Submission to NDIS –Consultation papers Access and Eligibility Policy with Independent Assessments and Planning.
Policy for Personalised Budgets and Plan Flexibility
19 February 2021

Community Lifestyle Accommodation LTD is a not-for-profit entity, a Company Limited by Guarantee formed in Nov 2010 with DGR status. We are a grass roots, community –based organisation that has risen to respond to the needs of ageing parents/carers, to provide urgent suitable options to transition their middle-aged sons and daughters into suitable supported care before they died. No ageing parent should have to live in fear of dying they must have housing options to transition their older son or daughter with a significant disability into care before they die.

With the advent of the NDIS we saw there was also a need to support younger families who were in need of support, friendship and advocacy. CLA board members have worked tirelessly over many years creating community awareness for the plight of ageing parents /carers. We have collaborated successfully with likeminded organisations, lobbied all levels of government to create suitable supported housing for people with a disability on the Mornington Peninsula.

We share NDIS information, keep families up to date with housing options SDA and non-SDA options, hold socials for families, pass on contacts in our community who can assist the participants and their families to have a lifestyle in their own community. We are strong independent advocates for local families. CLA prides ourselves on supporting the whole family in a holistic way to live and be part of their local community.

The independent local support /friendship we provide in our small way with no government funding can make a difference to the person with a disability their lifestyle and survival. Especially ageing carers who are not on computers and hidden carers we come across through word of mouth.

We are giving feedback on Consultation papers Access and Eligibility Policy with Independent Assessments and Ph. 0423 356 878

Planning Policy for Personalised Budgets and Plan Flexibility on behalf of our members who have deep concern about these proposed changes. In fact, not many parents will be able to read through and understand the papers, therefore most of the feedback will be large organisations with paid staff so the real lived experience of participants and their parents will not have a chance to be heard!! We do not think that is fair!!

Whilst we all agree the scheme has to remain sustainable and equitable with clear simple guidelines, our concern is that the proposed changes will severely limit the main aim of the system of providing the correct level of funding to meet the participant’s reasonable and necessary needs.

After reading the proposed changes and trying to make sense of the language used in the papers, we note the following:-

  • There is not one document that simply explains the whole process that can be easily understood by time poor ageing carers.
  • This huge amount of paper work has been trust on time poor parents not asking us if we agree to the changes but instead it asks us to indicated how we think it should be implemented
  • 400.000 people with NDIS funding, yet a survey was done with only 500 participants, with only 147 people agreeing to the changes. Now we have been informed that 4000 participants will be given the opportunity to trail the Independent Assessments (IAs) will they be from different age groups, from disadvantaged cultures, location’s including regional areas, participants with complex multi disability coupled with health conditions?
  • Before drastic changes are proposed, surly one needs to do an evidence-based survey of participants and their families.
  • We would like to know if part of this proposed changes will participants still be allowed to pay for assessments associated with NDIS access. (Specialist’s medical people)?
  • Many participants and their parents/carers have over the years built up an excellent team of Medical, Allied Health community connections and services. Plus, most of our families have excellent support coordinators and they have been empowered to speak and achieve outcomes from their person’s planning meeting.
  • The NDIS was built around giving participants choice and control, so please give people a chance to keep the present system or use the (IAs) system. This leads to the question of how can the NDIA especially assist new participants / families, people from disadvantaged cultures, ageing parents prepare for the first independent assessment. One solution would be to have preliminary funding to have a skilled support coordinator to accompany carers/participants to the meeting.
  • It is important that the participant’s goals lifestyle, change of circumstances etc. are discussed in the
    conversation with the participant.
  • For higher functioning people we note, tend to have a tendency to overestimate their abilities which
    would result in an underfunded plan. Therefore, it is essential that their carers views are also heeded
    during the discussion.
  • Concerns that families who do not have a skilled support coordinator will not understand the relevance of the suits of documents that the independent assessors will use to determine the person functional capacity /support needs. The tools used for these assessment’s most families will not be able to understand unless the family has been briefed on the assessment paper.
  • Will the (IAs) take notice of the Allied Health and Medical reports sourced by participants over the years?
  • We have concerns that the allied health therapists and specialists will not receive training in the correct language to use in their reports to the (IAs) Families over the years were able to give our health team a brief on NDIS language that they could incorporate into their report (especially for participants to gain a SDA allocation) A template needs to be completed to give all medical personal involved with the individual participant.
  • We have grave concerns re how the delegate can assess the needs for the additional support of SDA
    accommodation to be included in the draft plan given the extraordinary long and complex system
    currently utilised for the participant to gain SDA funding the procedure for this need to be detailed
  • SDA and non-SDA housing will the NDIA realise this is urgent to be sorted especially for ageing parents to transition their person into care before they die
  • Grave concerns that the needs of the carers to sustain them in their caring role is not mentioned in the (IAs) process
  • Concerns that the Delegate may not fully understand the participants needs that has Intellectual
    disability plus mental illness or a chronic health issues. Plus the health, financial issues living situation of the ageing parent/parents still providing care in the family home to older participants
  • At the planning meeting to discuss the use of the draft budget that the participants have received, again it will be essential that participants and carers have the support of a skilled support coordinator who understands the person’s needs and how best the funding could be utilised to achieve their goals.
  • Will there be enough funding for the person to meet their goals? If not, what is the process to investigate further?
  • It essential that any plan review is resolved speedily and not to the current times scales. If the present system does not meet the needs of the participants and a dispute occurs over the plan allocated will AAT be allowed to assist? Many carers do not have the money to appoint an independent lawyer to assist. The NDIA have their own team of lawyers to go up against the participant and their families / that is not a fair situation to the participant who should have choice and control, support of a system that was built to meet the reasonable and necessary needs of people with a significant disability to live the best life in Australia.
  • The NDIA guidelines concerning the proposed changes must be a reviewable decision by AAT

