FOI 24/25-0233 DOCUMENT 12
The content of this document is OFFICIAL. Ehlers Danlos Syndrome
AA OneNote> Access Decision Support> Ehlers Danlos Syndrome
The Technical Advisory Branch has provided SEB with advice to assist in making decisions where the person is living with Ehlers Danlos Syndrome.
TAB has also confirmed that Ehlers Danlos Syndrome is no longer requires mandatory TAT advice.
When determining whether impairment of Ehlers Danlos Syndrome meets the access criteria, the delegate should have evidence that demonstrates:
Section 24(1)(a) – Likely met if they have a reduction in function (disability) as this would be attributed to a physical impairment
Section 24(1)(b) – Whilst Ehlers Danlos Syndrome would be considered a permanent condition, we need to determine that the physical impairment is permanent, or likely permanent. To satisfy this criteria, the delegate needs evidence:
• That the applicant has engaged in physiotherapy to strengthen the muscles – physio may be an ongoing intervention for maintenance, but the delegate needs to be satisfied that the initial gains with physiotherapy have been made, and any ongoing physio is for maintenance and not to remedy the impairment. This would then be considered likely permanent in line with Section 5.6 of the NDIS (Becoming a Participant) Rules 2016 (i.e. an impairment can continue to be treated after permanency has been established). If there is no evidence of the person engaging in physiotherapy, and there are red flags in Section 24(1)(c), the delegate should request further information to confirm if this has been undertaken. If there are no red flags in Section 24(1)(c), a decision can be made as they would not meet future criteria
• If there are aids or equipment recommended (i.e. orthotics, back braces, AFOs etc.), the evidence needs to demonstrate if these will be a lifetime requirement, or if they are just to strengthen or stabilise that joint. If they are to strengthen and stabilise the joint and the equipment is only required for this duration and after this they will no longer have a physical impairment, then the impairment would not be considered permanent. If it is to strengthen to a point, but will still be required, then it would be considered a likely permanent impairment
• If there is pain associated with EDS and this is causing functional impact, evidence needs to demonstrate that the applicant has engaged in treatment from a pain clinic. The reason for this is because the delegate needs to determine if the applicant has a physical impairment regardless of the pain.
Section 24(1)(c) – As with other impairments, the same guidelines apply when determining if someone has a substantial reduction in functional capacity. Please review the evidence to ensure the substantial reduction is across the majority of one or more domains.
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FOI 24/25-0233
Section 24(1)(d) – As with other impairments, the same guidelines apply. This criteria is generally met as social and economic participation merely has to be affected.
Section 24(1)(e) – If it has been determined that the applicant has a permanent impairment, that results in a substantial reduction in functional capacity and there are no capacity building supports recommended which may mean in the future they will not require NDIS supports, then this criteria would be considered met.
When it comes to Early Intervention:
Section 25(1)(a) – Refer to guidance above for Section 24(1)(a) and (b) – noting that for EI the applicant does not need to have a disability – only a likely permanent impairment.
Section 25(1)(b) – If there are capacity building support recommended that could reduce (or prolong) the applicant’s need for future disability related supports then this criteria would be considered met
Section 25(1)(c) – If there are recommendations that would result in functional improvement, or to prevent deterioration or improve sustainability of informal supports then this criteria would be considered met
Section 25(3) – If the recommended supports are in relation to the applicants disability, they are capacity building in nature and are the responsibility of NDIS and not another service system then this criteria would be considered met.
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