Disability Advocacy by the Numbers

Statistics from the 2012-2013 Victorian Office for Disability Advocacy Program Quarterly Data Collection

Prepared by the Disability Advocacy Resource Unit

June 2014

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Contents

Executive summary.

1.Clients receiving disability advocacy services.

2. Client characteristics.

3. Advocacy issues.

4. Data limitations.

5. Next steps.

 

About DARU

DARU is a state-wide service established to resource the disability advocacy sector in Victoria by:

  • Providing resources to support the disability advocacy sector and disability advocates
  • Disseminating relevant and up-to-date information
  • Organising forums around the state so that there is a coordinated approach to issues of concern
  • Providing professional development opportunities and undertaking capacity building projects on behalf of the sector.

DARU is delivered in consortium by the Victorian Council of Social Service (VCOSS) and Disability Advocacy Victoria (DAV).

Disclaimer

Information provided by the Office for Disability to the Disability Advocacy Resource Unit has been de-identified to maintain the privacy and confidentiality of individuals with a disability.

DARU has only received the data presented here in aggregated form. The data has been aggregated and verified by the Office for Disability.

Data were not provided to DARU for all fields in the Quarterly Data Collection process for the Advocacy Program. All primary data provided have been reported in this document.

© Copyright 2014 Disability Advocacy Resource Unit

Disability Advocacy Resource Unit
Level 8, 128 Exhibition Street
Melbourne, Victoria, 3000
+61 3 9639 5807
E: admin@daru.org.au

Executive summary

Disability advocacy helps ensure the human and legal rights of people with disabilities are promoted and protected so that people with disabilities can fully participate in the community. The work of disability advocacy organisations is varied. It includes:

  • individual advocacy, where an advocate works directly with a person with a disability to provide information, advice, or support to take action to uphold their rights.
  • systemic advocacy, which addresses discrimination affecting a number of people with disabilities, by advocating for change to legislation, policies and practices.
  • self-advocacy, where people with a disability speak up and represent themselves, and organisations support people to do this.

The work of disability advocacy organisations is not always well understood. This document seeks to provide information about disability advocacy using data provided by the Office for Disability.

The 22 organisations funded by the Victorian Government through the Office for Disability Advocacy Program to provide disability advocacy services are required to report their activity through a Quarterly Data Collection (QDC) process. Aggregated and de-identified data from this process has been provided to the Disability Advocacy Resource Unit (DARU) to provide additional information to the sector.

The data in this report only apply to clients recorded as part of the Advocacy Program QDC. Organisations providing the data may support additional clients using other funding, and there are also other disability advocacy organisations that provide similar services but are not funded through this program. These additional clients and services are not covered by this data collection process, and are not included in this report.

The Office for Disability has provided the data for this report following a review of the QDC reporting process. The Office for Disability has advised that organisations requested the QDC information be reported back to the sector as part of this review.

In 2012-13, through the Advocacy Program QDC, disability advocacy organisations recorded providing services to:

  • 1632 new clients over the year;
  • an average of 756 clients per quarter, comprising an average of 408 new clients and 348 existing clients;
  • 51 per cent male clients, 46 per cent female clients, and 3 per cent transgender clients, on average, of those clients whose gender was recorded;
  • 3 per cent of clients recorded as being Aboriginal, and 8 per cent of clients recorded as being from a culturally and linguistically diverse (CALD) background.

The most common issues recorded were education issues and disability services issues, although the Office for Disability has advised that higher numbers for disability services and education reflect the way one organisation interpreted this question in the QDC form.

This report also contains case studies provided by organisations to illustrate the nature and impact of disability advocacy services. The case studies have been de-identified, disclosing neither the clients nor the organisations.

This is the first time aggregated data provided by disability advocacy organisations have been reported. It provides a valuable opportunity for stakeholders to understand the nature of the data and the data collection process. Information from this report may also be useful for organisations in planning their service delivery and advocacy.

This report also identifies the connections between the work of disability advocacy organisations and relevant parts of:

  • The United Nations Convention on the Rights of Persons with Disabilities
  • The Victorian Charter of Human Rights and Responsibilities Act 2006
  • The Victorian State Disability Plan 2013-2016

 

Clients receiving disability advocacy services

On average, disability advocacy organisations recorded providing services to an average of 756 clients per quarter. This comprised an average of:

  • 408 (54 per cent) new clients; and
  • 348 (46 per cent) existing clients.

