Friday, 25 January 2013 Community
Committee Secretary Safeguards
Senate Standing Committees on Community Affairs
National Disability Insurance Scheme Bill (2012) Coalition
PO Box 6100
Parliament House
Canberra ACT 2600
Australia
Phone: 02 6277 3515 Fax: 02 6277 5829 Email: community.affairs.sen@aph.gov.au
Dear Sir/Madam
Community Safeguards Coalition (CSC) welcomes the opportunity to present its Submission in relation to the NDIS Bill 2012 to the Senate Standing Committee on Community Affairs Inquiry.
Attached please find the CSC Charter and the membership list. The feedback being provided to you in the Submission represents the interests and concerns of the people with disabilities and their families who members of CSC represent.
Yours sincerely
Carol Holt
Chairperson
NDIS Bill 2012 Submission
1
NATIONAL DISABILITY INSURANCE SCHEME BILL 2012
SENATE STANDING COMMITTEE ON COMMUNITY AFFAIRS
INQUIRY
BACKGROUND
The Community Safeguards Coalition (CSC) is a network of people with a disability, families, friends, advocacy agencies, service providers and allies of people with a disability.
OUR MISSION
To promote people with disability having the equal right, together with the appropriate support and resources to the same range of lifestyles as other people by safeguarding against legislation, policies and practices that limit or deny their fundamental rights.
OUR AIMS
To provide a mechanism for a collective of like-minded people to undertake united and rights based action To examine and analyse government policy and practice which dictates the ways that people with disability are supported in Queensland To raise awareness of any negative impacts that government legislation, policy and practice have on people with disability
OUR BELIEFS
We believe that people with disability have a right to: Live in the community with choices equal to others Be included and participate in the community Choose their place of residence on an equal basis with others and not be obliged to live in any particular living arrangement
SUBMISSION
The focus for this submission is mainly around accommodation options for people with a disability. CSC has been advocating to government in Queensland for many years now to change the dominant model of service provision in this area from group homes/large residentials to more individualised responses. People with disability are disempowered in many ways: mostly through being part of a low socio-economic grouping where there is less participation in all areas - such as school, further education and workforce participation, low income, low home ownership and lower weekly income than the rest of the Australian population. This disempowerment is heightened when the choice to live where and with whom one wishes is severely narrowed.
CSC has a particular interest in the practice of ‘forced co-tenancy’ and we have been advocating for many years to have this practice changed. Forced co-tenancy can be described as:
A person is denied the fundamental right to choose where and with whom they live
NDIS Bill 2012 Submission
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A vacancy in a group home is the only option A person’s basic care needs will not be met unless they “agree” to another person with disability moving into their home so support can be shared Funding programs (block funding) are delivered in ways that force individuals to live in group situations, making them ineligible to access individual funding to move out of the group situation.
This practice is a direct contravention of Article 19(a) of the CRPD which has been ratified by the Australian Government and states:
Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement.
It is only people with disability who are organised into group homes by funding bodies and service providers and who remain in such situations for life. No other Australian citizen is subject to this.
CSC is optimistic that the NDIS will reverse this situation and bring positive changes to people’s lives. However, the Objects and Principles of the Legislation need to be strengthened to fully articulate what are the obligations of the Federal government and all States and Territories under the Convention on the rights of People with Disabilities (CRPD) in order that the tenets of the CRPD are not breached. This is happening in Queensland.
Chapter 2 Investment in capacity building for people with a disability and their families is crucial and should begin now in order to educate and empower people to make decisions that will enrich their lives. Without this knowledge and inspiration, people will tend to stick to the ‘same old, same old’ service types and won’t dare to dream that things can be better and tailored made for them. Many people with a disability or their families have rarely had the opportunity to take control of their own lives or make their own decisions so this is a big leap and people need to know what is possible. If this capacity building does not occur and occur thoroughly, then the concept, the essence of the NDIS will not succeed.
