The National Ethnic Disability Alliance (NEDA) appreciates the opportunity to provide responses set out in the consultation paper on the Rules for the National Disability Insurance Scheme in relation to the consumer groups that our member organisations support. NEDA is pleased that the NDIS is all for Australians and what seems to be a universal scheme.
NEDA continues to play an important role in ensuring that the scheme is inclusive of people from NESB/CALD backgrounds with a disability, however NEDA strongly believes that there still is a great need for the NDIS legislation and rules to recognise the complex needs of participants from NESB/CALD backgrounds and policies and procedures need to be in place to support this.
NEDA continues to advocate as a national peak organisation dealing with NESB/CALD consumers with a disability, their family member and/or carers via the supporting service provider; that is NEDA’s member organisation.
NEDA is funded by the Commonwealth Department of Families, Community Services and Indigenous Affairs (FaHCSIA) to provide policy advice to the Australian Government and other agencies on national issues affecting people from NESB/CALD communities with disability, their families and/or carers; and continues to actively promotes the equal participation of people from NESB/ CALD backgrounds with disability in all aspects of Australian society in the NDIS.
In this submission, NEDA has responded to only those questions that are most relevance for our consumer groups, individuals from a culturally and linguistically diverse backgrounds (CALD) and or non-English speaking backgrounds (NESB) with a disability.
3. The different roles of NDIS
3.1.1 The rule may prescribe matters for and in relation to this chapter (relating to the types of assistance for people with disability provided by the Agency). Clause 17
3.1.2 What guidance should the rules provide the Agency about how to support people in referring them to community or mainstream supports, or to other support systems?
The Agency should provide general information and referral services to non-participants and advise them to other types of support services. Within the context of NESB/CALD individuals with disabilities, who may not be part of the NDIS, it is important that the Agency provide information/referral services that are able to accommodate to the cultural, linguistic and religious needs of non-participants.
It is crucial for the Agency to identify the most appropriate service for individuals from NESB/CALD communities and to ensure that the process for equal access to these services are funded too. For instance, the Agency should have the information and capacity to refer non-participants from NESB/CALD backgrounds to ethno-specific service provision. In this case, the information provided must be individualised and personalised towards the needs of those from NESB/CALD backgrounds.
NEDA also supports the Disability Advocacy Network of Australia (DANA) on how the Rules should amplify the proposed legislative provision to specify ongoing that a proportion of NDIS annual expenditure be allocated to the provision of independent disability advocacy and information.
There should be better clarity in the Rules on general supports that should be provided to non-participants in the NDIS should include:
- Information on greater choice on the types of services available;
- Provide linkages with relevant services for which the NDIS was not directly responsible ie. community support groups for NESB/CALD individuals with disabilities who are not part of the scheme; and
- Information on the most effective care and support services.
NEDA suggests that in supporting people in referring them to community or mainstream supports, or to other support systems, it is crucial that the Rules ensure that the Agency supports the use of external and independent agencies to assist individuals and families from NESB/CALD communities with the planning processes in providing culturally acceptable support and accessing on a case-to-case basis on what cultural constraints needs to be addressed prior to referring them to the appropriate agency. This will also help the individual’s plan to be inclusive and self-directed.
4. Eligibility for becoming a participant
4.1.1 Should the rule also set out the types of information the Agency will need to establish that a person meets the age requirements? What types of evidence are appropriate to determine if a person meets the age requirements?
In considering the age requirement and NESB/CALD groups, the Rules does not consider that migrants do not gain access to the Disability Support Pension after they’ve met the ten-year waiting period. It is crucial that NDIS considers that while the age eligibility is intended to not duplicate other service systems, there should be an exception made for migrants who do not receive DSP and may need to receive support from NDIS after the age of 65.
4.2.1 What factors should be taken in to account in deciding whether a person meets the residence requirements? What types of evidence are appropriate to determine if a person meets the residence requirements?
