TODAY IS INTERNATIONAL ALBINISM AWARENESS DAY

​Over the last couple of months on social media, a parent shared her concerns and worry following a rejection from NDIS for her young 2 year old son who has ‘albinism’. Another parent has recently been told that her 10 year old son won’t qualify for NDIS. This week there has been discussions about ‘consumables’ and the decision makers unsure about allowing ‘self managed’ families to buy the sunscreen, hats, sunglasses…really?
Questions that have come to my mind following this issue have included:

• Why would this be?
  
• Who is making this decision?
• Is the decision maker someone who needs to increase their understanding of albinism?
• Do they know that if someone has albinism it will always involve a vision impairment and the issues related to it?
• Have they not made the connection with albinism and a vision problem? Perhaps, the perception or confusion is a person with albinism just has ‘white hair and pink eyes’ – why would they need assistance?
• Does the decision maker understand the impact of having a vision impairment?

I wonder if the decision makers understand the areas of development that can be affected by a vision impairment – fine motor, gross motor, mobility, language & communication, feeding, social/emotional, cognitive ability, spatial perception.

As an experienced specialist teacher in vision impairment, early childhood and Orientation & Mobility, I would like to share with you some insight into vision, albinism and the impact it can have on a person.

• Vision is a strong motivator that stimulates self-initiated environmental exploration.
• Vision provides an incentive for tactile and spatial exploration.
• Between 80% and 90% of all incidental learning in youngsters is through visual channels.
• Therefore, if the vision is restricted or reduced in any way, the motivation and natural learning may not occur so easily.

There are great variations in the distance a person with albinism can see, the depth perception difficulties, high sensitivity to light and outside glare and the speed and movement of their eyes (nystagmus)(‘wobbly eyes’).
“The vision loss is secondary to the discomfort and pain caused by glare. The desire to squint and shut your eyes always wins, and it is never quite enough”. (Annette Ferguson) Continuing on, “Outdoors and brightly lit environments can be very uncomfortable for a person with albinism. Sometimes too much glare can result in a total white-out,and reduce the ability to identify objects in the shade”.

"The wearing of sunglasses and sunscreen are non-negotiable, basically a requirement for all children and adults. The cost of these items for quality and protection can be higher in costs and the need for re-application of sunscreen results in the need for additional supplies. Many families of children with albinism are also required to invest in additional clothing or longer sleeved uniform items for the protection of their skin".

Vision develops from birth along with all other areas of development. Vision is a learned process. The importance of early intervention for these children with albinism cannot be understated. Learning begins from day 1 and children with albinism need guidance in enhancing the learning to ensure they too will move along achieving their developmental milestones like their peers. It will be a lifelong learning process.

Transition from the early years into school, from primary to High School, from High School to University and/or the workforce are all periods of high stress and the need for support. This can include Orientation and Mobility support, adjustment periods that require reassessments of ongoing needs, new Assistive Technology and/or updated equipment, in order to keep up to pace in their local community areas. Timely supports for the person with a vision impairment can increase their independence enabling them to socially and economically participate in their community.
​
Please consider the uniqueness of a person with a vision impairment, acknowledging the need for supports and in making the decision to grant approval for funding supports (NDIS on this occasion), consider the child/person on an individual basis, which may not always match generic criteria in the process.
 

Kerri Weaver
EYES AND INDEPENDENCE
13th June 2019
International Albinism Awareness Day

albinism_ndis.docx
File Size:	41 kb
File Type:	docx

Download File

---