IDEAS Submission to the Australian Parliament
Joint Standing Committee on the National Disability Insurance Scheme
PO Box 6100
Parliament House
Canberra ACT 2600
WHO IS IDEAS
IDEAS Information on Disability Education & Awareness, envisages a world where people with disability live full independent lives of their own choosing. Established in 1981 and incorporated in 1984 IDEAS works to provide a range of free, accurate INDEPENDENT information services and products to people with disability, their families, carers supporters, other professionals and now many of the Local Area Coordinators , and Ability Linkers in NSW.
WHAT WE DO
Using our specialist Data collection and curation team, we source information, and then filter interpret and disseminate it for the benefit of our customers. IDEAS provides a web presence with currently 680 resources relating to the NDIS. IDEAS has 15,000 disability specific resources in its database, and access to a further 38,000 datasets. We provide a FREE Live Chat which is answered by our in house call centre, and also a National FREECALL 1800 029 904 line. We have a FREE SMS Service. IDEAS has a newsletter distribution, and have run large information expos which cover all life domains in the roll out of the NDIS in Newcastle in 2013, Maitland 2014, Penrith and the Nepean 2015, and in Albury/Wodonga in 2017. IDEAS maintained data information records are accessed through other websites (e.g. local council) at the rate of 50,000 per month and through our own website at 20,000 per month on average.
Our FREECALL INFO LINE is where people can call and speak directly to a person about their enquiry:
The distinct marker about phone calls in, is that the person is deeply and actively listened to first, and then the information officer sets about finding and distributing the information to assist the customer to make their own decision. Absolute person centredness has been a cultural practice within IDEAS for its life. On that line the person who answers the phone is usually the person who will complete the enquiry. The calls are not time limited. The calls are not scripted. Our information officers and data team and key executive staff has a lived experience of disability and the sector of more than 120 years. Our head office is located in Tumut NSW. IDEAS is a specialist generalist, that is we work from the premise of the social model of disability where for most of the time the barriers to accessing a good ordinary life sit outside the person no matter the impairment or condition they live with. We have excellent connections to the important condition specialist and national and state peak bodies, both at an information, referral and advocacy levels. There is a large
sweat equity invested in these networks by us and these other organisations which has developed capacity and partnerships over time.
We have a unique lived experience and deep understanding of the diverse populations of regional and rural people and also have experience in the coastal regions of Newcastle, Wollongong, the ACT, and Sydney. We know in our bones that “people with disability and their families usually don’t pop anywhere.”
Boundaries and Interface of NDIS Service Provision and other non NDIS service provision
IDEAS submits that the requirement for independent information services for people with disability, as they have interface with health, education and transport and other “ordinary” life domains is now beginning to exquisitely show itself.
IDEAS submits that there is a strong case for independent information services, and products to be supported in the development of the market of disability supports and services to:
Ameliorate the transfer of risk from organisation or state to the individual who may have very few social, familial or community supports. Preserve the critical pillar of the NDIS as serving choice and control to the person with disabilities to have sovereign un-conflicted agency about choosing the service and supports that are right for them no matter where they live. Independent information services have to be a sustained practice. They should not replace or prevent new entrants to the market, and disparate means of distribution, but IDEAS asserts that it is only fair to have a trusted source that people may use to get a gold standard of information, that is customised to the person’s access needs, to support their decision making. The markers of these information services are:
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They should be un-conflicted (that is service providers information is conflicted by their offer of service contracts from which they profit).
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They should be independent, that is, away from government, away from the Agency and away from direct service provision.
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They should be accurate.
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They should be timely.
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They should be relevant.
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They should be value for money.
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They should be free to people with disability, their families carers and supporters.
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They should have diverse distributive channels in an “omni” environment, so web, phone, letters, e-mails, community face to face engagements, newsletters, e-newsletters and all the digital and social realm.
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The data must be maintained. Records must have a process of accession and de-accession.
