Productivity Commission - COSTS of NDIS
- NDIS needs to define more clearly what reasonable and necessary means. This definition needs to broad enough to encompass the many different needs that disability includes.
NDIS planners and others have been advocating that if anyone can purchase the product or
service, then participants can’t have it funded by NDIS.
There are many products, services and activities available to everyone to enjoy in this
country. There are few things that have any restriction on whom may purchase them. The
deciding factor for whether it should be considered reasonable or necessary is not even
dependent on what your diagnosis is but rather on your need.
Let me use examples to explain.
If I choose to purchase a wheelchair, even though I can walk, I can if I have the money. It’s
not necessary for me to purchase it though. I don’t have a good reason for purchasing a
wheelchair at this point in life. It’s not reasonable for me to need it.
If I have a business that requires me to keep in touch when I am on the move, I may
purchase an iPad to meet that need. It is necessary for me to keep in touch for my business
to be sustained. It is reasonable that I purchase the iPad. I could l go without it but my
business will suffer. Probably the health of myself and my staff would too because of the
added stress of not being able to keep in touch. If I didn’t have the business, I wouldn’t have
to buy the iPad. It would not be necessary. I would have no good economic reason for
purchasing the iPad.
Funding for NDIS needs to be economically viable so funding from NDIS needs to be
economically viable.
NDIS promises no-one will be worse off. It also promises that PWD will have needs met so
they can live as independently as possible. So when a person who cannot walk is looking at
what meets their needs for being as independent as possible, it will be considering which
mobility aids do this best in the most cost effective way. A manual wheelchair may be the
cheapest option, financially. It is reasonable and necessary to purchase that. However, there
may be extra costs though. They may need to pay someone to push them or they made
need to purchase therapy services due to the continual self-propelling needed with this
‘economic’ option. Also, to meet the PWD need to be as independent as possible, they may
need to purchase a motorised wheelchair. There are very good reasons to purchase this
costlier product. It is necessary to be able to meet the PWD goals for independent mobility.
It is more reasonable and necessary to purchase this product. While the initial cost may be
more, the ongoing cost to DNIS would be greatly reduced. Plus, the PWD will be more
independent.
The criteria for defining what constitutes reasonable and necessary is not whether it’s
something that anyone can buy. It needs this determining question to be asked – “If I didn’t
have a disability, would I have to buy it?”
PWD on forums testify what has been denied them because the former criteria mentioned
above has been used rather than the latter. I will list a few just to show you why the former
criteria fails and the latter doesn’t.
Toys/manipulatives/games. Anyone can buy them and usually they are purchased for
children. However, adults with disabilities such as Autism and intellectual impairments (II)
and motor impairments can need these to promote wellbeing physically, emotionally and
mentally. Eg. A 59 Intellectually impaired woman relates to dolls and fluffy toys, meeting her
need for emotional wellbeing plus dressing them uses fine motor skills that would otherwise
waste. She also plays with games such as Connect 4, does jigsaws, plays ball, colours in etc.
All things that preschool aged children need to do. These things sustain, along with other life
skills she has, the fine and gross motor skills she needs plus they stimulate her mind and
meet her emotional needs. When these things are removed from her life, her behaviour and
physical and mental health decline severely. She is unable to do basic physical things like
walk upstairs. She requires extreme behaviour management. She does not sleep well. So for
her these ordinary things that anyone can buy are necessary for her wellbeing. Due to the
effects of her disability, she has very good reason to purchase these things. If she did not
have II she would not purchase these things for herself. They are necessary for her to
purchase ONLY because she does have a disability. Therefore these things should be funded
by NDIS.
Consider the business of self-managing NDIS funding. I call this a pseudo-business.
(Centrelink keeps requesting an ABN of me because I am nominee for my sibling and am
employer for support staff).
To ensure all daily tasks are done and records kept in the most efficient and effective way,
we are setting up electronic management systems to replace paper systems. This
streamlines all facets of management – employment business, book keeping, goal
achievement, health and wellbeing records for health professionals, etc. Due to the nature
of II, my sibling does not have capacity to communicate any of this information, nor to use
any tools of communication – words, writing, paper and pen, electronic devises. It is
necessary for formal and informal supports to do this. It is more cost effective, space saving,
mobile and efficient to utilise electronic devises, programs and apps to better meet this
need for communication between all parties to ensure my sibling’s funding is primarily spent
assisting goal achievement rather than paying people to run this pseudo-business. Setting up
this system also ensures sustainability and longevity of the program beyond current support
people should they move on – true independence. Hence my sibling needs to purchase,
maintain and upgrade electronic equipment and other office equipment etc. These things
are readily available for anyone in the community to purchase. However unless you were
running a business, purchasing them would be optional – a personal preference.
If my sibling did not have a disability, purchasing these things may not be a preference.
However, because of the disability, there are reasons these things are needed. If my sibling
did not have a disability, these things would not be necessary. The goals achieved by and the
economic value of these things makes their purchase reasonable and necessary.
NDIS needs to ensure all staff involved in planning and budgeting of funds understand this
basis for what is reasonable and necessary. It needs to ensure all people involved in planning
and budgeting are exposed to experiences that develop an appreciation and understanding
of the things that are reasonable and necessary for a large variety of disabilities. They need
to foster an appreciation and acceptance that PWD, their family/advocates/allies and
professional team know what is necessary and reasonable because of their lived experience.
