Submission to the
Senate Standing Committees on Community Affairs
Inquiry into the National Disability Insurance Scheme
Bill 2012
January 2013
A joint submission from
Aussie Deaf Kids
Parents of Deaf Children
Parents of the Hearing Impaired of South Australia
Our submission to the Senate Inquiry into the National Disability Insurance Scheme Bill 2012 represents the views of three organisations representing parents of deaf and hearing impaired children:
Parents of Deaf Children is the peak body for parents of deaf or hearing impaired children in New South Wales. The role of the organisation is to support families in NSW with information, referral and advocacy services.
Aussie Deaf Kids is the national information and support website and portal for parents of deaf children in Australia. The organisation provides online information and support to families throughout Australia.
Parents of the Hearing Impaired of South Australia (PHISA) is the parent group for families of deaf children in South Australia. PHISA has been actively advocating for and supporting families since 1977.
As parents of children with hearing loss, we want our children to grow up to be able to participate fully in society. In order to do this, they need:
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A family with the capacity to provide them with the language environment and support they will need to become independent adults.
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Communication skills that allow them to learn, make friends, engage with their community and work.
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Access to technology, which allows them to communicate with their family, their friends, their teachers, their employers and to participate fully within their community.
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Education and socio-emotional support to assist them to successfully achieve the goals they envisage for themselves.
In this document we seek to highlight the needs of children with hearing loss and their families in relation to the National Disability Insurance Scheme Bill 2012.
We thank the Senate Standing Committee on Community Affairs for the opportunity to make a submission to the Inquiry into the National Disability Insurance Scheme Bill 2012.
Section of Bill Comments Recommendation
Chapter 1 Our organisations support the Objects and Principles laid out in the Bill. A reference to promoting and protecting the
Part 2 However, the legislation would be strengthened by explicit reference to rights of people with disability is included in
promoting and protecting the rights of people with disability within the the Principles of the Bill. Bill. Chapter 3 Paragraph (2)(b) states the National Disability Insurance Scheme rules Part 1 “may prescribe different ages and different dates in relation to different Section 22 areas of Australia.” While understanding this is required for the NDIS launch sites, we would like confirmation that this will rule will be superseded with the introduction of the full scheme. We need the NDIS to provide equitable access to service and support to children with disability and their families, irrespective of where they live.
Chapter 3 From time to time, families with deaf children move temporarily to There is a safety net for children with
Part 1 Australia on work contracts. We believe there should be access to the disability whose parents come to Australia on
Section 23 NDIS for children here on temporary residence visas so the child’s needs temporary residence visas to ensure their
are not compromised while the family is temporarily resident in Australia. progress and outcomes are not compromised We are concerned that if this is not the case, it will be difficult or cost whilst in Australia. prohibitive for families to find appropriate services and support for their child once the NDIS is launched.
Chapter 3 Paragraph (1)(c) states “the impairment or impairments result in Clear definitions of “functional capacity” and
Part 1 substantially reduced functional capacity to undertake, or psychosocial “psychosocial functioning” be included in the
Section 24 functioning in undertaking, one or more of the following activities”… Bill.
Paragraph (1)(c) Families have expressed concern about the term “functional capacity” in The capacity of people with hearing loss to relation to children with hearing loss and it would seem that the legislation communicate, socialise, learn and work be has sought to address this concern by adding, “psychosocial functioning” assessed using their unaided hearing into the disability requirements. We would like to see clear definitions of thresholds.
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what these terms mean in relation to the Bill.
Many children whose only disability is hearing loss, who receive appropriate services and support, demonstrate developmentally appropriate communication and activities of daily living skills. We therefore feel the term “functional capacity” is problematic in the context of hearing impairment. Communication access is the issue and this should be reflected in the eligibility statement.
Chapter 3 We welcome the inclusion of this section within the Bill and hope that this Our reading of this section of the Bill implies
Part 1 will mean that a large number of children who are currently diagnosed that children with a mild or unilateral hearing
Section 25 with a hearing loss but are unable to receive Better Start funding, will be loss will meet the early intervention
able to receive early intervention services under the NDIS. This includes requirements. If this were not the case, we children with mild or unilateral hearing loss identified through the would encourage the CEO to request the newborn hearing screening process but not currently eligible for funding evidence for their need for early intervention, or services in some states. so they will be included.
Newborn hearing screening was intended to identify babies with a permanent bilateral hearing loss of 40db or greater. However, children with mild and unilateral hearing loss are also identified in the newborn hearing screening process.
Families of children with mild and unilateral loss, despite being told their child has a disability through a newborn hearing screening program, have no clear pathways to ensure their child is able to achieve appropriate outcomes.
Children with a mild or unilateral hearing loss are at risk of achieving poor educational outcomes. These children need to be ‘failing’ before access to
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the intervention becomes available. This is contrary to the intent of a screening program and the acknowledgment that early intervention reduces the burden of the condition and is more cost effective way of achieving improved outcomes.
Chapter 3 Paragraph (d) states “where possible, strengthen and build capacity of 1. We see Section 31 Paragraph(d) as pivotal
Part 2 families and carers to support participants who are children.” We would to the success of the NDIS for children.