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They should be “trusted” services and known to be on the side of people with disability.
As the NDIS starts to serve unfunded participants in greater numbers, the schisms at the interface of health, education and transport will become more apparent. The cohort of people who will be unfunded participants in the NDIS scheme will be around 2,090,000 people living with disability. Their number of carers is around 394,000 persons.
IDEAS predicts that the most urgent of these is health. The ‘wrangle for nothing about us without us’ is real and the health system, and its specialties are largely unprepared. This is in an environment where people with disability have determination to be treated as whole persons and with the attitudinal shifts required to be treated as a person not as a condition. Concurrently there has not been nearly enough time, resources or determination to do the community capacity building, and develop greater individual capacity amongst people with disability to self-advocate in the mainstream systems of health, education, transport, work, puberty, sexual health, travel and relationships.
Information Services, Awareness Services and Disability Inclusion education need to be expanded to meet these obvious burgeoning needs.
Acknowledgement needs to be made in that the digital divide is greater than then bandwidth alone. This is a financial, educative, social and age marked engagement. The choices need to be there, because even if people with disability may be very proficient in the digital world, that may be intermittent due to money or other issues.
If independent information services are not a sustained investment, then the NDIS risks losing choice and control for individuals and their engagement in mainstream provisions in their life domain.
IDEAS for a Proposed Solution
Committed provision of independent information service for people with disabilities, and their families, carers and supporters to have a sustained investment of $15 million for the nation with a minimum cpi increase. A comprehensive communication, advertising and marketing plan to inform people of that available set of numbers, contacts, online points, and visiting customer engagements. A no wrong door approach so that people are treated well wherever they arrive, and get escorted/navigated through the systems they need with a personal approach. Use a moving bus/truck model for localised dissemination of information, with regular trips. This has been proven many times over for rural and regional and aboriginal populations provided the cultural competency and safety is correct. IDEAS has the lived experience of serving people in rural and regional and remote areas. This experience shows that people are unwilling to trust FIFO models with different personnel. Our experience also shows that people are unwilling to trust your offer until a minimum of three visits have been made. Assist through federal relationships and networks for Free to air TV to have at the end of every program that deals with any disability the national number for disability 1800 029 904, just as the existing practice for programs that explore mental ill health, with the referrals points to Lifeline and Beyond Blue.
The consistency of NDIS plans and the delivery of NDIS and other services for people with disabilities across Australia.
IDEAS experience in informing people about the NDIS, and their engagement with the planning process is wide and deep. At our recent expos we have delivered specialist planning hubs where people can set down and begin a pre-planning process live, or make
forward appointments to get assistance where they live by a selection of diverse and accredited providers.
These have been designed in a very hospitable environment with people falling over a threshold into an information and action space. We have received excellent feedback form
these processes from the First Peoples Disability Network, My Choice Matters, Family
Advocacy, The Council on Intellectual Disability, People with Disability Australia, Fair
Trading NSW, The NSW Ombudsman’s Office, Family Planning NSW, Liz Dore
Relationships and private stuff, Self Advocacy Resource Unit, Local Area Coordinators,
Ability Linkers, FACS NSW - the NDIS Straight up, DIAS, DAISI, and others.
Our on the ground experience shows that people’s engagement with the planning process depends on their age, and education largely. In rural and regional areas we find the consistent motivator and emotion in the population as one of fear, and that people ‘go along with what the service provider suggests” because they don’t want to rock the boat, and they don’t want to be in disfavour with the only service provider in that town. The outcomes of this anxiety is a very needs based planning environment and conversation, all about housing, food, and meds, not a great deal of “life”. The voice of the person with disability is rarely given the time or space to be heard.
