The Association for Children with Disability (Tasmania) Inc.

Annual Report 2016/2017

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The Association for Children with Disability (Tasmania) Inc.

Contents

AGM Agenda 2017

Minutes of 2016 AGM and Special General Meeting Minutes

Vision, Mission and Values

Staff

Board of Management

President’s report

Treasurer’s report

CEO’s report

Audited Financial report

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The Association for Children with Disability (Tasmania) Inc. 83a Melville Street, HOBART 7000

GPO Box 730 HOBART 7001 Phone: (03) 6231 2466

Email: admin@acdtas.com.au FREECALL: 1800 244 742

ABN: 32 091 767 455

Agenda 19th Annual General Meeting

The Association for Children with Disability (Tasmania) Inc. 83a Melville Street, Hobart

Wednesday 1 November 2016

Meeting start: 12.30pm 1. Welcome and Apologies. 2 Confirmation of Minutes of previous Annual General Meeting, held 2 November

2016. 3. Business arising from Minutes of previous AGM. 4. Reports:

President’s report.

Treasurer’s report

Audit report.

Chief Executive Officer’s report

6. Election of Office Bearers and Ordinary Board Members. 7. Appointment of the auditor for 2017/2018. 8. Close

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The Association for Children with Disability (Tasmania) Inc. 83a Melville Street, HOBART 7000

GPO Box 730 HOBART 7001 Phone: (03) 6231 2466

Email: admin@acdtas.com.au FREECALL: 1800 244 742

ABN: 32 091 767 455

18th Annual General Meeting Minutes– 83a Melville Street, Hobart, Tasmania The Association for Children with Disability (Tasmania) Inc.

Wednesday 2 November 2016 Meeting opened at: 12.45 pm. Lisa Risby, ACD President welcomed those in attendance and informed of proceedings, including the Annual General Meeting, and the Special General Meeting to be immediately followed by the 2015/2016 parent speech given by Selina Spowart. 1. Present: Lisa Risby (President and Chair), Roger Colbeck (Treasurer), Colin Broadbent (Vice President) Caroline Pegg (CEO), Sally McShane, Amanda Ashworth, Kate Stockford, Allison Levinson, Anne Ashford, Anthony Ozols (Liviende Veranto), Janine Arnold (Carers Tasmania), Beryl Phillips, Brad Lee, Derek Harnwell (SpeakOut Advocacy), Glenda Radcliffe (SpeakOut Advocacy), Jenny Dixon (SpeakOut Advocacy), Jill Sleiters (Glenorchy City Council), Kaylene Graham, Mary Gays (Baptcare), Nicole Gates, Shaelene Craddock, Toni Lee, Selina Spowart, Trinette Newell (TASSO), Patrick Carlisle, Beck Bewley (DHHS), Rosie Mooney (BIAT), Rebecca Spry (DPaC), Denise Direen, Chrissy Jamieson (Speak Out Advocacy), Deborah Byrne (BIAT). Apologies: Hon. Andrew Wilkie MP, Mark Morrissey (Commissioner for Children and Young people), David Clements (NDS), Denise Brazendale (Mission Australia), Di Fuglsang (Life Member), Drew Beswick (Oak/Possability), Hon. Elise Archer MP, Hon. Jacquie Petrusma MP and Minster for Human Services, Hon. Peter Gutwein MP, Hon. Rene Hidding MP, Sheree Hill (Life Member) Ingrid Ganley (Director Disability and Community Services), The Hon. Joan Rylah MP, The Hon. Julie Collins MP, Kate Wilson (Southern Support School), Kym Goodes (TasCOSS), Keren Franks (Tascare), The Hon. Madeline Ogilvie MP, Martin Gibson (DPaC), Michael Pervan (DHHS), The Hon. Michelle O’Byrne MP, The Hon. Matthew Groom MP, The Hon. Guy Barnett MP, Rebecca Kardos and Chris Warr (Aurora Energy), The Hon. Rebecca White MP, Richard Catt (Deputy Official Secretary Government House), Robbi Williams (JFA Purple Orange), The Hon. Roger Jaensch MP, Roz Madsen (AEU), The Hon. Sarah Courtney MP, Senator Carol Brown, Senator Jacqui Lambie, Senator Nick McKim, Senator Lisa Singh, The Most Rev. Julian C Porteous, Paul Byrne (Liviende Veranto). 2. Confirmation of Minutes of previous AGM: Motion: That the minutes of the 25 November 2015 AGM be accepted as a true and correct record of the meeting that opened at 12.05pm following amendment of the title of Senator recorded against Andrew Wilkie’s name and replacement with MP. Moved: Sally McShane Seconded: Deborah Byrne Motion carried 3. Business arising from the minutes: There was no business arising from the minutes of the previous AGM.

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4. Present members of the Board and staff were introduced to the general assembly and it was noted that Staff and Board of Management details are included for reference in the Annual report provided.

5. Reports:

The President report – Tabled and Spoken to.

Motion: That the President’s Report be accepted. Moved: Roger Colbeck Seconded: Jenny Dixon Motion carried

Financial report - Tabled and spoken to. Motion: That the 2015/2016 financial report be accepted. Moved: Lisa Risby Seconded: Colin Broadbent Motion carried

Chief Executive Officer’s report - Tabled and spoken to. Motion: That the Chief Executive Officer’s Report be accepted.

