Speaking Up For You Inc.
The Precinct - Unit  F2 First Floor
12 Browning Street
West End Qld 4101
Telephone: (07) 3255 1244
Facsimile: (07) 3255 1266
E-mail: sufy@sufy.org.au
Postal address:  PO Box 5649
WEST END Q 4101 

Productivy Commission Inquiry into Disability Support

SUBMISSION

Speaking Up For You Inc (SUFY) is an individual advocacy organisation that is funded by the Commonwealth and State Government to provide individual advocacy to people with a disability who live in the Brisbane metropolitan area and the Moreton Bay Regional Council area. 
SUFY’s advocacy focuses on the fundamental human rights and interests of people with a disability. Some examples where fundamental needs are not met are where a person may:
•	Be homeless or in danger of becoming homeless
•	Be in physical danger 
•	Be in danger of becoming more vulnerable and isolated from the community
•	Live in inappropriate housing e.g. a young person living in an aged care nursing home due to the limited support available to live in the community 
•	At risk of losing long term and/or significant relationships. 
Only 13% of people requiring support in Queensland actually receive funding from Disability Services. This is despite the large increases in funding that have been made available over the last five years. Over the last 5 years the level of State funding of Disability Services has increased by $419.8 million, an increase of 150.2 percent.
This increased funding has done nothing to advance the Human Rights of people with a disability, with most funding going into infrastructure, i.e.:
•	buildings that continue to isolate and segregate people with a disability, 
•	group homes where people are forced into a co-tenancy situation as the only way of receiving support, or 
•	specially built locked facilities that make people with a disability seem  different, challenging or menacing and therefore not belonging in the wider society, in a local community or in a family.  
Over the last four years $25 million in funding has gone to support people with a disability in emergency and crisis situations. This funding is simply a bandaid response to a failing system and results in vulnerable people with a disability being placed in respite centres or placed in group homes as an interim option until a more long term vacancy in some other group home becomes available. This in turn results in individuals with a disability becoming so disempowered that a so called challenging behaviour is noted and a whole new component of the service system is introduced under the Restrictive Practices Legislation. 
While SUFY fully supports a no-fault disability insurance scheme, along with this initiative there must be a change in the way support and services are offered to people with a disability rather any continuing to throw more money at a system that fails to meet the Human Rights of people with a disability.
What is required?
•	That people with a disability have the opportunity and support to identify their own vision for a good life. This requires a shift in the way governments and service providers respond to people with a disability.
•	That the Queensland Government develop a system of accountability that uses generic health and wellbeing indicators along with service standards and human rights indicators rather than compliance based quality systems. 
•	Ensure that the Convention on the Rights of Persons with a Disability is acknowledged, encouraged and fulfilled.
•	The service system should promote self determination, choice, flexibility and control by responding to individual need using a range of service responses including individual funding and direct funding to ensure people are not forced into group home situations or institutions. Direct payment schemes help people to stay living in their own homes and are credited with reducing costs because of the need for fewer residential services. This increases the opportunity for people with a disability to maintain natural relationships with family and friends. 
•	That funding is based on individual needs rather than impairment and is based on a national assessment process.
Finally SUFY supports the Blue Skies Scenario that is included in this submission.

Dianne Toohey
Coordinator.

19 April 2010

The Blue Skies Scenario:
A vision for an inclusive community
In 2019, the community is strong and vibrant and embraces diversity.  While the work of growing community will never be complete, wherever a person with a disability lives, whatever their choice of lifestyle, their experience is one of rich inclusion and sense of belonging.
Central to a better life for people with disability is acknowledgement of their inherent rights as citizens, with an emphasis on having a secure home and enduring relationships, with service, family and community working well together to provide supports as and when required, in the community of choice.  The shift is evident as early as when a child with disability enters the child care system then school.  They are welcomed into the facility of the family’s choice, and have full access to the standard curriculum with supports as required.  There is a marked increase in the diversity, inclusiveness and uniqueness of lifestyles for people with disability.
What were the drivers for change in 2009?
In 2009, the most powerful driver for change was the shared commitment by all parties, including state and local government, to adopt a strengths based framework for enhancing sector/community partnerships.  The focus shifted sharply over a 5 year period from crisis based investment to proactive, early intervention and capacity strengthening responses to meeting needs.  
The role of government changed with the Commonwealth taking on full responsibility for funding individual support needs through a nationally consistent assessment process.  Meanwhile, the State Government focused on:
•	service development;
•	accountability; and 
•	building capacity in individuals and families to make better use of resources and drive their own future.
By 2012 both levels of government declared an intention to move away from infrastructure capital investment to community and social capital investment.  A key role of the State Government was the establishment of a strong network of Community Navigators* (Local Area Coordinators). Community Navigators provided timely access to local information and referral to generic and specialised services if required, but their primary focus is on building a network of enduring, lifelong, freely given relationships around the person.

