National Disability Insurance Scheme Bill (2012)

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

deeply concerned about this issue.

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

• 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 3

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

External Considerations

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

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 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

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.

Co-Signatories to “My Life, My Home, My Solution” – Position paper by

Organisations. Signatory in brackets.

1. Nyinda Park Co-Op (Jacinta Bishop)

2. Buckler Services (Kathy Buckler)

3. FSG Australia (Vicki Batten, CEO)

4. Uniting Care Centre for Social Justice (Greg Mackay)

5. Uniting Care Centre for Social Justice (Tilly Igras)

6. Mamre Association Inc. (Kathryn Treston)

7. Parent to Parent Association Queensland Inc. (Julie Simpson)

8. Kyabra Community Association (Sarah Duce/Gemma Scott)

9. Spinal Injuries Association (Mark Henley)

10. Crossroads Gold-Coast (Alan Banks)

11. Spiritus Care Services Toowoomba (Peter Kinson, Coordinator)

12. Innisfail District Flexi Respite Association Inc (President)

13. Queensland Parents of People with Disability Inc. (Jan Steffan, Manager)

14. Queenslanders with Disability Network (Anthony Baguley - President)

15. Gold Coast Advocacy (Anna Comuzzo - President)

16. Independent Advocacy Townsville (Marnie Coombes)

17. Phoenix Lifestyle Support Incorporated (Manager)

18. Access Arts Inc. (Sally Josephson)

19. Real Living Options Association Inc.

20. L.I.S.A

21. Sequal Association Inc. (Kellie Bagent)

22. Lifeline Community Care Queensland (John Pini)

23. Queensland Advocacy Inc. (Kevin Cocks)

Co-Signatories to “My Life, My Home, My Solution” – Position Paper by

Organisations. (Signatory in brackets.)

24. Connie & Jim Young – Conjas Pty Ltd

25. Carol Thorne – Elements Lifestyle association

26. Judy Richardson – Gold Coast Advocacy/PwMS

27. Gulay Isler – Gold coast advocacy

28. Capricorn citizen advocacy – staff and management committee

29. Community living association Inc

30. Catherine Hogan

31. Kay Cavanagh & Lari Degney – Frontier Services Nth West isolated care

32. Homelife Association

Co-Signatories to “My Life, My Home, My Solution” – Position paper by Individuals

1. Julie Stuart 2. Mary Ranke

2. Margaret Graham 4. Pauline Summers

3. Anna and Keith Coventry 6. Madonna Nicoll

4. Barbara Page-Hanify 8. Jeff Hore

5. Diane Bates 10. Jean and Mike Reynolds

6. Terry and Carol Stewart 12. Judy Collins

7. Hugh Rose-Miller 14. Carol Holt

8. Curt Singleton 16. Leeann Milne

9. Annette Justin 18. David Verschur

10. Shane Pay 20. Sheree Jackson

11. Susanne Tuttle 22. Jeanette Micallef

12. Vanessa Van Ballegooyen 24. Diana Andrews

13. John Andrews 26. Susette Hume

14. Carol Weston 28. Jill Merritt

15. Fran Vicary 30. Simon Burchill

16. Bob Whittaker 32. Colin MacKereth

17. Joan Roonie 34. Sally Banone

18. Don Studhome 36. Sally Healy

19. Naomi Edwards 38. Martina Salovac

20. Michael Steven 40. Ray Myatt

21. Julia Lyons 42. Unternaehrer

22. Margaret Lyons 44. Jan Dyke

Co-Signatories to “My Life, My Home, My Solution” – Position paper by

Individuals

45. Pamela Gray 46. Josie McMahon

46. Anna Comuzzo 48. Joanne Myatt

47. Pam Baggot 50. Matthew Spencer

48. Alan Goury 52. Robert Nichols

49. Jane Warner 54. J Morrish

50. Margaret Watson 56. Jo-Ann Hoare

51. Larry Laikind 58. Jenny Speed

52. Rebekah Bradshaw 60. Margaret Ward

53. Ken Wade 62. Meriel Stanger

54. Tony Tregale 64. Heather Tregale

55. Lisa Bridle 66. Don Dias-Jayasinha

56. Maria McCaffrey 68. Donna Best

57. Kevin Cocks 70. D. Bryzak

58. Bozena Kleinova 72. Holly Terrace

59. Bentry Phiri 74. Emily Phiri

60. Hedy Stevenson 76. Blair Terrace

61. Clare Johnson 78. Kayla Nichols

62. Brenda McDowell-Jackson 80. Graeme Jackson

63. Sharon Rae 82. Anna Vencnl (not sure of spelling)

64. Anna Zalega 84. Vatalia Zalega

65. Gosia Skalska 86. Jayne Czzopaido

66. Dieter Woelfle 88. Ary Jean Ievers

67. Mike & Jean Reynolds 90. Kristen Jefferies

Co-Signatories to “My Life, My Home, My Solution” – Position paper by

Individuals

91. Sandra & Byron Pritchard 92. J Young-Smith

92. Cathie Rogers 94. Les & Julie Scott

93. Nora King 96. Mary Rose Miller

94. Virginia Howie 98. Pam Termont-Schenk

95. Liz Martyn-Johns 100. Robyn Chinchen

96. Michelle Boles 102. Peter Exton

97. Pam Maram 104. Anneli Santala

98. Margaret & Bianca Bailey 106. Valda Rumsey

99. Catherine Hogan 108. Barbara Best

100. Kay Shaw 110. Ann-Marie O’Brien

101. Jennifer Barrkman 112. David Swift

102. Jeff Hore 114. Diane Bates

103. Deborah Bryzak 116. Kevin Cocks

104. Jenny Speed 118. Meriel Stanger

105. Ken Wade 120. Melinda Ewin

106. Mike Duggan 122. Rob Scagliotti

107. Mary Olivea 124. Larry Murchie

108. Melisa Stradman 126. Geoffrey Silver FSGA

109. Kris Field – FSGA 128. Rhea Badke (FSGA) 5467 3299

110. Tracey Simpson (FSGA (contact as 130. Peita Farrah Hadley (FSGA) above)

111. Rhys Harnell (FSGA) 132. Jane Sherwin (Sherwin & Associates)

112. Priscilla McCulloch (FSG) 134. Ben Radford (FSG)

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

138. Pam Maram 140. Gregory Allie – FSGA

139. Luke Wallis – FSGA 142. Tony Bavissnett – FSGA

140. Linda Powell – FSGA 144. Ben Bailey – FSGA

141. Tim Martin – FSGA 146. Vikki West – FSGA

142. Debra Tew 148. Ann Greer

143. Zane Jackson 150. Noel Rae

144. Tara Nichols 152. Rochelle Steven

145. Ricky & Mary Spencer 154. James Hurtley

146. Annette Osborne

147. Dorothy Pratt

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