Moved: Lisa Risby Seconded: Trinette Newell Motion carried

6. Election of Office Bearers: Nominations have been received for Board positions (nine) equal to the number of Board vacancies and have been assessed, in line with the ACD constitution, as having specialty or skills sets designated by the Board of Management to progress the Associations strategic objectives. Nominees for Officer and Board members vacancies were declared duly elected. Moved: Lisa Risby Seconded: Amanda Ashworth Motion carried with a show of hands Officers of the Executive President Lisa Risby Nominated: Colin Broadbent Seconded: Roger Colbeck Vice President Colin Broadbent Nominated: Lisa Risby Seconded: Roger Colbeck Treasurer Roger Colbeck Nominated: Sheree Hill Seconded: Caroline Pegg Secretary Amanda Ashworth Nominated: Colin Broadbent Seconded: Lisa Risby Ordinary Board of Management Members Kate Stockford Nominated: Nadia Ollington Seconded: Colin Broadbent Sally McShane Nominated: Lisa Risby Seconded: Roger Colbeck Nadia Ollington Nominated: Kate Stockford Seconded: Lisa Risby Erin van Maanen Nominated: Kate Stockford Seconded: Colin Broadbent Sheree Hill Nominated: Lisa Risby Seconded: Colin Broadbent 7. Nomination of auditor Accru Hobart – Michael Burnett Nominated: Caroline Pegg Seconded: Lisa Risby Motion: That the nomination for Michael Burnett of Accru Hobart as auditor for 2016/2017 be accepted. Moved: Roger Colbeck Seconded: Lisa Risby Motion carried 8. Meeting closed at: 1.09pm.

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Special General Meeting Minutes

Wednesday 2 November 2016 The Association for Children with Disability (Tasmania) Inc.

ACD Head Office, 83a Melville St. Hobart

1. Meeting Opened: 1.09pm 2. Apologies: As per the 2 November 2016 AGM Minutes 3. Business for which notice has been given:

3.1 Changes to amend The Association for Children with Disability (Tasmania) Inc. constitution

for the purpose of modernising the document to bring it into line with current organisation operations and objectives.

It is noted that Members on review of the tabled the revised constitution made and ratified further amendments by show of hands at section 4. Objectives and Powers of the Association at the 4th and 5th dot points, to include the words families and carers of individuals with disability. Special Resolution: The tabled reviewed and revised, The Association for Children with Disability (Tasmania) Inc. constitution, including tracked changes and reasons for change and the specific amendments prominent in these minutes are accepted and recommendations therein are noted, endorsed, ratified or approved as appropriate. Moved: Patrick Carlisle Seconded: Lisa Risby Motion Carried

4. Meeting closed: 1.19pm

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THE ASSOCIATION FOR CHILDREN WITH DISABILITY (TASMANIA) INC. ACD

The Association for Children with Disability (Tas.) Inc. (ACD) is an independent state-wide, non-profit organisation that supports families across Tasmania with children and young people with disability and disabling conditions. Established in 1997, ACD began as a support group for parents who had children with disability. ACD’s direction is dictated by the needs of children and young people with disability or disabling conditions and their families.

Our Vision People with disability, their families and carers have equal opportunity to reach their potential and lead fulfilling lives.

Our Mission To provide community leadership and quality support options that improves participation and life outcomes of people with disability and their families and carers. ACD is a member organisation that provides: Information, Advocacy, Consultation and Training, Case Coordination and Peer Support Networks.

Our Values

Tasmanian families have access to a choice of; inclusive, quality, timely, accountable and innovative services and supports

Families are listened to, collaborated with and treated equitably and with empathy

Families have access to quality information and independent family support options

Families are represented

Families participate in and provide consent for decisions that affect their lives

Families are empowered by the support they receive

Organisations work in the best interests of the person with disability

Tasmanian families are connected with the community

Parents Empowering Parents

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ACD STAFF DETAILS 2016/2017 HOBART Head Office 83a Melville Street, Hobart GPO Box 730, Hobart 7001 Email: admin@acdtas.com.au Phone: 6231 2466 LAUNCESTON 59d Amy Road, Newstead 7250 Phone: 6343 0344 DEVONPORT Office 3, 55 Best Street Phone: 6424 7025 CLIENT FREECALL 1800 244 742 SOUTHERN BASED Caroline Pegg Chief Executive Officer Shaelene Craddock Senior Consultant, Case Coordinator and Trainer Nicole Gates Administration & Finance Officer, Parent & Carer Group Coordinator Allison Levinson and Rachael Shotter Information Consultants Denise Direen MyTime Facilitator

Suzanne Terhorst Family Advocacy and Support Janet Presser Trainer and casual fill in Toni Lee Case Coordinator Pauline Craig Case Coordinator Ainsley Scott Case Coordinator Nicholas Tabart Case Coordinator Berry Dunston Case Coordinator NORTH WEST BASED Jacque Boxer Senior Consultant Family Advocacy and Support Debbie Taylor Case Coordinator NORTHERN BASED Ann Smith Case Coordinator Gary McMurtrie Family Advocacy

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OFFICERS OF THE ASSOCIATION 2016/2017

EXECUTIVE PRESIDENT: Lisa Risby VICE PRESIDENT: Colin Broadbent TREASURER: Roger Colbeck SECRETARY: Amanda Ashworth ORDINARY BOARD OF MANAGEMENT MEMBERS: Sally McShane

