October 11, 2024: Augmentative and Alternative Communication
I received news this week that brought me to tears. Providence fired my home health Augmentative and Alternative Communication (AAC) speech therapist because it is discontinuing AAC as a home health service.
I started writing this journal in July 2022 when I learned that I have motor neuron disease. By 2023, my diagnosis was confirmed to be ALS. My voice was deteriorating, and by summer, I clearly needed AAC therapy. In August 2023, I started to publish the journal entries as a substack because I could not speak and wanted to keep communicating with my friends and family. I would not be able to type it without the help that I have received from my AAC therapist.
I have been working with the home health AAC therapist nearly weekly for more than a year. I had no clue that AAC would be so complicated. The therapist must have many skills. First, we chose and ordered a speech computer. When it arrived, she brought her wrenches to attach the computer mount to my electric wheelchair. After the hardware was installed, she helped me find the right software. She needs extensive knowledge of the software products because there are many options to adapt to my needs. I had a roadblock when my eyes were too dry to control the computer with eye movements. Now I alternate between a hand mouse and head mouse to type. I rely on my AAC therapist to help me when I deteriorate further.
Until now, Providence has set the standard for ALS care in the Northwest since Dr. Goslin started the multidisciplinary ALS clinic at Providence Portland Medical Center in the 1990s. Dr. Nick Olney cares for me there. Home Health AAC has been in important part of this Center of Excellence. Please write to https://actionnetwork.org/letters/tell-providence-patients-over-profit to tell Providence executives why the home health AAC speech therapy 0program is so important.
I am so sorry the most recent fuckery by the Sisters of Profit has come for you. Caring for the "vulnerable" (straight from their mission statement) my ass. I have come to despise that allegedly non-profit organization from the depths of my being. In my case it's because of their virtual dismantling of The Center for Medically Fragile Children. See this article https://www.oregonlive.com/health/2024/05/staff-at-providence-center-for-medically-fragile-children-sound-alarm-over-shrinking-space-families-turned-away.html In the 90's my daughter spent most of her seven years of life as a resident and received wonderful care. It is just appalling that the SOP is leaving parents, children and now adults with no alternative options. It seems like the state should be able to step in and insist a non-profit consider to provide services where no alternative exists or face loss of non-profit status.
I wish you and your wife all the best in your difficult life and the decisions you must continually make . It must feel particularly ironic as a neurologist to have developed ALS.
I am sorry to hear this, Rick.