Planning and implementation considerations for CALD Australians

25 January 2013

Community Affairs Legislation Committee

PO Box 6100

Parliament House

Canberra ACT 2600

Dear Senators

Inquiry into the National Disability

Insurance Scheme Bill 2012

The Federation of Ethnic Communities’ Councils of Australia (FECCA)

thanks the Community Affairs Legislation Committee (the Committee) for the opportunity to make a submission to the above inquiry.

Part 1: Introduction

FECCA is the national peak body representing Australians from culturally and linguistically diverse (CALD) backgrounds. FECCA provides advocacy, develops policy and promotes issues on behalf of its constituency to the Australian Government and the broader community. FECCA supports multiculturalism, community harmony, social justice and the rejection of all forms of discrimination and racism so as to build a productive and culturally rich Australian society. FECCA’s policies are designed around the concepts of empowerment and inclusion, and are formulated with the common good of all Australians in mind. FECCA has a dedicated Disability Advisory Committee chaired by FECCA

Executive Mr Christian Astourian. The Disability Advisory Committee is

one of FECCA’s most active committees, comprising about twelve committed disability advocates, many of whom are CALD people with disability themselves. The Committee is aware from ABS Census 2011 data that one in four Australians was born overseas, and a further one in five have a parent who was born overseas.1 As disability affects persons from all backgrounds

Cultural Diversity in1 ABS,                      Australia, 2071.0 - Reflecting a Nation: Stories from the2011 Census, 2012–2013http://www.abs.gov.au/ausstats/abs@.nsf/Lookup/2071.0main+features902012-2013 (accessed 21 January 2013).                           1

indiscriminately, CALD Australians with disability comprise the largest cohort of persons with disability after women with disability. As such FECCA considers that the planning and implementation of the NDIS must take into account the needs of CALD Australians. FECCA welcomed the introduction of the National Disability Insurance Scheme (NDIS) Bill 2012 (the Bill) when it was introduced into Parliament on 29 November 2012. At that point, FECCA urged all political parties to support the speedy passage of the legislation. FECCA also stressed that the NDIS must be considered and adopted by all parties in the context of its intended form—a long-term, large-scale scheme sustained by adequate funding throughout budgetary and political cycles. Key issues FECCA highlights four issues of particular importance for CALD Australians in relation to the planning and implementation of the NDIS, namely that:

CALD Australians are adequately consulted at all stages of NDIS design, implementation and review;
interpreter services are able to be accessed by NDIS participants without a cost impact on their NDIS package (see comments on sections 6 and 7);
those who do not satisfy the residency requirements but are otherwise living in Australia for the long-term and likely to satisfy the residency requirement in the future are not prevented from accessing the scheme (see comments on subsection 23(b)); and
the often higher level of unpaid support provided by CALD family members to people with disability is not taken advantage of in the process of the Agency assessing the likely support needs of a person with disability (see comments on subsection 33(1)). The first of these issues is discussed below, and the remaining three issues are discussed, amongst other concerns, in Part 3 of this submission entitled ‘Specific comments on the Bill’.

Part 2: Consultation

In her Second Reading speech of the Bill, the Prime Minister noted that

We will also undertake public consultation on the legislative instruments that will be developed in conjunction with the bill.2 However, given the proportion of Australians from a CALD background, FECCA is dissatisfied with the extent of such consultation to date. Rather, FECCA considers that the efforts of the Australian Government— both at a Ministerial level and via the Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA)—to consult with CALD Australians in relation to the NDIS have not been sufficient to date. In the first instance, the Australian Government has not appointed any person representing CALD Australians to the NDIS Advisory Group, or any of the NDIS Expert Groups. In addition, FECCA does not consider that FaHCSIA is adequately engaging with CALD Australians about the NDIS. For example, Senator Di Natale asked FaHCSIA about its CALD engagement strategy during a recent Senate Estimates process. In response, FaHCSIA advised that of 321 responses from its online forum, ‘Your Say’, six raised CALD specific issues relating to the design of the NDIS. 3 FECCA notes a significant discrepancy between the engagement this demonstrates (less than 2 per cent of responses) and the size of the CALD cohort in Australia (25 per cent overseas born plus 20 per cent with a parent born overseas). FECCA also notes with concern the apparent satisfaction of FaHCSIA with this level of engagement, and suggests instead that the FaHCSIA’s online forum is not effectively engaging CALD Australians at the present time.