Nadia Ollington Sheree Hill Erin van Maanen Kate Stockford

AUDITOR: Michael Burnett – Accru Hobart

PURCHASE OF SERVICES IN 2016/2017

IT AND WEBSITE HOSTS: Matt Weimann - XByte

INSURANCE BROKER: Rhonda Williams – GJ Gallagher

BOOK KEEPER: Jacqui de Carpentier

MYTIME PLAY HELPERS: Independent Health Care

PEPTALK DESIGNER: Carolyn Ward – Carolyn Ward Designs

WEBSITE DEVELOPMENT AND MAINTENANCE: Bradley Lee FUNDERS ACD acknowledges the following funding bodies that enable us to provide family supports and programs across Tasmania:

The Department of Health and Human Services – Funding Advocacy and self- advocacy support and information through the Disability and Community Services Agency

The National Disability Insurance Scheme & JFA Purple Orange – Funding Sector Development Peer Support Networks

The National Disability Insurance Scheme – Funding Case Coordination

The Department of Social Services & The Parenting Research Centre – Funding MyTime Parent Groups.

SPONSORS, DONORS AND SUPPORTERS Thank you to all those who supported and donated to ACD in 2016 and 2017 Special thanks goes to:

Aurora Energy, Rebecca Cardos & Chris Warr, for support and sponsorship of PEPTalk magazine

The Archbishop of Hobart Rev. C Porteous DD and his Charitable Foundation – Samaritan Projects Tasmania for support and sponsorship of the Finding Your Way website.

Damien Geason – Butler McIntyre and Butler

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ACD Support Options 2016/2017

Our Vision People with disability, their families and carers have equal opportunity to reach their potential and lead fulfilling lives

Parent/Carer Support ACD Intake, Service and System Navigation, Option exploration, Collaboration Assistance, Referral and follow up

Information Workshops, Forums, PEPTalk magazine, Resource Library and publications, ACD website, Finding Your Way website, Facebook

Referral Services, Supports, and Navigation Information

Case Coordination NDIS and Private

Professional Advocacy - Individual

State-wide, with Advocates based in the North, North West and South (Children 0-18 years)

Systemic Advocacy In direct response to data collected on family needs and issues. Membership and involvement on relevant peak bodies, State-wide representation on targeted Advisory and Alliance groups and Committees. Correspondence with all levels of Government. Participation and leadership in community and workforce development projects.

Parent/Carer Groups State-wide MyTime and NDIS Peer Support groups based in the North, North West and South

Community Education and Training

We can supply training from our packages: Working with Families, The Inclusion and Participation of Children with disability, Effective Practice in Working with People Who Display Behaviour of Concern, Instructional Design by ACD and presented by TAE qualified trainers.

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THE ASSOCIATION FOR CHILDREN WITH DISABILITY (TASMANIA) INC. PRESIDENT’S REPORT

FOR THE YEAR ENDED 30 JUNE 2017 It is my pleasure to present the 19th AGM President’s Report for ACD. During the past year ACD has achieved a great deal in terms of growth, innovation and governance. Growth – With the ongoing roll-out of the National Disability Insurance Scheme, ACD has continued to provide NDIS case co-ordination, with hours delivered increasing by over 60% compared to the past year. Our staff resources have increased proportionally to accommodate this. ACD’s high level of involvement in NDIS consultation and submissions to improve the system, has been informed by our professional involvement, particularly in complex case co-ordination. Governance – Kate Stockdale undertook the review of our Governance Guide to ensure that our policies and procedures are appropriate and up-to-date while Erin van Maanen reviewed our Constitution. The Board is sincerely grateful to both Erin and Kate for the many hours of hard and potentially tedious work involved! Our Board has been involved in a process of strategic planning and review using program area SWOTS (strengths, weaknesses, opportunities and threats) in order to remain at the cutting edge of service provision for Tasmanian families. Financial oversight has been magnificently handled by our FARM (Financial, Audit and Risk Management) sub-committee, which has meant that the work of our whole Board meetings has been streamlined, and informed by their expert advice. Innovation- The Time to Get into Sport Campaign has seen ACD partner with others in Government and the community to maintain the momentum from work in previous years, to influence and improve the inclusion of people with disability in sport. We are particularly cognizant of the involvement of Paraquad and DPAC’s Sport and Recreation department. We hope to continue to work on health and well-being in 2017-18. The creation and success of the Finding Your Way website has been a major factor in ACD’s success in securing NDIS Sector Development Grant funding through DHHS. We are developing and promoting resources to better connect NDIS participants with mainstream, community and universal resources, including access to regional, rural and remote areas. This exciting opportunity involves the collaboration of ACD Tas, Speak Out Association of Tasmania, Handbuilt Creative and CommuniCloud to produce materials including videos and an interactive website to align with ACD’s vision to create equal opportunity for people with disability, their families and carers, to reach their potential and lead fulfilling lives.