Chapters 2and 3 CSC acknowledges that what can and cannot be purchased with the funding received poses a dilemma. Some people will want to know exactly what is allowable and what isn’t and some would not want the legislation to be that prescriptive. CSC believes that it is far better to leave the legislation on this issue broad: along the lines of people with a disability and their families should be able to purchase whatever is required to enable them to have the same opportunities as other non disabled citizens in the community. This then leaves it open for negotiation about what are ‘necessary and reasonable’ supports. There should not be a list of what can and cannot be purchased as this could lead to a risk that people with a disability may be denied certain items which may support their quality of life: each person has different, individual needs. A person with a disability and/or the family are those best placed to determine what supports need to be purchased to enhance a person’s quality of life.
Chapter 3 Section 29 (1) (b)
NDIS Bill 2012 Submission
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A recipient of the NDIS should have the option to stay in the NDIS regardless of turning 65. People should have the choice between staying in the NDIS or changing to the supports offered by the Department of Health and Ageing.
Chapter 3, Part 2, Division 1, Section 31 (e) The wording “availability to the participant of informal supports” is of concern. Any informal supports need to be considered outside of any heavy reliance of partners or family of people with a disability. The wording needs to ensure it is clear that a recipient’s relationship status should not affect the level of support the individual will receive. Informal supports for a person with a disability are highly desirable but should be developed as part of the package of support.
Chapter 3. Part 2, Division 1, Section 34 (f) This Section appears to be saying that an individual’s plan and therefore their funding should be used to “support communities to respond to the individual goals and needs of participants”. A person may choose to engage someone to assist them to develop a network of friends and acquaintances in the community, but not fund the community to take up this role. This is ‘community development’ and needs to be funded separately.
Chapter 3, Part 2, Division 2, Section 33 (1) The word “planner” here should be more clearly explained. It appears to read that an allied health professional will be the planner: this should not be mandatory. The person with a disability should have choice about who assists him/her with their plan. Often health professionals take a very conservative approach and have limited expectations of a person with a disability. CSC want to see people being encouraged and empowered to ‘think outside the box’ and ‘dare to dream’ what their lives could be like.
Chapter 3, Part 2, Division 2, Section 33 (4) No timeframe has been placed on the approval of participants supports. CSC feels this is a crucial part of the whole process. People, once approved, will be anxious to receive their support funding. A reasonable timeframe needs to be developed and made clear to participants so that they know what to expect.
Chapter 3, Part 2, Division 2, Section 34 c What is ‘value for money’? What does this mean? This phrase needs to be clarified. If a support is absolutely essential to a participant and leads to wellbeing, community participation and belonging, then that represents ‘value for money’ for that person: it may not be ‘value for money’ in another person’s life.
Also, CSC believes that ‘reasonable and necessary supports’ needs further clarification and explanation. It is a very vague statement, has little meaning and is open to interpretation and dispute. This is the area that will have the greatest impact on people’s lives and therefore should be explored more carefully in the legislation. CSC understands that there will be ‘rules’ forthcoming, but the legislation gives people protection: an example may be “reasonable and necessary supports for people with disability will align with the expectations of other Australian citizens” (quote from Queenslanders with Disability Network).
Chapter 3, Part 2, Division 2, Section 35 The ‘rules’ of the NDIS provide a mechanism for putting the legislation into operation. The rules should therefore have safeguards around them so that the power of the legislation is not diluted by
NDIS Bill 2012 Submission
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external considerations: for example, economic downturn. Safeguards need to be put in place to ensure any changes are subject to consultation and debate.
CSC has serious concerns about Sections 35(2) and 35(3) which state the provision of supports with criteria regarding the “manner in which the supports will be funded and by whom the supports so funded are to be provided”. This opens up the possibility that funding could be attached to specific service providers: in other words ‘block funding’ or funding only to ‘approved’ disability service providers which would take the flexibility and autonomy away from each individual. In other words, they could lose the option of using local generic services to provide the support. This is not acceptable to CSC as it would undermine the whole concept of individualised, person centred support. With regard to block funding: in Queensland, block funding has led to group homes where people with a disability are placed under a system called ‘vacancy management’ – in other words, where there is a spare bedroom in a house, then a person can be placed there. It does not seem to matter that they don’t want to live there or they are not compatible or even do not like the other 3 or 4 residents living there. Often people are required to relinquish their individual funding package to the service provider in order to receive support in a group home. Once that occurs, the person has very little chance of moving out of this situation. The only way out is to move to another group home. CSC would be very concerned if we continued with this model.