Implementation

FECCA is also concerned that the lack of consultation with CALD Australians has led to the earmarked NDIS launch sites being skewed

National Disability Insurance Scheme Bill2 Prime Minister Julia Gillard,                                      2012, Secondreading speech, Thursday 29 November 2012,http://parlinfo.aph.gov.au/parlInfo/genpdf/chamber/hansardr/9b96ae59-96ca-4e39-b984-8b520b432ef5/0005/hansard_frag.pdf;fileType=application%2Fpdf2012-13 Supplementary Estimates Hearings(accessed3       21 January 2013). Answer to Question on Notice 486,http://www.aph.gov.au/Parliamentary_Business/Committees/Senate_Committees?url=clac_ctte/estimates/sup_1213/FaHCSIA/index.htm (accessed 21 January 2013).                           3

towards less culturally diverse parts of Australia. This will have an effect not only on the right of CALD Australians to access the scheme during its early stages, but also the successful implementation of the scheme in wider Australian society when it is expanded beyond the launch sites. FECCA notes the five launch sites and proposed coverage,4 and has sourced ABS 2011 Census data on the cultural and linguistic demographics of those launch sites (Attachment A). Attachment A clearly shows that most launch sites do not reflect Australia’s diversity. People living in the Local Government Areas selected as NDIS launch sites are, when compared with the Australian average, more likely than to be born in Australia, more likely to have two parents born in Australia, more likely to speak only English at home and less likely to speak two or more languages at home. The NDIS launch sites most closely resembling the Australian average for cultural and linguistic diversity are the ACT and SA. However, there are many CALD people in the ACT who will be ineligible to participate in the scheme’s launch, such as members of the diplomatic corps and international students. Further, only the children’s cohort model will be launched in SA, thus CALD adults with disability will not be included in the launch in that state. Even setting aside arguments about whether or not the ACT or SA can be taken as representative of the diversity of Australia as a whole, FECCA considers that the NDIS launch sites will collectively fail to adequately test the scheme in the reality of multicultural Australia.

4             National Disability Insurance Scheme Bill See for example, the EM of the Bill includes a Statement of Compatibility withHuman Rights,                                      2012, p. 2,http://parlinfo.aph.gov.au/parlInfo/download/legislation/ems/r4946_ems_2e629de9-8977-4c7e-9886-28db156673e1/upload_pdf/375307.pdf;fileType=application%2Fpdf#search=%22legislation/ems/r4946_ems_2e629de9-8977-4c7e-9886-28db156673e1%22(accessed 21 January 2013).                           4

Part 3: Specific comments on the Bill FECCA welcomes the Bill and makes the following specific comments on a number of its sections: Section 3 FECCA fully supports the ideals outlined in the Objects of the Act, and hopes that the implementation of the NDIS achieves them. FECCA particularly welcomes s3(1)(h) which notes that the implementation of an NDIS will assist to give effect to Australia’s obligations under the United Nations Convention on the Rights of Persons with Disabilities (CRPD). FECCA’s general advocacy on disability matters is undertaken on the premise that the Australian Government should increase its efforts to enshrine its commitments under the CRPD in Australian legislation. Subsection 5(d) FECCA particularly welcomes the clause recognising that the cultural and linguistic circumstances of people with disability should be taken into account. We consider that this recognition needs to be expanded beyond a ‘principle’ and spelled out in other parts of the Bill, for example, in sections 6 and 7 (below). Sections 6 and 7 FECCA notes that s6(1) allows the Agency to provide support and assistance (including financial assistance) to prospective participants and participants in relation to NDIS activities. FECCA also notes that s7(1) provides that information given to a person with disability must be given in the language they are most likely to understand. FECCA welcomes these clauses if they will ensure that translation and interpreter services will be offered, free-of-charge to CALD participants and prospective participants, and without being considered an ‘NDIS amount’. However, FECCA is unsure if the current wording of sections 6 and 7 would oblige the Agency to provide translated information or provide advice via an interpreter in all cases where such services are needed. The current wording of s6 includes an explanatory Note that FECCA suggests should be extended to ensure that it is clear that translation and interpreter services are intended to be provided. FECCA’s suggested addition is shown in red text:

For example, the Agency might assist a participant to prepare the participant’s statement of goals and5 aspirations by assisting the

participant to clarify his or her goals, objectives and aspirations, or express them in English.5 In a similar manner, FECCA suggests an amendment to s7(2). The phrase ‘orally and in writing’ often refers to information given to people without disability, on the assumption that both formats are understood. However, this cannot necessarily be applied to people with disability. People with disability may require information to be given via a range of formats not limited to ‘oral and written’ communication. For example, some communication mechanisms employed to disseminate information to people with disability include illustrated Easy English, Braille, electronic means other than PDF documents (which are not easily accessible to visually impaired people) and written and spoken information in languages other than English. As such, FECCA suggests that s7(2) should be amended to reflect the range of formats that people with disability can understand:

An explanation given under subsection (1) must be given in more than one format accessible to the participant both orally and in writing if reasonably practicable.