Residency requirement for SCV holders or permanent residents needs to be amended and the Rules needs to assess what support will be provided when someone is in the waiting process of obtaining permanent residency (PR). The average waiting period for obtaining permanent residency is 9-18 months and this would greatly affect migrants with disabilities from benefiting from the scheme. NEDA continues to hold its position in regards to residency requirements that the NDIS be made accessible to all tax-paying residents in Australia.
4.4 Disability requirements
4.4.1 How much detail on the criteria for determining the disability requirements should be set out in the rules?
4.4.2 Should there be any guidelines on people being able to provide existing assessments to meet the disability requirements?
Disability requirements should allow for circumstances when establishing the permanent nature of disability and determining disability requirements, the Agency needs to allow a periodical re-assessment of people’s needs, particularly for participants from NESB/CALD backgrounds with disabilities as their circumstances will change at key transition points like resettling in a new country and/or environment, getting a job, culture shock or even losing a natural support. NEDA suggests for details on the criteria to be as transparent as possible in order to be informed on the process of how permanent disability is determined and assessed.
The Rules should take into consideration a second opinion that will allow for a review and in ensuring an equal and fair assessment for NESB/CALD participants, especially if a national tool is in place to determine disability requirements. NEDA suggests for the Agency to develop and use assessment tools that is culturally sensitive and appropriate.
There also needs to be provisions in place for people such as refugees, asylum seekers or those from Aboriginal and Torres Strait Islander who may have difficulty proving their age. Assessors should have the capacity to accommodate to certain individual situations, particularly amongst NESB/CALD groups. The Rules need to take into account the social and cultural context of the person (ie. Relationships, supports, family) as this is an important criteria in early intervention.
It is important for the rules to determine disability on the basis of a functional assessment of what a person can do. In the context of participants from NESB/CALD backgrounds with disabilities, it is important that they are not tied down to the basis of diagnosis. Due to cultural, educational, gender and other factors that needs to be considered in regards to individual circumstances, the Rules need to allow the assessment process to take into consideration these factors in order to guarantee the most culturally appropriate support that they need.
4.5 Early intervention requirements
4.5.1 What criteria would be useful for considering the benefits of early intervention for mitigating or preventing deterioration in a person’s functional capacity to undertake activities such as mobility, self-care or self-management?
4.5.2 How can the support provided by families and other carers be made more sustainable by early intervention?
In considering the benefits of early intervention, it is important that NDIS include the following criteria for participants from NESB/CALD backgrounds in supporting them:
- To maintain daily life roles, functions such as employment, housing, family, social and cultural participation;
- Early interventions that are culturally appropriate and sensitive; and
- To consider social, cultural and religious contexts in responding to the symptoms in early intervention.
In ensuring that the support provided by families and other carers be made more sustainable by early intervention, it is important for NDIS to consider cultural beliefs and understandings of disability and how carers of NESB/CALD groups may refuse to accept early intervention. The Rules needs to consider that some carers from NESB/CALD groups might not accept early intervention, or even to acknowledge the disability itself. There needs to be safeguards in place that addresses issues relating to cultural and linguistic needs of the children and the families from NESB/CALD groups, and the desired outcome of an early intervention.
For example, in providing early intervention for development delay of a child, NEDA suggests that in considering the cultural beliefs of participants from NESB/CALD backgrounds, prior to providing support that is sustainable (through early intervention). In providing an appropriate and sustainable support, it is important that NDIS explore cultural backgrounds of the participant and to be aware of existing cultural biases towards disability or impairment, family environment and relationships that exist within NESB/CALD groups. The Rules needs to consider individual circumstances, educate carers as family members and/or carers from NESB/CALD backgrounds as cultural beliefs from the parents on a child’s disability is likely to shape the parents’ context and beliefs about the treatment and intervention.
In coping with the challenges that they may face in dealing with children with disability and the process of early intervention, the Agency has to increase the capabilities of the family in understanding disability and various behaviours around it. More importantly, it needs to consider the strategies to implement and manage certain behaviours as such family members and/or carers from NESB/CALD communities may not aware of early intervention strategies that are available in service provision.
