#disability-advocacy — Public Fediverse posts

Anyone Can Be Your NDIS Support Worker. Who Is Keeping You Safe?

Reflections from several years on the scheme.

I have been on the NDIS for several years. A recent re-hiring process clarified something I had long suspected. The scheme has a workforce problem, and participants are the ones bearing the brunt.

There Is No Mandatory Registration Requirement

Under current Australian law, participants who self-manage or plan-manage their NDIS funding can hire any person as a support worker. Independent support Workers require no registration or minimum training standards.

The worker who enters your home, learns your medical history, handles your medications, and has significant authority over your daily life may have no formal preparation for any of it.

The NDIS Quality and Safeguards Commission exists and handles serious complaints, including abuse, neglect, and criminal conduct. Boundary violations, confidentiality breaches, and chronic unpreparedness that fall below that threshold leave participants largely without recourse. Skilled and ethical workers bring those qualities from their own formation and prior training. When those qualities are absent, the participant discovers this after the fact, and any remedy is slow, uncertain, and theirs alone to pursue.

That is the baseline. Everything that follows is built on it.

The Dog

My service dog performs specific medical functions. His effectiveness depends on remaining focused and oriented to me.

Some workers reach for him the moment they walk through the door. They do not ask.

Touching a service animal without permission is a safety violation and, in some contexts, carries legal weight under Australian disability discrimination law. A worker entering the home of a participant with a service animal has a professional obligation to understand what that animal does and what it requires. That preparation belongs to the provider. Its absence transfers the risk to the participant.

This is a professional standard.

What the Certificate III Does Not Cover

The Certificate III in Individual Support is the standard qualification in this sector and takes between six and twelve months. For many workers, it is completed online with minimal supervised practice hours, and it does not prepare them for the clinical and ethical complexity of supporting people with invisible or fluctuating conditions.

A worker with their cert may have no framework for how fatigue functions in ME/CFS or autistic burnout. Why pushing through is sometimes dangerous, why capacity varies day to day in ways that cannot be read from a plan approved six months ago, and why the participant’s account of their own condition is the primary source of accurate information.

Workers who arrive without that preparation fill the gap with assumptions. Correcting those assumptions, educating the person sent to support them, translating their own experience into terms the worker finds legible — this falls to the participant. That work is skilled and exhausting, and no NDIS plan funds it.

A Plan Is Not a Person

An NDIS plan records approved supports, written at a point in time by a planner who may have spent an hour with the participant. What it cannot capture is what a Tuesday looks like after a bad night, or how that changes what Wednesday can hold.

Workers who treat the plan as a complete picture end up supporting the document. When the participant’s actual day diverges from what the plan implies, some workers become confused, inflexible, or subtly sceptical. The participant then carries that response throughout the day.

Confidentiality Is Not Discretionary

Support workers enter your home and learn about your health, medications, finances, and relationships. The ethical obligations around that information are clear. Workers routinely underestimate them.

Information moves in cars and waiting rooms, in casual exchanges during handover. Shared without consent in contexts the participant did not choose, each instance is a breach — and the pattern across a working relationship represents a significant, under-reported ethical problem in the sector.

Providers who do not train explicitly for this are not taking their duty of care seriously. The Commission’s framework addresses the most serious breaches. Below that threshold, the everyday end goes largely unmonitored.

A Diagnosis Is a Starting Point

Workers who arrive having already decided how a participant communicates — based on a diagnostic label rather than a conversation — are making a category error with professional consequences.

Autism produces significant variation across individuals, as do acquired brain injury, cerebral palsy, and many mental health conditions. Experience with one person transfers little to the next. The participant is the authority on their own communication and needs. Workers who approach that through the filter of what they already think they know require the participant to work harder to be accurately seen.

Being Present Is the Job

A worker on their phone during support hours has decided where their attention belongs. That decision reflects on the worker and the provider, and on a regulatory environment that permits it without consequence.

Participant time is funded. Divided attention during that time is a failure of basic professional conduct.

Punctuality Has Clinical Stakes

For participants with fatigue conditions, medication schedules, or appointment windows that cannot flex, a late worker is sometimes no worker at all. The window closes, an appointment is missed, and the energy available at nine o’clock is gone by ten.