Over the 2012-13 financial year, a total of 1632 new clients were recorded as being provided with services. The number of existing and new clients cannot be added to give a total number of clients for the year, as in some cases they are continuing clients from previous quarters.

Organisations reported the greatest number of clients in the first quarter (881 clients during July-September 2012), and the least number of clients in the third quarter (599 clients during January to March 2013).

Table 1: Clients receiving disability advocacy services

Quarter

Period

New clients

Existing clients

Total clients

1

Jul-Sep 2012

458

423

881

2

Oct-Dec 2012

373

336

709

3

Jan-Mar 2013

336

263

599

4

Apr-Jun 2013

465

370

835

Average per quarter

408 (54%)

348 (46%)

756 (100%)

Note: The total number of new clients for the year 2012-13 was 1632. Existing and new clients cannot be summated for a total number of clients for the year, as in some cases they are continuing clients from previous quarters.

Figure 1: Clients receiving disability advocacy services

Client characteristics

2.1 Gender

Of those clients whose gender was reported, on average for each quarter:

  • 51 per cent (197) were male clients;
  • 46 per cent (179) were female clients; and
  • 3 per cent (12) were transgender clients.

On average over each quarter, the gender of 388 clients was reported, compared with an average total of 756 clients per quarter. This means no gender was recorded for an average of 368 clients (49%) per quarter.

Table 2: Gender of clients

Quarter

Period

Male

Female

Transgender

Not reported

Total

1

Jul-Sep 2012

200

164

1

516

881

2

Oct-Dec 2012

137

146

1

425

709

3

Jan-Mar 2013

213

198

28

160

599

4

Apr-Jun 2013

238

207

18

372

835

Average per quarter

197

179

12

368

756

Notes: The ‘not reported’ figure is calculated by subtracting the number of clients with a gender recorded from total number of clients reported (from table 1). Data cannot be summated for a total number of clients for the year, as clients reported in one quarter may also have been clients in a previous quarter.

Figure 2: Gender of clients, by quarter

2.2 Age

On average over each quarter, the age of 463 clients was reported, compared with an average total of 756 clients per quarter. This means no age was recorded for an average of 293 clients (39%) per quarter.

Of the average 463 clients whose age was recorded each quarter:

  • 4 per cent (17) were aged 0-4;
  • 21 per cent (96) were aged 5-14;
  • 18 per cent (85) were aged 15-24;
  • 52 per cent (243) were aged 25-64; and
  • 5 per cent (22) were aged over 65.

Table 3: Age of Clients

Quarter

Period

Age

0-4

Age

5-14

Age

15-24

Age

25-64

Age

65+

Not reported

Total

1

Jul-Sep 2012

46

207

107

313

31

177

881

2

Oct-Dec 2012

9

35

62

160

23

420

709

3

Jan-Mar 2013

7

47

99

247

15

184

599

4

Apr-Jun 2013

7

95

72

253

19

389

835

Average per quarter

17

96

85

243

22

293

756

Notes: The ‘not reported’ figure is calculated by subtracting the number of clients with age recorded from total number of clients reported (from Table 1). Data cannot be summated for a total number of clients for the year, as clients reported in one quarter may also have been clients in a previous quarter.

Figure 3: Age of clients, by quarter

2.3 Cultural background

Of all clients receiving advocacy services, on average over a quarter:

  • 3 per cent (24) were recorded as Aboriginal; and
  • 8 per cent (59) were recorded as culturally or linguistically diverse (CALD).

The data provided does not allow us to determine the extent to which organisations did not report the cultural background of their clients. It is possible that the proportion of clients from Aboriginal or CALD backgrounds is much higher than reported here.

Table 4: Cultural background of clients

Quarter

Period

Aboriginal clients

CALD clients

1

Jul-Sep 2012

31

36

2

Oct-Dec 2012

8

78

3

Jan-Mar 2013

41

76

4

Apr-Jun 2013

14

46

Average per quarter

24

59

Note: Data cannot be summated to give the number of clients for the year, as clients reported in one quarter may also have been clients in a previous quarter.