Direct Feed Back from Carers of People with a Disability:

I am writing to voice my concern regarding independent assessments. This does not take into consideration the fact many intellectually disabled people can’t speak for themselves. Only family via close association are able to know what is best for the person being assessed. This is like the DHHS saying we will normalise people with Intellectual disabilities and this normalisation led to my sister’s death with a simple urinary tract infection.

I am angry about all this Jargon that excludes carers being involved for the voiceless. Often carers who have tirelessly showered and dressed the person all their lives with no help or very little help while other people who can advocate for themselves go to the Tennis the cricket etc with a one on one carer.

The system is not equitable and is a disgrace. These elderly carers have saved the taxpayer a fortune over the years. Billions of dollars according to the figures for social capital.

They bulldozed the medical and surgical wards at Kew cottages and at Mont Park and still 30 years after doing this don’t have a protocol for assessing People with intellectual disabilities. Please see Professor Troller’s reports. PWID are 50 % more likely to die with an inadvertent death and their life expectancy is lower than that of the aboriginal population. They are 40 % more likely to have a psychiatric illness because of the way they are treated.

This is an absolute disgrace. Families must be able to advocate for their loved ones.

Stephanie Mortimer

Feedback from a sole parent of a 25 years old son with Autism, Non-verbal, Intellectual Disability

Thank you for this chance to give my personal, real-lived experience on this proposed policy. Briefly:
– I have not been notified about this new policy by the NDIS: not via email, telephone or postal.
– It is difficult to understand and time consuming to read through this policy. I tried the Easy to Read version and that offers barely any information at all.
– I am not being asked if I agree/need the changes but only to indicate how I think it should be implemented: where is my choice and control in all of this?
– I am a sole carer and have been relying on my support coordinator (SC) to support me in supporting my son thus my SC is a necessary and reasonable support: will SC continue in this new policy?
– My son has chronic, complicated disabilities and it’s taken me much hard work to find health experts to support and gotten to understand my son’s needs over the years: how can some unfamiliar expert/s, albeit highly qualified, able to assess my son’s needs in a few hours?
– The needs of the carers to sustain them in their caring role is not mentioned
– I find the process of talking about my son’s disability, support needs and our life circumstances to
complete strangers (i.e. NDIA planners) confronting, traumatic and invasive. It seems with IAs, I would have to go through this process between every 5 years or (minimal) 3 months, and before plan reviews that result in a change to plan funding. I think it’s reasonable that this time line needs to be review; i.e. IAs every 10 years and no IAs before plan reviews that result in a change to plan funding.

2. How can we support participants to prepare for a planning meeting? What might be needed to support
participant decision-making?

To allow participants to have their say in the overall budget instead of the budget being decided beforehand at the IA; to look at the proposed budget together with the planner and their support person/s, and see if that would be reasonable and neccessary for them. And only after this process should the overall budget be finalised.

4. How can we assure participants that their plan budgets are at the right level? (E.g. panels of the Independent Advisory Council that meet every six-months to review learnings and suggest improvements). Please also refer to answer to question 2. Participants need to have a say in the outcome of their IAs to feel that they have a say in their future at all. They, and with the support of their day-to-day support person/people, health experts would have a realistic and holistic view of what they need; on a day-to-day basis.

8. How best to handle the timing of the release of funds into plans and rollover of un-used funds? Annually instead of monthly; this will take into account the changes that usually occur in life. E.g. it might take a participant a few weeks to find the right support worker or programs therefore they might spend little in one month but more in the next (finding the right support is challenging, not to mention if you have to align that with your funding). Giving participants this flexibility will empowered them to make the most of their funding thus giving them the chance to build a better future, and relying less on the NDIA in the long run.

Linh Le

CLA do not have a team of paid people to assist with our feedback, we would like to suggest to the NDIA that they please read the papers that Disability Service Consulting have distributed. Their staff have lived experience and highly skilled their questions and suggestions need to be considered before proposed changes are implemented. Please do not thrown the baby out with the bath water, look at what has worked in the present scheme, expand on the positives. Look at which groups are in the vulnerable category, survey them and find out what they may need. In fact, please ask participants and families before you implement drastic changes to the scheme that was meant to give people with a disability and their parents/carers hope for the future. As a nation we need to work together and carers especially ageing carers need to be recognised and supported. We also need to recognise the benefit of regional independent carer groups.

Yours Sincerely
Kevin Turner CLA Chairman
Marie Hell CLA Secretary