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This year our inaugural Leaders Program, the Grassroots Leadership for Social Change took place. This was held at Tarraleah with 15 parents/carers attending. Our ACD motto is “parents empowering parents”, and thanks to the vision of our CEO and her team, and able delivery of the program by Janet Presser, ACD’s determination to ensure recognition of, and support for, the community work, innovation and leadership of parents/carers has been realised. I was fortunate to be one of this inaugural group. It is hoped that there will be further funding to support the growth of the program. The second group of Community Leaders are about to begin their program. One of the Community Leaders, Selina Spowart, courageously shared her family story and experiences in a special edition of PEPTalk this year. Selina’s willingness to speak for those who have not received all the support they need, and as a result live with a little-discussed form of family violence, is gratefully acknowledged. ACD and Selina, with support from her Community Leaders Group, will work to increase awareness and influence Government legislation and policy on this issue. I step down as President of ACD after 3 years with some regret. It is so rewarding to be involved with an organization such as ACD, as I regard its ability to connect with its members (parents and carers) at the grass roots level and to provide a respected independent representative voice as so important. Our CEO Caroline, and all of our staff, working closely as a team, make such special and important contributions to the disability community in Tasmania. Caroline’s ability to see the bigger picture, and to have an insightful vision for the future, provides us with powerful leadership. All who work at ACD deserve our sincere thanks. ACD has a diverse and multi-talented Board of very dedicated and skilled people who are generous with their time and ideas. I thank them all. I also need to acknowledge the valuable work of retiring Board Member Sally McShane, and to thank her for the many unique contributions she has made to our Board, despite the enormous pressures and responsibilities of being a mother and carer. I will be staying on as an ordinary Board Member at ACD for a while, as I enjoy being involved with such a dynamic organization, which continues to evolve alongside families and in response to their needs. Lisa Risby ACD President

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THE ASSOCIATION FOR CHILDREN WITH DISABILITY (TAS.) INC. TREASURER’S REPORT

FOR THE YEAR ENDED 30 JUNE 2017 On behalf of the board I would like to present this year’s annual financial report for the year ending 30th June 2017, where the association achieved a surplus of $62,937.68 compared to the previous period surplus of $21,640. Income increased by 24 per cent primarily due to a 115 per cent growth in NDIS Case Coordination income and a 26 per cent growth in Parent Carer Group funding. The board concentration on targeted business projects and income source improvement continued in this financial year with an emphasis on building the association’s financial base. There was particular importance placed on increasing our reach to parent carer stakeholders and growing preventative program and information options. The majority of direct program delivery growth occurred in Southern Tas. in the NDIS Case Coordination area, with a 61 per cent increase in staffing hours. We also employed a staff member to supply NDIS Case Coordination in the Launceston area and extended our Peer Support Network reach to Launceston and Devonport. With the ongoing changes that are occurring in the community sector and the NDIS implementation, the Board of ACD will be vigilant in maintaining financial viability to ensure that we can continue to support our members and their families. We continue to seek and assess funding opportunities and identify potential threats to ACD. We will maintain our focus on strategies to gain and maintain funds to supply much needed intervention and preventative programs to our parent and carer stakeholders. We note our valued relationship with Aurora Energy who continued to contribute to ACD in support of Tasmanian families with children with disability, through sponsorship of our PEPTalk magazine. We acknowledge our ACD staff, particularly Nicole Gates, who continues to provide in house financial record keeping and our book keeper Jacqui De Carpentier. For their assistance in financial decision making, I would like to thank the Finance, Audit, Risk Management committee who meet monthly, our Board colleagues and CEO for their support and input over the last 12 months. Roger Colbeck Treasurer ACD.

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THE ASSOCIATION FOR CHILDREN WITH DISABILITY (TAS.) INC. CHIEF EXECUTIVE OFFICER’S REPORT FOR THE YEAR ENDED 30 JUNE 2017

On behalf of the ACD Board and staff I am pleased to present this 2016/2017 report to members.

ACD continued to build on the good work from last year and reached more of our target population

(parents and carers); successfully increasing the numbers of direct service users (Advocacy, Peer

Support, Case Coordination) by 22 per cent and information service users (over the phone and email,

Finding Your Way website, PEPTalk, and Facebook) by 60 per cent.

Increased numbers of ACD Case Coordination staff brought the added value of more time capacity for

activity such as, research and follow up to assist with enquiries, writing for PEPTalk, presenting to

parent and carer and Professional bodies, providing stakeholder representation on advisory groups,

meeting with and liaising with government, community and service providers, and participating in

professional and team development opportunities.

This year we focused on the delivery of quality programs to our consumers. We explored opportunities

to trial innovative ideas designed to meet parent and carer needs. We undertook goal based program

planning and regular team and peer review and assessment, and designed and implemented systems

and processes to strengthen ACD program delivery and organization health.

There is an increasing pressure to deliver more with less funding and to adapt quickly to change.

Keeping a good balance between financial and organization health is ever more challenging and ACD

remains vigilant and mindful of the changing disability and community sector environments and

continues alongside our members, consumers, board of management and staff to carefully craft our

way to a sustainable future.

ACD is in a good position to launch into 2017/2018.

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TABLE 2: NUMBER OF PEOPLE ACCESSING ACD PROGRAMS AND SUPPORTS

IN 2016/2017

Advocacy 236

Information – requiring less than 1 hr of staff time 476

*Information – users of the Finding Your Way website 3250 Peer Support Network participants – state-wide 146

Case Coordination participants 64 TOTAL ACD USERS 4172

*Information data – does not include other information sources, PEPTalk publication and Facebook posts.

