It is encouraging to know there are avenues for providing feedback. Participants need to be
able to assist NDIS to become the best it was intended to be.
- Planning process needs to be in line with the planning handbook prepared by NDIS for prospective participants.
Readiness. The 8 areas listed to assess and formulate goals for, were not considered.
Planning booklet did not indicate the need to have 3 goals prepared as was requested in
meeting – 2 short term and one long term. (It had provision for recording 5 goals).
This made for anxiety in planning meeting - attempting to ensure 8 goals were covered in 3
and that the most pressing needs were put as short term.
We had attended numerous planning information sessions and completed the online
planning booklet in readiness for the meeting.
NDIS needed to better inform participants prior to planning meeting of the meeting format
and what will be required of participant.
- Planner needs to be inclusive of the person with the disability (PWD). Despite limited capacity to understand anything about support, funding and NDIS, we felt it
was important for the planner to meet our PWD personally to have an idea of her needs and
capacity. He walked straight past her to greet us and ignored her until we deflected his
questions about her to her.
NDIS needs to ensure they hire staff as planners who have a sound knowledge of all
disabilities and a full understanding of inclusivity and how to relate to PWD. A highly
recommended course that would achieve this and that should be a minimum requirement of
all NDIS staff (not just planners) is the Optimal Individual Design Service course that Michael
Kendrick conducts annually. Contact the Community Resource Unit (Brisbane, Qld) to discuss
the logistics of achieving this. This course would equip everyone with the skills to assess
needs and provide resources accordingly.
- The planner needs to be adequately trained to respect the expertise of the PWD, advocates and the professionals the PWD currently has and to leave subjective personal opinions out
of the process.
Family members/carers and advocates can express the needs and goals of PWD who don’t
have capacity to do this themselves. Professional reports need to be accepted at the time of
the planning meeting and recommendations included in the plan. (Too often PWD is asked
to provide new evidence and more quotes when this has already been provided at the time
of planning meeting. This delays needs being met and ties up NDIS staff unnecessarily).
Prior to planning meeting, PWD and/or their support network have determined how their
plan should be administered – self managed, plan-managed or Agency managed. They are
the best people to know which method suits them, not the planner. (Our planner kept
strongly discouraging us from self-managing.)
NDIS could include a simple checklist for planners to help participants determine which
method of plan implementation suited their needs. This would provide a more objective
assessment (not the opinion of a planner who doesn’t know your capacity).
- The planning process needs be streamline and accurate. Initial plans need to be accurate to avoid unnecessary delays and waste of NDIS human resources and funds.
The planner needs to ensure the participant and/or family etc preview and approve the plan
before submission. (As NDIS documents stated they would be able to).
Any changes need to be made before submitting that plan.
Difficult cases need to be seen at the time of the planning meeting to arbitrate or suggest
then and there. PWD need to have their needs met as quickly as possible to prevent even
further needs occurring, to ensure their safety and wellbeing and to eliminate unnecessary
burden and stress. Timely and efficient responses eliminate the need for further costs.
Participants need to sign to say they have seen plan submission and agree with its
submission prior to its submission.
Reviews need to be conducted within a week of the request for review and changes included
immediately.
NDIS needs to have a clear process that outlines plan establishment and implementation
that both NDS staff and PWD are all familiar with. There needs to be reasonable time frames
associated with each step.
- NDIS needs to accept that disabilities are as variant as people are. Not any two people with same diagnosis will present with the same needs and goals.
Scientific evidence is often rare or limited. Evidence based practice should be considered
where PWD (or support persons) can verify how the PWD benefits from certain practices,
therapy, products, support etc. eg. There may not be much scientific evidence to prove
music is therapeutic for certain people. However if a PWD/family have proven the benefits
then that should be enough. Supporting documentation and photos may be required to
satisfy the planner. See 2 and 3.
Minimum level of course completion for all planners, LAC and NDIS staff would be The
Optimal Individual Service Design Course (OISD) by Michael Kendrich.
- 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. 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.