Figure 4: Cultural background of clients, by quarter

Advocacy issues

The QDC nominates 12 advocacy topic areas, plus ‘other’, for organisations to record the type of issues their clients are facing.

On average per quarter, education and disability services were the issues that recorded the highest number of people who received advocacy support. However, the Office for Disability has advised that higher numbers for disability services and education reflect the way one organisation interpreted this question in the QDC form.

Table 5: Number of advocacy cases, by issue by quarter

Issue

Q1

Q2

Q3

Q4

Average per quarter

Education

201

171

189

234

199

Disability Services

155

81

163

133

133

Accommodation

61

45

67

93

67

Other

56

47

56

60

55

Health

51

48

62

49

53

Family

58

42

54

46

50

Legal

44

27

38

35

36

Abuse and Neglect

53

32

32

22

35

Leisure and Recreation

19

32

15

23

22

Transport

28

22

21

14

21

Employment

23

8

26

24

20

Built Environment

6

9

16

13

11

Gender

4

0

0

0

1

Note: The Office for Disability has advised that higher numbers for disability services and education reflect the way one organisation interpreted this question in the QDC form. Data cannot be summated to give annual tallies, as a case in one quarter may have also been reported in a previous quarter, and some cases may involve more than one topic of advocacy.

The QDC also collects case studies that illustrate the work of disability advocacy. These have been adapted for incorporation in this report, on each of the topic areas. The case study topic areas have been aligned with the relevant sections of the United Nations Convention on the Rights of Persons with a Disability, the Victorian Charter of Human Rights and Responsibilities, and relevant goals of the Victorian State Disability Plan 2013-2016.

3.1 Education

On average each quarter, disability advocacy organisations reported 199 people were provided with advocacy assistance on education. This was the highest number of people for an individual topic, although the Office for Disability has advised that the high number reflects the way one organisation interpreted this question in the QDC form.

The following human rights areas may apply to issues relating to education for people with disabilities:

  • UN Convention on the Rights of Persons with a Disability
  • Article 8: Awareness raising
  • Article 20: Personal mobility
  • Article 21: Freedom of expression and opinion and access to information
  • Article 24: Education
  • Victorian Charter of Human Rights and Responsibilities
  • Section 14: Freedom of thought, conscience, religion and belief
  • Section 15: Freedom of expression and opinion and access to information
  • Victorian State Disability Plan Goal 1
  • Outcome area 1: Better opportunities in education and early childhood development services

Case study 1: Thomas

Seven-year-old Thomas* was suspended from a private Catholic primary school in regional Victoria due to his disruptive and inappropriate behaviour. Thomas has autism. His mother, Sarah*, believed that the school had not acted on an agreed treatment plan for Thomas. Sarah sought advocacy support from a regional disability advocacy organisation. After consultation with a disability discrimination legal service, a letter to the school principal was written, along with supporting documents from Thomas’ paediatrician and psychologist.

Thomas returned to school full-time after the school agreed to put in place strategies recommended by the treating professionals.

* Names are invented to protect the identity of individuals.

Case study 2: Bai

Bai* wanted to complete the remainder of his secondary school education at a special developmental school. He required assistance to locate a school. He has an intellectual and a learning disability. Bai and his mother Ratana*, also needed support to determine what, if any, impact there would be on his disability support pension and his mother’s Centrelink Carer’s Payment once he returned to school. A disability advocate assisted Bai to research special schools close to his home, and to apply for transport assistance. Bai eventually returned to school and learned that his disability support pension would not be affected.

* Names are invented to protect the identity of individuals.
 

3.2 Disability Services

On average each quarter, disability advocacy organisations reported 133 people were provided with advocacy assistance on disability services. This was the second highest number of people for an individual topic, although the Office for Disability has advised that the high number reflects the way one organisation interpreted this question in the QDC form.