- NDIS needs to recognise the major shift in the reality of moving from service provider dominated support for PWD to individual, formal and informal support with the view to
achieving independence as much as is possible.
NDIS needs to recognise the huge shift in attitudes, opportunities and community support
that have to occur and that will be inevitable as NDIS enables PWD to lead a more ordinary
life. This change can involve major changes for PWD and their family etc. Transitioning will
need time and money to be adequate for the duration of this.
NDIS needs to provide support for family during this time to reduce stress and time that
PWD needs to assimilate new routine and people. This needs to be tailored to suit each
family and be financial, labour or respite support.
NDIS needs to recognise the need to assist the larger community to provide the level of
support and inclusion the changes PWD having choice and control will bring. This will be
through advocating for more training of suitable support staff and professional to provide
therapy and assessments.
a. NDIS needs to ensure there is more encouragement and incentives to attract people to choose supporting individuals as a career. Funding should be available for Certificate 3 in
Individual Support regardless of prior education level. Lots of people come from other
careers with a very caring attitude and experience but they still need and want to do this
training to venture into this field. One of the main problems, particularly in regional
areas, is the lack of suitable staff. Support workers from service providers, although
trained, often display lack of skill and attitude necessary to assist PWD as best as
needed. The OISD course should also be a required just as much as a first aid course.
b. NDIS needs to promote specialist and therapist career paths to match the increased need and to ensure these are available in regional and rural areas at no extra cost to
participants.
c. NDIS needs to ensure community groups, event organisers, local councils and post- school education facilities are aware of the need for PWD to discover what the
community has to offer and to provide what PWD need to actively participate in the
meaningful goals PWD have.
d. NDIS needs to value the role of informal supports and the time it takes for them to assist PWD to become as independent in the community as possible. This requires the
NDIS having a better attitude to ensuring informal supports are not disadvantaged while
fulfilling their roles, especially financially. Family should be able to be paid for the
duration of this set-up/transition time. No one should be worse off. Capacity building
needs to fund all training and costs associated with assisting PWD to become as
independent as possible especially if they are self managing.
e. NDIS needs to advocate for more community housing opportunities to enable PWD to live separately from parents and caregivers to enable those people to have productive
lives in the community, adding to the economic pool. Housing needs to be integrated
not segregated, suit the needs of the PWD and be in an arrangement as others of same
age would be. Eg share house for young adults, own house for older adults, individual
unit in supported complex for aged persons.
f. Traditional service providers, particularly large organisations, need close monitoring and higher standards of training to ensure entrenched attitudes and practices are removed
from this industry. For too long, service providers have alienated PWD from society
creating mini-institutions and distancing them from family and allies. They have had
power over the type of care, the funding arrangements, the input level from PWD and
families and been in a position of power over the governing bodies due to seemingly
meeting unmet needs. They need to learn to be OF SERVICE to PWD and their allies. The
minimum standard of training for all people employed in these organisations is the OISD
course by Michael Kendrick. NDIS needs to make this part of the requirements for the
NDIS registration process for all persons in these service organisations.
g. Support co-ordination needs to continue beyond the first year of plan implementation. These co-ordinators have established a very good understanding of the PWD they work
for and their allies. They can continue to make connections for them and advocate for
them better than introducing a new person who knows nothing about the progress of
their plan. Continuity makes for sustainability. Transitioning to NDIS requires a lot of
time, energy and growth on the part of PWD, their allies and their support co-ordinator.
This does not need to be undermined by suddenly introducing a total stranger into the
arena. The costs involved with this break in continuity will cost more financially,
emotionally and undo the progress made by all concerned especially the PWD. NDIS
needs to ensure funding is available for this to continue until the PWD feels they have
reached the point of needing only a small amount of support as the local area
coordinator will be able to provide.
h. NDIS needs to accept that family is often the best form of support for PWD especially during the transitioning phases of life, when the PWD is unwell or needing extra support
for whatever reason. Family, especially siblings, will know the PWD longer and better
than anyone else. Parents and siblings need to be able to lead their own independent,
fulfilling lives too. PWD don’t wish to be appendages to family members lives. NDIS
needs to recognise that family need to replace paid formal support at times in PWD
lives. This needs to be valued the same as the paid support it replaces. NDIS needs to
fund the time family support PWD just as they would fund any formal support person.
i. NDIS needs to promote the establishment of organisations, practices and government policy that provide support for parents, siblings and allies of PWD. These need to
recognise the value of the contribution these people make to the lives of the PWD in
their lives. Each of those informal support groups needs to have support from the
moment the disability becomes apparent. Parents, siblings, allies all constitute different
relationships and different needs. There is no one-size-fits-all approach to supporting
each group. I have been a sibling for 55 years. I can now see the effects being a sibling
has had on me and my other 4 siblings – emotionally, financially and mentally. Sadly,
there has never been any recognition of need for support during our life time. The long
term costs of this lack is very evident. The most apparent is the fact that half of the
family are not in paid employment due to their own needs for emotional and mental
health being unsupported as young siblings. Each different group - parents, siblings and
allies, need to have their unique relationships recognised and supported in the best way
possible so they can sustain their ordinary role – that of parent, sibling or ally. Only then
can the PWD enjoy relationships without the overshadowing of their disability.