CSC would like to see NDIS funding ‘rules’ allow people the same choices that other people in the community have. CSC is not against people with a disability sharing their home together, as long as this is their choice and not the only option available to them. If an individual’s personal care support funding is always linked to where they live, this breaches Article 19 of the CRPD which states:
Parties to this Convention recognize the equal right of all persons with disabilities to live in the community, with choices equal to others, and shall take effective and appropriate measures to facilitate full enjoyment by persons with disabilities of this right and their full inclusion and participation in the community…
The current funding structure of accommodation and support services is in a deathly embrace. This nexus must be broken! People with disabilities have the right to choose their place of residence and choose their support services. The NDIS legislation must ensure protection for people with disabilities from this indirect form of discrimination. The legislation must enshrine the right of people with disabilities to live where and with whom they wish and it must not be based on financial considerations or a very broken system will be perpetuated.
Community Safeguards Coalition appreciates your consideration of this Submission.
Carol Holt
Chairperson
NDIS Bill 2012 Submission
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CHARTER OF
THE COMMUNITY SAFEGUARDS COALITION
Who we are: The Community Safeguards Coalition is a network of people with disabilities, families, friends, advocates and allies of people with disabilities in Queensland.
Our mission: To promote people with disabilities having the opportunity to pursue the same range of lifestyles as other members of the community and to safeguard against policies, practices and legislation that limit or deny these opportunities.
What we believe in: This means: A good life with People with disabilities being part of families, having friends, relationships with neighbours, and work mates. Sharing interests, passions, life events, and others everyday moments through these relationships.
Being part of the Living in the community, being educated in regular schools, having a job community in real or meaningful things to do during the day, having friends, being members and meaningful ways of church or clubs, getting involved in local events, using the neighbourhood shops etc. Doing ordinary things along with everyone else.
Relevant and helpful Recognising that people with disabilities are individuals and one supports supports size does not fit all. Having the right supports to help people to be authors of their own lives and to grow and develop
Focusing on people Making sure that the needs of services and systems are not more first important than people. That people get to choose where they live, who they live with and how they will be supported.
Our Aims: To provide a vehicle for a collective of likeminded people, for collective and values based action To influence the ways that people with disabilities are supported in Queensland through influencing Government policy and wider practice To raise awareness of the impacts of changes to Government policy and legislation
Our Activities: The Community Safeguards Coalition will: Encourage wide membership of the Coalition Draw on the combined knowledge, wisdom and experience of the network Make sense of “what is going on” Tell it like it is, to those who need to know Gather information from as broad a base as possible Widely disseminate information Offer an analysis of reforms and direction of disability services
Community Safeguards Coalition Charter
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Principles for Community Living
PEOPLE WITH DISABILITES, REGARDLESS OF ABILITY, SHOULD HAVE THE RIGHT
AND OPPORTUNITYTO LIVE IN A HOME OF THEIR OWN IN THE COMMUNITY.
People with disabilities should have the right and opportunity to live in typical, decent, safe, accessible housing in the community. People with disabilities should have choices about the neighbourhood they live in, the style of community housing, and the people with whom they will live. The preferences of each individual should guide all aspects of the selection of housing, including whether the individual will live alone, with their family, roommates, extended family, spouse or friends. People with disabilities should have the same tenant and ownership rights and opportunities as other citizens, including the option to own or lease their own homes or apartments. Housing and support services should be provided by separate organisations so the individual’s home is not jeopardized by a change in their relationship to the service provider. People with disabilities should have the opportunity to create a home of their own, reflective of their personal routines, values and lifestyles.