Subsection 23(b) Section 23(b) limits access to the NDIS to persons who are Australian citizens, permanent residents and holders of Special Category Visas (SCV). FECCA is concerned that this requirement will adversely impact people with disability who have not yet attained permanent residency but who fully intend to stay in Australia indefinitely and who are unable to return to their country of origin (such as people who have been granted refugee status). In particular, FECCA is concerned that children with disability of current non-residents will be unable to take advantage of early intervention or education services that they would otherwise be able to access if their parents were granted residency sooner. FECCA’s concern is particularly pertinent given the Australian Government’s recent decision to restrict the rights of asylum seekers who arrived in Australia by boat under the so-called ‘no advantage’ test. Some of these people have already been recognised with refugee status but face long periods of time living in Australian society without access to the right to employment or full social security payments. FECCA considers this an unjust situation and one that should not be exacerbated by delayed access to the NDIS. 5 National Disability Insurance Scheme (NDIS) Bill, s.6(1) 6

The Bill’s Statement of Compatibility with Human Rights notes that the proposed NDIS requirements are the same as the residency requirements that apply to the broader social security system.6 However, FECCA notes that these requirements are different from the residency requirements required to access the Medicare system. Medicare provides a better comparison point than the ‘broader social security system’ because it is also an insurance-based healthcare system like the NDIS and provides more universal entitlement. Certain non-residents are eligible for Medicare services, including some asylum seekers and those granted refugee status, some who have applied for permanent residency and those holding citizenship of a country with which Australia has negotiated a reciprocal arrangement that allows access to Medicare.7 At a minimum, FECCA considers that the residency requirements under the NDIS should be the same as those required for access to the Medicare system. FECCA acknowledges section 23(2)(f) which causes ‘regard’ to be had to ‘any other matter relevant to determining whether the person intends to remain permanently in Australia.’ However, FECCA does not consider that such ‘regard’ is sufficiently strong to ensure that the most vulnerable of Australia’s future citizens are supported by the NDIS. Instead, FECCA suggests that section 23 should be amended by deleting the struck through text and by inserting the red text: 23(1) A person meets the residence requirements if the person: (a) resides in Australia; and is an Australian resident; and (b) is one of the following: (i) an Australian citizen; (ii) the holder of a permanent visa; (iii) a special category visa holder who is a protected SCV holder; and (cb) satisfies the other requirements in relation to residence that are prescribed by the National Disability Insurance Scheme rules.

Australian resident should then be defined under the definitions section of

National Disability Insurance6Scheme Bill Statement of Compatibility with Human Rights,           2012, p. 10,http://parlinfo.aph.gov.au/parlInfo/download/legislation/ems/r4946_ems_2e629de9-8977-4c7e-9886-28db156673e1/upload_pdf/375307.pdf;fileType=application%2Fpdf#search=%22legislation/ems/r4946_ems_2e629de9-8977-4c7e-9886-28db156673e1%22Australian resident      Health Insurance Act 1973(accessed7       21 January 2013). See the definition of                    in the                            (Cth), s.3                           7

the Bill in the same way that it is defined in section 3 of the Health Insurance Act 1973 (Cth) (as amended). Further, FECCA suggests that the particular situation of refugee and asylum seekers should be acknowledged in subsection 23(2), for example, by including the text in red:

23(2) In deciding whether or not a person resides in Australia, regard must be had to: (a) the nature of the accommodation used by the person in Australia; and (b) the nature and extent of the family relationships the person has in Australia; and (c) the nature and extent of the person’s employment, business or financial ties with Australia; and (d) the nature and extent of the person’s assets located in Australia; and (e) the frequency and duration of the person’s travel outside Australia; and (f) the intention of the person to remain permanently in Australia as demonstrated by the Australian visa held or having been applied for by the person in accordance with the Migration Act 1958; and (fg) any other matter relevant to determining whether the person intends to remain permanently in Australia.

