NSW Council for Intellectual Disability has been having lots of conversations and engaging with many people about the NDIS Information Linkages & Capacity Building Framework which is currently in consultation. Submissions on the framework can be made until 22 April. This post, originally published on the CID website, explores some of their initial thoughts on the framework and shares some of the ideas and themes that they are developing.
Equity – the draft ILC Framework acknowledges the importance of reaching out to people who fall through the gaps but does not say how this would occur. CID says that all ILC services must have an accountable obligation to reach out and engage and some specialist services should be funded for people with intellectual disability living isolated lives on society’s fringe.
Social Capital – ILC services will have a key role in building social capital partly through volunteers but also through building peer networks and community inclusion.
Information Services – people with intellectual disability rely on information services where they can talk to a skilled information worker, preferrably face to face and receive personalised information.
Local Area Coordinators (LACS)
The draft framework says that the role of LACs includes
- Direct assistance for people with NDIS funding packages to connect to their community and put their packages into action.
- Short-term assistance for other people with disability to find community-based activities and resources.
- Community development and mainstream service partnership activities.
These roles are very broad and we understand that in their first years LAC’s will have a very major focus on supporting existing clients of disability services to transition into the NDIS. We are concerned that this focus will prevent the LACs from pursuing their other roles adequately and affect the long-term culture of the LAC role.
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We see it as very important that the LAC role includes proactive outreach and engagement with people with disability who do not seek out their support, for example people with intellectual disability leading isolated lives and in trouble with the criminal justice system, sleeping rough or living in boarding houses. Similar issues will arise for many Aboriginal people and those from diverse cultural and linguistic backgrounds.
We question whether there will be enough LACs to do their broad jobs adequately but the role must include outreach and engagement if all people with disability are to have equitable access to the NDIS. Some LACs should have a specialist focus on reaching out and working with hard to reach groups.
Funded ILC services
The NDIA proposal is that funded ILC services and other activities will complement and not duplicate the work of LACs. Again, outreach and engagement is key to equity.
On the one hand the draft ILC framework acknowledges the importance of reaching out to people who fall through the gaps. On the other hand, the proposed ILC outcomes do not really pick up on this issue.
Through the proposed outcomes and other means, all ILC services should be required not just to assist people who come to them but also to reach out and engage with hard to reach groups, for example people with intellectual disability who lead isolated lives on society’s fringe. Outcome measures should validate that services are doing this.
The ILC should fund some services that specialise in working with hard to reach groups. These services should provide outreach, engagement, capacity building, support for decision making and support in legal processes such as police interviews, courts and meeting court imposed conditions.
Safer and Healthier lives?
There is a mention in the draft Framework of the importance of safety but no outcome that reflect this.
Should there be a specific outcome and outcome measures focused on the degree to which people are safer and healthier?
Eligibility for funding
Comment is not being sought on what is said on page 33 of the draft Framework about eligibility for funding. However, CID continue to feel very uncomfortable about the conflict of interest for large service provider organisations in being ILC providers.
CID welcomes the news that a conflict of interest policy is being developed by the NDIA with regards to the ILC framework.
CID is keen to ensure that there is a diverse ILC market in all areas, including regional areas.
In choosing which services to fund, there should be a much greater focus on equity not just region to region (page 27) but more broadly including for people on the fringe.
Information is a critical part of the ILC framework. In NSW there is a strong track record of independent provision of information to people with disability, their families and other key stakeholders. Independent information supports decision making, independence, encouraging choice, skill development and creating change. This happens at both an individual and systemic level.
Care must be taken in the design, production, delivery, promotion and evaluation of any information—otherwise it just won’t work. Take accessible fact sheets for example, they are great but not if they are not sent to people, if info is out of date or inaccurate or if people can’t ring someone to talk about what is in it for them.
People trust information from people. Be it someone on the phone or someone face to face, someone who has listened to them and taken the time to understand what is really being asked. Someone who, as we constantly hear “gets what I am talking about!”
People like independent and credible information too.
“I don’t want to feel pressured or if I’m being sold something”.
Databases have a place, but we find them a bit flat, they are one of the many tools that skilled Info Officers use. It’s just as important that people can research & analyse what is happening in the local area as well as being able to look up something on line and being able to watch trends about new products or services.
