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:
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.
“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.
EYES AND INDEPENDENCE
13th June 2019
International Albinism Awareness Day
NDIS Registered Provider no. 4050011793
Kerri Weaver is a service provider for children with disabilities.