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NDIS Planning Tips for Children with FASD

Supporting children with Fetal Alcohol Spectrum Disorder (FASD) through the NDIS can be challenging. I’ve compiled some practical tips for families and support coordinators to create effective plans and choose the most targeted supports.

Comprehensive Assessment

Has the child had a comprehensive assessment? If diagnosed with FASD, the child would have been found to have impairments in at least three different areas of brain function. However, some children may have had limited evaluations that do not fully capture the extent of their impairments.

Understanding the child’s brain function and development is essential for developing effective plans. For children with FASD, underlying brain-based impairments significantly impact their behaviour. Recognising these impairments allows us to understand that many behaviours stem from skills deficits rather than deliberate actions within the child’s control. Behavioural or sensory assessments can be valuable, but they often focus on exploring reasons for behaviour in the child’s environment (triggers) or past experiences such as trauma, rather than developmental factors.

It’s important to fill in any gaps in the child’s profile to understand where their skills are lacking. This includes:

  • Language
  • Fine and gross motor skills
  • Attention and executive function

For example, a child’s fine motor skills might be impaired, but this could go unnoticed if the child is very active, or if their difficulties tying their laces are attributed to a lack of focus. Without recognising the underlying motor skills impairment, we won’t be using the right strategies.

Goal Setting

When children are diagnosed with FASD, they might be given a long list of recommendations for therapies and ways they can be better supported at home and school. So where do you start? What goals do you prioritise?

Goals in therapy reports typically focus on helping children build skills in areas where they are delayed. However, NDIS goals need to relate to the child’s ability to participate and function in daily life at home, school, and in the community. These goals might involve:

  • Developing the child’s skills and abilities, such as learning, problem-solving, communicating, and self-regulating.
  • Reducing the impact of the disability by modifying the environment, employing different parenting or teaching approaches, or using aids and sensory supports.

When setting goals, keep in mind that FASD is a lifelong disability, so timeframes need to be realistic. Sometimes children can learn new skills with enough practice – other times, it may take years to acquire skills, so they will need accommodations. For instance, if a goal for a child is to learn to get dressed independently – including learning to tie their shoes – this will be difficult with a fine motor impairment. It would be great if they did develop their fine motor skills, but the more important goal might be getting out the door in the morning with shoes on, in a positive frame of mind. In this case, changing the type of shoes might be a better option than requiring the child to do a difficult task that might lead to behavioural dysregulation.

Goals should also allow children to use their skills and experience success. When a child has a deficit in a particular area, our natural inclination is often to concentrate heavily on that weakness, encouraging the child to spend more time working on it. However, this approach can sometimes lead to frustration and disengagement. It may be more effective to focus on the child’s strengths, allowing them to spend more time doing activities they excel at and enjoy. By doing so, the child is more likely to be relaxed and engaged, and more open to learning.

It’s important that goals also focus on preventing future risks and promoting placement stability, especially for children who have already experienced trauma. Sometimes families experience a disconnect between the child’s therapy goals and the challenges they face at home in daily life.

If a family is not seeing benefits at home, goals might need to be reframed to ensure interventions have the greatest impact in daily life.

Therapeutic Supports

Allied health therapists, including occupational therapy, speech pathology, and psychology, can all support children’s skill development, particularly in the early years when there is the greatest possibility of brain plasticity.

Occupational therapy is usually a priority for children with FASD because it focuses on daily function – and OTs teach skills as well as help modify environments. Speech pathology is also important because communication difficulties contribute to many of the behavioural features of FASD. Psychology can support emotional and behavioural development. NOFASD has information sheets for these professionals here.

Therapies that support self-regulation are crucial. It’s helpful if everyone supporting a child uses the same approach, such as the Alert Program or Zones of Regulation, and that the same language and visuals are used at home and school.

Choosing therapeutic interventions should prioritise making a difference in family life. If a child has trouble communicating and gets upset easily as a result, it’s a no-brainer that they need to work with a speech pathologist. But if their difficulties don’t respond quickly to therapy, and the family is experiencing regular meltdowns every morning, we have to accept that the timeframe for the child to acquire skills is much longer than the family can manage. This doesn’t mean stopping speech therapy – but it is not going to be enough.

Coordinated Care

By bringing the care team together and identifying the key pressure point – the morning routine – we can leverage everyone’s skills to address the same problem:

Speech Therapist:
  • Helps carers understand the child’s communication difficulties and adapt their expectations.
  • Supports carers in simplifying communication.
  • Creates a visual schedule (eliminating the need for parents to do this).
Occupational Therapist (OT):
  • Works on the morning routine with the child and carers.
  • Assists the family in simplifying the bedroom environment.
  • Implements sensory supports.
  • Trains carers in the Zones of Regulation.
Therapy Assistant:
  • Visits the home once a week to support the daily routine and provide feedback to therapists and family.
Support Coordinator:
  • Plans monthly meetings where carers and therapists review progress and revise the plan.

FASD Education for Therapists

Many clinicians did not learn about FASD in their studies, so it’s important that therapists can do some online professional development – there are many options available, including webinars. Therapists need to be aware of how their typical approaches might need to be modified for children with FASD, particularly cognitive-behavioural strategies.

Social and Community Participation

Social skills groups are often recommended, and can work well for some children, but others might find it hard to participate due to language or behaviour issues. A mentor or support worker can help them build skills and communicate in social situations. For example, instead of having a child with FASD play an organised game that could lead to social difficulties, doing an activity like making a craft project side by side can be more successful. This way, each child’s happiness is not dependent on the other’s performance.

Support for Caregivers

Research has shown that carers who understand their child’s brain and abilities are generally happier, more satisfied, and less frustrated. Making time for therapists to educate, coach, and support caregivers is one of the most important interventions we can offer.

Respite

Having access to respite is crucial for placement stability, but many carers don’t use respite care because the child doesn’t cope with change and may take a long time to settle back into routine. It’s important not to dismiss these concerns, and instead explore ways to recruit a respite carer that the family can trust, who can be trained in how to support the child. If a respite carer can come to the home, build a relationship with the carers and child, and provide flexible respite, this can reduce disruption – but it needs to be someone the family is happy to have in the home.

Supporting children with FASD through the NDIS requires careful planning and a comprehensive understanding of their unique needs. By focusing on comprehensive assessments, realistic goal setting, therapeutic supports, and coordinated care, families and support coordinators can create effective plans that promote the child’s well-being and development. When everyone on the care team is working together with a consistent, FASD-informed approach, the child will have the best opportunity to participate and thrive in daily life.