Proactive information is an investment, saving confusion and anxiety and it can help people plan ahead. Good information can be like a “stitch in time…”! It also saves money.
Information Officers need to be extremely well skilled, they are researchers, question askers & answer seekers, analysers, listeners and supporters. They can be dealing with a person in crisis one call, and responding to a media inquiry the next. Their communication & problem solving skills are top notch.
Whilst many organisations provide basic information to people it cannot just be an ‘add on’ to a role or service as this undermines the integrity, independence and quality of information. Both specialist information services such as ASK CID already exist in NSW, as do more generic services like IDEAS. The bulk of calls to ASK CID are complex, they usually involve research, investigation, follow up and producing specialist responses.
Who will do this in the future?
Who will provide expert advice?
Where will this information be held?
Where there is an unprecedented amount of change and opportunity occurring, people will more than ever want information they can trust, from a known source.
A common phrase heard by ASK CID Information Officers is “finally someone who gets it!”
Continuing to invest in existing organisations would allow the role of information provider to be fulfilled by reputable, skilled and independent services that have always been set up to serve their constituents – no-one else.
This is most valuable, and extends much more broadly than volunteers, it is also about information, knowledge, best practice and trusted relationships people have with consumers.
For example ASK CID information service does much work in ‘up skilling’ the wider community about intellectual disability. Along with numerous other peaks and disabled persons organisations, CID also provides information and advice to inform disability action plans, disability inclusion plans and similar strategies.
Peer networks, such as the Community Disability Alliance Hunter and Disability Support Networks, are a valuable contribution to this social capital – the benefits of which are far reaching. However, these groups need time to develop momentum. A ‘user led group’ does not just emerge and operate.
Social capital is not something that is developed ‘quickly’ – the ILC provides for the opportunity to enhance and develop already existing capital.
Are mainstream services being engaged as part of the ILC consultations?
Given the emphasis on mainstream services needing to play their part in creating inclusive and welcoming environments are they being included in the process for development of the ILC?
What do they need to be confident to work effectively with people with disability?
Who will do the necessary up skilling?
Who will ensure they are motivated to be more inclusive in their practices?
Are mainstream services in NSW aware of their roles under the Disability Inclusion Act?
More broadly are services aware of their role under the National Disability Strategy?
CID does considerable advocacy for better inclusion in mainstream services.
Our experience is that the Disability Inclusion Act and the National Disability Strategy do not have a high profile in mainstream agencies.
Recently we heard example of a community centre, with the best intentions, say yes we are inclusive of people with disability – we run a dance program just for them on a Friday. Perhaps with some capacity building for that centre about inclusion, the centre might in the future work with teachers of mainstream classes on how they can welcome students of all abilities into their class.
It is a long term process to change attitudes and culture, it is not work that happens quickly – some of this work must occur as part of the ILC.
Where has ‘Tier 1’ of the NDIS gone?
The Productivity Commission stated the below regarding Tier 1 of the NDIS:
An important role of the NDIS would also be to minimise the impacts of disability. This includes:
- promoting opportunities for people with a disability
- creating awareness by the general community of the issues that affect people with a disability, and the advantages of inclusion
- drawing on its data and research capabilities to engage with other agencies to improve public health and safety.(Disability Care & Support – Productivity Commission Inquiry Report Overview and Recommendations 2011, p 12)
Organisations like CID have done much work shifting attitudes, community education and demonstrating best practice in leadership by PWID – who will lead these activities in the future?
The ILC and other NDIA and governmental actions need to deliver on Tier 1.
Future of advocacy
The future of advocacy is unclear, as in NSW post ADHC exiting disability service provision, advocacy and independent information services will no longer be funded by the NSW Government. This includes systemic advocacy agencies such as CID who are not funded under the National Disability Advocacy Program.
Over the years CID has assisted 1000’s of people and organisations improve their knowledge, attitude, policies and practices about intellectual disability.
As part of our role CID has provided advice, fact sheets, training, access to resources and capacity building to health professionals, volunteer groups, community organisations, government departments, universities and business.
People also need individual advocacy. Currently the availability of this is very limited and demand is not being met, despite it being identified as a necessary safeguard in the prevention of abuse and rights infringements. Activities provided under the ILC framework need to have a complementary role to the National Disability Advocacy Program and what is delivered by state based organisations, noting that many states are yet to finalise the future role of advocacy services.