Workers who treat punctuality as a matter of general courtesy have not been told what the costs of late arrival are in this context. Providers should tell them, in writing, before they begin.

Handover Exists for a Reason

When workers do not read handover notes, participants repeat themselves. Questions get asked that the notes had already answered. Avoidable errors get made. The first portion of support time becomes unpaid orientation, delivered by the person the support was supposed to serve.

Reading the handover is the floor — it signals that a worker understands preparation begins before they arrive.

The Re-Hiring Process

When a support worker leaves, the participant does not simply wait for a replacement. A position description must be written, applications reviewed, interviews conducted, and a hiring decision made with incomplete information about a person who will have access to their home, their medical records, and significant portions of their daily life.

After that comes orientation, and the contextual knowledge that made the previous support functional has to be rebuilt from the beginning.

None of this is funded. The NDIS has no category for the labour of maintaining access to support, and for participants with high support needs or complex conditions, that labour is substantial.

What Competent Support Looks Like

Workers who are good at this job arrive having read the available documentation, ask before they act, and give more weight to what the participant tells them about their own needs than to any plan or file. When something changes during a shift, the response is immediate and adaptive.

Their presence does not generate additional work for the participant — that is the measure. Support that requires the participant to manage, educate, or compensate for a worker’s preparation gaps has redistributed the load rather than reduced it.

What Needs to Change

Mandatory registration for all NDIS workers, regardless of how a participant’s plan is managed, would create a baseline of accountability. Genuine consequences for ethical breaches — including low-level, chronic ones — would change the conditions under which workers operate.

Revised training requirements are long overdue: supervised hours in complex support settings, explicit coverage of invisible conditions, service animal protocols, confidentiality obligations, and fluctuating capacity. These are the preparations the role demands.

Wages need to rise. Turnover in this sector is directly linked to pay, and the continuity of support is a safety condition for many participants — the relationship carries clinical knowledge that cannot be quickly or cheaply reconstructed.

Participants also need a complaints mechanism they can use without fear of losing their support. Accountability cannot depend on participants absorbing the risk of speaking up.

The Principle and the Practice

Participant choice and control sit at the centre of the NDIS. On paper, participants are experts in their own lives and directors of their own support.

That principle requires a workforce framework capable of supporting it. At present, workers enter participants’ lives with significant authority over their access, safety, and daily functioning, operating under training requirements and accountability mechanisms that do not match the weight of what they are being asked to do.

Positioned at the centre of a scheme designed around their needs, the participant often ends up holding the system together when it fails to hold itself together.

That is worth saying clearly, and worth changing.

Share this with someone who trains support workers, manages a disability provider, or influences workforce policy. The problem is documented. The changes required are known. What is missing is the will to treat this workforce and the people it serves with the seriousness they both deserve. #NDIS #DisabilityRights #DisabilitySupport #SupportWorkers #DisabledPeople #DisabilityAdvocacy #Accessibility #AusPol #Australia

From @onelife_livedwell on IG: COVID floats in air the way a jellyfish floats in water. It’s airborne, which means the primary route of infection is inhalation of virus laden aerosol particles small enough that they can stay suspended for hours.
#covidisairborne #cleanair #healthscience #disabilityadvocacy #scicomm

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✨ NEW: Disability Bulletin Issue 1

Your source for disability rights news, policy updates, and community resources.

📖 Issue 1: Now available
📖 Issue 2: Coming soon

Stay ahead of the issues that matter to YOU.

Read now: https://t.co/7vtI7QecTg

#DisabilityAdvocacy #DisabilityCommunity #StayInformed

Hey, I'm Tony. Totally blind musician, podcast host, assistive technology instructor, and founder of Inclusive Pulse.
I've got 18 music releases out there, a podcast called The Tony Gebhard Show, and I built NVDA Coach — a free, open-source add-on that teaches NVDA right inside the screen reader.
I care about accessibility, disability advocacy, LGBTQ+ inclusion, sobriety, and keeping it real. I make things, I break things, and I talk about all of it.
Based in the west coast with my guide dog Norris.
Music, motivation, and positively obnoxious.
https://tonygebhard.me
#Introduction #Blind #Accessibility #A11y #AssistiveTechnology #Musician #Podcast #NVDA #NVDACoach #OpenSource #DisabilityAdvocacy #LGBTQ #Inclusion #InclusivePulse
Stay groovy.

