Submission to the Senate Committee on Community Affairs; Inquiry into National

Disability Insurance Scheme Amendment (Participant Service Guarantee and Other

Measures) Bill 2021

Submission from The Shepherd Centre, 8 November 2021

CEO Dr Jim Hungerford

Mr David Brady

Summary

The Shepherd Centre welcomes and expresses our thank you to Senate Committee for the opportunity to comment and provide feedback on the National Disability Insurance Scheme (NDIS) Bill 2021.

In summary, The Shepherd Centre highlights three areas for the Committee’s noting, information, and consideration towards amendment/adjustment of the Bill:

1. Normal NDIS participants (not participants in early intervention); The Shepherd Centre is happy with the amendments proposed, however, it requests consideration for an addition around the CEO to make a consultation before a major change is imposed for a disability cohort or to a group of participants.

2. Missed opportunity to provide clarity for early intervention plans; The Shepherd Centre is disappointed the bill is missing the opportunity to provide greater clarity between normal NDIS and Early Intervention Participants. We feel there is an opportunity to provide the CEO an opportunity to implement a structured approach for agreed disability cohorts (i.e. hearing loss) where there is evidence self-managed approach does not work well at the point of diagnosis and onboarding the NDIS.

3. Fee collection issue — NDIA unable to work with providers; The Shepherd Centre requests further investigation by the committee to consider an addition to the Bill in regards to empowering the NDIA CEO to investigate a participant’s NDIS funding payments should a registered NDIS provider provide evidence to the NDIA CEO of non-payment for services. The reason being is there are major risks of reputations of the Government, NDIA, Service providers, and vulnerable early intervention families that could be resolved with minor amendments to the bill.

We welcome the opportunity to provide in-person to the committee to explain aspects of our submission in further detail.

A146 Burren Street Newtown NSW 2042 « PO Box 871 Strawberry Hills NSW 2012 » ABN 61 000 699 927 T 02 9370 4400 * F 02 9370 4499 * W shepherdcentre.org.au « E enquiries@shepherdcentre.org.au

Newtown « Canberra « Liverpool « Macarthur « Macquarie « Wollongong

Joint-Patrons His Excellency General the Honourable David Hurley AC DSC (Retd) and Her Excellency Mrs Linda Hurley

About The Shepherd Centre – for deaf children

The Shepherd Centre is one of the world’s leading services providing audiological, early intervention, and family support for children with hearing loss. We are a specialist in working with these children, with a family- and person-centred approach, to enable them to achieve spoken language.

We assist over 450 children each year through both face-to-face and telepractice services. These children range from less than 1 month of age through to school-age and onwards; come from remote and metropolitan areas; all socioeconomic backgrounds; many cultural and linguistic backgrounds; and include many children with further needs and disabilities beyond hearing loss alone.

We focus on assisting these children to develop their listening, spoken language, and social skills so that they can achieve their potential in life. The outcomes achieved by the program are world-leading, with the children typically developing spoken language at the same level as their peers without hearing loss.

The children in our specialised early intervention service receive a multidisciplinary program incorporating specialist Listening and Spoken Language Specialists and therapists; Paediatric Audiologists; Child and Family Counsellors; and ENT Specialists (amongst other professionals). Our centres incorporate audiology booths designed for paediatric patients; individual therapy rooms; group clinical rooms; with videoconferencing facilities for remote service delivery. The program includes an integrated cochlear implant program for those children requiring this level of assistive hearing device. The early intervention children are aged up to 6 years; with hearing loss that may be bilateral or unilateral; and losses of all levels ranging from mild to profound.

Children ‘graduate’ from our early intervention program with the same profile of spoken language skills as other children of the same age. More than 90% of all graduates go on to attend mainstream classes at a mainstream school. The ‘typical’ (median) graduate has standardised language scores at the same level as the median child in the overall population. The statistics for the overall program – including the many children with additional needs, etc – are outstanding, with the overall median language well within the normal range.

We also provide support for children at school and ongoing support for those children who have received a cochlear implant with us. Our whole-program early intervention outcomes are published each year. The research we conduct and the outcomes we achieve are presented at multiple national and international conferences.

