Care reform

In 2023, I tried to use the services Australians are told are available to a person with an intellectual disability. As a parent, I asked how my family member could get everyday support, independent advocacy and help being heard in decisions about care. I wrote to services, regulators, legal and advocacy organisations and government offices. The question that kept coming back was simple. Who would take responsibility for the next step, and how would the person know it had happened?

That experience led to the Cognitive Disability Standards Refresh white paper. This page sets out what I tried, what the correspondence establishes and what I am asking governments, training organisations and providers to do now.

The correspondence and what followed

Trying to get support in 2023

• August and September. I sought help with everyday disability support and raised concerns about continuity of care. The correspondence includes exchanges about an NDIS plan and requests to care and safeguarding services.
• October. I sought legal and advocacy assistance and contacted a disability service provider. A legal advice appointment was arranged. The provider returned a referral because it needed clearer information about the service requested. A request for more information gave me something to respond to. The referral email did not confirm that support had started.
• November. Victoria’s Senior Practitioner office explained the boundary between its role and the NDIS safeguards system. The Commonwealth Attorney-General’s Department’s Royal Commissions Branch said the Disability Royal Commission had completed its work and pointed me towards advocacy, the NDIS Commission and legal assistance. Those replies helped identify possible routes. They did not confirm that a receiving service had agreed to take the next step.
• December. After I asked for help checking a family member’s welfare, the National Disability Abuse and Neglect Hotline replied that its role was primarily referral and that it did not investigate reports. The reply did not confirm that an investigation or a welfare check had taken place.

This is a parent’s account checked against selected sent emails and replies. I can document requests, replies and some steps taken. I cannot establish every outcome from the correspondence I have. The original emails and identifying details are kept private. The Disability Royal Commission’s final report is public.

Taking the proposals to government in 2025

My August 2025 records list the Commonwealth and all eight state and territory Attorneys-General as recipients of an early guardianship and decision-support proposal. The surviving recipient list does not establish delivery to all nine offices. Western Australia, Queensland and South Australia replied in September. WA suggested a law reform submission. Queensland pointed to its QCAT Act review. South Australia described its tribunal’s existing medical-evidence procedures. These replies came before the 25 September 2025 white paper. In the correspondence reviewed, I found no office agreeing to assess the proposal, accepting responsibility for a transfer, or starting a trial.

There has been other reform work. WA tabled its guardianship and administration law reform report in February 2026. NSW reported a project to record people’s will, preferences and decision-making support needs. These are reasons to ask what changed in practice and where the white paper could add something. WA Project 114 · NSW parliamentary answer

What to test

The paper proposed pilots across metropolitan, regional and remote settings. A later 12-week proposal starts with fictional cases to test how people find and use information about police or custody, independent legal help after a refusal, and transitions out of hospital. It includes draft training and a review before work proceeds with real participants. Read the 12-week decision brief

The November 2026 proposal is for a separate, smaller service trial. The first four weeks would pay three steering members with lived experience, fund the communication support they choose, obtain independent legal, clinical, access and privacy review, and rehearse six fictional cases. An independent host would have to accept the scope and funding before that work began. A further decision would be needed before six consenting adults could each choose one everyday outcome to work towards with a navigator and backup. The trial would check whether help arrived and whether the person found it useful. Existing care would continue. A host was approached in November. No funded or operating trial has been verified.

Training at TAFE and university

Ask people with intellectual disability, care workers, nurses, educators and employers to review what is taught and how it is assessed. Start with accessible communication, including communication aids, supported decision-making, handover, rights and privacy, and knowing when to ask for clinical or other qualified help. Practise with realistic scenarios and observed skills. Fund participation, placements and supervision. Review how someone can move from disability support into further study or nursing while preserving their options.

Appendix Q maps proposed modules and assessments. The original draft gives different figures for training hours, supervised practice and recency. Resolve those conflicts with educators and accreditation bodies before using the figures. Existing qualifications and registration pathways apply. Any new title, credit arrangement or qualification would need separate approval. Certificate III in Individual Support · Certificate IV in Disability Support · Approved nursing programs · NDIS Workforce Capability Framework

Law reform and provider responsibilities

The paper asks lawmakers to examine independent decision support, accessible reasons, review rights and accepted handovers. It proposes an Integrated Disability Clinician and a Decision Support Consultant as roles to assess, with an independent second check for defined high-risk decisions. Neither proposed role creates authority over a person. The person’s will, preferences and communication should guide decisions. Existing clinical, statutory and review responsibilities continue to apply.