Section 3 endorse this statement if the phrase “where possible” is removed. We
Paragraph (d) believe that strengthening and building the capacity of the family or carers 2. Section 31 Paragraph (d) should state,
is pivotal to the success of the child’s outcomes and should not be seen as “strengthen and build capacity of families a possibility but a necessity. and carers to support participants who are children.” The model of person–centred funding has clouded the importance of
family-‐centred service delivery for children. Family-‐centred services are 3. Peer support programs for parents and
recognised as best practice in the delivery of programs for children with carers are recognized as a necessary disabilities and should not be compromised within a person-‐centred support within the NDIS for building funding model. resilience within families and enabling them to provide a home environment that There are, therefore, a number of aspects of paragraph (d) that we feel will assist them to raise and support their need highlighting in the context of families of deaf and hearing impaired child. children.
- Communication involves the whole family. • Families are the constant in the child’s life. For children with a hearing When a family chooses a bilingual
loss, the potential impact of that loss can be mitigated by the capacity approach to communication for their deaf of the family or primary carer to adapt to the increased needs of the child, the whole family needs access to child. In order to best support their child, the primary carer must be learning Auslan, not only the child. empowered and informed. Congenital hearing loss is a relatively uncommon disability – one in a thousand babies is born with hearing
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loss -‐ and most parents of deaf children are hearing themselves. There is much to learn and to understand in order to provide an optimal environment for the child to learn and communicate effectively.
Since the introduction of Better Start funding, we have seen the focus of early intervention move to the child, compromising the principles underpinning family-‐centred practice. Under Better Start, services can only receive funding when the service is for the child and so the needs of families, and particularly mothers, are sidelined to the detriment of the family unit.
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Families learn and are enriched and empowered by contact with other parents of children who are deaf or hearing impaired. Contact with other parents helps parents to negotiate the ups and downs more effectively and provides an improved sense of well-‐being. Parent support groups and parent-‐to-‐parent mentoring programs play a crucial role in building the capacity of the family to effectively support the child. Peer support for parents and carers promotes their well-‐ being and is in the best interest of the child.
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Better Start funding has demonstrated the drawback of person-‐ centred funding when families choose a bilingual communication approach for their deaf child. It is pointless teaching a child to communicate using Auslan if the family is not able to communicate in Auslan. Families need access to funding for Auslan courses so they can optimise communication within their family. Research shows us that when parents are unable to effectively communicate with their deaf signing child, there are serious mental health consequences for the
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child.
Chapter 3 Paragraph (i) –“maximise the choice and independence of the participant.” 1. Appropriate information and guidance is
Part 2 provided to parents to assist them to
Section 31 For many years, parents of deaf and hearing impaired children have make informed choices.
Paragraph (i) championed the need for choice for their children. We have, however, stipulated that this choice needs to be informed. This means that parents 2. The role of assisting families to make need unbiased information about all possible options, in a format that is informed choices is independent of meaningful to them, and assistance to understand the information and its service providers. This is particularly implications for their child and family. important in when a child has a hearing loss where service providers may have Choice has also tended to be very limited in regional and rural areas and strong opinions on communication we hope that the NDIS will build the capacity of the workforce so that methodologies and technology. families in regional and rural areas have equal access to choices for
services and support as their metropolitan counterparts. 3. Funding for information, advocacy and
support services for the family should be Bilingual early intervention programs for deaf and hearing impaired independent of funding for services for children are limited wherever a child lives and we would encourage service the child. Parents will not seek assistance providers to recognise the emphasis on choice in the NDIS and develop and support for themselves at the programs that provide a broader range of options for families than expense of services for their child. currently exists.
There is no mention in the draft legislation about advocacy and it is advocacy that plays a key role in ensuring parents understand their choices and are able to negotiate pathways that meet the needs of their child and family. Advocacy and information services play a key role in providing unbiased services to the family as they make decisions and must be funded under the NDIS to ensure optimal outcomes for both child and family.
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Chapter 3 Paragraph (j) – “facilitate tailored and flexible responses to the individual Part 2 goals and needs of participants.” Section 31 Paragraph (j) Families know that one size does not fit all and we welcome this paragraph in relation to participants’ plans. Better Start has demonstrated that service providers do not necessarily appreciate how important flexibility and the goals of the family are when providing their services.
Chapter 3 Paragraph (k) – provide the context for the provision of disability services Part 2 to the participant and, where appropriate, coordinate the delivery of Section 31 disability services where there is more than one disability service provider. Paragraph (k) Coordination of services without a case manager has been a problem for families over many years which we have attempted to address both in the introduction of newborn hearing screening as well as Better Start funding but without success. We hope this will be a positive step forward for families as they negotiate the complexities of the system when their child is diagnosed with a hearing loss.
Chapter 3 Paragraph 2 (a) and (b) make mention of “general supports” and “ Part 2 reasonable and necessary supports”. Section 33 It is unclear to us what this means for deaf and hearing impaired children. We believe there needs to be robust descriptions of what “general supports” and “reasonable and necessary supports” comprise.