The following human rights may apply to issues relating to services for people with disabilities:

  • UN Convention on the Rights of Persons with a Disability
  • Article 20: Personal mobility
  • Article 26: Habilitation and rehabilitation
  • Victorian State Disability Plan Goal 4
  • Outcome area 1: More opportunities for independence, choice and control

Case study 3: Leah

Leah*, an Aboriginal woman, is case managed by a regional disability service provider. She has an acquired brain injury resulting from a brain tumour, and has also recently been diagnosed with schizophrenia. She uses a range of services to manage her medication and her behaviour when she inconsistently takes her medication, and with her daily living. Leah sought advocacy to assist her to challenge the decision to close her case. After meeting with each of the providers working with Leah, it was noted that Leah responded well to regular prompts to take her medication. Her case remained open for another month in order to trial a process for implementing the medical prompts. She also commenced receiving home care services.

* Names are invented to protect the identity of individuals.

3.3 Accommodation

On average each quarter, disability advocacy organisations reported 67 people were provided with advocacy assistance for accommodation. This was the third highest number of people for an individual topic.

The following human rights areas may apply to issues relating to accommodation for people with disabilities:

  • UN Convention on the Rights of Persons with a Disability
  • Article 8: Awareness raising
  • Article 19: Living independently and being included in the community
  • Article 28: Adequate standard of living and social protection
  • Victorian Charter of Human Rights and Responsibilities
  • Section 14: Freedom of thought, conscience, religion and belief
  • Victorian State Disability Plan Goal 1
  • Outcome area 2: Improved housing and accommodation choices

Case study 4: Ted

Ted*, 48, has an ongoing heart condition which affects his mobility and ability to work. He has no contact with his family and is homeless. He has been living in his broken down car in a residential street in regional Victoria since 2010. He required advocacy support to access his superannuation payout and to source permanent housing. Ted is now living in transitional accommodation, and he is on a waiting list for permanent housing.

* Names are invented to protect the identity of individuals.

Case study 5: Harold

Harold* is 93, has low vision and sometimes experiences confusion. He lives alone and does not receive any disability or home care services. When he approached a local home care assistance provider, Harold was told there was no available funding to assist him. He engaged an advocacy provider to seek a better outcome. The disability advocacy organisation learned that the home care provider had conducted Harold’s assessment over the phone. Harold had not disclosed his vision impairment. It was determined that Harold was indeed eligible for home care support, which he now receives weekly.

* Names are invented to protect the identity of individuals.

3.4 Health

On average each quarter, disability advocacy organisations reported 53 people were provided with advocacy assistance on health issues. This was the fourth highest number of people for an individual topic.

The following human rights areas may apply to issues relating to health for people with disabilities:

  • UN Convention on the Rights of Persons with a Disability
  • Article 10: Right to life
  • Article 25: Health
  • Victorian Charter of Human Rights and Responsibilities
  • Section 9: Right to life
  • Victorian State Disability Plan Goal 1
  • Outcome area 3: An improved response to lifelong health needs

Case study 6: Victor

Victor* is profoundly deaf and relies on an Auslan interpreter when attending his medical appointments. He has found that interpreting services are inconsistently provided when he attends medical appointments. Victor has discussed this issue with his disability advocate, who has set up an online complaints form for people who are deaf or hard of hearing who access hospital services. The register of complaints will be used by the disability advocacy organisation to advocate for better access to Auslan interpreting services.

* Names are invented to protect the identity of individuals.

3.5 Family

On average each quarter, disability advocacy organisations reported 50 people were provided with advocacy assistance on family issues. This was the fifth highest number of people for an individual topic.

The following human rights areas may apply to issues relating to family for people with disabilities:

  • UN Convention on the Rights of Persons with a Disability
  • Article 7: Children with disabilities
  • Article 10: Right to life
  • Article 23: Respect for home and the family
  • Victorian Charter of Human Rights and Responsibilities
  • Section 9: Right to life
  • Section 17: Protection of families and children
  • Victorian State Disability Plan Goal 4
  • Outcome area 3: The role of families and carers is better supported

Case study 7: Cynthia

Cynthia* was very distressed because her children had been removed from her home by child protection services for reasons she did not understand. Cynthia, an Aboriginal woman with an intellectual disability, was unable to obtain assistance from the local Aboriginal cooperative because she did not have any proof of her aboriginality. With assistance from a disability advocacy organisation, Cynthia learned that she was entitled to use the service of another Aboriginal cooperative that did not require her to provide proof of aboriginality. The matter is now being investigated and Cynthia has been provided with legal representation.

