National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 2116

Wednesday 27th May 2026 To the Senate Community Affairs Legislation Committee, I am writing to vehemently oppose the proposed NDIS reforms. I have serious concerns about many aspects of the bill as detailed below: My name is Melanie Guiney; I give permission to use my name but not my contact details.IamahardofhearingDevelopmentalEducatorwhohasworkedinthedisabilityindustryfor30yearsinvaryingroles.IhavellivedexperienceandamanicipantofthenNDIS.NeverbeforehaveIsuchuncertainty,fear,anger,frustrationandalpethesswithinourcommunity.ItisheartbreakingtowatchasthelpeoplebehindtheBillarestrippedofftheirmuchneededsupport.Iamasoletradewhohasprovidedsexualityandrelnshipeducationtopeoplenwithanintellectualandenvelopmentaldisabilities,theirfamilies,therapyteamsandidrectcaresupports.Ialsoaneendlifedoulasupportingeoplewithelecturaldisabletoyunderstanddeath,dying,griefandsupporntoputthewillandpreferences inorderforendlife care directives.Mydaily sexuality relationship education role can entail scenarios such astheses:•Supportingtneagerswitnelctual andenvelopental disability needingeducational resources,just like their non -disabled peers toteach them age-appropriate andaecssible informationaboutaffirmative consent,buthat also includesinformationandaadvice thatrelates theimpact of their disable.This keepsthem safe from offending anbe taken advantage off. •Counsellingandsuppfort people with intellectual envelopetal disabilityswhose only experience ofsexuality has been sexual assault.Pleaserememberthataccording to ‘The Royal Commission into Violence,Absuse,NeglectandexplorationofPeople wth Disability’ reported th 55 in every100 disabled peopl have experienced sexua nd/or physical violence since tage of 15.•Suppotingpeople witheelectulal disbility tonavigatetheir emergingsexual feelings anssexuality through puberty or for middle aged peoplewith a uterus who are tryingto understand what is happeningtototheirbodythrough menopause

National Disability Insurance Scheme Amendment Bill

Submission: Submission-2116

• A woman with an intellectual disability living in a group home wanting to invite her intimate partner to their home but needing support from staff working there. Negotiating this relationship so it’s experienced like others do within communities while reducing barriers preventing its occurrence.

Assistance training direct-care workers who have physical disabilities or chronic pain for those they’re caring about, including assistive devices/aides/trained support personnel. * Support individuals suffering profound intellectual/developmental disorders understanding public/private concepts— telling them where appropriate places are for masturbation—to prevent justice system contact due to offending behavior. * Helping care teams understand sexual behaviors concerning people having these conditions; supporting comprehensive education, positive behavioral strategies, compassion ensuring pleasure & safety is possible safely. * Ensuring all participants feel safe during respectful relationships.

End-of-Life Doula:

To help people with disabilities comprehend death, active dying processes, grief experiences. * Upholding rights allowing someone’s last will and preferences heard; documented and fulfilled correctly. * Facilitating documentation of life stories, end-life directives creation by families supporting intellectually disabled persons’ legacies. * Pertaining as part of the end-of-life team assisting intellectually impaired individuals.

Key Concerns:

• Budget resets and funding rules affecting daily living budgets improvement through capacity building seeing a 10% reduction. As an educator focusing on safeguarding services that empower disability communities in community protection while outlined above. Recognizing sexuality education and support fundamental human rights under Article-25a (p.-18) Convention Rights Persons Disabilities, citing “Provide persons same range quality standard free or affordable health programs provided others.”

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 2116

including in the area of sexualand reproductive health* public health programs.” I can see that this budget reset will not allow access that people with intellectual developmental disabilities need to live safer lives. This outlines limits on unused funding no longer accumulating or rolling over: such as mine waiting extensive waitlists, or crisis occurs etc. Ask consider joint position statement thirty-eight disability allied organizations signed strongly opposes any reform allowing NDIA exclude without consultation process based “reasonable necessary” particularly relate sexuality supports disability. hp://pwd.org.au/joint-position-statement-ndis-and-sexuality/ tight eligibility plan reassessments The states prospective participants must exhaust all appropriate treatment options mainstream systems such before covers funding. My participants valid permanent lifelong ongoing get better despite treatments if they could access services certainly would! However, these are hurdles face multiple barriers simple mainstream e.g., try having teenage boy have dental work when they have an intellectual and developmental disability scared change unpredictable environments people sensory specific aversions which result challenging behaviors challenge dentist. Also my role exists because cannot provide comprehensive education within a setting people already falling through gaps first instance. The

National Disability Insurance Scheme Amendment

Submission:2116 (which they paid for themselves!)and this education was around whattheyaretowithinthesessionandtounderstandwhattheexperiencewillbelike. All plans shouldbeassessedindividuallyaseachpersonhasvariousneedsands thereshouldbenobenchmarksoronesizefitsall.