In addition, the Shepherd Centre is:

• a registered NDIS Early Intervention Provider;

• A member of First Voice (a globally-leading organisation joining together six like-minded charities from across Australia & New Zealand);
• A founding institution within the Australian Hearing Hub; and
• A member of the Hearing CRC. The vision of The Shepherd Centre is that: Every child with hearing loss can achieve their full potential in the world through their listening, spoken language, and social skills.

1/ Normal NDIS participants (not on Early Intervention) The Shepherd Centre is happy with the amendments in the Bill as it will compliment non-Early Intervention participants (and families), who have gained living experience and understanding of their disability to make the decisions to access supports and services with their NDIS plans to reach their goals. The amendments enabling flexibility to make changes within their original plans will ensure participants have the confidence to make the changes to their plans to access the supports they need faster than before and without having to restart the plan development or application process.

However, The Shepherd Centre advises the committee to consider an additional section or note for sections 32 to 35 in regards to major changes of plans for a cohort of participants as a group or that for a disability-specific group. We recommended there needs to be noting of a consultative approach to be a step for the NDIA CEO if any major changes to the NDIS plans for several participants or a disability cohort, to be made with participants, providers, and sector advocates before making a decision.

2/ Missed opportunity to provide clarity for Early Intervention plans The Shepherd Centre expresses its disappointment the bill is missing the opportunity to provide greater clarity between normal NDIS participants and Early Intervention participants. We advise the Committee to consider looking at providing the NDIS CEO the ability, on evidence, to intervene in Early Intervention participant cases where the child with a disability is at risk of having their early intervention program disrupted or discontinued due to challenging situations impacting their families, parents/guardians, or plan managers.

More clarity is required in the bill on Early Intervention because Early Intervention is usually focused on the provision of supports for a young child or newborn with a disability from the point of diagnosis. In our experience, it is common for the participant’s parents/guardians to be experiencing the disability for the first time in their lives. Many of these parents/guardians of a young child with a disability have very little

knowledge or understanding of the supports available for their child to learn to grow and build capacity around their disability. This is in comparison with people with disability and their families who have more lived experience and understanding.

We are witnessing participants with a hearing loss and their families from their first two to three years since the identification of hearing loss, are learning from scratch the challenges of using a hearing aid or cochlear implant, understanding how to teach a child to use their devices to hear and speak, learning new ways of communications for their child. All this for the parent/guardian is an extra layer of responsibility to ensure their child’s communication, hearing, and language development is covered as well as the basic early childhood development from birth towards school age.

The Shepherd Centre and other deafness sector providers witness families from all backgrounds being put onto self-managed early intervention plans, struggle with the complexities and challenges of managing their funds to cover the required early intervention services in the first two to three years since diagnosis and aiding of their child. Currently, the NDIA CEO is effectively expecting these families to learn everything in a very short space of time about the deafness sector, the supports, and the services on offer with taxpayers’ funds. Some do ok and manage their way through the system, but for the majority, it is an extra burden on families, especially for those who are:

    -   Speak a language other than English at home,
    -   Under financial stress,
    -   Under time pressure,
    -   Undergoing domestic challenges, separation, or in some cases violence.

We share with the Committee, one case of many which The Shepherd Centre and other early intervention providers encountered in the past year:

Family with baby boy with hearing loss referred through newborn SWISH (Statewide infant screening for hearing): Commenced on a Self-managed first plan: Referral made by hospital social worker as mum is young and first-time parent suffering anxiety. Barriers include the couple living in a temporary accommodation setting, stuggling to meet their daily financial needs. Neither parent has stable income/ work. Neither parent drives and they live a long way from their closest centre. The Shepherd Centre supported their medical and therapy visits by organising transport and referral to local support services in their area. This includes referrals for food support, Centrelink support, etc. The Shepherd Centre has put significant time and care put into establishing trust and engagement with this family. Currently, the child is awaiting cochlear implant surgery.