PROGRAM INCOME PERCENTAGE RECEIVED IN 2016/2017 Advocacy and Information - 40.5% Case Coordination - 42% Parent and Carer Groups - 14.5% Other - 3%

Advocacy and Information,

45%

Case Coordination

40%

Parent/Carer Groups, 12%

Sponsors/Members and Donors, 3%

TABLE 1: ACD PROGRAM AREAS AND STAFF TIME SPENT 2016/2017

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ADVOCACY AND INFORMATION In 2016/2017, ACD staff responded to 236 referrals from parents and or carers requiring Advocacy and Support to resolve 434 primary issues. ACD staff direct time spent on individual Advocacy and support referrals for a 52 week period, not including travel, research, community development activity, planning, note taking and data recording time was 2756 hours for the year; an average of 11.7 hours per case. Time spent per case increased by 2.7 hrs this year but this figure was augmented only due to the increase in average time spent on very complex cases. Tables 4 & 5 continue to demonstrate the need for Advocacy to families and carers with children with disability to assist them to resolve issues across a number of environments and mainly when children are school age (6-18yrs).

0-5yrs6%

6-12yrs48%

13-16yrs34%

17-18yrs12%

TABLE 4: AVERAGE AGE OF CHILD OR YOUTH EXPERIENCING ISSUES THAT REQUIRE ADVOCACY

20%8% 3%

15%

32%

11% 8% 3%

Child and Youth Disability Diagnosis

TABLE 3: DISABILITY DIAGNOSIS REGISTER OF CHILDREN AND YOUTH ACCESSING ADVOCACY AND CASE COORDINATION

Multiple Disability Mental illness Down Syndrome

Global Delay Autism Spectrum Other

Neurological No diagnosis

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ACD concentrates on empowering families accessing individual Advocacy in support of their child/ren and young people 0-18yrs of age. Staff worked to bring about assisted outcomes and successfully closed 183 cases this year alongside family members, and in collaboration with many key stakeholders. Table 5 demonstrates the primary issues for referral to Advocacy with Education continuing to be a clear area of concern for parents and carers and their children and young people with disability. In 2016/2017, 32% of families and carers who self-referred to ACD Advocacy were assessed by staff (using ACD’s impact and urgency matrix) as presenting with primary issues with a high urgency and high impact rating at the point of access. This compared to 20% in 2015/2016 and reflected increasing exclusion from education settings, and the emotional distress and affect reported by those unable to urgently access a service or support.

31%

12%

36%

18%

3%

Assisted Outcomes Cases not progressed

TABLE 6: ADVOCACY OUTCOMES & TIMEFRAMES

1-3months 4-6months 7-12months 12months+

130

12 618 20

52

20 15 19 15 2410 5

15 13 15 21 24

Issue/category

TABLE 5: 2016/2017 ADVOCACY ISSUES

Education BehaviourChild Care Medical HealthHousing NDIS Nav.Respite Mental HealthTransport TherapyService and Resource Gaps Form or letter completionGateway ComplaintTransition Alleged DiscriminationFunding Child and Vacation Care

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ACD Advocates were able to assist 67% of parents and carers within 6 months of referral. The cases not able to be progressed within a 12 month period increased by 2%. Table 7 demonstrates the presenting barriers in these 30 cases.

TABLE 7: 2016/2017 REPORTED BARRIERS TO ACHIEVING OUTCOMES Education System/Environment/ Skills/Legislation – 8 cases

The Education facility cannot make the necessary adjustments to supply education between the hours of 9am and 3pm.

Full time working parents offered e-school and part time school enrolment.

Occupational Health and Safety reasons (risk to others or self) stated for no supply of education.

Advocacy/Human Resource - 3 cases Lack of human resource availability to provide Advocacy at the time and place required.

Housing System/Stock Resource – 3 cases

Families with children with disability have specific public housing requirements and Housing stock is not available or modifications are not completed.

Health System/No appropriate Facility/Human resources – 4 cases

Secure hospital ward for adolescents with challenging behaviour who are in need of immediate assessment and treatment.

Cannot access Speech or Occupational Therapy - NW.

Cannot access child Psychology Assessment - NW.

Cannot access a Paediatric Specialist - NW.

In home and Community Support/human resource - 3 cases

Services cannot supply in home staffing assistance in a rural setting and when urgently required.

Transport/Policy/Lack

of Understanding – 1 case

School Bus driver (private contractor) passes on property damage costs to parents after not preventing bullying to a child that lead to behaviour escalation.

Early Education and Care/human resources – 2 cases

Childcare access is restricted because professional support is not available for the child for the hours that the parent requires.

Childcare System/ Service Gap/skills – 2 cases

Vacation care and Outside School Hours Care are not available or cannot accommodate the care and support of a child with significant support requirements.

Community Specialist Support Gap – 4 cases

No service is available to supply urgent behaviour intervention outreach or residential support.

No service available to supply urgent across system Case Management.

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Community Development and Systemic Advocacy Proactively, ACD staff represented the best interests of families in the Advocacy area by time spent, evolving innovative ideas and participating in and/or undertaking community development projects. ACD is involved in many strategic alliances, on working groups, reference groups and committees, and writes submissions to Government to influence and suggest ideas for addressing key issues affecting families and their children and/or young people with disability across Tasmania. Table 8 demonstrates many areas that require priority and focus for community development work and systemic advocacy in Tasmania in line with attaining equal rights and improving the quality of life of children and young people with disability and their families. ACD was not sufficiently resourced to undertake work across all of these areas in 2016/2017.