Hola Titánicos, cada 28 de febrero se celebra el día mundial de las enfermedades raras, este año bajo el lema: "Porque cada pERsona importa", poniendo el foco en quienes hay detrás de cada diagnóstico, cada tratamiento y cada investigación: las personas y sus familias.

https://somosdisca.es/dia-mundial-de-las-enfermedades-raras-2026/

#Diamundialdelasenfermedadesraras #diadelasenfermedadesrara #cebras #enfermedadesminoritarias #enfermedades
#salud #enfermedad #saludmental #enfermedadrara #enfermedadesraras #discapacidad #disabilities #DisabilityAccess #disabilityAdvocacy #disability #titanicos #visibilidad #titan #prevencion #cuidados #somosdisca #gentetitanica #investigación #diagnostico #cura #tratamiento #feder #somosgentetitanica

I just contacted my legislators about the Medical Foods and Formulas Access Act.

I use prescribed oral medical nutrition specifically to prevent needing a feeding tube. Right now the system will often cover the tube and hospital care but not the treatment that helps avoid it in the first place.

For many disabled and chronically ill patients this is the difference between staying stable and medical decline, especially for people on Medicaid or fixed incomes.

If you are in the US and this applies to you, the Rare Disease Action Network has a quick form you can use to contact your representatives.

https://rarediseases.quorum.us/campaign/154665

#MedicalFoods #RareDisease #DisabilityAdvocacy #HealthcareAccess #ChronicIllness #Medicaid #PatientAdvocacy

Time for #TipOfDay since I’ve been glowing for a few days now with joy in having a number or things go right; good coffee at hand and a quiet home to browse online and remember other pleasant things that took a lot of work yet went well. This post has many accommodations we use for #Accessibility.

Solved: for my son who is a wheelchair user to sit right up to the table. The height of the chair arms was limiting how close he could sit. Tables were way too low or too high. After trips to furniture stores with no success finding a table with height to allow wheelchair to fit under it. “Counter height” tables too high.

Son has to have support for his back and arms while eating. He has declining dexterity so he has a special spoon and adult bib. I’ve kept a heavy vinyl topper on the heavy oak table and use placemats. Think: messy eater. He could only get seated close but still 8-10” farther away from the edge of our table because of the arms of his chair or wheelchair. We all wanted him to sit right up with us.

So, no new table was available and none online a height where a wheelchair user can fit in with the rest of the adults at the table. Think of how many families have this same issue! Surely a workaround is needed.

Voilá, lightbulb moment. Got very strong walnut risers 1” tall for table legs. Drilled hole through and got bolts 1 1/2” to attach to original hole in leg used for original bolt with thin hard caster. Put 2 heavy felt casters in place. Now table perfect height to allow an armchair or wheelchair to slide under. But the old chairs were a bit low for table now. Voilá, very thick chair pads solved it all. Instead of spending $1,000 or more on new table and chairs, spent about $100 and we are all happy. #Disability #Wheelchair #WheelchairUser #DisabilityAdvocacy

Congress Set to Reject Trump-Era Changes to Special Education and Disability Programs

Congress is moving to block major changes proposed by the Trump administration that would have significantly reshaped special education funding and federal disability programs. A bipartisan budget agreement advancing through Capitol Hill rejects efforts to overhaul the Individuals with Disabilities Education Act (IDEA) and preserves key programs serving people with disabilities.

Lawmakers in both chambers are racing to pass funding for most federal agencies before the current deadline of January 30. The U.S. House of Representatives has already approved the agreement, and the U.S. Senate is expected to consider it next.

What the Budget Agreement Does

The funding deal delivers a clear rebuke to proposals put forward during the Trump administration, including those by Donald Trump, that disability advocates warned would weaken protections and services.