The strategies employed by the State Government also included awareness raising education programs, such as:
•	kids teaching kids in every Queensland school;
•	mentoring programs and skill and experience building programs for people with disability and families at key life stages;
•	host family and shared care arrangements; and family collectives.
These strategies were developed in direct response to the expressed needs of community, individuals with a disability and families with close attention paid to content and choice of provider to ensure coherence.  These strategies were implemented as a function of specialist non government organisations.  
By the end of 2010, state and local governments were, together, actively driving strategies to build a safe, capable, responsive community that acknowledged that there is a place for all, and a role for all citizens in the building of their community.  These strategies included the establishment of a network of Community Builders* (community development workers) located across every region of the state.  The role of these skilled, committed people was to work closely with the Community Navigators, individuals with disability and the community to:
•	educate;
•	remove the structural, policy and attitudinal barriers to full inclusion; and
•	to ensure all people have the means and opportunity to make contribution as members of their community.
Local councils were aligned on development application processes and started working closely with developers and community groups, insisting on all new developments (in particular, housing) being based on the principles of universal design (footnote 1).  By mid 2010, a strong shift was noted in urban design with a range of spaces and places being established specifically to provide opportunities for people with disability to participate safely and generously in wider community life.  
Of particular note, were the frequency and quality of partnerships between state and local government, people with disability, families and housing groups.  These partnerships were critical to ensure a range of inclusive and sustainable housing alternatives (and the support where required) for people with disability, as they moved into adulthood — or in the case of acquired impairment — returned to living independently.
All levels of government were making sure their own business practices (such as procurement practice and public service accommodation/travel policies) become disability friendly.
At a service provider level, services willing to work in new ways were able to position themselves for sustainability through capacity funding (for infrastructure) and were able to offer a broad range of person-centred service responses.  By 2012 organisations had adapted readily to expectations that new services would be built around need rather than program eligibility, and had developed 5 year transition plans to ensure person-centred responses for existing clients.  At the same time, the range of options for funding these service responses broadened to include (but not be limited to) direct payment, individual funding, recurrent and life-stage based funding arrangements.
The role of the person with disability was clear
It was that people with disability:
•	identify their own vision for a good life, their needs and preferences wherever possible;
•	participate actively in the life of community to their full potential (in whatever sense community has meaning for them); and
•	inform and support continuous improvement in service delivery at a local level.
The role of a faithful family and enduring friends was clear
It was that a faithful family and enduring friends:
•	have a natural authority in the life of the person with disability;
•	assist the person with disability to envision, plan and build a decent life;
•	preserve their ordinary roles and relationships as family or enduring friends; and
•	are a consistent, enduring link between the person, the community and support system. 
The role of Community was clear
It was that community:
•	acknowledges, embraces, promotes, establishes, maintains, and develops further and rewards the gifts, talents and contributions of all of its citizens;
•	works in partnership with ‘significant others’ in the addressing of barriers that restrict valued community participation for all; and
•	values the opportunity to both individually and collectively act, so as to  ensure that the Convention on the Rights of Persons with a Disabilities is evident within the daily life circumstances of individuals with a disability  within community.
The role of services was clear
By the end of 2010, the disability service system was responding, person by person, within a universal set of principles including: 
•	consistency of application and funding response;
•	entitlement and certainty for people using services;
•	building capacity, competency and interdependent community relationships in place;
•	helping build a thriving, supportive network of family, friends and community from the outset;
•	respect for the natural authority and roles of family and enduring friendships in any service response;
•	design of service response (generic and/or specialised) to meet individual need; and
•	a focus on the least restrictive alternative and review of outcomes.
The role of government was clear
Government across all jurisdictions had: 
•	worked diligently to understand and ensure that the United Nation's Convention on the Rights for Persons with Disability was reflected in their policy and practice;
•	ensured the service delivery system is driven by social policy predicated on disability as a social construct rather than personal tragedy;  policy that assumes universal entitlement to adequate support to live a decent life; and
•	put in place a national disability insurance scheme, similar to the Medicare levy.
