CW: Institutionalization
Finn Carlin’s 24-year-old brother, Ryan has Down Syndrome. The family wants to find somewhere for Ryan to live in Charleston, SC. However, there are limited options for someone with a disability. Ryan works three days a week, but he doesn’t make enough money to live on his own.
Down syndrome is one of the most well-known chromosomal disorders in humans, caused by chromosome 21 trisomy. Several body systems are affected, resulting in clinical signs such as intellectual disability, short stature, flat face, flat nasal bridge, pronounced epicanthic folds, up slanting palpebral fissures, and a protruding tongue.
Down syndrome is also associated with an increased risk of having various health issues. Heart defects, sleep apnea, and leukemia are common comorbidities among people with Down syndrome. People with Down syndrome have varying degrees of intellectual disability ranging from mild to severe.
South Carolia operates 50 institutions for people with intellectual and developmental disabilties. There’s one in each county. Ryan’s mother would like him to remain in his community. South Carolina residents can qualify for a home and community-based services waiver through Medicaid.
Examples of covered services under a Medicaid waiver include adult day programs, home modifications, home-delivered meals, home healthcare, and transportation. Unfortunately, there is a waitlist for these waivers in South Carolina as is the case in much of the U.S. The wait can be anywhere from seven to fifteen years according to Ryans’s mother. She put him on the waiting list in 2016.
Pam Loudon’s daughter P.J. has a Medicaid waiver. P.J. has multiple disabilities including cortical visual impairment. Cortical visual impairments (CVIs) are a group of visual impairments that can interfere with learning and social interaction. These disorders can impair any or all of the following components of visual function: central vision, peripheral vision (in all or part of the visual field), movement perception, gaze control, visual direction of movement, visual attention, attentional orientation in space, visual analysis and recognition, visual memory, and spatial cognition.
P.J. also requires skilled nursing care. Unfortunately, she hasn’t had enough nursing coverage since 2014. London worries about who will care for her daughter as she ages.
Two housing communities for disabled adults are under construction in the state. Oak Tree Farm in Conway, and Church Street Place in Greenville. 100 adults will be able to live in the two communities. It is still not enough.
Advocates are hoping South Carolina adopts the Olmstead Plan. South Carolina is currently one of 14 states in the country that doesn’t have this plan in place.
In June 1999, the Supreme Court handed down the historic Olmstead v. L.C. decision, which required all states to end the unnecessary segregation of people with disabilities and ensure that they receive services in the most integrated environment possible. Two disabled women living in nursing homes in Georgia, Lois Curtis and Elaine Wilson, were involved in this case. Curtis and Wilson asked state officials to allow them to live in the community in their own homes.
Susan Jamieson of Atlanta Legal Aid filed a lawsuit on their behalf when the state denied their request. The Supreme Court heard the case after several appeals. Services for people with disabilities must be offered “in the most integrated setting possible,” according to the Supreme Court ruling.
Until that plan is in place, parents don’t know where their children will live. Loudon doesn’t want P.J living far away. She wants to be able to see her daughter regularly.
“If he has nowhere to go and life, or nobody to take him to work anymore, he’ll have no purpose, Renken Carlin,” says, “I hope to have a community for Ryan to give him that purpose.”
Millions of people in the United States, including myself, rely on Medicaid-funded home and community-based services. I rely on the services of a PCA to live at home. The PCA program is funded by Medicaid. Medicaid allows people to live in their communities as opposed to an institutional setting.
Medicaid must be expanded, and waiting lists must be eliminated. Without Medicaid, people are routinely forced into dangerous situations, which can have devastating consequences.
Sources:
Carlin, Finn. “Renewed Push for Disability Housing Communities in SC amid Limited Options.” South Carolina Public Radio, NPR, 7 Mar. 2023, https://www.southcarolinapublicradio.org/sc-news/2023-03-07/renewed-push-for-disability-housing-communities-in-sc-amid-limited-options.
Chokron, Sylvie et al. “Cortical Visual Impairments and Learning Disabilities.” Frontiers in human neuroscience vol. 15 713316. 13 Oct. 2021, doi:10.3389/fnhum.2021.713316
“Home- and Community-Based Services.” Centers for Medicare & Medicaid Services, United States Department of Health and Human Services, https://www.cms.gov/outreach-and-education/american-indian-alaska-native/aian/ltss-ta-center/info/hcbs.
“How Two Women Changed Thousands of Lives.” Disability Rights Texas, Disability Rights Texas, 17 June 2019, http://www.disabilityrightstx.org/en/2019/06/17/olmstead20th/.
MacLennan, Sarah. ‘Down’s Syndrome’. InnovAiT, vol. 13, no. 1, SAGE Publications, Jan. 2020, pp. 47–52, https://doi.org10.1177/1755738019886612.
Shapiro, Joseph. “Lois Curtis, Who Won a Landmark Civil Rights Case for People with Disabilities, Died.” NPR, NPR, 5 Nov. 2022, https://www.npr.org/2022/11/05/1134426128/lois-curtis-who-won-a-landmark-civil-rights-case-for-people-with-disabilities-di.
Startin, Carla M., et al. ‘Health Comorbidities and Cognitive Abilities across the Lifespan in Down Syndrome’. Journal of Neurodevelopmental Disorders, vol. 12, no. 1, Jan. 2020, p. 4, https://doi.org10.1186/s11689-019-9306-9.