How PBS helped a man living with Lennox-Gastaut Syndrome improve quality of life

POSITIVE BEHAVIOUR SUPPORT GUIDE

Behaviour Support Practitioner Sid met with a 32-year-old male participant.  

The participant was living with Lennox-Gastaut Syndrome, a severe and rare form of epilepsy. He was not interacting with others, and he was refusing to participate in activities.   

What is Lennox-Gastaut Syndrome and how might it impact quality of life?

Individuals living with Lennox-Gastaut Syndrome typically experience multiple types of seizures and some degree of intellectual disability. The seizures do not respond well to medication; individuals can experience frequent epileptic episodes – injuries and hospitalisation are common.  

Lennox-Gastaut Syndrome may impact an individual’s ability to live independently. It may also affect communication and daily functioning.  

How can positive behaviour support help improve quality of life for individuals living with Lennox-Gastaut Syndrome? 

In the participant’s case, positive behaviour support was requested to help him build his ability – and confidence – to explore and engage in daily activities.  

To help him achieve his goals, Sid -  

1.) Conducted a functional behavioural assessment to understand the reasons behind his refusal to participate 

Sid spent time with the participant at his residence and at the Day Program that he was involved in.

Sid noted that the participant was experiencing several short drop epileptic episodes, sometimes within very short intervals. Through conversation with the participant and his supports, Sid discovered that he had previously experienced injuries due to part epileptic episodes.

2.) Created a bespoke behaviour support plan to address the behaviours of concern 

The functional behavioural assessment gave Sid a strong understanding of the participant's strengths and challenges, and the reasons behind the behaviour. With this information, Sid created an individualised behaviour support plan.

This plan featured information including:  

• Intervention strategies designed to help the male participant achieve his goals. 

• Milestones to help measure and monitor progress.   

3.) Worked with the participant to help him feel safe and confident exploring and engaging in activities  

Sid began introducing activities that the participant could engage in while at home and sitting down - this included watching television and reading magazines. As his confidence grew, he moved to gentle activities outside of his home.

To engage and encourage the male, Sid ensured that they worked at an appropriate pace - one which felt safe and supportive to the participant. They took breaks as needed, and Sid respected his choice to stay in at times.

4.) Provided education to the man’s supports  

Through his observations and conversation with the participant’s support team, Sid discovered that educational sessions would be beneficial. He provided psychoeducation sessions on Lennox-Gastaut Syndrome, highlighting the severity and frequency of the participant's seizures, and helping supports understand why he had been so hesitant to engage.

5.) Collaborated with an occupational therapist  

To help the participant feel more stable and secure when walking without assistance, Sid reached out to an occupational therapist to prescribe a suitable walker.  

How did Sid’s positive behaviour strategies help to improve the man’s quality of life?  

1.) The participant is consistently engaging in a variety of activities  

Through Sid’s implementation of the behaviour support plan, the participant tried a range of activities and found some that he enjoyed.

The participant now enjoys -  

• Watching AFL on TV and reading magazines; activities that he can participate in while in a seated position. 

• Accompanying supports on short drives, often stopping to get takeaway – an activity that he loves! 

With his confidence growing by the day, he has now agreed to go on short walks using his walker. The participant happily engages in activities that bring joy, variety, and positive interactions to his daily routine, helping improve his quality of life.

2.) Supports feel better equipped to assist and encourage the participant 

Sid’s tailored psychoeducational sessions provided supports with the information that they needed to better understand and assist the participant - physically and emotionally. This improved the quality of care that they were able to provide and ensured that they could more effectively support him as he explored and participated in activities.

Are you caring for an individual who is living with Lennox-Gastaut Syndrome and experiencing behaviours of concern? 

Sid and our team of behaviour support practitioners are available to support in Ballarat, Geelong, Melbourne North, Melbourne North East, Melbourne West, Melbourne North West and Adelaide.  

We provide positive behaviour support (PBS) for adults and children (7+) with NDIS Improved Relationships (IR) funding, and pre-PBS assessments for individuals new to PBS. We also offer skills-building therapy under NDIS Improved Daily Living (IDL) funding.  

To request our support, fill in our online referral form or get in touch with us at 1300 575329 or info@activ8group.com.au.  

Please note - this positive behaviour support guide provides a top-level overview of the support provided by practitioner Sid; it is not intended as advice, nor is it a suitable replacement for professional support. Each person is unique, and the reasons behind behaviours may differ for everyone – personalised care is imperative. If you or someone you’re caring for is experiencing similar challenges, please see a professional for personalised support.  

---

Get to know Sid -

Meet Behaviour Support Practitioner Sid. Based in Ballarat, he's part of our Victorian behaviour support team. Visit Sid's profile page to find out more about his qualifications, clinical experience, areas of interest, and his therapy dog Bahiya.

To request support from Sid or our Victorian practitioners, fill in our online NDIS referral form, or

.