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So glad you shared this story. I have LGMD and would like to reach out to Ralph Yaniz but not sure how. I am not so tech savvy. I want the lawmakers to reinstate the option for those disabled people that work the option to buy Medicaid as a secondary insurance to cover PCA services. That is how I paid for PCA until it was removed in 2014 with the Obama administration healthcare. Currently Medicaid is weighed down by all those people on Medicaid that are able bodied and can work, by those that use the PCA service for housekeeping only or transportation to the store and by those with significantly less severe impairments than mine. For example, a 9 year labeled as ADHD getting PCA services so they help him with homework, getting a bath, etc, so the mom can have a break. Are you serious. The child gets the same hours I get, 30 hours. I am wheelchair bound and my getting help is a matter of life and death. A mother with no job and already on welfare and has a child with ADHD which they label so many children. It is known in most lower class communities that a parent can get an SSI check if their child has this. SSI is the new popular welfare. And they learn through people that work at these PCA agencies that they can basically get a babysitter through Medicaid so now I am competing with a child to get services because the people they hire are lazy and want to do as little as possible. Since I require more help, of course they choose to help a child who has some attention probs. This needs to change. The rules need to change. We have created a monster as far as I am concerned. The people that really need the help cannot get it and I am sick of it. I also want the private and Medicaid and Medicare to pay for DME that we need like shower chairs, standers, seat elevators on our electric wheelchairs, etc. I also want private insurance to pay for me to have physical therapy, whenever I need it to maintain my function. I should not have to wait for a contracture to cause pain. I want my voice to be heard but I am tired and do not know who to speak to. I work full time and deal with every day issues that able bodied people deal with in addition to my issues with my LGMD. I am tired.
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