ALL INDIVIDUALS SHOULD BE ENTITLED TO THE SUPPORTS NEEDED TO LIVE IN
THEIR OWN HOME AND PARTICIPATE FULLY IN COMMUNITY LIFE.
People with disabilities should receive whatever supports they need to live fully in their own home and community with dignity, autonomy and respect. People with disabilities should have the option to live in their own homes in the community without risking the loss of support. People with disabilities should not be required to live in an agency facility or to become impoverished to obtain support services. People with disabilities should have maximum control over their support arrangements, with advocacy and support, independent of services, in making these decisions. People with disability have a right to determine who will provide supports including hiring, firing , evaluation and training of support workers.
ALL ADULTS SHOULD HAVE OPPORTUNITIES TO PARTICIPATE IN COMMUNITY LIFE.
People with disabilities should have opportunities to be involved with ordinary people on a partnership basis and to develop relationships with neighbours, co-workers and community members. People with disabilities are entitled to decent, safe, and affordable housing; education; financial security to meet basic needs; health and medical care; and community transportation, employment and recreation. People with disabilities should have opportunities to contribute to the diversity and strength of communities.
Community Safeguards Coalition Charter
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Co-Signatories to “My Life, My Home, My Solution” – Position paper by Organisations. Signatory in brackets.
- Nyinda Park Co-Op (Jacinta Bishop)
- Buckler Services (Kathy Buckler)
- FSG Australia (Vicki Batten, CEO)
- Uniting Care Centre for Social Justice (Greg Mackay)
- Uniting Care Centre for Social Justice (Tilly Igras)
- Mamre Association Inc. (Kathryn Treston)
- Parent to Parent Association Queensland Inc. (Julie Simpson)
- Kyabra Community Association (Sarah Duce/Gemma Scott)
- Spinal Injuries Association (Mark Henley)
- Crossroads Gold-Coast (Alan Banks)
- Spiritus Care Services Toowoomba (Peter Kinson, Co-ordinator)
- Innisfail District Flexi Respite Association Inc (President)
- Queensland Parents of People with Disability Inc. (Jan Steffan, Manager)
- Queenslanders with Disability Network (Anthony Baguley - President)
- Gold Coast Advocacy (Anna Comuzzo - President)
- Independent Advocacy Townsville (Marnie Coombes)
- Phoenix Lifestyle Support Incorporated (Manager)
- Access Arts Inc. (Sally Josephson)
- Real Living Options Association Inc.
- L.I.S.A
- Sequal Association Inc. (Kellie Bagent)
- Lifeline Community Care Queensland (John Pini)
- Queensland Advocacy Inc. (Kevin Cocks) 8
Co-Signatories to “My Life, My Home, My Solution” – Position paper by Organisations. Signatory in brackets.
- Connie & Jim Young – Conjas Pty Ltd
- Carol Thorne – Elements Lifestyle association
- Judy Richardson – Gold Coast Advocacy/PwMS
- Gulay Isler – Gold coast advocacy
- Capricorn citizen advocacy – staff and management committee
- Community living association Inc
- Catherine Hogan
- Kay Cavanagh & Lari Degney – Frontier Services Nth West isolated care
- Homelife Association 9
Co-Signatories to “My Life, My Home, My Solution” – Position paper by
Individuals
1. Julie Stuart 2. Mary Ranke
3. Margaret Graham 4. Pauline Summers
