Written by: Katie Hunt Thomas
Hello! This year, my columns are bite sized briefings on the different issue areas that are the focus of our advocacy. My last column focused on Access to Housing, and this column focuses on Access to Health Care. Enjoy your reading!
Access to Health Care
Arguably, access to health care is the most important issue affecting people with disabilities in the U.S. For many people with significant, long-term disabilities, managing their disabilities with regular medical appointments, the correct medication, the correct durable medical equipment, and in-home care is what allows them to live independently in the community. For a person with a disability, the difference between a generic and on-brand medication can be the difference between being able to walk independently and needing a mobility aid. The difference between having access to a direct care worker or not can be the difference between being able to stay in their home or being forced into an institutional setting.
Barriers and Civil Rights in Health Care
It seems like people with disabilities would not struggle with access to medical care. Doctor’s offices and hospitals are all around us. Yet, even thirty-six years after the Americans with Disabilities Act, many people with disabilities struggle to access appropriate medical care due to limits and bureaucratic barriers in insurance coverage, architectural barriers in doctor’s offices and hospitals, out of pocket costs, transportation barriers, and a lack of disability awareness in the medical community.
The most important legal change in the last thirty-six years affecting access to health care was the passage of the Affordable Care Act (ACA) in 2010. The pie-in-the sky goal of the affordable care act was to expand health insurance coverage to 100% of the U.S. population. It expanded coverage through a combination of private and public insurance measures including expanding eligibility for Medicaid to the working poor so that people could work without losing medical insurance; allowing parents to keep their children on their medical insurance through their college years; and creating a market place where private insurers could compete with each other so that consumers purchasing insurance would have transparency and choice.
The change that most affected people with disabilities, however, was that the ACA made it unlawful for insurance carriers to refuse to cover “pre-existing conditions” or conditions that an insured had prior to acquiring the insurance. Before the act, pre-existing conditions exclusions had left many people without insurance coverage for the most significant, ongoing disabilities and made getting a job, where someone might have to switch insurance companies and thus lose coverage, impossible or difficult. The ACA also expanded anti-discrimination provisions against people with disabilities in medical settings receiving federal financial assistance.
The Ability Center’s Goals
At the Ability Center, our long-term advocacy goals in health care for people with disabilities are to ensure that enough home and community based services are offered to allow people to live in the community rather than in institutional settings, to increase the accessibility of doctor’s offices and other medical providers, and to watch for roll backs to Medicaid services, which could result in more people with disabilities unable to access appropriate health care in the community.
This year, our advocacy program is focused on access to durable medical equipment, increasing the number of direct care workers in the community, watching for the state-level effects of HB1, a federal law passed last year that rolls back funding for Medicaid services, and the accessibility of doctor’s offices.
Legislative Task Force on Direct Care
One of our largest health care projects is working on a bill that would establish a Legislative Task Force on Direct Care. Many people with disabilities rely on direct care workers to remain independent in their homes, individuals that will come to their home and assist them in a variety of tasks like getting out of bed, getting dressed, using the bathroom, transportation, and support in the workplace. However, due to the structure of our Medicaid system, there is a shortage of direct care workers in Ohio. Many people with disabilities cannot find a worker, or if they do, because of the low rates of pay and difficult nature of the job, many direct care workers are unreliable. It is not unusual for a worker to fail to show up for a shift or to leave the professional altogether for a job in food service that has better rates of pay and more reliable hours.
In a 2022 Disability Needs Study by The Ability Center, 23.97% of respondents stated that they have trouble finding an in-home provider. 40.51% of respondents reported that in-home providers are unreliable and sometimes do not show up for their shifts. 53.4% of respondents stated that there is high turn over, and their providers change often. 29.11% stated that they are sometimes left without an in home provider for weeks at a time. And 55.7% of respondents stated that they have trouble finding a provider that they are comfortable with or that can address their needs.
If passed, our bill would create a legislative task force that can review the issue, anticipate what the need for in home workers is going to be, and form cross-discipline solutions to the issue. In the advocacy community, we know that, in order to have a state that fully meets its obligations under the ADA and the Olmstead decision, we need to have a strong direct care workforce that can serve aging Ohioans and Ohioans with disabilities. This bill would take a step in that direction. Watch for advocacy alerts around HB 530, which would create the long-term care workforce legislative committee.