1. Government and commissioners should name a program owner, define duties and fund access, training and independent evaluation.
2. Provider leaders should name who is responsible for delivery, supervision and fixing missed steps. They should record who accepted a handover and what will happen if it stalls.
3. Workers and clinicians should record the person’s own choices, act within their roles, flag unmet needs and make sure the person can reach the next service.
4. Independent advocates, regulators and evaluators should have a clear route to check whether the person was heard and whether promised assistance was delivered.

Support should carry through a parent’s death, a worker leaving, a provider closing or a technology becoming obsolete. The person should be able to correct, carry and share the information needed for that continuity on their own terms. Published research, implementation and law reform papers

White paper, crosswalks, templates and workbooks

• Read the white paper and corrections. The public repository preserves the original 390-page core and the later addendum.
• Browse the 33 service crosswalks. A crosswalk connects a proposed standard with what happens in a service.
• Download the template library and workbook materials. It includes drafts for support plans, handovers, decisions, escalation, evaluation and costing. Costing examples use illustrative assumptions. Clinical and legal materials need qualified review before use.
• Use the practical Care Continuity toolkit for accessible preparation and routes to human help.

Public pay and income support

Commonwealth figures checked 13 November 2026. The federal parliamentary base salary is $239,270 a year. The published additional rate for an ordinary Cabinet minister is 72.5% of that base. That puts the Commonwealth Attorney-General role at about $412,741 a year by calculation, before separate allowances and work expenses. Parliamentary rules provide for electorate allowances and other provisions such as work travel and vehicles. The separately appointed Secretary of the Attorney-General’s Department has published assigned remuneration of $880,340. Parliamentary salary and allowances · Ministerial salary report · Cabinet responsibilities · Departmental secretary remuneration

The maximum single adult Disability Support Pension rate is $1,237.70 a fortnight, including supplements, or $32,180.20 across 26 fortnights. It is income support. Actual payments depend on eligibility and circumstances. These are public figures, with no claim about anyone’s personal finances or disability support funding. The question for offices with publicly funded staff and resources is what practical help they can show reached the person. Services Australia payment rates

What we are asking each office to answer

1. Can you locate the 2025 approach? Please say what your office did with it and which area accepted it, if any.
2. Who will assess the current proposals? If another office has the remit, please seek an accepted transfer and tell us who took it.
3. Will you scope a funded, independently evaluated trial and discuss the training and provider proposals with people with intellectual disability, their chosen supporters, educators and workers? If you decline, please give reasons.
4. What already works, for whom, and what evidence shows it? Please give the responsible office, decision and next reporting date.

We welcome corrections and links to evidence. Replies can be summarised here by office, date, decision and next step. We ask before quoting anyone and keep personal case material private. The Standing Council of Attorneys-General is one route for coordinating the law reform questions.

Follow-up sent on 13 November 2026

I sent the public page to the Commonwealth, state and territory Attorneys-General and asked for a written decision. The messages used public office addresses. The NSW request went through the Attorney-General’s parliamentary electorate office with a request to route it to the ministerial office. Sent mail confirms dispatch. Receipt by the responsible team, responses and decisions are still to be confirmed.

Share an experience or propose a change

People with intellectual disability, parents, carers, support workers, nurses, doctors, advocates, educators and anyone who wants to help are welcome. You can describe what disappointed you, what helped, or one change worth testing. If you use a communication aid or prefer someone to help you write, your contribution is welcome.

Keep people’s names, case numbers, locations that could identify them, medical and tribunal records, and screenshots out of the discussion. Speak about what you saw or experienced, and say when something is your interpretation. Challenge decisions and systems without targeting people. Ask before quoting someone. This is a discussion about improving services. For individual help, see the human help directory.

Open the Care reform discussion in Discord. If you are new to the server, join Weidu Commons and read the rules first. If you prefer to write privately, you can email a short suggestion to Care Continuity.