job where he can earn an income and be a productive member of his community. As his grandmother, I have changed my will to ensure that my grandson will be looked after, and will always be financially secure with a place to live. The family has planned for the future and devised strategies to help my grandson be the most he can be. 5. Conclusion Am I angry? Yes, I am! A lot of parents and carers are angry. We feel let down by the system. We feel decisions are made without a second thought or without consulting us. The NDIS should have to rationalise their decisions. They cannot just quote the Act’s Section 34.1 and believe this is sufficient, or that we will understand their reasoning. They have to explain their line of reasoning behind any decisions around reducing or increasing funding. We feel that the NDIS is penny pinching with participants funding when there are a number of abuses occurring that are not being investigated or addressed. We are still not allowed to check the reviewed plan before it is submitted to the NDIS by the NGO/LAC. We have no other avenue of address other than to dispute a decision that was made without any written reasoning or justification as to how they came to that conclusion. The decision to reduce funding needs to be properly justified. We cannot help but think that nobody cared enough to read his parents’ carers impact statement or his reports. How could they cut Capacity Building funding by 33.125%, which is so important to his continued development, then reduce his Core support by almost 2%? Do they not realise how important it is for us to have access to a psychologist and speech pathologist? Do they not realise how much speech pathologist help the family and his carers to assist him communicate. He came home from school yesterday and the crown of his head was bald because he had pulled his hair out by the roots. We need to address this issue with his psychologist. He is ASD and non-verbal, the family and need the help of a psychologist to overcome a multitude

Page 9

of issues that sometimes suddenly arise, we do not have the expertise. We have no idea why he has started pulling his hair out or how to stop him from pulling his air out.