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Submission on the proposed NDIS independent functional assessments and their use in personal budget setting
March 2021
Who we are
NSW Council for Intellectual Disability (CID) is a disability rights organisation led by people with intellectual disability. For more than 60 years we have been working to ensure a community where all people with intellectual disability are valued.
We speak up on the big issues, we provide information and learning opportunities, we empower individuals and communities.
Where CID stands on the Government’s plans
We agree with the government that there is a major problem with equity of access and equity in NDIS budgets. We also appreciate that the NDIS Act requires the NDIS to be financially sustainable over time.
CID welcomes that the proposals include the NDIA paying for functional assessments. Up until now, the cost and difficulty of obtaining a functional assessment has been a barrier to access to the NDIS for many people with intellectual disability, in particular people from poorer and marginalised socio economic backgrounds. Difficulty obtaining adequate assessments also leads to inequity in plan budgets.
However, we have many concerns with the NDIA’s proposals as outlined in the consultation papers released in late 2020. Below we outline those concerns with a particular focus on people with intellectual disability.
We are also concerned about the adequacy of consultation in formulating the government’s plans. The recent NDIA consultation was about how to implement the government’s plans rather than whether they are the right plans.
Our concerns about the assessment proposals
Compulsion - Should people be forced to have new assessments done by people
they don’t know if they have already had assessments done by well-qualified
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therapists who have the advantage of knowing the person well? The NDIA is concerned that a participant’s own assessor may be biased but we argue this is countered by their professional ethics and their greater knowledge of the participant that a one-off assessor will have.
People with intellectual disability have emphasised to us that it is vital that they have a relationship of trust with an assessor. Otherwise, they may not feel comfortable to speak openly.
Exceptions- The NDIA proposes that it should be able to exempt some people from Independent assessments, especially if the assessment will involve risk to the person or a valid assessment cannot currently be done.
However, the NDIA consultation paper says that the person will still need to provide similar assessment information to show their functional impairment. The problem with this is that many people with intellectual disability will not be able to provide information because they do not have a reliable “informant” who can speak about their functional impairments (as is required for the assessment tool most relevant to people with intellectual disability, the Vineland). There is a particular problem if the person is in gaol where it is extremely difficult to assess functional impairments which are focused on how people can function in the ordinary community.
We say that, if a reliable formal assessment cannot currently be done, there should be scope for a person to enter the NDIS on lesser evidence and obtain a functional assessment later to confirm their eligibility.
Reliability of assessments - There are a number of factors that will impact on the reliability of the proposed assessments including the variation in ability of people with disability and their families to provide full and accurate information about their functioning. What support for decision making will the person have?
Also, the NDIA’s expectation is that an assessment will take an average of three
hours whereas a thorough Vineland assessment may often take as long as ten hours and much longer than that if a person has complex needs. A quality assessment requires not only the collection of data but sophisticated analysis of it. An average of three hours will not allow this.
There is a great danger of very inadequate assessments with very limited participation by the person with intellectual disability themselves.
We envisage particular problems with the reliability of assessments for people with complex needs and for people in gaol. Challenges in gaol include: access to a prisoner being denied on short notice for a range of reasons; gaol entry procedures being very time consuming; visits being cut short by gaol authorities; assessors not being allowed to take computers into gaols.
Workforce – The NDIA’s plans appear to be for all new applicants for access to have an independent assessment and for existing participants to have an assessment over the next five years. That may mean 80,000 assessments a year. Where will the skilled and experienced assessors come from to do this work? This is a major workforce capability issue especially in view of the currently inadequate NDIS
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professional workforce across behaviour support and therapies.
The clear dangers are assessments being done by people who are not properly
experienced and qualified to do them and the already inadequate professional
service provider workforce being further depleted.
The organisations chosen to carry out the assessments – So far as we are
aware, none of the successful tenderers have significant experience working with
people with intellectual disability who make up a very substantial proportion of NDIS
participants.
Choice of assessor - The NDIA is saying that where possible the person with
disability will be able to choose from a number of assessment organisations. Choice
needs to go further than this with assurance that a person can have an assessor that
they feel comfortable with and who is well qualified to assess their particular
functional capacity.
Sharing the assessment with the person- The NDIA proposes that a summary of
the assessment should be provided to the person. We say that the full assessment
should be provided as well as a version suited to the person’s communication needs,
for example an Easy Read version.
Our concerns about the changes to budget setting and planning
Budget setting behind closed doors - The NDIA proposes that a participant’s
budget and draft plan will be prepared by an NDIA official without any personal
contact with the person with disability. We say this process should occur face-to-face
where the issues can be talked through between the official and the participant and
their supporters.
The information base for setting a personal budget - The NDIA proposes that the
NDIA official should set a budget based on the independent assessment and relevant
environmental factors which include things like what informal support the person has
and the area where they live. It is proposed that the official be able to seek further
information where needed and adjust the budget in special circumstances including
where a participant has complex needs or additional high cost needs such as
Specialist Disability Accommodation, high cost assistive technology or home
modifications.
There are big problems here. First, functional assessments do not have a proven
capacity to demonstrate the level of a person’s support needs. Support needs
assessment tools such as the ICAN are more suited to this for people with intellectual
disability.
Second, will the official routinely seek out extra information that they need? This may
include for example a communication assessment, a swallowing assessment and a
behaviour assessment. Some participants may themselves provide extra information
but others may not know to or have access to necessary extra assessments.
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The participant’s goals won’t be taken into account in setting the budget - We say that a person’s goals should be taken into account in deciding what level of support they need. Goals have been taken into account in budget setting up until now.
The skills and available time of the person deciding the budget - We are
concerned about the adequacy of the current skill levels for these issues in the NDIA
and wary of the time pressures that officials will be under to decide a certain number
of budgets each month.
Will there be scope to challenge the budget in the planning meeting? The
consultation paper suggests that the budget will be set before the planning meeting
and that a participant will not be able to argue that it is inadequate. However, a
recent newsletter from the NDIA CEO says there may be scope to change the budget
in the planning meeting. This needs to be clarified. Unless the budget has been set in
close consultation with the participant, they should be able to challenge it in the
planning meeting.
Interface with mainstream services - The NDIA proposes that the NDIA official
setting the budget will make decisions about what it is reasonable to expect
mainstream services to provide. These are often in fact complex and challenging
decisions and in a number of cases the Administrative Appeals Tribunal has
overridden the NDIA’s view on it.
For example, there remain major unresolved issues in relation to the respective
responsibilities of the NDIS and the justice system. These issues need to be resolved
but, in individual cases, the NDIA also needs to consult with the participant and their
supporters and justice agencies rather than potentially arbitrarily saying who has
responsible for what.
How will the proposed system affect the current complex needs pathway? The
complex needs pathway was established in 2018 to address a myriad of problems
that had been occurring in NDIS access and planning for people with complex needs.
This led to some improvements. We would be loath to see these improvements lost
and in fact the NDIA should be looking for ways to enhance them.
Conclusion – we call for a pause
In view of all the problems we have outlined, CID has joined the call of numerous organisations for the federal government to pause the implementation of the proposed independent functional assessments and changes to NDIS planning. The government should then consult with the disability sector on the problems that these changes are designed to address and how best to address the problems.
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