Subsection 33(1) Subsection 33(1) sets out the details that must be provided to the Agency before any financial support is determined to be provided to the participant. Subsection 33(1)(ii) requires that the ‘informal community supports and other community supports’ are taken into account. FECCA is aware that carers from CALD backgrounds provide a considerable amount of care to their relatives and community members with disability. In some cases, CALD carers provide more assistance to relatives with disability than other Australian carers because of factors such as a lack of information about support services in languages other than English, a lack of awareness of the rights of people with disability and their carers supported in Australian legislation, a desire to conceal the disability from the wider community due to cultural stigma on disability,8 and other intersectional factors that often lead CALD carers to experience

8 See for example, Rooney, R. Wright, B Australian& O’Neil, K.e-Journal(2006) ‘Issuesfor thefacedAdvancementby carersofofpeopleMental with a mental illness from culturally linguistically diverse backgrounds:Carers’ and practitioners’ perceptions’       Health, Volume 5, Issue 2.                           8

‘burn out’. 9 FECCA is concerned that there is potential for the Agency to use the clause about ‘informal community supports’ to take unfair advantage of the care that CALD carers—and CALD communities— provide. FECCA suggests that the Committee recommend that the NDIS Rules be written and implemented in a fair manner to compel the Agency to allocate financial assistance (for example, for respite care) in addition to a sustainable level of care obtained by a person with disability through ‘informal community support’. This is important to ensure that it cannot be assumed by the Agency that carers who currently provide enormous amounts of care can do so indefinitely and do not need assistance. Subsection 46(1) Clause 46(1) requires participants having received services under the NDIS to adhere to record keeping requirements. While acknowledging the need for accountability for public funds, FECCA suggests that the NDIS Rules should be sufficiently flexible so as not to cause unintentional offences to occur that may happen due to a lack of understanding either as a result of disability and/or lack of fluency in English. Subsection 147(5) FECCA notes that 147(5) provides for the establishment of an Advisory Council, and that 147(5)(a) requires the Minister to:

[H]ave regard to the desirability of the membership of the Advisory Council reflecting the diversity of people with disability… As detailed in part 2 of this submission, FECCA has an on-going concern about the adequate consultation of Australians from CALD backgrounds with respect to the NDIS. As stated in the introduction to this submission, while CALD Australians comprise about 45 per cent of the Australian population, no person has been appointed to the NDIS Advisory Group or any of the Expert Groups to represent CALD Australians. FECCA raised

9 See for example, Rooney, R. Wright, B Australian& O’Neil, K.e-Journal(2006) ‘Issuesfor thefacedAdvancementby carersofofpeopleMental with a mental illness from culturally linguistically diverse backgrounds:Carers’ and practitioners’ perceptions’       Health, Volume 5, Issue 2.      Shut Out: The experience of people withdisabilitiesSee also: Australianand their Governmentfamilies in Australia,Department of Families, Housing, CommunityServices and Indigenous Affiars (2009)                                      National Disability Strategy ConsultationReport, available online at http://www.fahcsia.gov.au/our-responsibilities/disability-and-carers/publications-articles/policy-research/shut-out-the-experience-of-people-with-disabilities-and-their-families-in-australia,(accessed 21 January 2013).                           9

this issue with the Minister for Families, Housing, Community Services and Indigenous Affairs but was disappointed when her office indicated in reply that ‘these groups were not intended to be representative of sectors, organisations or jurisdictions.’ FECCA does not consider that CALD Australians comprise a niche ‘sector’ as they number almost half the population. Rather, FECCA contends that Australia is a multicultural nation and that Australian Government decision-making and advisory bodies need to reflect this reality. As such, FECCA contends that the types of diversity present in the general group of ‘people with disability’ need to be enshrined in legislation in order to ensure that CALD people are adequately represented. As such, FECCA suggests that subsection 147(5)(a) be amended to specify the range of diversity the Australian Government wishes to acknowledge, for example:

[H]ave regard to the desirability of the membership of the Advisory Council reflecting the cultural, linguistic, religious, age, gender, sexuality, physical and intellectual ability and other diversity of people with disability… Section 208 As detailed in Part 2 of this submission, FECCA is concerned that the proposed launch sites for the NDIS are by and large not reflective of Australia’s cultural and linguistic diversity. Section 208 details the manner in which the NDIS must be reviewed. FECCA suggests that this section should be more specific in order to ensure that any review of the NDIS adequately addresses the issue of fair access to the scheme to all Australians with disability. One way of ensuring this takes place would be to require the terms of reference for the review to include reports against the objects and principles enshrined in the Bill, for example:

208(3) The terms of reference of the review must be agreed by the Ministerial Council and include the extent to which the NDIS has addressed the Objects and Principles of the Act as set down in subsections 3(1), 4(1–15) and 5 of this Act.

Part 4: Recommendation

FECCA asks the Committee to consider its specific comments and proposed amendments to the Bill, especially the key issues FECCA has identified as most important for CALD Australians. Recommendation: FECCA asks the Committee to recommend the Bill be passed with FECCA’s suggested amendments. FECCA thanks the Committee for the opportunity to comment.

Yours sincerely