Scrutiny of service providers and governance of disability organisations | External submission

To: Joint Standing Committee - NDIS Planning

From : Ms Val Johnstone,

Subject: Submission re NDIS Planning Review

In preparing this submission , my starting point is the UNCRPD, principles and Articles; my professional and personal experience of disability and reflections of our, and I, NDIS experience thusfar.

I plan to submit for the SIL Review and suggest that there will be overlap in these submissions, hence useful to consider all materials.

I would very much appreciate contributing to face -to- face consultation, I am not able to ‘do’ the website thing , there must be a way that I can contribute, when in Melbourne. Can I do a registeration by email?

Ideas for consideration:

Walk the Talk:

1.    anNDIS space and practice should reflect it's values -  it is more than a

ramp! inquiries for directions require clear verbal directions; likewise, knowledge of information access issues and alternatives available besides electronic methods , by default NDIA system has locked out a large section of NDIS participants (current , future) Consider impact on pwd, cost of infrastructure, on going cost - let alone capacity to get maximum benefit, tech support etc. As a policy on service delivery needs consideration.

 Building NDIS Planning expertise could happen with an On-going

program of In-house training that also considers previous policy andimpact on individuals , for example, special school policy was ’reading is not necessary ’, many of these pwd are now playing catch up- integral for being active citizens.

Another example, relates to expectations of pwd health outcomes… relates to minimal emphasis to pro-active and/or health hygiene ; years ago a wrote an article for the Health Issues journal re oral health; case study was a pwd at public dental clinic with support worker - his teeh were in very bad shape (no daily regime developed, and regular dental checks either) . The result was that all his teeth were removed , with the promise of dentures; the trauma for this person and the young support worker horriffic.

Both these examples illustrate that Planner need to be positive in participant seeking opportunities to learn and identifying health engagement.

Such 'in-house' training could have a component of peer-learning and

reflection whih is all about improved practice. Definitely a big no -no to be

fiddling with a electronic device whilst engaging with participants/families; surely, this is a 101 in communication / engagement.

Planner (and others) are accountable for a good service; tasks associated with role and function demonstrated so as not to have significant proportion seeking reviews - besides anguish for individuals , value for public $. needs improvement.

Stepping through the Planning Process :

this is the Participants plan, the anguish and stress in delivering a document

not a Plan , is unacceptable for the participants and families. Terminology of ’ goals’ surely it is about identifying the bit that could be maintained and/or furthered with NDIS support. Below are some ideas to start shaping.
1. ```
Inform client/family member of NDIS planning meeting date  - at least 3
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wks ahead, inform of the booklet and Getting to Know You questionaire* (my ideas below) Hard copy available,date for return of questionaire - this is about participant/family member having adequate time to consider responses carefully, once returned, NDIA will have a base line (data) and the planner having an informed basis for setting meeting agenda and communicating this with participant/family member (so as to tweak if need be) Such a process, reinforces participant/family agency and delivers a more accurate and authentic NDIS plan.

Consequently,t he Planning Meeting has a strong basis of current situation,

and identifying areas for NDIS support - done by working through simple agenda/ list of items; explanation of budget formula and options of Support

Coordination , Local Area Coordination (LAC) .  done well this is all about  all

parties being satisfied and minimising a request for review within three months.

All of the areas covered above are contained in the Outcome Areas (is it Nat Disability Strategy ?) ticks boxes for individual and whole of govt. approach.

Getting to Know You Questionaire I am unable to do fancy tables etc. (can’t see the screen), however, mind’s eye is wonderful and of course detail of content, so here goes - happy to flesh out detail. I would suggest an A3 size document - a copy for individuals would be great!

So down the left are key life areas (options - current status ) Across the page are

the columns, Ideas,I can… I need support… what I/we do now … NDIS support.

Down the page: Heading with sub-headings - tick box

Living situation:, (family home, flat in b’yard, CRU, shared/ independent unit.

