October is National Disability Employment Awareness Month. I have been looking for employment since 2019. I’ve applied for hundreds of jobs and haven’t received any responses. I was turned down by Stop & Shop, Trader Joe’s, and Yankee Candle, among others. Too often, employers do not hire me after learning that I have Cerebral Palsy. However, there is another barrier to employment that is often overlooked.
Many people require help with activities of daily living. In my case, I hire PCAs to assist me with showering, toileting, and getting dressed, among other things. Without their help, employment wouldn’t be possible.
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.
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 without using the restroom would be impossible. It could also lead to health problems, including urinary tract infections and kidney stones.
A urinary tract infection (UTI) is a bacterial infection that infiltrates the otherwise sterile urinary system and is one of the most frequent bacterial infections worldwide. Urinary tract infections (UTIs) include infections of the urethra (urethritis), bladder (cystitis), ureters (ureteritis), and kidney (pyelonephritis).
Kidney stones are mineral deposits free or attached to the renal papillae in the renal calyces and pelvis. They develop when a mineral in the urine becomes supersaturated, and they have crystalline and organic components. Most stones are composed primarily of calcium oxalate, with many forming on a foundation of calcium phosphate known as Randall’s plaques, which are found on the renal papillary surface.
Kidney stone formation is common, with rates as high as 14.8% and rising and a recurrence rate as high as 50% within the first five years of the initial stone event. Obesity, diabetes, hypertension, and metabolic syndrome are risk factors for stone formation, which can result in hypertension, end-stage renal disease, and chronic kidney disease
Complicating matters is that my personal care assistants are paid for through Medicaid. Many people with disabilities rely on Medicaid because they cannot get health insurance elsewhere or because other insurance does not cover the services they require. Home- and community-based services, such as personal care attendants, are not covered by Medicare or private insurance.
I rely on Massachusetts Medicaid to pay for my PCA services. Unfortunately, the annual cost is nearly $60,000. I couldn’t afford to pay for my care out of pocket. Therefore, I have no choice but to stay within the income and asset limits Medicaid sets.
Medicaid is a lifeline for millions of Americans, including myself. Medicaid provides access to home and community-based services not covered by private insurance. However, people like me shouldn’t be forced into poverty to receive desperately needed services.
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. Employers must recognize that caregiving is intrinsically linked to employment. The fact that people require assistance should not preclude us from finding work.
Sources:
Barber, Amelia E., et al. ‘Urinary Tract Infections: Current and Emerging Management Strategies’. Clinical Infectious Diseases, vol. 57, no. 5, Sept. 2013, pp. 719–724, https://doi.org10.1093/cid/cit284.
Khan, Saeed R et al. “Kidney stones.” Nature reviews. Disease primers vol. 2 16008. 25 Feb. 2016, doi:10.1038/nrdp.2016.8
“Personal Assistance in the Workplace.” Job Accommodation Network, Job Accommodation Network, https://askjan.org/topics/persassist.cfm
Williams, Angela. “It’s Time to End Employment Discrimination for People with Disabilities.” The Hill, The Hill, 19 Oct. 2020, thehill.com/blogs/congress-blog/labor/521631-its-time-to-end-employment-discrimination-for-people-with.