In the wonderful instances where the planning process has been of high order, we always hear from the parent an exclamation like “I never knew that my daughter liked coffee dates with her friends!” we don’t drink coffee at home, always tea, and yet I find in her plan she identifies this as something she has already been doing and would like the support to continue. Or in another instance at the end of an exhaustive session, a relative standing up for the person with complex disabilities to actually speak about what he might like in his future, and the family and the service provider nearly being knocked over when the person got out that they wanted a cat to stroke to calm himself. This had been unknown and unindicated over the twenty years that the person had received services from the service provider. A simple, relatively inexpensive action to go in the plan, with all the accompanying growth available for the person in responsible animal management while enjoying the new responsibility of pet ownership and its companionability.
CHOICE, CONTROL AND CERTAINTY
At IDEAS we are excited always about the prospect of people with disability and their families, carers and supporters getting to live good lives through making their own choices about everything that matters to them. We provide independent information services in multiple ways to support people with disability to make their own decisions. What we all know is that good policy needs to be bedded in reality, and that the outcomes of that policy need to solve evident gaps for people to get what they need to be in charge of their lives their own lives.
This is an exquisitely simple proposition. People (that is all of us) need certainty in their lives and in their life domains, where they live, how they work, where they go, what they do for fun or education. There are bookshelves of evidence about the detrimental effect to any of us when parts of our lives become uncertain. People living with disabilities are no different to any other people in their desire to be in charge of their life choices.
There needs to be for people with disability a certainty of outcome for them, that they can access the services and supports to assist their decisions and choices to preserve the
certainty of outcomes for them as they develop increasing agency in every life domain just like everyone else.
People with disability need the supports and services of independent information and advocacy to progress their rise as savvy customers for themselves, contributed engaged citizens amongst all of us, no matter where we live. IDEAS asks you to deal with the policy reality here that the removal of these supports by the current NSW government in June 2018 will be detrimental to the largest single minority in the state. There will be a yawning gap between the provision of any independent information services through the ILC and what is currently available in NSW. People will have uncertainty thrust at their door, and that the predictable outcomes beyond that, are toxic for people with disability having these supports removed.
IDEAS position is that the policy has to mirror the reality. The reality is that the NDIS, as well as the NDS 2020 strategy, and Australia being a signatory to the UNCRPD and the various state inclusion bills including that in NSW of 2014 drive funding and decision supports for people with disability to have choice and control for themselves about everything in their lives that matters. Removal (by the NSW Government) of information supports and advocacy works in exactly the opposite direction. It neuters support for people to grow their choice and decision making capacity, and concurrently makes them vulnerable to wicked elements of uncertainty, toxic environments, and vulnerable to scams, gouging, humbugging, and personal, emotional and physical abuse.
IDEAS also can clearly point to the deficits in the ILC component of the NDIS. Bruce Bonyhady wrote of this eloquently in his resignation letter to the federal minister Mr Porter. It is, as the framework and funding is currently outlined not congruent with sustainable, good policy that enhances the certainty for people with disability, and supports them properly to get the things they need. IDEAS respectfully suggests that in the face of that knowledge, a departure by the state governments in providing investment in independent information services supporting people with disability, their families and carers and supports to have choice and control over the decisions they make is also poor policy.
Just like all Aussie consumers working out their electricity provider, or health insurance, or car insurance or anything else, people with disability need the accurate, timely available, accessible information supports to help make decisions that are right for them, and also need advocacy services to stand up for their rights when, they have been wronged by agencies, company’s and or individuals as they go about their lives.
The rollout of the Information, Linkages and Capacity Building Program
IDEAS envisage the need for a national infrastructure of independent information resources to be developed.
This should be a complementary role to the Local Area Coordinators. The Local Area Coordinators would be a critical part of this mosaic by collecting the close to community and place making information. This can be achieved for $15 million dollars investment. If all
carers and people living with disability engaged with the national independent information infrastructure, it would be an investment of $6.03 per person.
Good information makes good choices, poor information costs the State more money.
Submission by:
Diana Palmer
Executive Officer
IDEAS-Information on Disability Education & Awareness Services
PO Box 786
Tumut NSW 2720
P: 1800 029904