It is crucial for the Rules to determine whether a family-centred approach or a person-centred approach would be a better early intervention approach for participants from NESB/CALD backgrounds, and to take into consideration lived experiences, family structures and cultural beliefs.
5. Participants’ plans
5.1.1 What methods or criteria should be used to determine those supports that would not be provided or funded by the NDIS?
In determining the supports that will not be provided or funded by the NDIS, it is important for the Scheme to guarantee that participants from NESB/CALD backgrounds are able to live appropriately as they will require services that will allow them to stay connected within their cultural and/or religious community.
The Rules should also embrace the importance of other kinds of supports and, by implication, the involvement of a wide range of support providers. In support of DANA’s statement, NEDA agrees that the Rules should not be use, and potentially limit, these other supports. Rather, the Rules should be indicative of the broad categories of outcomes in respect of which supports might be purchased using NDIS funding and should reiterate the principle that supports would not be funded where the provision of those supports would potentially breach an individual’s human rights.
5.2 Management of plans
5.2.1 What criteria should be used by the Agency in deciding whether there is an unreasonable risk for the participant in self-managing funding?
The Agency needs to consider cultural and gender roles and the idea of the “dignity of risk” among NESB/CALD groups. It is important that the scheme allows individuals from NESB/CALD groups to have a great degree of autonomy and self-determination. A risk-based monitoring process in its criteria needs to be in place in deciding how individualized funding is spent, ensuring it is legal and consistent with the plan, particularly within the context of NESB/CALD communities, as participants may or may not be manipulated by their carers/family members. For instance, in considering gender, ethnicity and disability, the Agency needs to address the risks that women may face due to gender/cultural roles.
Participants from NESB/CALD backgrounds need to be able to be directly involved and engaged with the development of their plans and managing their plans in order to control any risks involved. This needs to be exercised in the processes to support the participants’ plans and in doing so; NEDA continues to suggest that a personalized and/or person-centered approach is implemented in decision-making particularly among participants from NESB/CALD backgrounds.
As such, it is important for the Agency to assess participants’ relationship with significant others as in some NESB/CALD groups, a woman may not be given appropriate support to self-manage funds and this might lead to a risk of misuse of funds by others within the family members and/or carers. As such, NEDA continues to emphasize that supports and management of plans should be sensitive to gender-specific requirement, such as the roles of women within the household. There should also be flexibility within the participant’s plan in accommodating to the participant’s social, cultural and religious context and support and the complexity of their needs.
6. Information sharing
6.1.1 Under what circumstances would you consider it reasonable for the CEO of the Agency to disclose information to a Commonwealth or state or territory authority?
6.1.2 Are there any other protections to information that are not covered?
There needs to be better information in the Rules about the broader privacy framework for the NDIS and how entities participating in the NDIS will be covered by privacy law. There needs to be a right balance, particularly for participants from NESB/CALD backgrounds in which it is important to consider the cultural sensitivity of their personal information, some of whom may have experienced torture and trauma.
It is important that the Agency implement privacy-sensitive alternatives in protecting participant’s privacy and their personal information as its is not clear in the Rules concerning the types of information which may be released or if there might be a level of scrutiny towards the participant (ie. private information, criminal record etc.
The Rules should state that participants will be guaranteed the best privacy protection of their personal information. Also, it is not clearly stated if there is a requirement for the CEO to inform or notify a participant if specific information has been disclosed. This should be made a compulsory requirement in the Rules.
8.1.1 What criteria would a decision-maker need to take into account to appoint someone other than a parent to act on behalf of a child?
8.1.2 What criteria should be considered in deciding whether a child under the age of 18 should be making decisions about their supports?
The Rules need specify that both parents and the child be guaranteed access to independent advocacy support. This is particularly important for NESB/CALD families and children with disabilities as the parent would take full responsibility as a decision-maker within certain cultural context and in some cases, this may not be beneficial to the child. NEDA strongly recommends that both parents and the child are granted independent advocacy. NEDA endorses The Disability Advocacy Network of Australia (DANA) statement on “this is a crucially important decision and the Rules must specify that both parents and the child be guaranteed access to independent advocacy support.”
