Special Needs Movement
A Voice for the Invisible
This is who I am fighting for:
My Reason
He deserves equality
I titled this A Voice for the Invisible, because I truly believe that our government; our society has ignored the special needs community, and treat us as if we are invisible. I see movements all around me, and I whole-heartly agree there needs to be huge change and equality for all, but I never hear anyone mention the inhumane treatment or complete non-existence of resources in the special needs community. The neglect, abuse, absence of funding, lack of education, shortage of programs, and scarcity of empathy.
Let me introduce myself. My name is Michelle. I have a beautiful, funny, smart, loving, quirky son named Josh. Josh is almost 19, and we have been informed that there is nowhere in our state that has a day program for him. My son is nonverbal and non-ambulatory. He relies on me for his survival. He does qualify for an aide to come into our home, but if he has a seizure the aide is not allowed to use his life saving medicine to save him, because only nurses can administer meds. This is only an extremely small part of our battle. I know every parent of a child (or children) with special needs have a long list of basic needs that we are unable to receive for our children. There are waiver programs that we are forced to apply for, so our children can receive necessary care, and many of the programs have waiting lists of ten years or longer, if you want to move to a new state, you get placed at the bottom of that states list. We must have caseworkers in and out of our homes to qualify for these programs, huge violation of our privacy; not to mention at times degrading.
The Movement:
On the third day of each month we will send letters and/or call our state Representatives (Governors, Senators, and House of Representatives) Follow the links to find your state reps.
President Joseph R. Biden https://www.whitehouse.gov/contact/
Senate: https://www.cop.senate.gov/senators/senators-contact.htm
House of Representatives: https://www.house.gov/representatives/find-your-representative
Governor: https://www.usa.gov/state-governor
The letters should tell your story, and what you need. How you are struggling and what they can do to help. Add a picture of the person that you are fighting for; let’s put a face with our stories. I suggest being kind. Calling our government officials names will not help our fight; it will make it more difficult to be heard. It seems like a small gesture, but it is just the beginning, and if 1000’s (or more) of us begin to speak together, hopefully our voices will start to be heard. The special needs population deserves more. Our families are struggling, and it is unacceptable.
I have reached out and hundreds of you have responded. The biggest concerns are financial stability. No help or programs mean parents cannot work. Needing waiver programs just to provide basic needs for our children, yet the programs have long waits. Caps on saving for our children’s futures. Lack of programs or services for adults with special needs. Safety, untrained aides, and teachers working with our children. Rampant abuse in schools, on buses, by healthcare workers. Fear of what happens when we are no longer here to protect our children. The list goes on, but these were the most mentioned.
Let’s unite, work together, and start to get the special needs community the services that we need and deserve. Together we CAN do this!!!
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