Do You Know Why Independent Living Is So Important to Those with Disabilities?

One of my biggest fears is that one day I could end up being forced to live in a nursing home. Medicaid allows me to live at home because of PCA services. I don’t want to have to live in a nursing home. I am 22-years-old and want to live in my community.

PCAs are vital for me, and millions of other disabled Americans. In Massachusetts, PCAs are currently paid $17.71 an hour. Unfortunately, this is a high salary when compared to most states. According to the New York Times, in six states, the average pay is just $11 an hour, and one in five home care workers live below the poverty line. Nationwide, home healthcare workers make an average of just $13.02 an hour, according to The Bureau of Labor Statistics.

In New York recently, disabled people lobbied for a raise to $22.50 an hour for home care workers. Unfortunately, this is not what they received. Instead, they received a gradual raise of $15.00 per hour. In my opinion, home health care workers should be compensated fairly for the importance of their work. Home health care workers help those with disabilities get out of bed, shower, and eat their meals. They keep us alive.

Can you imagine if you had to live in a nursing home because you have a disability? The idea is terrifying for me and others who are disabled. In a nursing home, I fear that I could be neglected or forgotten about. I wouldn’t be able to go shopping or out to eat. Not being able to see my family and friends would be devastating for me. I have close bonds with my aunts, uncles, grandparents, and many other family members and friends. If I went into a nursing home, those relationships would deteriorate over time.

Facilities such as Willowbrook have been closed for decades now. People with disabilties were not properly cared for in these state-run institutions. There wasn’t enough staffing. Facilities often had hundreds of residents. People were often given only a few minutes to be fed and weren’t bathed regularly.

Two residents in Georgia institutions sued the state in 1995, claiming that they had the right to care in the most integrated setting possible and that their unnecessary institutionalization was discriminatory and in violation of the Americans with Disabilities Act. The issue eventually reached the United States Supreme Court, which decided in Olmstead v. L.C., 527 U.S. 581 (1999), that unnecessary institutionalization of people with disabilities is discrimination under the Americans with Disabilities Act.

Without cases such as Olmstead v. L.C., people with disabilities may be unable to live in their communities. Personally, I am grateful that the institutionalization of disabled people was ruled discriminatory. I would have a much poorer quality of life if I were forcibly institutionalized.

I want to live my life like anyone else does. I hope one day to have a job, perhaps get married, and have a fulfilling life surrounded by loved ones and friends. Living in my community allows all of this to be possible.


Donovan, Liz, and Muriel Alarcón. “Long Hours, Low Pay, Loneliness and a Booming Industry.” The New York Times, The New York Times, 25 Sept. 2021,

“How Two Women Changed Thousands of Lives.” Disability Rights Texas, Disability Rights Texas, 17 June 2019,

“Home Health and Personal Care Aides : Occupational Outlook Handbook.” U.S. Bureau of Labor Statistics, U.S. Bureau of Labor Statistics, 8 Sept. 2021,

Holden, Stephen. “A Plea For Treating People Humanely .” The New York Times, The New York Times, 14 Feb. 1997,  

Sequeira, Robbie. “’Vulnerable Leading the Vulnerable’, Burgos Visit with Home Care Worker Spotlights Fair Pay Act.” Bronx Times, Bronx Times, 23 Mar. 2022,

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