#EveryoneDeservesCare: Jynette's Story
February 8, 2023 / #EveryoneDeservesCare
In this Everyone Deserves Care story, we hear directly from JH. JH shares with us how important her community is to her and the life she strives to live. She also shares how difficult it is to maintain that life without the support of consistent home and community based services.
I am 63 years old and live in Columbus, Ohio, with my son who had to move in with me so that I would have some consistent care.
I am actively involved in my community, and have provided Christmas for families with children for 26 years. I am the creator of 614 Youth Prevention Agency, and put programs together for middle and high school-aged students, especially focused on the holidays with our toy giveaways. I also volunteer at multiple different agencies at a time.
My issues with gaining adequate care started as early as 1995. I worked at first as a medical secretary at OSU and fought for years to receive my Social Security (SSA) benefits—which I didn’t start receiving, even though I was in pain, until 2011. Because of my lack of transportation, which has been a problem since 2018, I lost a position with Nationwide Children’s hospital. Some days, my ride would be cancelled or dropped. Then, my bus pass expired, and I was waiting for a month to get a new one mailed back to me.
I am enrolled in a Medicaid-funded waiver program and should be receiving 12 to 14 hours a week of care for my needs, which often go unnoticed. My lack of home aides really became a problem for me in 2015, following a stroke that left me unable to attend to my home the way I want to. I rely on services to take out my trash, clean dishes, and organize things around my home for two hours every day. Right now, I am receiving no hours due to lack of consistent aides. I also rely on services for things like my Stairmaster and other equipment that helps me physically, as I’m unable to stand or walk around for long periods of time. Due to my physical needs, I also don’t drive – so I rely on services for transportation.
In 2015 and in 2018 my whole world changed. A landlord did not follow Section 8, so I had to pack up all of my stuff and move into a nursing home in 2015 for three months. That was such a stressful situation. When I go through an anxious situation and I can’t control it, my whole-body panics, and my stomach starts acting flippy floppy.
That time in the nursing home was rough, and I constantly had to advocate for myself and others every day. The atmosphere was not good. My roommate was on the floor every time I woke up in the morning. Her health aide would often be sitting outside of our room and not checking on her, and I would have to go get help. Living there is why I have such bad problems with my legs even today. My thyroids around my body went out of control. They had to remove the thyroids and they took my voice away, and I had to do physical therapy.
When I was able to transition out of the nursing home I did so as soon as possible. I applied for a program which gave me this application to get movers, packers, paid for my deposit, electric, and gas. Two weeks later I moved into a house. I prefer to live in my community, but without consistent care it’s hard to maintain my life.
So, now I am at my wits end with all of this, and I don’t know what to do. I don’t receive the care I need, or the help to be able to figure it all out.
Over the years this has caused severe underfunding and it’s hard for me to keep my lights on. Between systemic barriers and this lack of care, navigating it all is exhausting and stressful, and I am consistently struggling to keep my head above water to look for higher paying jobs. It’s overwhelming.
Unfortunately, my family, and friends can’t provide support to me, because they also have full-time jobs and lives. Because of my health issues it’s hard to work a full-time job. I can only find positions like 504, or jobs like AARP, AmeriCorps VISTA, or others — that way I will not lose my benefits.
I feel like isolating myself all the time because I get sick of fighting. I am always in pain, my knees hurt so bad all of the time, and I can’t walk or stand up. I can’t move out of my place or make a better life, because my income keeps going up and down. My neighborhood is unsafe — with gun shots almost every night. I am so done with all of this, and it’s hard to find faith.
All I want to do is to live a productive life and help others. I want to promote good deeds. Like the 614 Youth Prevention Agency’s time helping give hot meals to Latitude 425 – the folks that got put out of their houses. Our agency was able to give them a hot meal for the whole month of January. We are now calling this the “Elements of Life” our plan is to people’s need at their home so we can get them food and special needs. I want to have the care I need to be able to do more things like that. I want to focus on the things that matter and have the energy to do what I love — which is empowering our community with resources. Especially our homeless people and our youth.
When I’m fighting for care, I cannot live the life of service as well as I want to. When you can’t help yourself, it’s hard to be able to help others. Money is not enough, and you can’t survive without care — especially now. It makes me sick to my stomach. I just want to see change. I feel like I have no control over my life. They do.