At a national level, government had achieved its target of 75% of public transport being accessible, and successfully negotiated with the states for nationally consistent aged care, disability support, and aids and equipment schemes.  
The Queensland government had shown strong leadership in the National Disability Agreement (NDA) negotiations of 2012, paving the way for a new, more equitable system of need identification and allocation of funding.
In 2019, funding of disability support had two key elements:
1.	the individual funding allocation determined through the national assessment process (based on need rather than impairment), with state and commonwealth jurisdictions working well together to coordinate housing and disability service provision.  
2.	the service capacity funding (based on demonstration of outcomes-based quality certification) and support provided by the state.
While funding is predominately driven by individual needs, due regard is given to the individuals’ gifts, talents and potential contributions to the community in which they live.  The individual is assisted with information, vision building, planning and navigation through the system by the Community Navigator in their community, and opportunities for contribution identified and facilitated.
Service and community capacity building is provided by the Community Builder.
Accountability
By mid 2010, the Queensland Government had pulled back on the burdensome, compliance based quality systems and negotiated successfully with community based organisations and service users for a purely developmental system, using the more generic health and wellbeing indicators alongside the disability service standards and human rights indicators.
How did this transformation occur?
By the end of 2009, Queensland's Minister for Disability Services has submitted a 10 year plan to Cabinet that had wide support from a broad range of stakeholders, including:
•	people with disability;
•	family and carers;
•	service providers;
•	advocates;
•	government;
•	educationalists;
•	business people; and
•	other interested Queenslanders.
The 10 year plan was well supported by Cabinet and paved the way for the Inclusion Bill of 2010.
The broad objectives of the Bill were:
•	enactment of UN Convention on the Rights of Persons with Disability;
•	strong individual, family and community capacity;
•	inclusive communities – spaces and places, that are physically and socially accessible;
•	a government investment strategy that supports strengths based rather than deficit or crisis based responses to need;
•	a service system predicated on building supports around the individual and family as its first priority;
•	government policy that ensures seamless access, not only to personal support but support to access, participate and gain strong outcomes from health, education (including VET and University education) and employment; and
•	acknowledgment of the inherent vulnerability of people with a disability and the need for independent systemic and individual advocacy.
A Diversity Charter was also developed as a result of the consultation that informed the Minister's 10 year plan, and provided the litmus test or basis for evaluating all new and existing policy and practice initiatives.  The Diversity Charter was a rallying point and important symbol of change for the sector between 2009 and 2014.
A range of strategies were put in place to implement the charter which included but were not limited to:
•	a review of existing Commonwealth, State and Local government policy and practice as a starting point for realignment of funding policy and programs, with the Diversity Charter;
•	incentives (financial and flexibility) for funded services to engage with their stakeholders and make the transition required of the 10 year plan;
•	establishment of local planning, resource allocation and community engagement mechanisms to ensure responsiveness at a community level;
•	funding of research (sourced from specific research funding programs rather than from disability budget) to establish evidence based policy and practice; and
•	a well-resourced community engagement strategy to enhance visibility and increase the community of concern.
Where to from here (2009)?
For Queenslanders to live this scenario, the quality of leadership and engagement from both government and community sectors is critical.  The community sector has committed to comprehensive engagement of both the disability sector and the broader community, including government, to gain a better understanding of what an inclusive community means for people.
Moving from vision to reality will require, among other things:
•	An acknowledgement that step-by-step change is required.
•	Transparency and a willingness to scrutinise current policy, practice, and reforms underway.
•	Acknowledgement of the need to ensure that available funding is distributed fairly with as many people as possible accessing services.
•	Acknowledgement that existing funding is insufficient to respond to all people who require support through specialised services.
•	Acknowledgement that diversity includes older people and cultural and linguistic diversity.
•	Willingness to explore new ways of working.
•	Willingness to allow evidence and the needs of people with disability inform policy & practice.
•	Willingness to align government investment with the vision.
•	Commitment to the developmental work and capacity building required by all parties, including, government,  non-government service providers, individuals with disability, families/carers, and the community needed to effect the shift in culture, policy and practice to make the vision a reality.
Footnote:
1. 'Universal design' - Changes to the Building Code through the Access to Premises Standard will cover most new and extensively modified public buildings – the real gap now is with Class 1 and 2 buildings (single dwelling houses and flats).