CHOICES

Yesterday was Legislative Day in Missouri. I did not make the trip to the state capitol in Jefferson City to be part of a rally or speak to legislators. That's just not my thing. If it is yours, great. That does not mean I don't care. I do. 

People with disabilities deserve choices. Those of us living in group homes and on Medicaid have limited choices.

We need improvements in what is considered accessible housing.  This means wider doorways as well as wider hallways.  Any ramp should be a gradual slope/ I have tried to go up or down ramps at some houses and if someone had not assisted me my chair would have fallen off the ramp.

All ramps should be checked to make sure that they meet safety standards. There needed to be more room for me to drive my chair around in some of the houses I have visited. 

Wheelchairs and lifts need a lot of space. Accessible housing should be accessible to everyone.

I know this is discriminatory. I know this will never happen. I am going to say it anyway. I believe no one under the age of twenty-five should be hired to be a caregiver. They are too self-involved. They walk with me (sometimes ahead of me) with their head down looking at their phone.

I have experienced negativity from my caregivers I have experienced a lot of positivity. The positive experience outweighs the negative experiences. Mutual respect between a client and their caregiver is a must. Listening to one another is important as well if the relationship is to a healthy and lasting one.

I have been deemed unemployable by the State of Missouri on three separate occasions. I have been told by the state of Missouri that no one would pay me for the skills I have. I am a writer. I have an MSW. While I have no interest in going out and working, (I held a part-time teaching position for sixteen years) more work-from-home jobs are needed. 

Since COVID-19, many people are working from home. Why can't I? Why did the State just bail out on me?  My vocational rehabilitation office could have tried harder. M counselor should have tried harder. I refuse to be humiliated like that again. The third time was definitely not the charm for me.

If I remain in my situation and my Sara Lift breaks down Medicaid will not pay for it to be replaced. The lift I am currently using was donated.

If I go to a long-term care facility and my powerchair breaks down there is a strong possibility that Medicaid will not pay for a replacement powerchair. Leaving me dependent on others to get around. Mobility aids are essential to someone with a disability.  

I have waited months for my chair to be serviced. I waited months for my new chair to arrive.  Mobility aides should be regularly serviced. Without my mobility aids my quality of life would be nil. The fear of losing one or both of my mobility aids keeps me awake at night

Because I need skilled nursing care retirement communities won't accept me. Retirement communities should offer skilled nursing care. The really nice LTCs either do not offer skilled nursing at all or the Medicaid beds go to a resident already living there, or there are long waiting lists for the beds available.

When I speak of LTC I do not mean warehousing. I visited the Medicaid floor in a nursing home where the entire floor reeked of urine. The residents were not engaged. They looked like zombies. That is warehousing. That is inhumane

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Medicaid nursing home residents deserve their own rooms. Don't penalize us based on our ability to pay. Yeah, I know, that's how the world works. That's why my dream of living out my days in a private room, with an adjoining patio where I could sit waiting for my three o'clock cocktail will never happen. I require too much care. It would cost the State of Missouri too much money for this to happen.

A Queen Bee (as in the movie) Golden Girl on Wheels. That would be so rad.

There is no point in a Legislative Day. There is no point in rallying for our rights. I love my country. I have, however, lost faith in our government both at the federal and state level. Until our lawmakers are directly affected by all the issues that I have mentioned. Nothing will change for people with disabilities.

To those in power. To those who pass bills into law, i have one final message. Wake up. Make changes now. In the blink of an eye, it could be you. Give us the choices that you would want.