TABLE 8: SYSTEMIC AREAS REPORTED IN 2016/2017 WHERE COMMUNITY DEVELOPMENT WORK IS REQUIRED HEALTH

Resource gap. Tasmanian Hospitals are under resourced and in need of Paediatric Specialists and especially in the NW. Families report travelling interstate for appointments, operations and medical care.

Resource gap. Hospital emergency departments are not able to ensure consistently quick access/assessment to children with disability who are unable to wait for lengthy periods of time. Families report increased use of call the Doctor or GP assist where appropriate and available.

Resource gap. Secure hospital and/or short-term accommodation units are not available for children and adolescents who exhibit harmful challenging behaviour. Under resourced Tasmanian Hospitals lack specialist facilities to manage the hospitalization, assessment and treatment of children in this situation. Families report managing violence in the home.

Resource gap/government cooperation gap. Families report violence in the home and no appropriate services to access for immediate assistance. Lines of responsibility (State and Australian Government) to clarify and determine a funding source for community outreach behaviour intervention services.

Resource gap/Inter-agency/government cooperation gap. Who is responsible for funding (State Health or NDIS) to enable trusted paid support providers to supply non-medical care to people with disability during their hospital stay? Lines of system responsibility require clarification and resolution.

Research/Data gap. Social Determinants of Health data is lacking for parents and carers of people with disability. Anecdotal evidence suggests that health outcomes for carers are poor. Is there a correlation between carer’s anxiety and stress and disease and illness?

System Gap/government cooperation gap. NDIS Participants cannot source disability specialist crisis response as emergency funds are not available.

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Resource Gap. Non NDIS registered people with disabling conditions requiring Psychology Assessment across Northern Tasmania are not able to gain timely assistance.

Resource Gap. Non-registered NDIS people requiring funds for needed equipment and modifications.

EDUCATION

Resource Gap. The education system is under resourced and unable to supply sufficient disability

skill and expertise. Compulsory professional development for teachers could improve this situation

quickly.

Education gap. The Bachelor of Education has compulsory units that will assist those studying to

improve their ability to teach students with disability. These units are not introduced as core

subjects to the learner until year 3 unless a relevant elective is chosen.

Resource/research gap. Models of education that provide for students in different environments

need to be researched, trialed and funded to enable the education and inclusion of many children

with disability. The system is struggling to respond effectively and consistently to long standing

issues in educating children with disability, resulting in no or low education outcomes for children

who are forced into part time enrollment, e-learn, or distance or home education.

Resources/skills gap. Early Education and Care services lack disability expertise and sufficient

resourcing to source information and training to meet individual child needs. Compulsory subjects

(disability education and awareness) in the cert III Children’s Services course could improve this

situation quickly.

Policy/system issue. Feedback and grievance mechanisms require review – the onus of

responsibility is on the complainant to provide, maintain and collect evidence in relation to an issue.

As many Tasmanians have no or low literacy levels verbal mechanisms could be developed. Parents

and Carers report that they feel that they are seen as “problem parents” if they raise issues and fear

school community reprisal.

System/processes issue. Some attempts to block Advocacy alongside a parent or carer are evident

following escalation, of unresolved concerns or long-time exclusion issues, to Learning Services,

Minister for Education or the Anti-Discrimination Commissioner.

Resource gap/system and process gap. Lack of system human and financial resources to provide for

fast assessment and intensive but short-term therapy or intervention to meet the needs of a

student with disability.

FAMILY SUPPORT

Disability Specialist Service and Support Gap/NDIS registered providers. Service contraction is evident (in the NDIS provider market) to people with high and complex needs. Pre NDIS issues, lack of disability specialist services and skilled workforce remain and have been exacerbated. NDIS review of available services and research into needed services for Tasmanian Participants and small population regions to provide a detailed assessment and synopsis is needed.

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Gaps reported. Emergency respite, community support, vacation care, holistic complex Case Management services, therapists.

System gap. Housing. Lack of available and accessible Public Housing and understanding of disability and how this impacts on families and their housing requirements.

Across system issues/Financial support gap. Parents and carers report being unable to work full time or part time as a direct result of child care needs due to early education or education exclusion and/or no availability of services and supports. Parents report financial distress as the cost of living rises.

TABLE 9: INFORMATION SUMMARY 2016/2017

NUMBER OF CONTACTS Information to

empower

NO OF POSTS OR PUBLICATIONS

FYW USERS

Service, system, support, resource, Information navigation

235

Documents & Info that assist to plan and/or self-advocate

157

In crisis Behaviour support and information 15

Guided Referral 18

Disability Specific Information 29

In crisis family support to siblings or others 22

Facebook articles posted that inform and empower

260

PEPTalk magazine recipients x 3 publications – Members

*500

Finding Your Way website - Families 1300

Finding Your Way website - Service Providers/Professional

1350

Finding Your Way website – General Users

600

SUB TOTAL 476 760 3250

TOTAL 4486

*As with previous data collection only one PEPTalk publication was recorded as 500 information recipients. In 2016/2017 ACD gave and or sent out 2000 copies of PEPTalk and published 3 editions (September 2016, December 2016 and May 2017).

