Desperate For Help:

CW: Ableism, Abuse, & Neglect

The New York Times recently published an article about a young woman named Sabrina, who is autistic. The article highlights Sabrina’s parent’s difficulties with caring for her at home as her needs have increased. I found the article to be very one-sided, and it was difficult to read.

The New York Times only reported from the parent’s point of view. Readers never hear from Sabrina, herself. Disabled people should be able to tell their own stories. It saddens me that she was unable to. After all, the article is about Sabrina, but she was never interviewed. In fact, no autistic people were interviewed in the article. 

The more I read the article, I realized that it highlights a much bigger problem that people with disabilities and their families are dealing with nationwide. There is not enough help for people with disabilities. This means that families often struggle to care for their loved ones at home.

In March 2021, more than 800,000 people in the United States were on waiting lists for home and community-based services provided by Medicaid. The states with the most people on waiting lists are mostly in the south and east. In 2015, 35 states had waiting lists for waiver services. Texas had the most people on such waiting lists (232,068), while North Dakota had the fewest people on such lists (3). There are no waiting lists in Delaware, D.C., Hawaii, Idaho, Massachusetts, Missouri, New Jersey, New York, South Dakota, or Washington.

Long waiting lists often mean people with disabilities and their families are without critical support for years. Families are often exhausted when dealing with their loved one’s needs. In some cases, people have extensive needs. Some families decide to place their loved ones in residential settings such as group homes because of inadequate support in the home.

Kim Oakley placed her autistic son James in a group home in California after not receiving enough support to manage his complex needs at home. While living at the group home, James was left unsupervised. Subsequently, he sustained a hematoma to his ear following an episode of self-injurious behavior, which required surgery to repair.

Kim ultimately decided to bring James back home and began a years-long fight for services. In addition to autism, James also has epilepsy and requires protective supervision around the clock. He receives in-home nursing care. The family had to fight for years to receive nursing care for James. Families shouldn’t have to fight for years to receive services.

I am one of the millions of Americans who benefit from home and community-based services provided by Medicaid. I am fortunate to live in Massachusetts, which has no waiting list for services. Medicaid’s PCA program allows me to live in my own apartment rather than in a group home.  In the past, it has been difficult for me to find PCAs. I went through three different PCAs in three semesters of college. I began to wonder if I’d be able to attend college at all, because of this.

Low pay makes it difficult to find home healthcare workers. According to the Bureau of Labor Statistics, PCAs and other home healthcare workers in the United States only make $13.02 per hour. The New York Times reports that the average hourly income in six states is just $11, and one in five home care workers is considered to be living in poverty. People can sometimes make more money working at a fast-food restaurant than in direct care positions.

Medicaid’s home and community-based services allow people with disabilities to live at home instead of in an institutional setting. Medicaid is a lifeline for so many people like me, and must be expanded to accommodate all Americans who need help. Without help, people are often forced into unsafe environments, and this can have devastating consequences.

Sources:

Bernes , Michael J, and Patricia Callahan. “In Illinois Group Homes, Adults with Disabilities Suffer in Secret.” Chicago Tribune, Chicago Tribune, 20 Apr. 2022, https://www.chicagotribune.com/investigations/ct-group-home-investigations-cila-met-20161117-htmlstory.html.

Children and Adults with Developmental Disabilities have same legal rights under the Lanterman Act”. YouTube, uploaded by Kim Oakley, 4 Mar. 2018, https://www.youtube.com/watch?v=Cw-MMb66GnM

Diament, Michelle. “Waiting Lists May Be Eliminated for Disability Services Provided by Medicaid.” Disability Scoop, Disability Scoop, 22 Mar. 2021, https://www.disabilityscoop.com/2021/03/22/waiting-lists-may-be-eliminated-for-disability-services-provided-by-medicaid/29252/.  

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, https://www.nytimes.com/2021/09/25/business/home-health-aides-industry.html

“Home Health and Personal Care Aides : Occupational Outlook Handbook.” U.S. Bureau of Labor Statistics, U.S. Bureau of Labor Statistics, 8 Sept. 2021, https://www.bls.gov/ooh/healthcare/home-health-aides-and-personal-care-aides.htm.

“Number of Persons on Medicaid 1915(c) HCBS Waiver Wait Lists, 2016.” Center On Disability , Center On Disability , 31 Dec. 2016, https://centerondisability.org/ada_parc/utils/indicators.php?id=9.

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