#EveryoneDeservesCare: Allie's Story

October 5, 2022 / #EveryoneDeservesCare

In this week’s #EveryoneDeservesCare story, we hear directly from Allie about the barriers people face in trying to get care, and the toll it takes on both their physical and mental health.

Allie’s Story

Domestic Violence Survivors with disabilities face enormous hurdles to access care. While I believe Everyone Deserves Care, this is not happening in Ohio. People like me have faced vigorous challenges, more than the average person, in this care crisis.

I am 36 years old. I have congenital heart defects, a chromosome disorder, and several other disabilities. My main condition is called Mast Cell Activation Syndrome.

My day to day life consists of breathing treatments, very strict protocols for medication administration, suctioning, logging any kind of intake, side effects and vitals, and utilizing specialized compression equipment. I need high levels of supervision for any kind of activity that involves food intake. I need constant reminders to drink water because any bit of dehydration can lead to an emergency room visit.

I am also in a wheelchair and utilize extensive help with my activities of daily living. My care is very important to my overall functional levels.

The direct support crisis challenged my ability to cope with life these last few years. Ohio has many systemic challenges to why people are unable to access care. Low wages, managed care contracting issues, payment of providers and lack of accessibility in waiver services.

I was on a backup plan for almost 300 days because my managed care plan refused to problem solve provider billing issues. One provider went 471 days without pay. Two others providers never received payment for services rendered. I faced discriminatory and unjust barriers to accessing care. I was repeatedly bullied by my managed care plan about protocols in place to keep me safe from abuse.

The ability to access services and supports should not have so much red tape attached to it that it forces someone in a vulnerable position to lose hope or to be forced to be in vulnerable situations that subject them to abuse or harm because they need care.

This is my story… the state of Ohio failed me when they allowed a managed care entity to purposely block access to a qualified Medicaid independent provider violating Appendix K emergency rules. I waited 17 months to contract a home care provider. I was bullied about a nursing home, spoken to in dehumanizing tones, and even with ombudsman advocating for over a year I went without many of my basic needs met. I faced some of the most unjust discrimination to access care.

I didn’t stay silent… I painted to survive. I also dealt with the unjust challenges of being subjected to more abuse and violence. Advocacy, art and peer support helped me have my voice to hang on despite all that was going on around me. I spent a lot of time in out of the emergency room, infusion center and even inpatient in the hospital. I know that it cost state more money — if they would have done the right thing, they could’ve avoided those things.

#EveryoneDeservesCare, yet I kept losing care due to billing and pay problems that went unresolved too long. The low and delayed pay makes it so people cannot recruit workers and keep them long term.

I had to relocate because it was obvious I could not access the care or services needed under my managed care plan. They had broken me to the point, I was in an extreme mental health crisis and in a vulnerable place that jeopardized everything I worked so hard to free myself from.

I switched managed care plans and there has not been much change. I have some care. It legit is rocky every day. There is no stability when my provider is on verge of homelessness due to low wages. I continue to make art, use my voice in advocacy, and stay connected to peer support groups with other people with disabilities.

Change is necessary! This is most severe crisis ever! We need everyone to speak up! Reality is #EveryoneDeservesCare.

#EveryoneDeservesCare shares real stories from disabled Ohioans that have been affected by the Direct Care Workforce Crisis in order to educate the population and those in power to make change on the dire nature of this issue. Direct Care Workers are people who provide home care services, such as certified nurses, home health aides, personal care aides, caregivers and companions. Factors contributing to a lack of care for disabled Ohioans range from low-pay, inadequate incentives to remain in a care field, and lack of sufficient funding for service systems. Due to the impact of the crisis, disabled Ohioans have gone without their basic needs and wants being met for years. Many have either been forced into nursing facilities or other institutions or have endured a lower quality of life and risks to their health and safety.

If you would like to share your story for this series, please fill out this survey https://www.surveymonkey.com/r/EDC-ShareYourStory
All stories and information published in this series have been shared with explicit consent.

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