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PEER SUPPORT NETWORKS ACD’s reach to families extended to all regions of Tasmania this year through provision of MyTime and NDIS Peer support programs, with 146 parents and carers regularly attending sessions and groups. The NDIS Peer support program gave us a much needed funded opportunity to talk with parents and carers and work alongside them as they prepared for their first NDIS plan or navigated their way through the many processes of the system. ACD has connected and facilitated parents and carers with children with disability coming together for the past 19 years and these two programs provide different models to achieve a similar outcome. This year ACD staff linked parents and carers accessing other ACD programs to the peer support networks when we had a number of people expressing a need for the same information. This created efficiencies for ACD and those newly connected with a peer support groups through internal referral reported that there was an added bonus of meeting with like-minded peers. ACD places great value on this support program area and much planning and preparation is undertaken to ensure its continued success and development. A new initiative - In May and June 2017 we invited some of our ACD Member parent and carer community leaders to be the first to take part in a series of workshops that would become the foundation for ACD’s grass roots Leadership for Social Change training package. The ultimate aim of the program, based on a leadership for social change model, is to prepare and support current and emerging leaders to harness their skill, knowledge and networks, realise their position of strength and effect invaluable community change. The programs major concept is that leadership is ultimately about change, particularly change that benefits others in our local and global communities and that we can achieve so much more together than we can as individuals. The program launch was very successful and this first group of amazing community leaders are well connected and continue to do important work across the Tasmanian Community. We look forward to more time in this space alongside parent and carer community leaders in 2017/2018. Jacqui Petrusma MP, through DHHS and the Disability and Community Services agency kindly gave us a one off grant to fund peer support in the 2017 calendar year. This will fund the new leaders going into the program at the end of 2017.

CASE MANAGEMENT/COORDINATION ACD continued to offer and deliver Case Coordination services to families and carers and NDIS participants aged 6-25 years old. Participants who access ACD prior to turning 25 may choose to stay with ACD for this service. From July 2016 12-14 year olds became eligible for the scheme in Tasmania with many receiving their first plan from October 2016. ACD had a surge of referral during this period and recruited and employed new staff and increased our staffing capacity in this area by 61% in response. ACD worked alongside 64 families and children and young people in the provision of this service this year and offered Case Coordination to northern participants for the first time. The ACD Board’s decision to offer this service to parents and carers has been vindicated on a number of levels. ACD staff understanding of internal workings of the NDIS has led to improved outcomes for parents and carers and people with disability and ACD’s ability to supply effective and informed systemic advocacy.

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KEY ACD PROJECT WORK IN 2016/2017 SPORTING OPPORTUNITIES ACD continued to be heavily involved in raising awareness of the importance of people with disability participating in sport. There is a noticeable ground swell of support across the community and many very dedicated individuals that are determined to improve the inclusion and participation outcomes in this space. We have the pleasure of working closely with Rebecca Spry from the Department of Premier and Cabinet, Communities Sport and Rec. who keeps her finger on the pulse of all things Sport and Rec. ACD presented at a Sport and Rec. forum this year, with a Member and a parent staff member taking part on a panel and discussing the importance of opportunities and strategies for involving people with significant cognitive disability in sport. We also shared the success of the NDIS funded Time to Get Into Sport campaign and the videos made during stage 1 of the project that showcase Tasmanian athletes, showing courage, skill and dedication to their sport. ACD would like to thank all involved in the video production and especially those with speaking parts; Lily Kelly, Clayton Johnson, Alan Dengate, Emma Jago, Olivia Fox, and Colin Wigg.

Stage 2 of this project brought over 2000 people to the ACD designed and operated Finding Your Way website and Sport, Leisure and Recreation resource sections with a Time to Get into Sport television advertisement playing throughout the 2016 Paralympics in September 2016. The advertisement was screened again in June 2017.

Thanks also to Rebecca Spry for her regular article in PEPTalk’s Healthy Balance section.

THE FINDING YOUR WAY WEBSITE The Finding Your Way (FYW) Website continues to be a huge success and reach far and wide, with people from all over the community using it as their central point for supplying as well as Finding up to date service and support information and resources, aimed at assisting people with disability and their families during their life journey.

2%

25%

22%

45%

6%

Table 10: Youth's Age Case Coordination

6-12yrs

13-16yrs

17-18yrs

19-25yrs

26-30

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THE RESOURCE DEVELOPMENT PROJECT

In May 2017 ACD collaborated with SpeakOut, Handbuilt Creative and CommuniCloud in a successful proposal for an NDIS Sector Development Grant funds through DHHS. The project team are currently involved in the development and promotion of resources that will better connect NDIS particpants, with mainstream, universal, and community services, including access to regional, rural and remote areas.

The team will produce videos, print materials and an interactive website and map audio-visual networks across the Tasmanian community, reporting on gaps and making recommendations and developing strategies to improve access to existing audio-visual resources in the future. This is an exciting development for ACD and we look forward to launching the new website and resouces in 2017/2018.

PEER REVIEW OF WRITTEN MATERIAL Our relationship with the Parenting Research Centre and the Raising Children Network continued as ACD reviewed documentation for the Raising Children Network website. CONSULTATION AND SUBMISSIONS The NDIS - ACD has been heavily involved in representing and engaging our stakeholders this year in NDIS consultation, submissions and surveys. We regularly meet with the agency and other Advocacy groups to provide up-dates and discuss areas of concern and ideas for resolution.

Whilst the NDIS has significantly improved a person with life-long disability and their families’ financial capacity to purchase some needed services, supports and equipment and technology, there is much work to do in the coming years to build Tasmania’s capacity to meet these needs, and to ensure that the scheme’s implementation issues and bureaucratic processes do not result in an increase of the barriers to those who are the most vulnerable participants of the scheme.