The Rules should support access to independent advocacy even for a child under the age of 18. There needs to be a solid foundation established during the early elementary years, before adulthood, for their children with disabilities as otherwise they will not be prepared to assume greater control over their lives when the time comes to do so – especially for children from NESB/CALD background where parents may be over-protective of their child and may not encourage them to be the sole decision-maker.
Another important factor for the Agency to consider in working with children is to have facilitators that will allow them to learn self-advocacy. This is crucial for children from NESB/CALD communities with a disability, as they need to be able to express and acknowledge any personal aspirations of the planning and review processes of their plans. The UNCRPD recognizes that ‘children with disabilities should have full enjoyment of all human rights and fundamental freedoms on an equal basis with other children, and recalling obligations to that end undertaken by States Parties to the Convention on the Rights of the Child.  It is important that the NDIS allows children with disabilities to exercise choice and control over their plans and help them to develop a sense of ownership and responsibility, especially amongst NESB/CALD communities as children with disabilities from ethnic groups might not be accepted by family members and not encouraged to advocate for themselves.
NEDA strongly believes that in allowing children, particularly those from NESB/CALD communities, to learn self-advocacy will allow them to gain control over one’s life, applying self-determination skills and goal setting. The Scheme should encourage this process of learning and applying such skills in leading successful transitions to adulthood.
9. Supporting decision-making
9.1.1 What criteria should guide the decision to appoint a nominee?
9.1.2 What criteria should be used to select an appropriate nominee?
9.1.5 Who should never be considered as a nominee?
In the appointment of a nominee, it is important that the authority lies to an independent body and not the Agency. There needs to be safeguards in place to protect the person with the disability from NESB/CALD backgrounds as in certain cases, they might not be given self-autonomy and self-determination due to cultural boundaries that exists between the participant and his/her carer.
NEDA suggests that there needs to be an application process in the selection of an appropriate nominee. An assessment of the nominee’s character and capacity (ie. thorough screening and quality references) has to be in place.
This process is crucial in determining whether a nominee is trustworthy, particularly amongst family members and/or carers from NESB/CALD backgrounds, and that they will be able to act in the’s interest and to allow the consumer to have self-determination. While most carers and/or nominees from NESB/CALD participants will be a family member, it is important to ensure that the relationship that the participant has with the nominee is positive.
NEDA recommends that the following criteria be considered in appointing a nominee:
- Understand an individual's personal and cultural context (characterised by the roles and responses of marital partner, family members, work colleagues, etc.) and consider the relevance of all these roles prior to appointing a nominee
- Provide training to appointed nominees/carers to ensure they understand the criteria needed to the full participation and control of people from NESB/CALD groups with disability
- In regards to carers/nominees from CALD backgrounds, the appointed person needs to be informed and aware of services available in their catering role; it is the responsibility of NDIS to ensure that nominees are aware of ethno-specific service provision within their communities.
- Carers need to understand the importance of confidentiality within their ethnic communities and they do not have any stigma around disability and/or mental illness.
In considering who should not be a nominee, it is important for the Agency to understand the cultural contexts of participants from NESB/CALD communities as more often than not, there can be allegations of the misuse of power and control by a carer and/or nominee and/or the allegations of the misuse of funds. Some participants from NESB/CALD backgrounds might be at risk of facing potential abuse from their carer and/or nominee and it is important that the Agency acts at the request of the participant when such situations occur. NEDA also recommends that there is both initial and ongoing training for nominees and this should be made as a requirement, as this will be beneficial for the nominee in dealing with the participant’s condition and/or disease.
Submission Title: The National Ethnic Disability Alliance Submission to the National Disability Insurance Scheme Secretariat, National Disability Insurance Scheme Rules
Date: March 23rd, 2013
Author: NEDA (RPO)
Approved by: Dwayne Cranfield (Chief Executive Officer)
PO Box 971, Civic Square ACT 2608
 Convention on the Rights of People with Disabilities, available on http://www.un.org/disabilities/convention/conventionfull.shtml