Care And Employment: An Inextricable Link

October is National Disability Employment Awareness Month.  People who do not have disabilities are three times more likely to be employed than those who do. Last year, 19.1% of people with disabilities in the United States worked.

I have been looking for employment since 2019. I have filled out hundreds of job applications and haven’t found anything. I was rejected from Stop And Shop, Trader Joe’s, and Yankee Candle, among others. Too often, employers don’t want to hire me once they find out I have Cerebral Palsy. There is, however, another barrier to employment that is not discussed enough.

I require assistance with daily activities and hire PCAs to assist me with showering, toileting, and getting dressed, among other things. Employers always deny this accommodation. Workplaces are supposed to provide reasonable accommodations to employees with disabilities. However, they are not obligated to assist with personal care needs. Employers have told me that this is a liability concern.

The absence of a PCA is also a barrier to employment for persons like me who require assistance with daily living tasks. My PCAs help me use the bathroom, dress and bathe. They also drive me wherever I need to go in my wheelchair van.

I wouldn’t be able to work without access to a PCA. I wouldn’t even be able to get to my workplace without their help. In addition, working 40 hours a week without using the restroom would be impossible. A non-disabled employee wouldn’t be expected to work without access to a bathroom. I wouldn’t want to experience incontinence while I worked. Incontinence would be unsanitary and uncomfortable.

For people who require nursing care, this is even more crucial. Individuals with a tracheostomy or ventilator often require constant monitoring. A nurse may need to assist with suctioning to help them clear their airways. Medically complex employees could die without nursing care.

Complicating matters is the fact that my personal care assistants are paid for through Medicaid. Many people with disabilities rely on Medicaid because they can’t get health insurance elsewhere or other insurance doesn’t cover the services they need. Medicare and private insurance, for example, do not cover home- and community-based services such as personal care attendants.

Without Medicaid, my home care would be more than $50,000 annually. I’d go bankrupt trying to stay alive. I couldn’t afford to pay out of pocket for my care. I have no choice but to remain within the income and resource limits of these programs. Forced poverty, however, is not a solution. I shouldn’t have to receive SSI to receive Medicaid.

For those with disabilities, there are many obstacles to employment. Without reliable care, some of us would be unable to get out of bed or get dressed. Work would be the last thing on someone’s mind if they were stuck in bed. Employers must recognize that caregiving is intrinsically linked to employment. The fact that people like myself require assistance daily should not preclude us from finding work.

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