The ShepherdCentre spent time helping the family get onto their first plan which didn’t happen easily due to missed Hearing Australia appointments. Finally, after 4 months, the family got their NDIS plan after we

started working with them which was nominated as self-managed. Another 4 months have passed since they got their plan. In that time, The Shepherd Centre has tried to support the family to understand the self- managed NDS portal and access their allocated funds to pay for The Shepherd Centre invoices and contacting ECEI requesting support for the family to understand the system and help manage their funds. To date, The Shepherd Centre has received no funding from NDIS for the work we have been doing. Now The Shepherd Centre is currently considering how we might continue to support this baby with significant hearing loss who has disengaged since getting their self-managed NDIS funds. In this case, The Shepherd Centre has to decide whether to cease service or cover the fees through philanthropy as the baby with hearing loss needs intensive early intervention support.

The Shepherd Centre supports the principle of the NDIS for children with a hearing loss to have choice and control of funding provided but strongly advises the Committee and the NDIA to understand there is a structured approach from the first diagnosis and into the first 1 to 3 years within the Early Intervention Program. Then once the family of the child with a disability has gained experience and understanding of the supports required for the disability, it would be best for the NDIA, the Australian tax-payer, and the participant along with their family/guardian to have the option to be on a self-managed plan. We believe this will ensure better long-term decision making, greater long-term personal NDS investment, and reduction of welfare risks for the child with a hearing loss.

The Shepherd Centre welcomes the provision for the family of the child with a disability to choose the service of any registered provider who provides a structured plan to start the life-long support for the child with a disability and their families. This is no different for a person who had an accident that resulted in a disability for them, hence they are on a program of structured rehabilitation before moving onto the NDIS.

We recommend the Committee reviews the amendments to integrate this approach for Early Intervention and create clarity for the NDIA CEO. A suggestion may be to look at placing an addition to Section 44 as:

44. (1) (c) The CEO has the ability, within evidence, for Early Intervention plans for specified disabilities as nominated to be placed on structured plans from entry into Early Intervention to up to three years.

For more detail on the structured approach, please refer to appendix 1.

Fee Collection Issue - NDIA unable to work with Providers

The Shepherd Centre requests further investigation by the committee to consider an addition to the Bill in regards to empowering the NDIA CEO to investigate a participant’s NDIS funding payments should a registered NDIS provider provide evidence to the NDIA CEO of non-payment for services.

The Shepherd Centre as a registered NDIS Early Intervention provider provides services to support vulnerable or disadvantaged Australian families, requiring the careful collection of NDIS funds for services completed.

We are experiencing several cases where participants and their families on self-managed or third-party managed plans, are not making prompt payment of their NDIS funding for services provided for the child participant. In some cases families have fallen behind on making payments by more than three months, meaning for The Shepherd Centre, a decision has to be made whether to stop the intensive education support for the child participant or find a way to encourage the family to make the payment of their NDIS funding. When our staff contacts the NDIA, who have the opportunity to work with the family who are self-managed to investigate the situation and their funding allocation to their account, it is often they do not want to know of the case. This is not a once-off situation but as shown in the example of three of many cases below, is becoming more common for Early Intervention participants on self-managed plans.

Case 1

Family with a baby girl with hearing loss referred through newborn SWISH: Power concerns: dad much older, history of domestic violence, multiple children in the family, neither mum nor dad have secure income/ work. NDIA managed from 0-4 years old: Mum engaged with the parent group, Confident Kids program, Auditory verbal therapy, child family counsellor, and Audiology support through The Sheperd Centre. The family continued to experience barriers eg attendance impacted by transport issues, the family had barriers to daily living, parents disagreed about cochlear implantation. Child and Family Counsellor referred for extra community support, mum worked alongside all parts of The Shepherd Centre team to help overcome barriers for their family. Self-managed 4 – 5 years old: Family then moved to self-managed funds. The engagement was impacted and they became more difficult to contact. Attendance was increasingly sporadic. The Shepherd Centre did home visit support to help engagement, supported VC/ telephone calls, etc. Increased The Shepherd Center time trying to help family access NDIS portal/set up payments. The Shepherd Centre contacted the NDIA to seek assistance to locate the family and on whether the funding has been distributed, however this was met with a denial of responsibility to assist from the NDIA. Since then no funds were seen from the self-managed plan. The family stopped returning calls. The child continues to be delayed in speech, language, and hearing goals and currently has no support from The Shepherd Centre or other NDIS service providers. The child will start school with delayed speech and language. The family was exited 11 months after the

Case Study: Support Provided Through The Shepherd Centre

Case 1

A self-managed plan started. 11 months of support was covered philanthropically through The Shepherd Centre.