Proposed support needs assessments ThesearelikelytobeliveredbyNDISemployedworkforcewhopossiblydon’thave then levelofdisabilityknowledgeandexperience,andtheyarenon-alliedhealth professionals.Itisthoughtthatanadaptationofthel-CANassessmentanda Personal andEnvironmentalQuestionnaire(PECQ)althoughthishasnotbeenmade clear.Concerninglyassessments will notbeface-to-facewithina person’shomeenvironmentandi possiblynotin withthenew ithedisabilit y.Icanonlyseethesupportneedss benefittingcostcuttingoftheN DISandonottherealpersionw itidis ability.Theparticipantisunable tviewadrafto fthese need s assessment reportwhich is incrediblyconcerning.These w ill informa participant’ sbudgetbutnodetailabouthowthiswil happen has beenreleased.Then the only opportunity of reviewfortheirbudgetisan againvia anotherSupportNeedsAssessment. Thiscreates concernaroundhighlystandardisedassesmentapproaches,reduced clinical discretionpotentialreliance onactuarialorbenchmark-stylemodelsand increaseduse o

National Disability Insurance Scheme Amendment

Submission 2116

Regarding the bill significantly restricting rights during re-assessment processes but:

• Extending decision timelines from 21 days to 90. A plan often needs reassessing under crisis conditions involving significant participant decline, carer breakdowns, escalating concerns behaviors, equipment failures, or housing instability.* The extended period leaves participants unsupported over this duration,* leading* to increased risks for these individuals,** potentially causing greater caregiver burnout**, increases in restrictive practices*, along with heightened safeguarding issues*. There’s been an authority transfer regarding pricing decisions effective since July (\textbf{07/}26). This shift raises concern due to distrust within such authorities.“”“

PARENTAL RESPONSIBILITY

We already understand that parents & primary caregivers save Australia $$77.9 billion annually through disability support services provided. I collaborate closely w/ much-exhausted-and-burnt-out parents who face numerous challenges including transport, supervision emotional support behavior management prompting routine tasks assistance daily living activities etc., which are vastly different in intensity frequency complexity and sustainability compared t/o what is typically expected of a child at similar age. Many times I’ve observed situations where parents must redirect their son privately multiple times per hour (up 20) while being hit scratched or even ejaculated on during masturbation episodes; other children may continuously inappropriate touch siblings with disabilities without intervention from the mother herself.

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 2116

much more cost efficient to provide comprehensive sexuality and relationship education well when a child is at their peak learning period e.g., school. Unfortunately it doesn’t happen often; adults lack awareness on body functions puberty limited safety skills which leaves them susceptible sexual assault leading trauma etc. My lived experience: nine years ago life changed because Mitochondrial Inherited Deafness Diabetes MIDD impacted daily work family profoundly tried resilience past two pushed breaking point. on May/5/24 submitted Access Request NDLS hoped receive needed continue living dignity choice control believed scheme would help stay connected community maintain work preserve quality instead deeply distressing lack support constant delays overwhelming red tape exhausted burnt out feeling invisible system designed protect vulnerable people As woman with disability barriers facing not just administrative gendered women disproportionately care systems emotional practical load navigating services managing work, responsibilities social expectations placed consequences compound financial insecurity increases harder keep safe vulnerability grows failures do fall evenly particularly women disabilities absorb impact silence reaching turn hearing aids essential my work safety ability participate everyday about expire almost two waiting received contribution replacements plan review until March/3/26 leaving me limbo risk losing communicate effectively maintaining employment engaged in community hope you have deep understanding issue effects myself other women making us more vulnerable want share story others hard of deaf quietly struggling without support hope may advocate fair timely support participants being left behind”

National Disability Insurance Scheme Amendment (Securing the NDIS for Future Generations) Bill 2026

Submission 2116

The above information was sent to Mark Butler’s office - minister for Health, Disability and NDIS. Within 10 days the decision was overturned, and I was funded $6,500 for hearing aids. I was sent an apology for the delays and poor administration of the scheme. Applying for the NDIS as an intelligent, aricate and NDIS savvy professional nearly broke me.This came at cost fatigue burnout mental health deterioration But ask what chance does someone complex needs communication needs profound multiple disabilities must advocate themselves.

I have grave fears in participant going forward see these new changes sucking any remaining choice control out people disabilties their families will consequently burnout lack appropriate much needed support years experience caring professionals walk away supporting people with disabilities This still leaves holes fraudsters exploiting our most vulnerable unfortunately if this passes current form it exploitation itself. Reforms that destabilise private allied health workforce will funding contribute attrition reduce access experienced clinicians The NDIS effective when provided timely practical flexible participants core choice control changed lives making life worth living Balanced reform should protect sustainability long term developmental needs social economic participation quality original designed support please you thoughtfully consider impact lives because we all only accident from having disability Kind Regards Melanie Guiney