Key provisions include:

A $20 million increase in special education funding Rejection of efforts to block grant IDEA funds, which would have given states more discretion while eliminating dedicated programs Preservation of parent training and information centers, technical assistance centers, and personnel preparation programs Limits on shifting special education oversight away from the U.S. Department of Education

“Importantly, the deal rejects the block granting of IDEA funds proposed by the administration,” said Stephanie Smith Lee of the National Down Syndrome Congress, a former senior official in the Department of Education’s Office of Special Education Programs.

Protections for the Department of Education

The agreement also includes language designed to prevent administrative workarounds that could undermine congressional intent.

According to advocates, the bill:

Prohibits the Department of Education from transferring education funds to other federal agencies without explicit congressional approval Blocks the use of funds for departmental reorganizations that would decentralize or reduce staffing related to special education

Advocacy groups view this as a direct response to concerns about dismantling or weakening federal oversight of K–12 and special education services.

Disability Programs Maintained Across Federal Agencies

The spending package also safeguards programs housed within the Department of Health and Human Services (HHS), including:

The Administration for Community Living (ACL), which supports community-based services for people with disabilities, older adults, and caregivers University Centers for Excellence in Developmental Disabilities (UCEDDs) Protection and advocacy programs serving people with disabilities

HHS had previously announced plans to eliminate or reorganize some of these programs, but Congress opted to maintain current funding levels.

“Congress has unequivocally rejected the proposals in the president’s budget to cut programs that support people with disabilities,” said Alison Barkoff, a former head of the Administration for Community Living.

Why Advocates Say Vigilance Is Still Needed

Despite the apparent victory, disability and special education advocates caution that oversight remains essential. Even after passage, agencies control how and when funds are distributed.

Advocates stress the importance of ensuring:

Timely distribution of congressionally approved funds No administrative efforts to defund or delay programs based on shifting priorities Continued enforcement of IDEA and federal disability protections

Denise Marshall, CEO of the Council of Parent Attorneys and Advocates (COPAA), emphasized that Congress has not authorized moving special education programs out of the Department of Education and that families should remain watchful.

A Significant Win for Disability Advocates

If finalized, the agreement represents a major win for people with disabilities, their families, educators, and service providers. It reinforces Congress’s role in shaping disability policy and signals bipartisan support for maintaining long-standing federal protections in special education and community-based services.

Follow DoRaleigh.com for daily updates on government meetings, local festivals, and community happenings — your one-stop guide to everything Raleigh!

Post your community News, Events, and you can request placing a Paid ad on our Submissions Page.

Follow Us: Instagram | Facebook | BSky | Linkedin

#CongressDisabilityPrograms #DepartmentOfEducation #disabilityAdvocacy #disabilityRightsPolicy #federalBudgetAgreement #IDEAFunding #IndividualsWithDisabilitiesEducationAct #News #specialEducationFunding #specialEducationNews

Registration is now OPEN for the 2026 ACB D.C. Leadership Conference!

The conference will be held 3/6 to 3/10/26, as a hybrid event, with in-person activities in Arlington, & virtual participation options. Events include legislative training, Capitol Hill visits, advocacy discussions, and more.

Registration closes 2/28/26. Hotel room block deadline is 2/6/26.

Learn more and register:
www.acb.org/2026-acb-dc-leadership-conference

#ACBLeadership #Accessibility #DisabilityAdvocacy #PCBCommunity

Melanie Watson Dies at 57 Diff'rent Strokes Star Disability Advocate

Melanie Watson was born on July 20 1968 in Dana Point California. She grew up with osteogenesis imperfecta a condition also called brittle bone disease. Despite frequent fractures she loved performing. As a child she took drama classes and appeared in school plays. Her family encouraged her talent and she soon landed small TV parts....

#brittlebonedisease #DiffrentStrokes #disabilityadvocacy #MelanieWatson #nonprofit

Melanie Watson Dies at 57 Diff'rent Strokes Star Disability Advocate

Melanie Watson was born on July 20 1968 in Dana Point California. She grew up with osteogenesis imperfecta a condition also called brittle bone disease. Despite frequent fractures she loved performing. As a child she took drama classes and appeared in school plays. Her family encouraged her talent and she soon landed small TV parts....

#brittlebonedisease #DiffrentStrokes #disabilityadvocacy #MelanieWatson #nonprofit

👋 Hello Mastodon!

