Diagnosis and Educational Needs are Equally Important

As a father of a son with Muscular Dystrophy and Muscular Dystrophy Australia’s Executive Director for the last 34 years it is with great interest that I recently read an article about a ‘can do’ approach for disabled students.

It has been my goal for the last three decades to educate people that disability does not define a person.

The muscular dystrophies are a 60 distinct incurable disorders affecting 1 in 625 men women and children.  The economic impact of Muscular Dystrophy exceeds $6 billion per annum as per the Access Economics report that was commissioned by Muscular Dystrophy Australia in 2007.

My view is that medical diagnosis and educational needs are equally important. One cannot go without the other as they will impact each other.

There are a plethora of conditions and diagnosis in our community that need to be included; most importantly, the understanding of the differences of such conditions. As such, a one size fits all is never going to work.

There needs to be highly specialised input to ensure that no child is being disenfranchised.

Take for example my area of expertise, Muscular Dystrophy, I can attest that most schools have heard of the condition but do not have the expertise on how to best deal with a child with the condition. There are several disabilities that have similar complexities.

Muscular Dystrophy often runs parallel with Autism and the conditions have polar opposite needs and requirements.

I cannot emphasize enough how specialist representation is crucial for every case.  Whilst most children fit the adjectives: “generous, caring, loved school, incredible memory, loved sports”. These are all subjective to the condition of the child and cannot offer an objective assessment as to what the child needs.

“Not keeping up with peers” becomes critical from an early age for most children. What the child can do and what the child cannot do and most importantly what the child will not be able to do, are all critical perspectives that can only be addressed by specialists in their fields of expertise.

Children with Muscular Dystrophy will have different needs throughout their lives. We know for example that children with Duchenne MD will need a wheelchair before they are teenagers. Some children will need a wheelchair by 8, other by 12. This reinforces the point that I am trying to make. Each child is different. The one thing all children with Muscular Dystrophy have in common is that they will never achieve independence.

It is unfair to ask parents to shop around to be understood and heard. Schooling should definitely be students first and not a reason for a battleground.

In my view, which comes from three decades working within the disability sector the best way to serve our children is to respect each different roles that are crucial in assessing the child’s need. There must be a place at the round table for the parental role, advocate role, specialist role, mediator role, medical role and the government authorities’ roles.

Parents should not be expected and don’t always know or really understand the condition and how it manifests and therefore should not be left with the burden of making decisions that could have a negative impact on their children.

There is a tendency to streamline processes in the belief that it will increase efficiency. We are talking about children with different conditions that require different plans. If the Government is really serious about delivering a ‘can do’ approach, then its priority will be to make sure that each and every child receives a personalised approach on today’s needs and take into consideration the changing landscape and increasing dependence as a consequence of the progressive and irreversible muscle wasting of Muscular Dystrophy.