Relationships (family, siblings,friendships, neighbours

Health connections: G.P. practice nurse, public/private dental, podiatry, dietician, physio, occupational health - Community Health, Public Hospital.

Your community Access Know-how: streets nearby, public transport, (corner shop, supermarket, post office, bank, chemist, cafe, eatery , church

Being Active: outside home - work, school, movies, sport, footy tips, volunteer, local theatre , traveller, visitor, voter, churchgoer

at home -household jobs, personal care, watch T.v.,  , music,  exercise,writing.

Across the page: (heading ) sub-headings (tick boxes ) This is about linking actions/ideas to life areas ; then to I can… etc. A couple of examples below.

Actions/ideas (living situation): pay rent, pay bills, personal care, household tasks, , phone contact with family and friends, use microwave, use washing machine, use v/cleaner and mop, work together with support worker.

I can. ( the same tick boxes will apply across page)

I need support…

What I do now :

NDIS support

Actions/Ideas (relationships) : sharing, saying thank you, returns weekly catch up, girls catch up , friendly to neighbours/support workers. /

I can. ( the same tick boxes will apply across page)

I need support      What we do now              NDIS support...

What is on Offer?:

Maybe, this is not in the scope of a Planning Review; the business model of service providers - not for individuals to remedy a flawed system. Surely, NDIA has to take responsibility in scrutinising systems of ’registered ’service providers ; license holder has many suboutlets/? - what scrutiny of service delivery and business modelis at play.

in establishing Quality & Safeguards Commission,service guarantee, code of Conduct - seems like pie in the sky for now; I wish thenm well. dealing with orgs that have a casualised workforce, lack of transparency in systems.

For example, It is five months since has a NDIS Plan , still no direct support service; I have been keeping a log of services that I have contacted and or interviewed etc - I always knew that the system was poor, (basis for Productivity Commission Disability Care and Support Review ) What of individuals/families who are quite desperate and decisions ’made with a ‘hope for the best’ approach.

I will definitely make a submission raising structural issues with upcoming Royal

Commission

definitions, a life sentence? or is it about finding how different individuals learn and do stuff - different ways of knowing, enabling.
- ```
gouging  - a disability version of fees for no service
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governance of support service and advocacy organisations
some of these orgs are large, have charitable status, ACNC role About Val:

I have a significant vision impairment - optic atrophy; I am a social worker by profession and worked primarily in health and rehabilitation (public and Private). All of these experiences inform my relationships with all the different pwd known to me and the community at large.

Likewise , careful planning, building scope to grow, and a can do approach came to the fore in the process of My daughter successful living independently

it is 21+ yrs, minimal formal support - refer to atatchment 2. I believe in sharing my know-how, making community contribution when possible, - formal and informal , :
on the inaugral DACV (2 terms) VEOHRC, Disability Reference group, Director, on Board of Women with Disabilities (2 terms) lots of Health related initiatives ,submissions re Inquiries, campaigns (Every Australian Counts, and of course the UNCRPD. Conference presentations e.g. Enabling Citizenship.

I am particularly proud of part played when Productivity Commissioners were in Melbourne - all those years ago, pre Disability and Care Report; I made a presentation - professional observations (compensable/non-compensable), personal lived experience of system, key decisions and timing re impact; experience of ‘doing’ direct payments (Victoria).

Anywayon the day, during morning tea break the Commissioner , Patricia Scott, came up to me and asked to meet and look at how I ‘did’ direct payments… they were there the next day …. over the weeks, I had a couple of phone calls to clarify points/detail ; I knew that I had made a contribution!

End of 2017, I was focussed on the reflections and learnings from forthcoming 20th anniversary of living independently (Feb 2018); four key areas for structural /systemic work; I organised meetings with some senior persons known to me, Arthur Rogers , Office of Premiere & Cabinet, Victoria ) and Maryanne Diamond, NDIA and others.