PCB is excited to be here! For over 75 years, we’ve advocated for people who are blind or have low vision across PA, promoting accessibility, independence, & equal rights.

We believe accessible social media matters.

We’re glad to be part of the conversation.

https://pcb1.org

#Mastodon #Accessibility #Blind #LowVision #DisabilityAdvocacy #InclusiveDesign #Pennsylvania

2025 feels so significant after years of deep struggle.

What began as a year marred by family estrangement and a bad therapist transformed as I worked through the mechanics of CPTSD and internal communication. Since discovering I am AuDHD in April, I have finally begun to understand how my system works rather than seeing it as something to fix.

Educationally, I settled into my path and am now completing my Master of Counselling after trying a few different pathways. My life as a choral scholar also flourished, moving from a half-scholarship to a full scholarship this year. Although I left the Synphony chorus, music remains a constant through my Anglican church choral work.

For the first time, I stepped into volunteering, contributing to accessibility, copywriting, and peer groups. I am working with an autistic-led organization and will lead 2 seer groups next year. I am also an online community champion for the Beyond Blue. 2025 has been a year of claiming space where I was once told I did not belong.

#2025YearInReview #AuDHD #CPTSD #MasterOfCounselling #ChoralScholar #DisabilityAdvocacy #Accessibility #BlindLife

Melanie Watson Dies at 57 Diff'rent Strokes Star Disability Advocate

Melanie Watson was born on July 20 1968 in Dana Point California. She grew up with osteogenesis imperfecta a condition also called brittle bone disease. Despite frequent fractures she loved performing. As a child she took drama classes and appeared in school plays. Her family encouraged her talent and she soon landed small TV parts....

#brittlebonedisease #DiffrentStrokes #disabilityadvocacy #MelanieWatson #nonprofit

🚀 Discover 3mpwrApp: made by & for the disability community & injured workers with advocacy tools, wellness features, & community support!

Over 50 features to help you thrive !

Check out the visual tour:

https://3mpwrapp.pages.dev/app-tour/

Join our beta now!

#DisabilityAdvocacy #InjuredWorkers #WellnessTech

How's everyone doing tonight?

I slept most of the day because of pain from #Fibromyalgia and #RheumatoidArthritis, so now I'll probably be up all night. I'm going to try and get some studying done even though my hands hurt. Really hoping the compression gloves I ordered come in soon.

Since college didn’t work out, I've been building my own self-paced curriculum:

• Bible courses from Christian Leaders Institute to deepen my understanding and support future nonprofit work
  
• Coding lessons with #Codecademy (codecademy.com)
  
• Braille proofreading training through NLS and NFB
  
• And if I get the scholarship, AI Software Engineering at Maestro AI University. I applied two days ago and should hear back within 14 days.
  

Tonight I'm deciding whether to focus on Christian Leaders coursework, coding, or Braille proofreading.

Tomorrow's my 34th birthday. My mom’s taking me out to eat, and later we're visiting a new ocularist to see about prosthetic eyes. My current ones no longer fit and cause pain, so they'll likely need to start me with conformers first. I'm dreading that part, but it’s time. I haven't been refitted for new ones since I was 16, a few months after a surgery to remove my extremely painful right eye.

#ChronicIllness #Disability #Blind #Accessibility #PainAwareness
#Learning #Education #Coding #Braille #AI #EdTech
#Christian #BibleStudy #Faith #Christianity
#NonprofitLeadership #DisabilityAdvocacy
#Birthday #Turning34 #Ocularist #Prosthetics

🔥 Closed Beta Testers are starting soon!

This is your chance to help shape the future of disability advocacy tech from the ground up.

3mpwr is here to uplift, guide, and empower every step of your advocacy journey — and now you can be part of building it.

https://3mpwrapp.pages.dev/user-guide/

#3mpwr #ClosedBeta #DisabilityAdvocacy #AccessibilityMatters #Empowerment #SupportAndStrength #InclusiveTech

2/2

@thetyee

["The decision was made after the provincial government’s recent backtracking on the redesign of language acquisition programs for deaf, hard-of-hearing and deafblind children.

