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Info for NDIS Planners And Coordinators

Huntington’s WA NDIS Services

Founded in 1974, Huntington's WA is the leading community services organisation dedicated to enabling the best possible quality of life for people with Huntington's Disease, their families and carers in Western Australia, through advocacy, support and education.

With qualifications in Social Work, Mental Health Nursing and Counselling our HD Specialised Practitioners have a depth of expertise in Huntington’s Disease. We understand the unique challenges our community face and provide a holistic approach to care, providing support for the person with Huntington’s, their carers, family members and friends.

To increase the availability and range of services to our clients, Huntington’s WA is now an NDIS Service Provider.

NDIS Services we offer

Huntington’s WA provides services specifically to those in the community impacted by Huntington’s Disease drawing on the skills, depth of expertise and knowledge of our multidisciplinary team.

The services we provide include:

  • Specialised Support Coordination Item 07_004_0132_8_3
  • Support Coordination Item 07_002_0106_8_3
  • Training Item 15_056_0128_1_3
  • Counselling Item 15_043_0128_1_3 

Support/Specialised Support Coordination

All HD clients are expected to need, and benefit from, Coordination of Supports due to the unique nature of HD and the lack of awareness of HD amongst service providers. However, as the disease progresses, clients are likely to need Specialist Support Coordination from time-to-time to assist periods of complex transition in their needs. As specialists in supporting HD clients, we will be best placed to deal with these times of complexity and will be able to provide both levels of co-ordination with the least disruption and the greatest efficiency for the client.

Direct service–Perth and surrounds

We will provide the service to participants resident in the Perth metropolitan area and adjacent areas (such as Peel and the Southwest), limited by the need to be able to reach clients within a 

day’s return travel. Where participants live beyond the direct reach of our service, we will develop partnerships with local providers of Support Coordination to increase their capacity to provide a satisfactory service.



Training is tailored to encompass specific participant needs and can be provided to NDIS Care and support staff to improve their knowledge of Huntington’s Disease and the direct impact that this has on the individual’s care needs. By including Training in the plan, regular training sessions can be provided to cover changes in Care Staff as well as accommodating the changes that occur at varying stages of degeneration as HD progresses. The degenerative nature of the disease has widely ranging impacts on the individual that may include cognitive impairment, emotional and behavioural changes, physical decline, dysphagia and loss of the ability to communicate. Training ensures that Care staff are supported to provide the best possible care, and to maintain the dignity and wellbeing of the participant.

Training is also available to Organisations wishing to increase the skills and knowledge of their team of allied health professionals. Please contact our office to discuss your requirements and associated costs.


Our Specialised HD Practitioners develop long standing relationships with HD community members offering a lifespan approach as outlined in the “Living well with Huntington’s Disease Community of Practice Framework”. 

Their ongoing 1:1 support builds rapport and trust, and enables participants to be open to discussions around their ongoing concerns in relation to the progression of HD, navigating the physical and mental challenges, looking at the disease trajectory and end of life issues. Counselling sessions also allow space and time to explore their feelings, not only about their own health but also allows them to discuss any concerns about family members who are also greatly impacted by HD.

Counselling may include:

  • Developing and improving relationships with friends, loved ones, school, work and community. Finding direction in life, setting and achieving goals.
  • Learning new life skills. Understanding self and other people. Having a place where they can talk honestly about life and experiences without being judged.
  • Helping to find answers and make difficult decisions. 
  • Helping to change/manage behaviours
  • Improving mental health and wellbeing. 
  • Exploring and improving intimate relationships.

Including Counselling in a Participants’ plan has been shown to build resilience, reduce anxiety and allow the participant and their family to explore their HD journey with a Counsellor that has many years of hands-on experience with HD.

Huntington’s WA is committed to continuing to work with participants and their family to provide support, advocacy and education and to ensure people with HD can maintain their best possible quality of life.

We look forward to working collaboratively with NDIS Planners and Allied health professionals to support community members with HD to manage the extraordinary challenges they face.

Please take the opportunity to discuss participants needs with our NDIS Coordinator by emailing