5. Anna and Keith Coventry 6. Madonna Nicoll
7. Barbara Page-Hanify 8. Jeff Hore
9. Diane Bates 10. Jean and Mike Reynolds
11. Terry and Carol Stewart 12. Judy Collins
13. Hugh Rose-Miller 14. Carol Holt
15. Curt Singleton 16. Leeann Milne
17. Annette Justin 18. David Verschur
19. Shane Pay 20. Sheree Jackson
21. Susanne Tuttle 22. Jeanette Micallef
23. Vanessa Van Ballegooyen 24. Diana Andrews
25. John Andrews 26. Susette Hume
27. Carol Weston 28. Jill Merritt
29. Fran Vicary 30. Simon Burchill
31. Bob Whittaker 32. Colin MacKereth
33. Joan Roonie 34. Sally Banone
35. Don Studhome 36. Sally Healy
37. Naomi Edwards 38. Martina Salovac
39. Michael Steven 40. Ray Myatt
41. Julia Lyons 42. Unternaehrer
43. Margaret Lyons 44. Jan Dyke
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Co-Signatories to “My Life, My Home, My Solution” – Position paper by
Individuals
45. Pamela Gray 46. Josie McMahon
47. Anna Comuzzo 48. Joanne Myatt
49. Pam Baggot 50. Matthew Spencer
51. Alan Goury 52. Robert Nichols
53. Jane Warner 54. J Morrish
55. Margaret Watson 56. Jo-Ann Hoare
57. Larry Laikind 58. Jenny Speed
59. Rebekah Bradshaw 60. Margaret Ward
61. Ken Wade 62. Meriel Stanger
63. Tony Tregale 64. Heather Tregale
65. Lisa Bridle 66. Don Dias-Jayasinha
67. Maria McCaffrey 68. Donna Best
69. Kevin Cocks 70. D. Bryzak
71. Bozena Kleinova 72. Holly Terrace
73. Bentry Phiri 74. Emily Phiri
75. Hedy Stevenson 76. Blair Terrace
77. Clare Johnson 78. Kayla Nichols
79. Brenda McDowell-Jackson 80. Graeme Jackson
81. Sharon Rae 82. Anna Vencnl (not sure of spelling)
83. Anna Zalega 84. Vatalia Zalega
85. Gosia Skalska 86. Jayne Czzopaido
87. Dieter Woelfle 88. Ary Jean Ievers
89. Mike & Jean Reynolds 90. Kristen Jefferies
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Co-Signatories to “My Life, My Home, My Solution” – Position paper by
Individuals
91. Sandra & Byron Pritchard 92. J Young-Smith
93. Cathie Rogers 94. Les & Julie Scott
95. Nora King 96. Mary Rose Miller
97. Virginia Howie 98. Pam Termont-Schenk
99. Liz Martyn-Johns 100. Robyn Chinchen
101. Michelle Boles 102. Peter Exton
103. Pam Maram 104. Anneli Santala
105. Margaret & Bianca Bailey 106. Valda Rumsey
107. Catherine Hogan 108. Barbara Best
109. Kay Shaw 110. Ann-Marie O’Brien
111. Jennifer Barrkman 112. David Swift
113. Jeff Hore 114. Diane Bates
115. Deborah Bryzak 116. Kevin Cocks
117. Jenny Speed 118. Meriel Stanger
119. Ken Wade 120. Melinda Ewin
121. Mike Duggan 122. Rob Scagliotti
123. Mary Olivea 124. Larry Murchie
125. Melisa Stradman 126. Geoffrey Silver FSGA
127. Kris Field – FSGA 128. Rhea Badke (FSGA) 5467 3299
129. Tracey Simpson (FSGA (contact as 130. Peita Farrah Hadley (FSGA)
above)
131. Rhys Harnell (FSGA) 132. Jane Sherwin (Sherwin &
Associates)
133. Priscilla McCulloch (FSG) 134. Ben Radford (FSG)
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Co-Signatories to “My Life, My Home, My Solution” – Position paper by
Individuals
135. Wade Manthey (FSG) 136. Eugene Ewers (FSG)
137. Larry Lurchie 138. Mary Olivea
139. Pam Maram 140. Gregory Allie – FSGA
141. Luke Wallis – FSGA 142. Tony Bavissnett – FSGA
143. Linda Powell – FSGA 144. Ben Bailey – FSGA
145. Tim Martin – FSGA 146. Vikki West – FSGA
147. Debra Tew 148. Ann Greer
149. Zane Jackson 150. Noel Rae
151. Tara Nichols 152. Rochelle Steven
153. Ricky & Mary Spencer 154. James Hurtley
155. Annette Osborne 156. Dorothy Pratt 13