Ethnic Communities Council of NSW

Caroline Romeo

hacc@eccnsw.org.au

Person with disability

Review of the National Disability Advocacy Framework: Discussion Paper
31 July 2015

About the Ethnic Communities’ Council of NSW
The Ethnic Communities’ Council of NSW (‘the ECC’) is the peak body for all culturally and linguistically diverse (CALD) communities in New South Wales. The Council’s focus is to :
• ensure the retention of individual communities’ culture, language, religious practice, aged welfare or health services, sport and recreation and educational institutions
• promote and recognise multiculturalism as a part of the Australian way of life and as a valued asset
• ensure the rights of ethnic communities including their effective participation in decisions which affect them
• promote democratic attitudes for racial harmony and understanding
• oppose all forms of discrimination, defamation and vilification on the grounds of ethnic or national origin race, religion or colour
• facilitate joint action and cooperation between ethnic communities
• advocate on behalf of communities to improve access to services
This submission reflects the opinion of the ECC on behalf of its members and New South Wales’ diverse migrant communities.

Context
As an agency with a focus on systemic advocacy, the ECC appreciates the opportunity to comment to help inform development of the new Framework in relation to people with disability from migrant or culturally diverse backgrounds. We are supportive of the reform to the support of and delivery of disability services through the rollout of the National Disability Insurance Scheme (NDIS), and agree with the funding of systemic advocacy and legal review outside the NDIS to allow a more balanced and objective access to advocacy services (DSS, 2015a). Our submission reflects the opinions, views, perspectives and experiences of people from diverse cultural and linguistic backgrounds (hereafter referred to as “people with disability”) who live in New South Wales, both Greater Sydney and regional, rural and remote NSW. The key arguments or recommendations are highlighted in bold.
We look forward to the new Framework after its endorsement at the Disability Reform Council meeting in December 2015.
Q.1-4 – Current Advocacy Framework in the NDIS environment & suggested changes
Disability reform under the NDIS is one of the most important reforms that will have an impact on the lives of people living in New South Wales and across Australia.
The principles of the current Disability Advocacy Framework endorsed in 2012 strongly emphasises for and on behalf of people with disability, their :
• protection of human rights under Australian and international legislation and treaties
• promotion of interests and wellbeing, and inclusion as contributing and participating members of the community
• influence on positive systemic changes
• promotion of leadership and capacity building
• representation of preferences, goals and needs
• encouragement of self-advocacy
• recognition and respect of diversity in disability
• right to privacy, dignity and confidentiality
• capacity to develop through strategic alliances between and within services
The outcomes of the current Framework position people with disability who have the freedom, choice and capacity to influence decisions that impact on their life; whereas outputs suggest that access to advocacy is tailored to one’s needs and is consistent in terms of equity of access, while individual and systemic advocacy aim to achieve good outcomes for the person with disability. In essence, the current Framework is underpinned by a person-centred approach where people with a disability are at the centre of all decision-making.

CRITIQUE
The notion and concepts of independence, advocacy, value and respect, rights (to training, employment and life goals) and responsibilities particularly for some, if not all, people with disability from migrant or culturally diverse backgrounds is not necessarily clear or well understood (DSS, 2015a, p.2). There are very few public stories of advocacy by families or by people with a disability that demonstrate the person or family’s success to achieve the best possible outcomes for the person with disability. For instance, where families advocate for their child/ren’s right to inclusion in sport or education, it is a hard fought battle that is expensive, time consuming and draining on the family’s resources (DSS, 2015b).
John and Jane’s story, written in the third person and supported by the family, illustrates the challenges of family advocacy in education and sport :