Case 2

In this case, the family were found to be incapable of handling the responsibilities of being NDIS self- managed plan, even at one stage with the family alerting The Shepherd Centre by stating “I realise this is all partly slow due to me not being up to date, to begin with, and then having to find time to print off, complete and scan and email off requests”. They were struggling with processing self-managed invoices and the process they are in.

In terms of what was done by The Shepherd Centre to support the family for their NDIS invoices payment: In the early stages, The Shepherd Centre finance team was able to contact them without issue but the family then stopped responding to emails and phone calls. The Shepherd Centre Regional Manager was able to discuss with them recently, as it was recommended to put a hold on services until contact with The Shepherd Centre Finance team was made or the outstanding invoices were paid.

In regards to communicating with the family, The Shepherd Centre Finance Team has undertaken a process to email the family to remind them and attempt to guide them to make payments of their self-managed NDIS funds for early intervention services. An extra communication is provided through their clinical contact to work through the progress of their NDIS claims and for the family to stay in touch regularly in terms of payment, even if there is no update from the NDIA. This is to ensure there are as minimal risk to disrupting the early intervention service being provided to XXXX (child participant) due to non-payment of invoices.

(Response from Parent of Participant)

“Dear XXXXXXX (The Shepherd Centre Staff member of finance),

Apologies I have not gotten back to you regarding the invoices.

I have been chasing NDIA as I had to submit paper payment request forms to access my child’s funds when her new plan started.

I put in the request on 22nd June and it has still not been processed and when I called (NDIA) again today I was told there is, “quite a backlog”. I pointed out it has been 4 months but they are still unable to say when it will be done. It would make more sense if they let people keep access to the funds from the old plan on the portal for the 90 days we have to reconcile things when a new plan starts.

Case Study: Challenges with NDIA Plan Management

The same thing is now occurring as my child has had a third plan commence on August 18th. I have submitted paper forms for the June- August invoices.

I will today submit an online payment request via the portal for the September invoice and those funds should be in my account to pay you on Monday.

I realise this is all partly slow due to me not being up to date, to begin with, and then having to find time to print off, complete and scan, and email off requests but the main delay is that they sit in a general inquiry email account with NDIA which must be so overloaded. Unfortunately, I cannot afford to pay the cost upfront and wait 4-5 months for NDIA to reimburse me.

Today I am sending the information to the complaints email account as I have been told they have to respond to complaints within a certain time period so that may speed things up.

Apologies again and thanks for the graciousness you have extended

Mother“

Case 3

The Shepherd Centre recently received notice from a very vulnerable family who opted for self-managed NDIA plans. Since moving to the self-managed plan they have missed the first 3 invoices and they are not yet set up on their NDIS portal to make the claims for the invoices for Early Intervention Services from providers. The family has been very hard to engage with and at the time of writing their child participant is waiting for MRI/ Cochlear Implant surgery. They mentioned to The Shepherd Centre clinical staff that they struggle to meet their everyday family expenses. The family’s original NDIS funding has worked well while NDIS managed, but engagement has dropped since the need to discuss finances after the opted for Self-Mananged plans within a few months since commencing Early Intervention.

The Shepherd Centre has taken a long time to build up trust and engagement and this has put a very big block in our support of their child to work on the essential early communication skills for that child’s life development. The Shepherd Centre staff are finding they have the choice of a need to spend a long time trying to support this family on how to manage their self-managed plan or to move back to plan managed or NDIS managed, or we will need to provide significant family support in understanding finances and portal, etc. Another major challenge is the parent’s literacy level as there has been some uncertainty on whether they understand the information being provided, even being made more accessible for them by The Shepherd Centre.

Page 9

The Shepherd Centre believes an addition to the Bill providing guidance and clarity on self-managed and plan-managed NDIS funding collection is necessary to provide a safety net approach before the next step of NDIS registered providers taking the negative impact of appointing debt collectors to follow up the participant and family to make payment of NDIS funds. We are stakeholders in the NDIS s scheme and wish to minimize any negativity of using debt collectors for the NDIA, Federal, and State Governments where this situation may first be resolved by the NDIA in the escalation process of collecting overdue funding for services completed.

