To: Joint Standing Committee - NDIS- SIL
From : Ms Val Johnstone, .
Subject: Submission re NDIS SIL 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, experience of Active Citizenship. as a woman with
Downs syndrome and myself as a person with a significant vision impairment.
I would appreciate the opportunity to participate in upcoming face -to-face engagement (can’t do the website thing) , can this be organised?
Please find attached enable.doc my paper at conference findis.doc paper prepared for NDIS aaaPlanner
For me, the key considerations for SIL are : Timing and Readiness for young adult and SIL Housing options and Fit for person’s needs informal/formal support
Opportunity to Grow
I had various influences when planning for to start living independently; whilst working on Head Injury Unit at Bethesda, was Senior clinician, the lessons of attention to detail, importance of transition and incremental change , having a base line were critical and I will endorse these .
A different influence was in another hospital Acute ward, aged patient with pwd living at home; sadly, in many cases it was significant life changes for both.
Timing and Readiness is not a whim , the latter starts a long time before moving out of family home (as it is for other young people). Knowing the personality, abilities re personal care, being safe (in and out of home It is a base line .
Twenty + yrs ago the the adult living options were very limited - basically institutions ; from large ones to small ones (CRU’s) that was not for us!
A significant aspect of housing for (and other pwd) is tenure, capped/reasonable rent - yes, rent and bills- this was actual experience.
I bought unit; still in the neighbourhood that she knew that gave her a sense of place and confidence - we were close enough,but far enough. She lives independently, enjoys it, gets plenty of opportunity for social contact. She has tenure, rent is enough to pay rates, owners corp fees,water small buffer build up for painting /repairs. I have this arrangement in my Will.
sure there will be a range of options within families in considering Housing options, paying it forward , capture the window of opportunity and the joy of witnessing your adult person participate successfully in the community.
Governments could consider criterior* for stamp duty exemption or other measures i.e. proximity to family/networks - not shipping off to unknown!
Proximity to family is important and maintain family ritual various family need to be aware of their behaviour in critical time of establishment phase, sabotage or adamant that things are done a certain way are not helpful! it is a different relationship and needs time to develop. Equally important is to enjoy shared activitiese.g. shopping, movies, football.
Formal support is required and not the be all and end all e.g. has 1 hour
p.f. cleaning service (floors, bathroom, kitchen) , which means that she is keeping clean/tidy in the interim. Think about what works for the person; it is about giving space and opportunity to develop skills and know-how.
On the other hand a one off or annual support service to dental/hospital appointment All about thinking ahead. Also knowing community resources available e.g. Travellers Aid (Melb.) have a service assisting individuals to keep hospital appointments.
Opportunities to Grow is rewarded - has used a Diary/7 day Planner
which has been very useful, appointments, meal ideas, outings, etc.Making spaces work for person e.g. baskets /kitchen shelves , pin boards for messages, space for personalising, non- slip bathroom .
If any of these ideas need clarification pl contact me.
bout 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
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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 , :
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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).
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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).