EDUCATION

John and Jane are parents of twins with cerebral palsy, a condition that did not manifest itself till the children were two years old. Supporting one another as new migrants, they attempted to give their children as normal an experience as their able bodied sibling. Before starting school, Jane got reports from various therapists, after carrying out assessments for the twins, to ensure that they got the best start at school. With the advice of the Department of Education and Training (DET) NSW, she was advised to enrol them in a Support Unit within the mainstream school, in the closest public school in their area. The twins’ 3 1/2 years in this school was nothing short of a nightmare. The school could not even get the basic need of personal care ie. toileting right. There were numerous occasions when their toilet-trained twins came home saturated in their urine. The school had no expectations from their daughter who is an enthusiastic learner because her needs were a little more complex due to vision impairment. Numerous attempts by Jane to sort these issues out with the intervention of the DET and the therapist was to no avail, leaving the family the only option of moving suburbs in search of a better education and future for their twins.

After numerous attempts at various wheelchair accessible schools, only one local public school welcomed them with open arms. This school being a mainstream school where the twins had a full time one-on-one aid. This worked out well and the outcomes were much better, even though the twins had to compromise by missing out on sports and some excursions. The sad fact of the education system for children with special needs is that parents have to be constantly advocating for their children so that they get a fair go and achieve some education in an inclusive and healthy environment or else the schools become more of a respite center for their kids. It makes you wonder about the fate of the kids where parents do not have the courage to defend their children.

SPORT
John and Jane introduced their children to sport as a way to support them to live a normal life. They accidentally discovered Boccia, an indoor sport. The children have flourished in several competitions including training as potential Paralympians. However, participation in sports for their twins comes with many challenges. There are very few or no opportunities for children with special needs to play a sport in their local areas. To ensure that their twins are able to play a weekly sport, which is a healthy and fun way for kids to learn various skills like team building, communication, decision making, making friends, Jane had to go from pillar to post requesting councils and schools to provide a hall on an affordable rent for them to play Boccia. On one such occasion when Jane approached the Local Council to hire the Local community Centre, she was told that ‘the wheelchairs would damage the flooring’. You would have to wonder how councils hire such staff, who clearly think that the people on wheelchairs are not part of the community but some aliens living in the wild. The staff on being told that she was discriminating, agreed to check with the supervisor and get back. Eventually Jane managed to get a church hall for the local kids to play Boccia.

The twins compete at the State and National level in Boccia and all the competitions are held in the North East suburbs. The family have to travel from the South West to the South East suburbs and incur all the expenses of competing in these competition, travelling to and fro, purchasing sports equipment and for training. To help cover these costs the family had to approach various communities and charitable organizations. Jane is a full time carer of the twins and a younger son and hence is unable to take up a job. The twins have had various major surgeries to maintain and stabilize their physical ability. Again, the children’s right to sport and full participation that promotes their interests and well being has been financially difficult for the family. Their participation is somewhat constricted by their parents’ ability to advocate on their behalf, their mental health and their willingness to give their children every opportunity.

Children who do not have families with the courage and strength to advocate or take risks for their education, sport or work appear to experience different outcomes. For such reasons, while self/family/citizen/systemic advocacy for people with disability seems logical, it requires the participation of diverse stakeholders to allow people to have the confidence to advocate and get reasonable outcomes for the person(s) with disability. The Framework does not couch advocacy outcomes in terms of a “benchmark”, which suggests that outcomes could start from a low base. Using the above example in terms of the Review, the benchmark could be about access to one-on-one supports in any learning institution and resources to support it, without families having to argue for access to supports. Although aspirational, advocacy cannot have a place without real outcomes for the person with disability.
Samarpan’s story illustrates the challenges of citizen/community advocacy in housing for young adult children. The idea that people with disability can have a good life does not sit comfortably with most people in migrant communities. Their experience of people with disability may reflect the types of engagement in their country of origin. Some families adopt a more protective stance about their child or young adult with disability while other families are prepared to risk engagement with mainstream providers.
HOUSING
Samarpan, a South Asian organisation, although prominently Indian, has taken years to get any funding for social and community activities that allow their young adults to participate in sport, group picnics or promotion activities about the ethno-specific disability organisation. A small group of families dedicate time to planning meetings and group events, advocacy, grant writing and supporting each other. While not distinct in their work from other families who have children with a disability, there is little support from mainstream services to allow Samarpan to achieve one of their goals, that of providing independent housing with support for their young adults. Some of the parents are older while others are relatively younger. The former group of parents, with limited or no family supports, have a greater imperative to develop a housing type that will support their child/ren. Their advocacy efforts cannot compete with families who have equal or greater need for safe and secure housing. If the Ryde group of parents took years to be heard by the Minister, what hope does Samarpan have?

