Post date: Feb 26, 2017 7:25:44 PM
I wrote everything you are about to read below first in this post, but I wanted to point something very important out. Little of this post is about Gloria it is about my family scratching, clawing, pleading, and begging for the services that Gloria needs to remain with our family. I truly feel that the amount of time I have to spend on all that you are about to read below has eaten up valuable time that could have been spent helping Gloria learn to walk, talk, and eat. Instead I am buried in political beggary trying to salvage the program that supports Gloria living at home with her family. To me it is just sad that we are here as a society. Also, note this doesn't include the countless hours fighting with insurance companies...double sigh.
Well it has been a whirlwind. The cuts came through and we lost all supports except our night nurse from the end of November 2016 till basically January 2017. It was terrible. We fought and appealed, and with the support of our family survived long enough to make it through the appeal and keep Gloria at home with us. It was rough. I hate being at the whim of the fickle state budget. I have again begun meeting with legislators as part of the Go Project through the Oregon Council on Developmental Disabilities. I am trying to save the K plan from further cuts and it is difficult to listen to the shallow arguments about not having enough funds to go around when Oregon has THE LOWEST corporate taxes in the nation and insane tax brackets that have people in poverty paying 9% and millionaires paying 9.9% in income tax. I digress. I am also working on saving the K plan at the federal level, and delivered a webinar presentation to the Rare Disease Legislative Advocacy Group and from that a meeting with a National Organization of Rare Disorders developed and they agreed to support inclusion of the K plan in the Affordable Care Act Replacement. Then I began work with the family networks in Oregon to contact Greg Walen the Oregon legislator that is the Chair of the Energy and Commerce Committee that is overseeing the rewrite of the ACA. Our Eastern Oregon Family Network got in contact with him at his town hall in Ontario in February 2017, and got tacit agreement that he would support the inclusion of the K plan in the ACA replacement. We will continue to meet with Walden's staffers to help them gather a good understanding of why the K plan needs to remain part of our healthcare policy in the United States, and why community inclusion funds make economic, and quality of life sense. I am excited to see how this all turns out. I have written a response to Federal Representative DeFazio in his request for stories of how the Affordable Care Act has helped people around the country. I also interviewed with CNN and a the Portland business Journal about the ACTH price gouging, and the penalty the manufacturer had to pay. It has been busy.
Now to what matters...Gloria. Her progress verbally has been fantastic gaining ground rapidly. She says short sentences 3-4 words consistently now. Yet, the physical and eating development has been plateaued for months, and in the case of eating my opinion years. We have been so busy with saving her program we haven't had time to work with her like I would like to. She has her Ankle Foot Orthotics now and that has significantly improved her gait and she wants to walk more, and shows interest in standings. She gets to her knees a lot and bounces. She wants to walk and has lots of supportive devices around her to assist with this. We are going full bore on walking. We are adding physical therapy back into her routine more. We have had to remove her from her private preschool, but were able to add another 2 hours twice a week back in the form of special education preschool at the ESD.