Are individuals with Ehlers-Danlos Syndrome (EDS) eligible for support through the National Disability Insurance Scheme (NDIS)?

From the Guidelines

Individuals with Ehlers-Danlos Syndrome (EDS) are eligible for support through the National Disability Insurance Scheme (NDIS) if their condition causes substantial functional impairment that is likely to be permanent. The NDIS determines eligibility on a case-by-case basis, considering how significantly the condition impacts daily functioning 1. To qualify, a person with EDS must demonstrate that their condition causes substantial functional impairment that is likely to be permanent, which can be supported by evidence from healthcare professionals documenting the diagnosis and functional impacts of EDS. Some key points to consider when applying for NDIS support with EDS include:

• The severity of EDS varies widely between individuals, so some people with milder symptoms may not meet the disability requirements, while those with more severe manifestations that significantly impact their ability to perform everyday tasks would have a stronger case for eligibility.
• The condition can include joint hypermobility, chronic pain, fatigue, dislocations, and other complications that affect mobility, self-care, and participation in daily activities, as seen in patients with hypermobile Ehlers-Danlos syndrome (hEDS) and Hypermobile Spectrum Disorders (HSD) 1.
• When applying, it's essential to focus on how EDS affects functionality rather than just having the diagnosis, providing comprehensive medical documentation that clearly outlines these impacts and their permanence.
• Patients with hEDS and HSD often experience a range of gut disorders, autonomic dysregulation, and chronic urinary retention, which can further impact their quality of life and eligibility for NDIS support 1.

From the Research

NDIS Eligibility for Individuals with EDS

• The National Disability Insurance Scheme (NDIS) provides support to individuals with permanent and significant disabilities, including those with Ehlers-Danlos Syndrome (EDS) 2, 3.
• To be eligible for NDIS support, individuals with EDS must meet the scheme's eligibility criteria, which includes having a permanent and significant disability that affects their daily life 4, 5.
• The NDIS considers EDS a disability that can cause significant impairment in daily life, particularly in terms of pain management, mobility, and daily functioning 6.

Support Services for Individuals with EDS

• The NDIS provides a range of support services to individuals with EDS, including:
  • Physical therapy to manage pain and improve mobility 2, 4, 5
  • Occupational therapy to improve daily functioning and independence 2, 4
  • Pain management services to help individuals manage chronic pain 3, 6
  • Assistive technology, such as braces and orthotics, to improve mobility and daily functioning 4, 5

Assessment and Planning

• To access NDIS support, individuals with EDS must undergo an assessment and planning process to determine their eligibility and support needs 4, 5.
• The assessment process involves gathering information about the individual's disability, including their medical history, functional capacity, and support needs 6.
• The planning process involves developing a personalized plan that outlines the individual's goals, support needs, and funding allocation 4, 5.