Although the Framework with its person-centred approach has existed since 2012, the outcomes are not necessarily desirable or acceptable to people’s needs and aspirations, as demonstrated in the above examples (DSS, 2012, p.1) . In an NDIS environment, every person with a disability must have equitable opportunities to access the supports they need to enjoy a good life and participate in the community. A key part of this is ensuring that support providers, whether disability specialists or in the community generally, respond appropriately.
The NDIS Act 2013 is clear about the “independence and social and economic participation of people with disability” and the exercise of “choice and control in the pursuits of their goals and the planning and delivery of their supports”. These important aspects of engagement are underpinned by a set of general principles that include recognition of people’s rights as any other member of Australian society plus explicit recognition of their families and other significant persons in the lives of people with disability (Australian Government, 2013)
Part of the advocacy vision for all is that people need ongoing education about their rights (and responsibilities) to live a good life or one that fits their needs and aspirations. Individual or self-advocacy for some opportunity needs to be supported irrespective of the Other’s view of the outcome. If we believe in a person-centred approach, we need to allow people to experience both failings and successes as a way to build resilience and courage to take risks for better outcomes. The NDIS Act 2013 states that “people with disability should be supported to exercise choice, including in relation to taking reasonable risks, in the pursuit of their goals and the planning and delivery of their supports (Australian Government, 2013).
The Framework outlines a human rights approach to advocacy for people with disability, but it does not highlight the ”responsibility” for stakeholders that the person with a disability (and their family) come into contact with. For example, a family who argues for participation of their children in any education setting needs the appropriate level of supports in and outside the classroom and support from the children’s peers and teaching staff. The family needs access to learning tools and equipment that do not create an unnecessary financial burden beyond that experienced by families of children without disability. A similar argument holds true for access to sport and a range of recreation activities particularly for children. Similarly, ethnic organisations need to take responsibility to create a culture of support in order to allow full participation of community members to community-based events. A multicultural access worker suggests that “connecting people with disability amongst various cultural communities will require tailored approaches and advocates/ambassadors within the cultural communities to relay information” (personal communication, July 2015). Anecdotal evidence suggests that NDIS in the Hunter experiences an ongoing challenge to connect with people with disability and their families from CALD background. This is evidenced in part from the alarmingly low level of participation by this group in the NSW launch site. All people with disability must have access to disability advocacy regardless of whether or not the person needs support services funded by NDIA.
We note that a number of organisations in New South Wales are funded as peak agencies in the disability sector. While Multicultural Disability Advocacy Association of NSW (MDAA) is considered the peak agency for and on behalf of people from migrant backgrounds with a disability, the ECC would argue that all organisations are responsible for creating an environment that supports advocacy. Some suggested areas of work might include outreach to communities in language in direct or indirect ways, diversity of people on Boards and staff, access to information in community languages, and ongoing understanding of the diversity of migrant communities. Speaking English or proficiency in English should not be an exclusionary criteria as that person with a disability (and their family) may not necessarily have a sound understanding of advocacy with its associated rights and responsibilities despite having good proficiency in English.
We are concerned that while the Framework argues for the protection, promotion, support and recognition for the person with a disability, access to advocacy (individual and systemic) is much more difficult in rural and remote parts of New South Wales. It is particularly difficult for certain migrant groups who live in these regions and who have no experience of rights for a person with disability. For example, a state agency funded a community development position in Griffith to educate and connect people from migrant backgrounds to mainstream disability services. The person experienced mixed outcomes from building people’s capacity about services. The Riverina has a small number of people from India, the second largest migrant group after Italians. The community worker of Indian background expressed difficulty in gaining access to members of the Indian community who did not want to discuss their children’s disability. Like many communities, there is some shame, stigma and cultural myths about disability that continue in people’s migration journey. For such reasons, multiple strategies are required to build a culture of support for all types of advocacy in rural and remote NSW to support people with disability from diverse cultural and linguistic backgrounds.
In essence, the principles, outcomes and outputs which define the Framework are too broad, with no defined responsibilities for diverse stakeholders in constructing advocacy supports. We would recommend that there are concrete obligations attached to each stakeholder to support a person with disability from a migrant or culturally diverse background.
In line with the seventh principle (recognition and respect for diversity) the ECC would like the Australian Government to articulate its meaning of ‘diversity’. While the Framework outlines the meaning of diversity in point 8, it is couched in terms of “additional disadvantage” (DSS, 2012, p.1). If we consider diversity as a positive characteristic of a person with disability, we would argue that the Framework needs to impose both supports and expectations on people with a disability as well as on organisations/services that support a person with disability to allow meaningful self, citizen, family and systemic advocacy.
The recent relaxation of the health requirements for humanitarian entrants resettled from overseas in line with a policy shift from ‘lifetime costs’ to ‘net benefits’ of accepting the person with disability and the family, has seen greater numbers of people with disability resettled in Australia under the refugee and humanitarian programme. These groups in particular require expansive supports to understand the process of accessing appropriate services. The NDIA needs to adopt a broader approach so that a diverse population of people with disability can access services and supports (personal communication, July 2015).

