Thalidomide Survivors Snapshot

SGP KP Publishing Exported on 2026-06-17 Page 311 outof 334

Table of Contents

• About Thalidomide … page number (not provided)
• The impact of Thalidomide … page number (not provided)
• Common barriers to social and economic participation … page number (not provided)
• Common language and terminology … page number (not provided)
• Engaging with families and carers … page number (not provided)
• What specific supports might a Thalidomide Survivor need? … page number (not provided)
• How can I tailor a meeting with a Thalidomide survivor? … page number (not provided)
• Helpful links for further information … page number (not provided)

FOI 25/26-3216

SGP KP Publishing - Thalidomide Survivors Snapshot

This document contains information relevant specifically within the context provided.

It serves as an overview aimed at providing basic details regarding Thalidomide Survivors exclusively meant for use in internal communications among personnel from both NDIA (National Disability Insurance Administration) staff members along with their partners; it is not intended or suitable for external dissemination purposes outside these specified groups’ scope due primarily because each individual survivor has experienced unique impacts and will possess distinct needs that must be considered throughout any planning processes involving them.

FOI 25/26-3216

SGP KP Publishing - Thalidomide Survivors Snapshot

About Thalidomide

Thalidomide was the active ingredient most commonly associated with the medication ’Distaval’and was marketed to pregnant women in the late 1950s and early 1960s, to ease symptoms of morning sickness. Though pregnant mothers had no way of knowing the effects of Thalidomide, taking just one tablet during the first trimester could cause malformation of limbs, facial features and significant internal injuries to babies. Today those adults living with Thalidomide disabilities are aged mid-to-late fifties They identify as Thalidomide survivors.

The impact of Thalidomide

The main deformities caused by Thalidomide included:

• Quadruple absence/deformities/shortness of both upper and lower limbs.
• Absence or hypoplasia - underdevelopment or incomplete development of arms preferentially affecting the radius and thumb.
• Thumbs with three joints or no fingers at all.
• Defects of femur and tibia.
• Defects in muscles around eyes face.
• Deafness due to absent auricles visible part ear.
• Malformation heart bowel uterus digestive tract gallbladder; spine defects also possible.

SGP KP Publishing - Thalidomide Survivors Snapshot

#Common barriers to social and economic participation

Common language and terminology

| Don’t say | Instead say | Here’s why | |-|-| | Thalidomide victim | Thalidomide survivor | Those with resulting disabilities have actively resolved ‘live’ despite significant impairments. | “You’re a Thalidomide baby!” | You’re a Thalidomide survivor.| Today those adults living with Thalidomide disabilities are aged in their mid-to-late fifties.

#5 Engaging with families and carers The families of Thalidomide Survivors, particularly survivors’ parents, spouses and children, live with the effects of what Thalidomide did to the person they love. Parents of Thalidomide Survivors experienced trauma, guilt, and life-changing carer responsibilities. The spouses and children of survivors have missed life opportunities and continue to make considerable personal commitments as they provide care and support to their loved one. Carers may need support and relief; in particular, to take a break from time-to-time to sustain their own wellbeing; their relationships with other family members and friends ;and their capacity to continue caring .Taking off can reduce carers’ stress and give them an opportunity to recharge batteries.It also assists participants.

#6 What specific supports might a Thalidomide Surivor need? Each Thalidomide Survivor is different and the reasonable and necessary funding in their plan will reflect their functional impairment and the support they need to achieve their goals. A range of supports might be considered in determining how best to support Thalidomide Survivors into the future, including:

• Assistive technology •Home help - assistance with everyday needs, household cleaning ond/yard maintenance. •Social interactions • Home modifications •Vehicle modifications •Physiotherapists and/or Occupational Therapists •Clothing alterations specifictothe disabilityneeds •Transport; or •Supports that resultinabreakforcarers.

#7 How can I tailor a meeting with a Thalidomide survivor?

Most Australian Thalidomide Survivors have remained active members in their local communities and many have not sought disability support services or government payments. Ensure you talk through what mainstream community and government services and programs might be available — ‘you don’t know what you don’t know!’

Many Thalidomide Survivors will require a table for writing and a drink at a meeting.

Some Thalidomide Survivors are no longer able to take physical notes during a meeting. Ensure notes are made available at the conclusion of meetings. Consider also general preparation, prior to the meeting, during the meeting and at the conclusion of the meeting.

FOI 25/26-3216

SGP KP Publishing - Thalidomide Survivors Snapshot

Helpul Links For Further Information

• Thalidomide Group Australia
• The Thalidomide Trust UK