Youth Connection Program

Does your mum, dad, or do you or someone you know have Huntington’s disease (HD)? Do you ever feel sad, worried or confused about HD? Do you want to know more about HD? Does HD ever make things harder for you at school or home? Are you a parent or carer and not sure how to talk to your kids about HD? Huntington’s NSW ACT Youth Connection Program can help.

Our youth worker can visit you at home or at school and talk to you about HD and other things that are hard in your life. We can help you understand HD a bit more and answer all of your questions. We can invite you to our group events so you can meet other people your age going through similar things. We can talk to your mum, dad, school or carers so they can understand how HD might be impacting you and find new ways to help. If you are a parent or carer we can talk with you and help you find ways to speak about HD to your kids.

Please contact Amy, our youth social worker on 9874 9777 or email for more information and support.

What do we set out to do?

The overarching goal for Huntington’s NSW ACT Youth Connection Program is to build resilience in and empower children and families in our Huntington’s community. This will enhance their psychological and emotional wellbeing and improve their quality of life in these difficult and unique circumstances. 

What have we done so far and how have we achieved this?

Just over halfway through the 2019 project, Huntington’s NSW ACT’s Youth Connection Program was on track to meet all project goals.

In 2019, the funding from St George Foundation has allowed us:

  • to conduct 36 individual child/young person counselling sessions
  • 60 opportunities to educate families, kids and professionals in our community about Huntington’s disease
  • to carry out 23 counselling sessions with parents; educating and enabling them to best understand Huntington’s disease and support their children
  • to conduct 1 group activity for kids affected by Huntington’s
  • facilitate 11 school staff information sessions. 

Our youth social worker has been out in the community conducting these face-to-face engagements with our young people and their families. Each week a number of visits are made in homes, in schools and in the community.

Our collaboration with schools has been an essential part in the success of this project as it has allowed us to connect with kids and young people in a safe, structured environment away for their homes. It has allowed these kids the space to talk about, draw and express the experiences and challenges of living in a family affected by Huntington’s.

Over the course of the year, our youth social worker has been able to build therapeutic relationships with these kids and provide them with some basic psychology and language to increase their understanding of what is going on for them emotionally. They are then provided with a range of up-to-date psychological strategies to help them cope with their difficult situations. These strategies are practiced with our youth social worker in a role play environment to increase familiarity with these tools.

In addition to this, they are provided with emotional and practical ‘safety plans’ to follow when things at home escalate. For our rural clients, educational material has been sent to them and discussions over the phone with parents, counsellors and school staff have followed. 

What difference do we make? How do we know this?

As professionals in this field, we see the difference our project makes every day. We see the changes that our interventions provide in these individuals; their improved psychological wellbeing. Kids telling us they have gone home and used what they have learned to lessen their anxiety around what is happening for them; practicing and using the techniques they have learned in their counselling sessions. We see the huge emotional weight slowly begin to dissipate for parents over the course of our sessions as they begin to work out, with our support, how to discuss Huntington’s as a family. We see the ‘ah-ha’ moments in school staff when they reach new levels of understanding around what is being faced by their students in living in a family affected by Huntington’s disease; we see school staff start to think about how to make changes in how they work with these kids, bringing a new level of empathy and understanding to their interactions.

We understand however that the measures that are so obvious to us are incredibly difficult to quantify. For this reason, we rely heavily on current Huntington’s specific research to inform our goals and outcomes. We have reviewed some new research [i]  that highlights exactly why this specific project needs to continue. This Australian study identified 134 young people and concluded that:

  1. Most research participants (85.5%) agreed that it is important to have targeted support and ongoing follow up for people at risk. Additionally, almost all (90.9%) participants believe that it would help them to have contact with professional services regarding being at risk [of Huntington’s disease]; over half (n = 46/77, 59.7%) saying it would help ‘a large amount’.’ [ii]
  2. ‘Despite the need and desire for support, there appears to be a lack of appropriate services available to young people in relation to managing life as a carer and living at risk of Huntington’s. Almost all young people in this study agreed that it is important for young people who have an Affected Family Member to have access to support services for themselves in order to reduce carer burden and to have targeted professional support and ongoing follow up for young people at risk of Huntington’s.’ [iii]

We are currently liaising with the academic authors of this paper in order to dive further into understanding the nuances within our unique community.

What's next?

The importance of our project can be best explained through understanding the unique nature of Huntington’s disease and the specific set of circumstances this creates. Kids in homes with Huntington’s affected parents have such a specific set of challenges to face. For this reason, mainstream mental health, youth counselling and other support services are not equipped to meet the emotional needs of these kids and young people. In an ideal world there would be a range of Huntington’s specific youth services to meet the needs of the young people in our community. However, at this stage, ours is the only one. For this reason, we see our service as essential to the wellbeing of these kids and families and are committed to it continuing.

The fact that our interventions come at no cost to the individual is very important to our model of support. We are committed to continue running our program and ensuring there is enough funding for this to occur.

In 2020 we are very pleased to have been given funding for the program by the Ansvar Insurance Community Education Program.

In light of what we have already achieved, and with these points in mind, what’s next for us is:

  • To continue to provide a professional and high standard of support, counselling and education to Huntington’s kids, young people, families and educators
  • To continue to learn more about the specific needs of our community through our relationships with Huntington’s disease researchers and professionals
  • To build the evidence base for our work in order to secure government funding that will enable us to keep meeting the needs of our community and continue building relationships with our clients into the future.

[i] Young People Living at Risk of Huntington’s Disease: The Lived Experience (Research Report, Journal of Huntington’s Disease, September 2018) Lewis-Mendez et al. 


[ii] Young People Living at Risk of Huntington’s Disease: The Lived Experience (Research Report, Journal of Huntington’s Disease, September 2018) Lewis-Mendez et al. 


[iii] Young People Living at Risk of Huntington’s Disease: The Lived Experience (Research Report, Journal of Huntington’s Disease, September 2018) Lewis-Mendez et al.


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