It’s not just an organization closing,” said Sarah-Anne Hrycenko, a Deaf professional who received support through the Deaf Children’s Society of BC, or DCS, when she was a baby. “It’s the fading of an entire Deaf ecosystem that once nurtured language, identity and leadership in [the] B.C. Deaf community.” ]

This #BCgovernment doesn't really care about #PeopleWithDisabilities. Programs/services/supports for #disabled citizens have been cut, budgets slashed; we face years plus long waiting lists to access both medical & disability support services, we live under #eugenics public health policies, our BC government still denies prescription coverage for several essential medications, funding for nonprofits that help disabled people live/work has been fully cut or severely reduced. That's only the tip of the inhumane cruelty icebergs - when it comes to how our governments have #dehumanized & mistreated us disabled citizens. Their dishonest PR speeches do not align with the hard realities that people with disabilities in BC face, regularly.

#DeafPeople #BCNDP #BCpoli #CDNpoli #DisabledLivesMatter #DisabilityAdvocacy #BCNewDeathParty #DisabilitySupports #DisabilityRights

I'm collating these in case any mention practical support groups who might help someone. Even a few hours' carer respite a week might be good.
5 https://carersjapan.com/english/ This seems like a political organisation, but they might have a list of contacts or tips.
6 https://www.researchgate.net/publication/378950244_The_Challenging_Role_of_Informal_Carers_Within_the_Long-Term_Care_System_in_Japan_Focusing_on_Issues_of_Japanese_Working_Carers
7 https://rapp.ualberta.ca/wp-content/uploads/sites/49/2022/11/Carer-Leave-Policies-in-Japan.pdf Important policies in case any employers need reminding of employees' rights (which is neither easy nor enjoyable, I know).  
8 https://www.thelancet.com/journals/lanpub/article/PIIS2468-2667(23)00311-0/fulltext  
9 https://www.sciencedirect.com/science/article/pii/S0889158321000502  
10 https://www.carersuk.org/media/ja3djfa1/briefing-paper-international-carers-leave-policies.pdf This might be relevant if someone confuses domestic and international carers' requirements.

#care #UnpaidCarers #caring #CaringEconomy #CareGiver #CareGiving #CareGivers #CareTakers #Domestic #Home #House #Spoonie #ElderCare #Disability #DisabilityAdvocacy #Accessibility #EaseOfAccess #Japan

🧠📚 Been deep in the weeds refining my APA 7 student paper template—fully accessible, screen reader-friendly, and powered by LaTeX + Makefile automation. It’s designed for blind students, accessibility advocates, and anyone who wants a clean, reproducible academic workflow. Note that it doesn't use the apa7 class since that wouldn't allow the PDF to be tagged for accessibility.

✅ Includes:

• Automated PDF builds with BibLaTeX
• Submission and status reporting targets
• Sample references. Bib
• Screen reader-friendly README

Built and tested across Raspberry Pi, Fedora Remix, and openSUSE with WSL integration. If you’re navigating academic publishing with accessibility in mind, I made this for you.

🔗 Check it out on GitHub

#Accessibility #BlindTech #LaTeX #Makefile #AcademicWriting #OpenSource #WSL #Linux #ScreenReader #DisabilityAdvocacy #TechForGood #APA7 #GitHub #RaspberryPi #FedoraRemix #openSUSE #AcademicWorkflow

🌟 Tech Toward Triumph: Help Me Access the World Through Braille 🌟

Hi all,

I’ve launched a Crowdfunder campaign to raise support for a Handy Tech Activator Braille display—a device that would make a huge difference in my life. My mom and I created this campaign together, and she wrote a timeline of my health journey and everything I’ve been through. It’s been a long road, and this technology would help me move forward with more independence and opportunity.

🔗 https://www.crowdfunder.com/p/techtowardi-triump

This Braille display would allow me to:

• Access digital content independently
• Continue my studies and creative work
• Stay connected and advocate for myself more effectively

If you can donate or share the campaign, it would mean the world to me. Every bit of support helps me take one more step toward triumph.

Thank you for reading, supporting, and believing in me. 💙

#BrailleDisplay #AccessibilityMatters #TechTowardTriumph #DisabilityAdvocacy #Crowdfunder #BlindTech #HandyTechActivator #Braille #blind #disability