Why Families and Carers Matter
When we talk about behaviour support, it is easy to focus on professionals — behaviour practitioners, psychologists, occupational therapists, or educators. But in reality, some of the most important people in the process are the ones who spend the most time with the individual: their families and carers.
Families and carers provide not only day-to-day support but also context, insight, and emotional connection. They often know the person’s history, communication styles, likes, dislikes, and subtle cues better than anyone else. Without their involvement, behaviour support risks becoming disconnected, impractical, or even ineffective.
In this blog, we’ll explore the vital role families and carers play in behaviour support, the challenges they face, and strategies for building strong, respectful partnerships.
Table of Contents
Families and Carers as Experts by Experience
Professionals may bring qualifications, frameworks, and theories — but families and carers bring lived experience. They know the person’s story, routines, and triggers in ways that no assessment tool can capture.
For example:
- A parent may recognise that a child’s “tantrum” is actually an early sign of sensory overload.
- A carer might notice subtle shifts in facial expression that signal frustration before a behaviour escalates.
- A sibling may understand the importance of a favourite activity in helping their brother feel calm and engaged.
This knowledge is invaluable. It helps practitioners design plans that are not only technically sound but also personalised and workable in daily life.
Building Collaborative Partnerships
True collaboration requires more than simply asking families and carers to “sign off” on a plan. It involves recognising them as equal partners and respecting their voice in every step of the process.
Key elements of partnership include:
- Listening with respect: valuing what families say about their experiences and priorities.
- Sharing information openly: explaining assessments, strategies, and goals in accessible ways.
- Acknowledging expertise: recognising that lived experience is just as important as professional knowledge.
- Decision-making together: co-creating goals and supports rather than imposing them.
When these elements are in place, families and carers feel empowered, and behaviour support becomes a shared journey rather than a professional directive.
The Emotional Landscape for Families and Carers
Supporting a person with behaviours of concern can be deeply rewarding, but it can also be stressful, exhausting, and emotionally challenging. Families and carers may experience:
- Burnout: from the constant demands of supervision and support.
- Isolation: if friends, extended family, or community do not understand the challenges they face.
- Guilt or blame: from stigma or misunderstanding about behaviours of concern.
- Conflicting emotions: love and pride in the individual, mixed with worry and frustration.
Acknowledging this emotional reality is essential. Families and carers are not just resources to be used in implementing plans — they are human beings who need support, empathy, and respect.
Practical Strategies for Involving Families and Carers
1. Inclusive Planning Meetings
Planning meetings should be scheduled at times that work for families and carers, with language that is accessible rather than full of jargon. Creating space for their input is key.
2. Providing Training and Resources
Families and carers often want to support behaviour strategies but may lack the knowledge or confidence. Practical training in areas like communication support, positive reinforcement, or de-escalation can make a huge difference.
3. Respecting Family Dynamics
Each family has its own structure, culture, and values. Practitioners must be sensitive to these dynamics and avoid making assumptions about what “should” happen.
4. Regular Check-Ins and Reviews
Behaviour support is not static. Regular communication ensures strategies remain effective and families feel supported.
5. Celebrating Success Together
Acknowledging progress, no matter how small, helps build hope and motivation for everyone involved.
Case Example: Collaboration in Action
“Michael” is a teenager with Down syndrome who often displayed aggression when routines changed unexpectedly. His school staff viewed this as non-compliance, but his family explained that Michael thrived on predictability and felt anxious when things were uncertain.
By listening to his parents, the behaviour support team developed visual schedules and provided warnings before transitions. With this adjustment, aggression decreased significantly. The family’s insight transformed the plan from a reactive strategy into a proactive solution.
Challenges in Family and Carer Involvement
While family and carer involvement is essential, challenges sometimes arise:
- Differing opinions between professionals and families.
- Overwhelm if families feel too much responsibility is being placed on them.
- Resistance to change, particularly if past experiences with services have been negative.
Navigating these challenges requires patience, clear communication, and a commitment to partnership.
Conclusion: Families and Carers as Cornerstones of Behaviour Support
Effective behaviour support is never just about strategies on paper — it’s about real people working together to create safe, meaningful lives. Families and carers are not peripheral; they are central to this process.
By recognising their expertise, supporting their wellbeing, and building genuine collaboration, practitioners can ensure behaviour support plans are both effective and sustainable. In the end, stronger partnerships lead to better outcomes for the person at the centre of it all.
Transform Life is a NDIS registered organisation that provide support for you and your family.
Book your consult with an experienced Therapist at Transform Life to explore how OT, PBS and Speech Therapy can support you and your family.