Q.5 – Future of advocacy for the CCSP cohort in the NDIS environment & suggested changes
Access to the NDIS is guided by certain criteria (see Checklist http://www.ndis.gov.au/ndis-access-checklist) and is currently restricted to trial or launch sites. However there is a small group of people, under 65 years, who may not qualify for the NDIS but who have varying levels of disability. They are currently supported under NSW Family and Community Services’ Community Care Supports Program (CCSP) similar to the previously known HACC (Home and Community Care Program). Provided with small amounts of supports such as transport, domestic help or personal care, this group of people from migrant or culturally diverse backgrounds are able to engage with life on their terms. Their voice in systemic reforms is less well known.
We know through the Hunter Launch site that there has been a lower focus on the CCSP cohort with a disability who do not qualify for the NDIS. As support networks through the (current) HACC Development Officers and HACC Multicultural Access Project Officers is re-defined in new agreements, this cohort may have a weaker voice. If the target group of the Framework is for all people with disability, we recommend that all organisations, funded or otherwise, need to include the CCSP cohort from migrant or culturally diverse backgrounds to give this group a strong chance to remain active participants in their community, at work and all facets of their life.

Further communication
Mary Karras, Executive Officer &
Caroline Romeo, Statewide HACC Multicultural Access Program Officer
Ethnic Communities’ Council of NSW Inc
T: 02 9319 0288
E: eo@eccnsw.org.au | hacc@eccnsw.org.au

References
Australian Government (2013). National Disability Insurance Scheme Act 2013 – C2013A00020. Retrieved from https://www.comlaw.gov.au/Details/C2013A00020/Html/Text#_Toc352761863
Department of Social Services (2015a). Discussion paper: Review of the National Disability Advocacy Framework. Retrieved from https://engage.dss.gov.au/ndaf/discussion-paper/
Department of Social Services (2015b). National Disability Advocacy Program (NDAP). Retrieved from https://www.dss.gov.au/our-responsibilities/disability-and-carers/program-services/for-people-with-disability/national-disability-advocacy-program-ndap
Department of Social Services (2012). National disability advocacy framework. Retrieved from https://www.dss.gov.au/our-responsibilities/disability-and-carers/publications-articles/national-disability-advocacy-program/national-disability-advocacy-framework
R.B. (personal communication, July 2015).