This year we were part of forming a successful Advocacy Coalition with Speak Out, BIAT, and the Disability Education reform lobby that questionnaired aspiring MLC’s before they went to election about issues that affect parents and carers and people with disability. Later, group representatives were published in the Mercury and attended meetings and presented to MLC’s about concerns of the human rights impact if proposed changes to sections 17 and 19 of the Anti-Discrimination Act were legislated. This Act currently provides an invaluable protection for Tasmanians living with disability; people who face multiple barriers to meaningful participation in the community, and currently report daily instances of being marginalised, bullied, ignored and excluded. We are glad to report that the legislation was not amended. We also participated in discussions with many representative organisations about the need for one consumer representative Peak body in Tasmania. These discussions continue. GOVERNMENT HOUSE CHRISTMAS PARTY ACD was privileged to work alongside Government House, St Giles, and Paraquad on behalf of her Excellency Professor the Honourable Kate Warner AM and Mr Richard Warner to organize a fabulous Family Christmas Party on Saturday, 10th December at Government House Tasmania. This was an amazing way to finish the year in 2016. For all at ACD, this was a day, where we could celebrate and say thank you for the wonderful contributions that carers and family members and people with disability make to our community. The

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day was full of memorable moments; many of which were captured in photos and shared in the Christmas PEPTalk edition. SYSTEMS AND PROCESSES

We continued work on developing ACD programs, systems, processes and policies and aligning these to our strategic goals and objectives and the standards in the Disability Services Act. Policy in practice is valued by ACD at all levels.

INFORMATION FORMATS

Information formats at ACD are under a continuous review and development cycle and ACD has been inundated this year with relevant information from the sector, community and government to supply to parents and carers and people with disability.

The most difficult part about writing an annual report is knowing when to stop and worrying about what or who you may have unintentionally left out. ACD is an amazing, person centred and innovative organisation to work for, its members and community leaders, staff and Board of Management are inspirational in their commitment to ensuring that people with disability and their families and carers have equal opportunity to reach their potential and lead fulfilling lives. My sincere thanks go to all for your dedication and hard work! Your efforts never go unnoticed and are appreciated very much! Finally I would like to say a very special thank you to Lisa Risby, who has been the ACD President for the past 3 years. Lisa has provided wonderful support and leadership throughout this time. I personally have grown with Lisa as my mentor and appreciated the trust vested in me to realise ACD’s potential. Lisa is incredibly intelligent and perceptive and has effectively stayed in touch with ACD and used her experience, and knowledge of the organisation and its stakeholders to provide exactly the right leadership at the right time. I am honoured today to present Lisa with ACD Life Membership, for her outstanding contribution and service to this organisation over many years. ACD remains totally dedicated to influencing and empowering positive community change to improve the health and well-being and inclusion and participation outcomes for families and their children and young people with disability in Tasmania. We look forward to another busy year in 2017/2018.

Together we can achieve so much! Caroline Pegg CEO ACD (TAS) Inc.

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CLIENT SATISFACTION ACD is committed to quality service provision and as such welcomes compliments and complaints as a way of improving our service. We recognize that compliments and complaints are a valuable part in understanding client and stakeholder views of their experience with ACD.

SOME EXAMPLES OF COMMENTS RECEIVED IN 2016/2017

In our state-wide meeting, we were asked to name up “what was working well” in achieving moving schools forward in supporting children with Autism, and I named up working with ACD Advocates. Our Manager asked if this was the experience state-wide, and it was a big unanimous ‘yes!’ Great team there!

Thank you so much for your time this afternoon. I really hope that the research that Demi and I are doing, informed by people such as you and Selina, can help to raise awareness of this under researched and often overlooked aspect of violence in the home.

I’m very pleased to have my son back in main stream school, thank you ACD.

ACD have been amazing and our family is lucky to have found you to help to advocate for our daughter and assist in navigating the NDIS. An amazing organisation!

I am always singing ACD’s praises to people, keep up the great work!

Without ACD I’d hate to imagine where my son’s and my life would be. The service, the advice and friendship of the service couldn’t have been any better.

Thank you for attending the Roundtable. We were very grateful for your participation in the important discussion about students with disability.

Thanks for the recent edition of PEPTalk. I really related to Selina’s story and the challenges faced.

In the spirit of sharing, I am going to do a Facebook post in the morning about the Finding Your Way website – love it!!

Caroline, I have observed your staff persons handling of requests and delicate situations on multiple occasions and would like to compliment ACD on how well the organisation both supports and negotiates with groups in an open and practical manner.

Merry Christmas and Happy New Year. Hope it’s as lovely as you are ‘the best’, thank you, thank you, thank you!

Aurora Energy is focused on supporting organisation and not-for-profit activities which provide practical benefits to Tasmanian’s and their communities, and it is without any doubt that this is exactly what the Association for Children with Disability (Tas) does every day.

I am so very grateful for all the support I have received from ACD over the past 11 years or so. The subtle hand of discrimination is everywhere, and it was so good to have the support I needed to support the children in my care.

Thank you for everything you have done this year. It has been wonderful working with you!

Thank you both so much for coming in yesterday to talk to the students. Everyone really enjoyed it, and you were both great. That’s excellent work you’ve done on the Finding Your Way website!