* Names are invented to protect the identity of individuals.

3.6 Legal

On average each quarter, disability advocacy organisations reported 36 people were provided with advocacy assistance on legal issues. This was the sixth highest number of people for an individual topic.

The following human rights areas may apply to issues relating to the law for people with disabilities:

  • UN Convention on the Rights of Persons with a Disability
  • Article 5: Equality and non-discrimination
  • Article 12: Equal recognition before the law
  • Article 13: Access to justice
  • Victorian Charter of Human Rights and Responsibilities
  • Section 8: Equality and non-discrimination
  • Section 23: Children in the criminal process
  • Section 24: A fair hearing
  • Section 25: Rights in criminal proceedings
  • Victorian State Disability Plan Goal 2
  • Outcome area 1: Better protection of human rights

Case study 8: Simon

Simon* applied for the disability support pension (DSP) and was placed on the Newstart Allowance. He appealed the decision with no success. He approached a regional disability advocacy organisation to assist with lodgement of a formal appeal. Simon was granted the DSP and provided with back-pay.

* Names are invented to protect the identity of individuals.

3.7 Abuse and Neglect

On average each quarter, disability advocacy organisations reported 35 people were provided with advocacy assistance on abuse and neglect. This was the seventh highest number of people for an individual topic.

The following human rights areas may apply to issues relating to abuse and neglect for people with disabilities:

  • UN Convention on the Rights of Persons with a Disability
  • Article 14: Liberty and security of the person
  • Article 15: Freedom from torture or cruel inhuman or degrading treatment or punishment
  • Article 16: Freedom from exploitation violence and abuse
  • Article 17: Protecting the integrity of the person
  • Article 22: Respect for privacy
  • Victorian Charter of Human Rights and Responsibilities
  • Section 10: Freedom from torture or cruel inhuman or degrading treatment or punishment
  • Section 13: Respect for privacy
  • Section 21: Liberty and security of the person
  • Section 22: Humane treatment when deprived of liberty
  • Victorian State Disability Plan Goal 2
  • Outcome area 1: Better protection of human rights

Case study 9: Rachel

Rachel* is the mother of two young children with disabilities. She has experienced family violence and required immediate support to remove herself and her children from the home. Rachel doesn’t speak English. She also has depression. A state-wide specialist disability advocacy organisation supported Rachel to apply for long term secure housing and put her in touch with a family violence centre. She has been allocated a case worker and has been placed in secure emergency housing with her children.

* Names are invented to protect the identity of individuals.

 

3.8 Leisure and recreation

On average each quarter, disability advocacy organisations reported 22 people were provided with advocacy assistance on leisure and recreation. This was the eighth highest number of people for an individual topic.

The following human rights areas may apply to issues relating to leisure and recreation for people with disabilities:

  • UN Convention on the Rights of Persons with a Disability
  • Article 20: Personal mobility
  • Article 30: Participation in cultural life recreation, leisure and sport
  • Victorian Charter of Human Rights and Responsibilities
  • Section 16: Peaceful assembly and freedom of association
  • Section 19: Cultural rights
  • Victorian State Disability Plan Goal 2
  • Outcome area 3: Greater participation in the community

Case study 10: Scott

Scott* is blind. He has a keen interest in science and history. Before losing his vision, Scott regularly attended exhibitions at the museum. Now he finds it difficult to view the museum website and independently navigate his way around the venue. With support from his advocate, who provided information about website accessibility guidelines, Scott is better able to navigate his way around the website.

* Names are invented to protect the identity of individuals.

3.9 Transport

On average each quarter, disability advocacy organisations reported 21 people were provided with advocacy assistance on transport. This was the ninth highest number of people for an individual topic.

The following human rights areas may apply to issues relating to transport for people with disabilities:

  • UN Convention on the Rights of Persons with a Disability
  • Article 20: Personal Mobility
  • Victorian State Disability Plan Goal 3
  • Outcome area 1: More transport options

Case study 11: Sally

After a protracted attempt to catch the train home from a visit to the city, Sally* worked with her disability advocate to lodge a disability discrimination complaint with the Australian Human Rights Commission. Sally is legally blind and relies on audible announcements on the train to let her know which stop is her station. She also relies on audible announcements to notify her of platform changes. On the day in question, no audible announcements were provided on the first train she caught, and an incorrect station announcement was given on the second train.