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Chapter 3 There appears to be no timeframe for the CEO’s decision on whether or A timeframe be included within the Bill for
Part 2 not to approve the statement of participants’ supports. the CEO to make a decision regarding the
Section 33 statement of participants’ supports. Paragraph 4 We are concerned the current system where families can wait months to find out what services they are eligible to receive should not be a feature of the NDIS. Chapter 3 Paragraph (c) – “ the support represents value for money in that the costs Part 2 of the support are reasonable, relative to both the benefits achieved and Section 34 the cost of alternative support. Paragraph (c) We understand that the NDIS needs to provide cost effective supports in order for it to be fiscally responsible and sustainable. We do not, however, believe that cost effectiveness should over-‐ride possible outcomes.
Deaf and hearing impaired children currently receive hearing aids through the governments community service obligation. Children are provided with fully funded hearing aids that meet their audiological and communication needs. Parents can choose to “top up” but every parent knows that the fully funded hearing aids will meet the communication and learning needs of the child. We recommend that this approach be maintained with the NDIS – cost-‐effectiveness should not compromise outcomes.
Chapter 3 We are concerned that what is reasonable to expect from families, carers, We recommend that any judgement made
Part 2 informal networks and the community to provide in regards to funding and regarding reasonable expectations for
Section 34 support is too subjective. support from family, carers, informal
Paragraph (e) networks and the community be an informed Expectations for people with a disability are often low. In addition, the view of people with the lived experience of community tends to view hearing aids and cochlear implants as ‘fixing’ the hearing loss and their families.
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problem of hearing impairment which is not the case.
Chapter 3 Paragraph (f)(i) – The support is most appropriately funded or provided We recommend that the services children
Part 2 through the National Disability Insurance Scheme, and is not more currently receive through Australian Hearing
Section 34 appropriately funded or provided through other general systems of service continue after the introduction of the NDIS.
Paragraph (f)(i) delivery …as part of a universal service obligation. It has been unclear to us how the NDIS will interface with the current Australian Government Hearing Services Program and the influence this will have on children who are deaf or hearing impaired. It would appear from this paragraph that children will continue to receive audiological services through Australian Hearing while accessing other services such as early intervention through the NDIS. We would support this position.
Currently, families who attend Australian Hearing services can be assured of receiving consistent specialist paediatric services for children with congenital hearing loss. Without the safety net of a Government hearing program, families, especially those in the early stages of diagnosis, could be at risk of engaging services that are not specialised in this area and perhaps purchasing products and services that are inadequate or inappropriate for the child.
Chapter 3 The details about the NDIS that are of most interest to families – the Part 2 support and services they will be able to access for their child and family – Section 35 are contained within the NDIS Rules.
Having the criteria for reasonable and necessary supports in the NDIS Rules is problematic given how central these supports are to the success of the NDIS.
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Chapter 3 It is unclear from this section of the Bill how and when families will be Part 2 reimbursed. We would not support a system where families are left out of Section 45 pocket and do not seek services as they are unable to pay upfront.
Chapter 4 Paragraph 1 Note 2 – A registered plan management provider of supports It is recommended that these roles be kept
Part 3 may in certain circumstances manage the funding for supports under a entirely separate.
Section 69 plan. Our organisations believe there is considerable potential for both actual and perceived conflicts of interests if this were to occur. We believe the two roles should remain separate. Chapter 4 There appears to be little rigor around the qualifications and competencies Part 3 of providers. We would support a rigorous eligibility process for Section 73 registration of professional service providers. Chapter 4 These provisions appear to be acceptable in protecting the best interest of Part 4 the child. Section 74 -‐ 77
Chapter 4 The internal review process outlined in these sections is not transparent. We recommend an independent “middle
Part 6 path” (such as a Disability Services
Section 99 -‐ 103 In addition, the complaints pathway for people with a disability and Commission) to review decisions and resolve
families is not clear within the legislation. complaints in a way that is truly independent, accessible and timely for people with The proposed next step of going to the Administrative Appeals Tribunal disabilities and their families. will cause undue burden on complainants.
Chapter 6 We are encouraged to learn that functions of the Agency include: Part 1 Paragraph (c) – facilitating innovation, research and contemporary best Section 118 practice in the sector.
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Paragraph (d) – build community awareness of disabilities and the social contributors to disabilities. Paragraph (f) – to undertake research relating to disabilities.
Chapter 6 We note the Agency has the power to accept gifts, devises, bequests and Part 1 assignments. We would like clarity around how these will be utilised within Section 119 the context of the NDIS.
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Thank you for the opportunity to provide feedback on this significant policy that we hope will help our children and all people with disability to realise their potential for physical, social, emotional and intellectual development and enable them to contribute to the social and economic fabric of Australia.
Ann Porter Kate Kennedy Naomi Higgs
CEO Information & Advocacy President
Aussie Deaf Kids Manager PHISA
29 Ivy Street Parents of Deaf Children PO Box 143
Darlington NSW 2008 PO Box 4748 Henley Beach SA 5022