#EveryoneDeservesCare: Latisha's Story

September 1, 2022 / #EveryoneDeservesCare

My name is Latisha Martin, and I am an African American woman with mild to moderate cerebral palsy who also has cognitive learning challenges, and mental health challenges. I am the second oldest of eight sisters. I am one of three with college experience, and the only one of my siblings who is physically and mentally challenged. I graduated from Meadowdale High School for International Studies on May 31, 2003, and graduated from the University of Vermont LEND (Leadership Education Neuro Developmental Disabilities) Program on May 9, 2022.

From an early age, I have been a fierce advocate, for both myself and for the disability community. During my childhood, I did not have a stable home until the age of 12, nor the accessibility my disability required. I told my teacher I felt I was not being properly cared for. My teacher encouraged me to share my safety concerns with my school services coordinator. Some of the things I had to deal with were not getting fed properly and having to climb in and out of the bathtub due to the inaccessibility of my home. I was confident enough to share this information because my teacher had documentation to prove my negligent experience. I had a three-hour conversation with my school-related service coordinator that resulted in getting put on the emergency status list. From there, I was able to start the provider selection process.

As a self-advocate I am also a member of the Breaking Silences Advocacy Committee. The Breaking Silences Advocacy Committee is a group of individuals with disabilities who advocate for structural change within disability systems. I am also involved in the committee’s peer support group that offers individuals with disabilities a confidential and safe space to get support and resources for difficult situations.

Additionally, I volunteer as a Certified Ohio State Ombudsman associate. In this role, I advocate for the rights of individuals in the Sanctuary Nursing Home and provide a listening ear if needed. I also serve on the Olmstead Taskforce Direct Care Work Group, which is a sub-group within the Ohio Olmstead Taskforce Committee (OOTF) where we come together to come up with strategies on how to raise the wages of all the service professionals in all the waiver systems. This group also works on solutions to the crisis, while educating legislators and lawmakers.

In 2019, I advocated to get an automatic door opener and other wheelchair accessibility accommodations in my apartment with assistance of the Miami Valley Fair Housing Center in Dayton, Ohio. They assisted me with filing a discrimination case, which we won in April of 2022.

Additionally, I hold a seat on the Ohio Provider Resources Association (OPRA) Advocacy Committee, which assists individuals with disabilities on how to get more involved in advocacy work.

Today, I receive my assisted living supports, such as bathing, dressing, meals, transportation, and financial support from my direct support professional (“DSPs”) agency, Choice in Community Living. To receive all the care I need, there must be available staff that can assist me. I enjoy living independently because it offers me the freedom to go where I want to go. Additionally, it allows me to be active in my community.

I am concerned because the people that assist me have children and must drive back and forth. With the increase in gas prices and the cost of living, I am afraid of losing staff because everything is becoming more expensive. I have a direct support professional with three children who is looking for another job because of high gas prices. At ten dollars an hour, my DSP is struggling to put gas in her car. I believe I am going to lose staff because the agency does not want to help the workers or me. This has created the fear that in the future I will not have staff and will be forced to go into a nursing home.

I want the management staff at Choices in Community Living to know about the emotional damage that can take place when a DSP is let go by the agency. I have experienced this firsthand on two occasions. I had one DSP that helped me for three years and then she was let go. The agency told my DSP that she needed more medical training and that she could come back, but she did not. The second instance was for the same reason and resulted in my DSP not returning. I have become good friends with my DSPs, so it hurts when they cannot return. I think management needs to take the client’s feelings into consideration and think about the impact that changing DSPs will have on the individual.

I believe that better wages would help to resolve the crisis. Furthermore, direct care workers should receive gas cards, bus passes, and increased gas mileage pay. There should also be better accommodations for workers, such as a substitution list and benefits for staff, especially for those that have children.

In addition to advocating for better treatment of direct care workers, I also want to advocate for removing annual caps for equipment and services for people on Medicaid. For instance, having one dental care appointment a year or receiving one new wheelchair every five years is often very limiting and not enough to meet people’s needs. I want people who use services to have the ability to get them when they need them, especially during emergency situations. Increasing investments to support people in their communities is needed to help people live their best lives. These investments are necessary along with improving the direct care workers service systems to ensure high quality care for individuals.

#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.

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