* Names are invented to protect the identity of individuals.  

3.10 Employment

On average each quarter, disability advocacy organisations reported 20 people who were provided with advocacy assistance on employment. This was the tenth highest number of people for an individual topic.

The following human rights areas may apply to issues relating to employment for people with disabilities:

  • UN Convention on the Rights of Persons with a Disability
  • Article 8: Awareness raising
  • Article 20: Personal mobility
  • Article 27: Work and employment
  • Article 21: Freedom of expression and opinion and access to information
  • Victorian Charter of Human Rights and Responsibilities
  • Section 11: Freedom from forced work
  • Section 14: Freedom of thought, conscience, religion and belief
  • Section 15: Freedom of expression and opinion and access to information
  • Section 16: Peaceful assembly and freedom of association
  • Victorian State Disability Plan Goal 2
  • Outcome area 2: Better pathways to employment

Case study 12: Gemma

Gemma*, 24, has a physical disability and just obtained her first job. Even though her new employer was prepared to employ her on a full award wage, her disability employment service provider encouraged her to use the supported wage system (SWS) a scheme that would require her employer to pay her at 25 per cent of the award rate. Gemma felt that her right to a fair wage was being infringed upon and approached a disability advocacy service to clarify her rights regarding employment. Her advocate explained how the SWS worked and provided information about pay awards. Armed with this information, Gemma chose to accept the job offer at the full rate of pay.

* Names are invented to protect the identity of individuals. ;

3.11 Built environment

On average each quarter, disability advocacy organisations reported 11 people were provided with advocacy assistance on leisure and recreation. This was the eleventh highest number of people for an individual topic.

The following human rights areas may apply to issues relating to leisure and recreation for people with disabilities:

  • UN Convention on the Rights of Persons with a Disability
  • Article 8: Awareness raising
  • Article 9: Accessibility

3.12 Gender

On average each quarter, disability advocacy organisations reported one person was provided with advocacy assistance relating to gender.

The following human rights area may apply to issues relating to gender for people with disabilities:

  • UN Convention on the Rights of Persons with a Disability
  • Article 6: Women with disabilities

3.13 Other

On average each quarter, disability advocacy organisations reported 55 people were provided with advocacy assistance on other issues.

The following human rights areas may apply to these issues:

  • UN Convention on the Rights of Persons with a Disability
  • Article 11: Situations of risk and humanitarian emergencies
  • Article 18: Liberty of movement and nationality
  • Article 29: Participation in political and public life
  • Victorian Charter of Human Rights and Responsibilities
  • Section 18: Taking part in public life
  • Section 16: Peaceful assembly and freedom of association
  • Section 20: Property rights

Data limitations

This report presents the data received from the Office for Disability, aggregated and de-identified, from the information collected by the QDC. There are limitations to this data, and this report may be a prompt for discussion about what other statistics organisations may wish to know about disability advocacy services.

Some of the data limitations noted in compiling this report include:

  • The inability to summate much of the data to get a figure for the number of clients assisted over a year, as it is not possible to determine what proportion of clients are continuing from previous reporting periods, especially in relation to further disaggregation of the data, such as by age, sex, or advocacy issue;
  • Large proportions of characteristics that are under-reported by organisations, for instance the 49 per cent of clients who were not assigned a gender in reporting. It is also possible that the proportions of Aboriginal and CALD clients are much higher, but may be affected by under-reporting;
  • The inability to cross-reference data – for instance, to desegregate data by both age and sex;
  • Inconsistencies in interpretation of some QDC questions between organisations, leading to some advocacy issues rating higher than they otherwise would have; and
  • Data were not provided to DARU for all fields in the Quarterly Data Collection process for the Advocacy Program.

Next steps

This report will be presented at the DARU Advocacy Sector Conversation Forum on 5 June, 2014, which will provide the opportunity for disability advocacy organisations to understand and discuss its findings. The report will also be provided to the Office for Disability, Disability Advocacy Victoria and disability advocacy organisations for their consideration.

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Author:
DARU

Date published:
Tue 24th Jun, 2014