The use and experience of the national disability insurance scheme for Australians with skeletal dysplasia: A mixed-methods study

Share The use and experience of the national disability insurance scheme for Australians with skeletal dysplasia: A mixed-methods study on Facebook Share The use and experience of the national disability insurance scheme for Australians with skeletal dysplasia: A mixed-methods study on X (formerly Twitter) Share The use and experience of the national disability insurance scheme for Australians with skeletal dysplasia: A mixed-methods study on Linkedin Email The use and experience of the national disability insurance scheme for Australians with skeletal dysplasia: A mixed-methods study link

First published online 05 March 2025.

Why this study was done

Skeletal dysplasia’s are a group of rare conditions that affect bone growth and development. Many people with skeletal dysplasia need support to complete everyday activities, access equipment, or participate fully in work, education, and community life. This study explored how Australians with skeletal dysplasia use and experience the NDIS. Researchers wanted to understand whether people were able to access the support they needed and what challenges they faced.

What the study did

The researchers used surveys, functional assessments, and interviews with people who have skeletal dysplasia and their families. They examined both the practical need for support and participants' experiences of applying for and using NDIS funding.

What the study found

The study found that all participants required some form of assistance, support, or adaptive equipment to carry out daily activities. However, experiences with the NDIS varied greatly.

Participants reported:

  • Difficult and complicated application processes.
  • Challenges in explaining their support needs to NDIS decision-makers.
  • Inconsistent decisions and outcomes between applicants.
  • Positive impacts when funding was approved, including improved independence, access to equipment, therapies, and community participation.
  • Stress, frustration, and financial burden when applications were rejected, or supports were reduced.

Three major themes emerged:

  1. Consistent process-related barriers – difficulties with paperwork, eligibility requirements, and navigating the system.
  2. Inconsistent person-related facilitators – outcomes often depended on the knowledge and understanding of individual staff members.
  3. The impact of the NDIS – successful access to funding could significantly improve quality of life and independence.

What this means

The study highlights that people with skeletal dysplasia often have genuine support needs, but access to the NDIS can be uneven and difficult. The researchers suggest that a better understanding of skeletal dysplasia among NDIS staff, planners, and healthcare professionals could help ensure more equitable access to supports. They also recommend ongoing evaluation of NDIS eligibility processes so that people who need support are not unfairly excluded.

People with skeletal dysplasia often benefit greatly from NDIS-funded supports, but many experience significant barriers in accessing the scheme. Improving disability-specific knowledge and making processes more consistent could lead to fairer and more effective support for this community.

This study was conducted by: Mr. Jun Hei Jeremy Lai, Dr. Penelope Irland, Ms. Daphne Nguyen, Ms. Ashley Woodbury and Professor Verity Pacey

To read the full article, visit the journal.

For other accessible formats, please see the column to the right.

Disclaimer: The QDRN has utilised generative AI to refine the wording of this plain language summary. All content has been checked for accuracy, appropriate tone, and clarity and approved by the author.

First published online 05 March 2025.

Why this study was done

Skeletal dysplasia’s are a group of rare conditions that affect bone growth and development. Many people with skeletal dysplasia need support to complete everyday activities, access equipment, or participate fully in work, education, and community life. This study explored how Australians with skeletal dysplasia use and experience the NDIS. Researchers wanted to understand whether people were able to access the support they needed and what challenges they faced.

What the study did

The researchers used surveys, functional assessments, and interviews with people who have skeletal dysplasia and their families. They examined both the practical need for support and participants' experiences of applying for and using NDIS funding.

What the study found

The study found that all participants required some form of assistance, support, or adaptive equipment to carry out daily activities. However, experiences with the NDIS varied greatly.

Participants reported:

  • Difficult and complicated application processes.
  • Challenges in explaining their support needs to NDIS decision-makers.
  • Inconsistent decisions and outcomes between applicants.
  • Positive impacts when funding was approved, including improved independence, access to equipment, therapies, and community participation.
  • Stress, frustration, and financial burden when applications were rejected, or supports were reduced.

Three major themes emerged:

  1. Consistent process-related barriers – difficulties with paperwork, eligibility requirements, and navigating the system.
  2. Inconsistent person-related facilitators – outcomes often depended on the knowledge and understanding of individual staff members.
  3. The impact of the NDIS – successful access to funding could significantly improve quality of life and independence.

What this means

The study highlights that people with skeletal dysplasia often have genuine support needs, but access to the NDIS can be uneven and difficult. The researchers suggest that a better understanding of skeletal dysplasia among NDIS staff, planners, and healthcare professionals could help ensure more equitable access to supports. They also recommend ongoing evaluation of NDIS eligibility processes so that people who need support are not unfairly excluded.

People with skeletal dysplasia often benefit greatly from NDIS-funded supports, but many experience significant barriers in accessing the scheme. Improving disability-specific knowledge and making processes more consistent could lead to fairer and more effective support for this community.

This study was conducted by: Mr. Jun Hei Jeremy Lai, Dr. Penelope Irland, Ms. Daphne Nguyen, Ms. Ashley Woodbury and Professor Verity Pacey

To read the full article, visit the journal.

For other accessible formats, please see the column to the right.

Disclaimer: The QDRN has utilised generative AI to refine the wording of this plain language summary. All content has been checked for accuracy, appropriate tone, and clarity and approved by the author.