Key Points

  • Ehlers-Danlos syndrome NDIS applications require substantial functional evidence because EDS is not on the automatic access list; functional capacity assessments, specialist reports, and documentation that mainstream supports are insufficient are all needed
  • Physiotherapy for EDS must focus on active joint stabilisation through muscle strengthening; passive treatments including stretching, massage, and spinal manipulation can worsen hypermobility and are contraindicated
  • Hypermobile EDS (hEDS) has a diagnostic journey averaging 10 to 12 years internationally; Ehlers-Danlos Australia and CTDNA maintain directories of EDS-aware practitioners
  • POTS (Postural Orthostatic Tachycardia Syndrome) is common in hypermobile EDS and significantly affects daily functioning; its impact should be documented separately in NDIS applications
  • An OT assesses how joint instability, pain, and fatigue affect daily living and prescribes joint protection strategies, assistive equipment, and pacing programs
  • Joint protection principles (avoiding end-range positions, assistive equipment, pacing, bracing) are the practical daily living tools that reduce injury risk and energy expenditure in EDS

What Is Ehlers-Danlos Syndrome?

Ehlers-Danlos syndrome is a group of inherited connective tissue disorders caused by defects in collagen structure, synthesis, or processing. Collagen is the structural protein that provides strength and elasticity to skin, joints, blood vessels, and internal organs. When collagen is defective, these tissues become fragile, lax, and prone to injury.

There are 13 subtypes of EDS, each caused by different genetic mutations and affecting different body systems. The most common subtype, hypermobile EDS (hEDS), accounts for the majority of cases and is the form most associated with chronic widespread pain, joint instability, and fatigue.

EDS affects women more commonly than men, though the reasons are not fully understood. In Australia, the average diagnostic journey is over a decade, reflecting limited awareness among general practitioners and the absence of a diagnostic blood test for the most common form.

NDIS Access for EDS

EDS is not on the NDIS’s automatic access list (List A), meaning eligibility requires a formal functional assessment and documentation process rather than a confirmed diagnosis alone.

To access NDIS with EDS, the application must demonstrate:

  1. Permanence: EDS is a lifelong genetic condition; permanence is generally accepted once confirmed by a rheumatologist or geneticist
  2. Significant functional limitation: The condition must substantially affect at least one functional domain
  3. Insufficient mainstream supports: Standard Medicare supports (GP, five allied health sessions per year) are not meeting the person’s support needs

Supporting evidence for an EDS NDIS application includes:

  • Specialist report (rheumatologist or geneticist) confirming diagnosis
  • Functional capacity assessment by an OT documenting task-by-task limitations
  • Physiotherapy report documenting functional restrictions
  • Documentation of what mainstream and private supports have been accessed and why they are insufficient
  • Where relevant, additional specialist reports for comorbidities (POTS, mast cell activation syndrome, autonomic dysfunction)

Ehlers-Danlos Australia provides guidance on NDIS applications and can assist members with the process.

The EDS Provider Team

Rheumatologist

A rheumatologist with connective tissue disorder experience is typically the diagnosing and coordinating specialist for EDS. They confirm the diagnosis (particularly for hEDS using the 2017 International Classification criteria), manage joint and pain complications, and provide reports for NDIS applications.

Finding a rheumatologist with EDS-specific experience is important; not all rheumatologists have seen significant numbers of EDS patients and the clinical presentations can be unfamiliar. Ehlers-Danlos Australia and CTDNA maintain specialist directories.

Physiotherapist with EDS or Hypermobility Experience

Physiotherapy is the cornerstone of EDS management for joint stability, but the approach must be specifically adapted for hypermobility. Standard physiotherapy protocols that involve stretching and passive treatment can worsen EDS.

