People living with Pendred Syndrome have different experiences and priorities. This resource explains the condition, ways it can influence everyday life, the historical NDIS recognition of the diagnosis and practical supports that may be relevant. It is written for Australian participants, families and support coordinators.

Understanding Pendred Syndrome

Pendred syndrome is an inherited condition that typically causes hearing loss, sometimes alongside balance problems and an enlarged thyroid gland (goitre). Hearing loss may be present from birth or develop during early childhood. Some people have an enlarged vestibular aqueduct in the inner ear. The thyroid features require healthcare review and should not be confused with disability support needs.

Diagnosis is only one part of the story. Understanding a person's strengths, communication choices, daily routines and support goals is essential when arranging services.

Symptoms and possible functional impacts

The following features can occur. Their frequency and severity vary, and only a suitably qualified professional can assess an individual's medical condition.

• Sensorineural hearing loss that may be severe or profound
• Communication and listening challenges in some environments
• Possible balance and orientation difficulties
• Variable benefits from hearing devices or communication systems
• Possible thyroid enlargement requiring medical assessment
• Individual preferences for speech, signing, captions or other accessible formats

How Pendred Syndrome may affect daily living

Someone might need Auslan-accessible information, captioned appointments, support learning independent travel or assistance participating in community activities. A hearing diagnosis cannot indicate the person's preferred language.

Functional impacts can be explored in communication, learning, mobility, social interaction, self-care and self-management. Ask which tasks a person does independently, which benefit from prompts or accessible information, and which require disability-related physical assistance, supervision or equipment.

Practical strategies that respect choice

• Ask about preferred communication and whether Auslan, captions, text or assistive listening devices are helpful.
• Do not assume lip-reading is sufficient for communication.
• Review balance and mobility impacts where relevant.
• Keep thyroid monitoring and other clinical treatment with the treating team.

Choose supports together with the person. When healthcare issues are involved, providers must follow clinical instructions and ensure staff have the appropriate competencies for their roles.

Does Pendred Syndrome qualify for the NDIS?

Pendred syndrome is named in the published NDIS List B of conditions likely to involve permanent impairment, under disorders resulting in hearing loss. It does not guarantee eligibility without consideration of a person's actual hearing and functional impacts.

In Australia, NDIS access involves age, residency and either disability or early intervention requirements. Disability requirements consider permanent or likely permanent impairment, substantial functional impact, effects on participation and likely lifelong need for NDIS supports. The disability's name cannot replace an assessment of the person's circumstances.

The 2024 NDIS condition appendices list conditions likely to meet disability requirements (List A), conditions likely to involve permanent impairment (List B), and certain early intervention situations (List D). These are not comprehensive catalogues of all eligible diagnoses. For current requirements refer to the NDIS eligibility guide.

Evidence to consider for an application

Evidence should explain how an impairment affects everyday tasks and why the person needs disability supports. Depending on the individual, useful material may include:

1. Diagnostic evidence from an appropriately qualified medical or allied health professional.
2. Functional assessments explaining lasting limitations in mobility, communication, learning, self-care or self-management.
3. Specific examples of where the person needs physical help, guidance, supervision, equipment or environmental adjustments.
4. Evidence of available and appropriate treatments considered and any permanent impairment remaining.
5. Personal goals and how disability affects participation in work, education and community life.

Use concrete examples rather than general statements; describe what actually happens during daily routines and how needs may change over time.

NDIS supports that may be relevant

Depending on approved funding and individual goals, suitable supports may include personal care, assistance with community participation, capacity building, occupational therapy, speech pathology, physiotherapy, assistive technology and support coordination. Each support must be a permitted NDIS support linked to the participant's funded disability-related needs.

Routine medical care, diagnosis, medicines, surgeries and disease treatments are principally the responsibility of the health system. Some disability-related health supports can be funded where specific rules are met, with proper clinical oversight and worker training.

How Beyond Health Services can help

Beyond Health Services takes a person-centred approach to discussing disability services. We can explore support workers, everyday living assistance, community access, relevant therapy and nursing supports, and support coordination. We listen to the participant and their chosen representatives, clarify practical tasks and goals, and consider appropriate worker skills and communication methods.

Once support requirements and relevant funding are understood, we can explain the individual referral and service arrangement process.