Hi there!
Ok I know its been forever since I have updated this blog...no excuses...just have not made the time :( Sorry.
My newest project with Albinism has been trying to get Albinism added to the ECI (early childhood intervention) Medical Diagnosis List. Each state through their EI department has a list of medical conditions that if a child is born with or acquires, they automatically qualify for services and don't have to go through the evaluation process to determine if they are eligible for services. They still go through an evaluation process to determine where they are at developmentally and to write an efficient IFSP but qualifying them is no big deal.
Something came up a few weeks ago that made me think back to when Aiden was born and he qualified for ECI. I have heard from many parents since I was blessed with Aiden about the struggles with getting their child with Albinism qualifies for services, and it they do actually get them services it is not what they need or deserve, and like in our case they were qualified on something ridiculous rather than the permanent condition of Albinism and all that it entails for our kiddos. Aiden was qualified on Atypical behavior because he could not tolerate tummy time at 2 months old because of his Acid reflex, which at the end of the day he was qualified and we got our foot in the door but the way it was done was so silly to me when his Albinism was the obvious issue to developmental concern, as it considered to be at risk for developmental delay...but its not on the list so it didn't count, and that is what I am going to change.
I have been collecting letters from medical professionals requesting that this be added to the list as backup to my request so I do not seem like a whinny parent and I was asking for parents of children with albinism in our chapter to write letters either about their positive or negative experiences getting their child qualified for early intervention services however I have not gotten the response I had hoped for from our parents :(
I have been given some new contacts in Austin to approach with this request so I will keep you posted. Please keep your fingers crossed and say a prayer!