Evidence-supported physiotherapy for EDS includes:

  • Active stabilisation: Strengthening the muscles around hypermobile joints to provide active support, particularly the deep stabilising muscles (rotator cuff, hip external rotators, spinal multifidus, transverse abdominis)
  • Proprioception training: Exercises that improve joint position sense, which is commonly impaired in EDS and contributes to injury risk
  • Functional movement retraining: Correcting movement patterns that place joints in end-range hypermobile positions
  • Graduated loading: Starting with very low resistance and increasing slowly, as connective tissue integrity affects load tolerance

Therapists should not apply vigorous mobilisation or manipulation to hypermobile joints, as this can cause injury.

Occupational Therapist

An OT with EDS or chronic pain experience addresses the functional impact of joint instability, pain, and fatigue on daily living. Their work covers:

  • Home assessment: Identifying activity patterns and home layouts that increase joint stress
  • Joint protection strategies: Teaching safe ways to perform daily tasks that reduce joint load (avoid jar lids, use a trolley not a bag, sit to prepare food)
  • Assistive equipment prescription: Writing aids (to reduce grip force), jar openers, wheeled trolleys, perching stools, braces
  • Pacing and fatigue management: Building activity schedules that prevent boom-bust cycles
  • Workplace ergonomics: Assessment of desk, keyboard, and workstation setup

Pain Psychologist

EDS involves persistent, often severe chronic pain. A pain psychologist helps the person manage the psychological dimensions of living with unpredictable, fluctuating pain that is unlikely to be eliminated.

ACT (Acceptance and Commitment Therapy) is particularly well suited to EDS because it focuses on psychological flexibility and values-based activity engagement despite persistent pain, rather than pain reduction as the primary goal.

Medicare funds up to 10 sessions per year via a GP Mental Health Care Plan. NDIS may fund psychology as Capacity Building where therapeutic goals connect to functional NDIS goals.

Cardiologist or Autonomic Specialist (for POTS)

POTS is present in a significant proportion of people with hypermobile EDS. It causes dizziness, palpitations, and presyncope (near-fainting) on standing, which significantly limits daily activity including housework, cooking, and community access.

POTS management includes: increased fluid and sodium intake, compression garments, head-up tilt training, and medications (beta-blockers, fludrocortisone, midodrine in some cases). A cardiologist or neurologist with dysautonomia experience manages POTS.

Joint Protection in Daily Life

Joint protection is a daily practice for people with EDS, not an occasional concern. It involves making consistent choices about how to move and use the body to reduce the risk of subluxations (partial dislocations), full dislocations, and soft tissue injury.

Practical Joint Protection Principles

Use the largest joint possible: Carry shopping bags over the forearm or shoulder rather than in the fingers. Lift with the whole hand, not two or three fingers.

Avoid end-range positions: Do not extend joints to their full hypermobile range under load. Keep working within a mid-range that the muscles can actively support.

Brace during high-demand activity: Wrist splints, knee sleeves, and ankle supports reduce joint stress during demanding tasks. An OT prescribes appropriate bracing based on individual joint instability patterns.

Sit when possible: Reducing standing time decreases the postural load on lower limb and spinal joints, particularly important for people with POTS.

Rest between activities: Brief rest breaks during tasks prevent cumulative joint stress and fatigue.

Finding EDS-Aware Providers

Finding providers with EDS experience requires targeted searching. Not all physiotherapists, OTs, or GPs are familiar with hypermobility disorders, and seeing a practitioner who applies standard protocols can result in worsening rather than improvement.

Directories:

  • Ehlers-Danlos Australia specialist directory (available to members)
  • Connective Tissue Disorders Network Australia (CTDNA) practitioner list
  • Hypermobility Connect (online community with provider recommendations)

Questions to ask potential providers:

  • Have you worked with patients with hypermobile EDS or other connective tissue disorders before?
  • What is your approach to physiotherapy for hypermobility? (If they primarily suggest stretching, this is a concern)
  • Are you familiar with POTS and its functional impacts?
  • Do you work collaboratively with other members of the person’s care team?

Key Resources

Connecting with EDS Providers

Carevo connects people with Ehlers-Danlos syndrome to physiotherapists, occupational therapists, pain psychologists, and NDIS-registered providers with connective tissue disorder experience across Australia.

Find an EDS provider through Carevo