Appendix

1. Need for a Structured Planning Approach

Currently, the unstructured and variable early intervention funding approach for children with a hearing loss is a high risk towards the child’s life development to become independent Australian individuals with aspirations to reach their life’s potential.

In Australia, more than 90% of infants/children diagnosed with a hearing loss are from families with little or no experience of deafness, their communications needs, or an understanding of the services needed for a child with a hearing loss to develop spoken language or communication skills. The service provided by The Shepherd Centre consists of highly trained and specialised clinical, speech, and communication development professionals with tertiary education and years of training. Its service is focused not only on the child with a hearing loss but also on the family/guardians who are raising the child. In this case, the parent/guardian are added the extra layer of responsibility to ensure their child’s communication, hearing, and language development are covered as well as the basic early childhood development from birth towards school age.

The current system is that the first plan for a child with hearing loss is solely depending on the level of hearing loss, resulting in access to one of four tiers of plans. The higher the hearing loss, the higher the plan. This enables the very rapid provision of a first plan; however, it also means that the plan cannot reflect the other challenges that the child may be facing (such as additional disabilities, delayed diagnosis, pre-existing delays, or complex family circumstances).

After the first plan, the planning process is unstructured. The Shepherd Centre has seen over the last year that average plan amounts are being reduced, presumably due to the worries about the value of other plans increasing. The following table uses the figures from the published quarterly NDIS data for children aged 0 to 6 with a primary disability of hearing loss:

The Shepherd Centre accepts that the NDIS must be financially sustainable, however, this can’t be achieved by further reducing the relatively small plans being provided for children with hearing loss.

Parliamentarians on the Committee and the NDIA need to understand the Early Intervention Services for children with a hearing loss are akin to that of formal school education for a child, in this case, the learning starts at a much earlier age and it is much more intense. It is unheard of for a formal school education service to be reduced as a child gets older and as they continue to build new life skills. The Shepherd Centre’s experience is that the hardest work in Early Intervention for hearing loss comes after the first NDIS plan.

It is disappointing for The Shepherd Centre professional staff and the families to face the challenge of how to maintain the child’s life skill development at a crucial stage in their infancy (1 to 4 years of age) under threat of reduction of supports and services. For children, the critical years of language and communications development are all years from birth to the day they enter school. Once the child commences speaking and developing their spoken language, the work is harder, not easier. In the case of a child with a hearing loss, the hard work does not stop for their family and themselves after year one, it grows as they develop their listening skills, their language, and their speech.

In short, The Shepherd Centre is disappointed the NDIA early childhood partners are not recognising the need to ensure the same structured amount of funding, or more, for the following years after the first year since diagnosis. Instead, The Shepherd Centre is finding through participant families, their funding amounts are decreasing and at times not enough to provide life skill development support for the child with a hearing loss.

Families are reporting that children who are doing better in their communications development journeys are having their plans reduced because they are “doing well”, although they will then drop behind with reduced support. This has placed high stress on families who fear reporting good progress of their child in developing life skills, causing them to play down their child’s development.

To address these issues, whilst still ensuring that plan values do not inflate, The Shepherd Centre recommends the Bill empowers the NDIA to use a structured planning approach for 3 to 5 years of early childhood development funding for the supports children with a heating loss need to ensure they are communication ready by school entry age.

We believe this will provide:

    - Empowers the NDIA to place all families, if unable to, those at-risk families or those families onto
     the structured approach as proposed by The Shepherd Centre.

• Less stress for the family of the child with a hearing loss, a breathing space to learn about hearing/deafness supports while making family adjustments to meet the needs of their child’s hearing loss. The child with a heating loss can develop at their pace without the threat of reduction of NDIS funding due to overachieving compared to their peers.

• Long-term savings through reduction of reliance by the child on welfare, additional NDIS supports, and mental health issues.

• The risk of delay of early intervention is avoided, and the child with a hearing loss is given the best start in life possible. Ready for their formal school education, and be at a position where they are close to or as equal to that of their hearing peers in the classroom.