A Shocking Discovery
Recently, I visited a congregate care facility in Pennsylvania for children with complex medical needs. It was neat and tidy with kid-friendly pastel colors. It resembled a hospital but not the kind you visit for a short time. Though the staff mentioned that the typical stay is meant to be six to eight weeks, there are no permanency plans in place for these youth and they are often expected to stay much longer.
About half of the children had left for school before I arrived while the rest were still lying on their beds as I walked through the halls. They spend their days and nights in this facility. Some come from as far as Virginia, North Carolina, and even Nebraska and rarely ever see their families again after the initial drop off (if at all). During my tour of the facility, I passed by a five-month-old baby, alone in her crib, not being held. When one of the residents came out to remind the staff that he had turned 18 today and was now a man, I wished him happy birthday.
Attempts to Move Away from Institutionalization
The Perkins Institution, the first residential facility for people with cognitive disabilities, was founded in 1848. After over a century of the continued institutionalization of children and adults with developmental disabilities, The Association of Persons with Severe Handicaps (TASH) was founded with a vision to end aversive behavior modification and close all residential institutions for individuals with disabilities (Rehabilitation Research, 2001).
Original Caption: “Oh! why does the wind blow upon me so wild? Is it because I’m nobody’s child?” Phila Henrietta Case Creator: Burton Blatt and Fred Kaplan (photographer) Date: 1974
By 1990, the Americans with Disabilities Act (ADA) was passed to protect the civil rights of people with disabilities. Nine years later, in what became known as The Olmstead Decision, “the Supreme Court held that the unjustified institutionalization of people with disabilities is a form of unlawful discrimination under the ADA,” making it explicit that community integration should be a first resort (U.S. DHHS).
The Reality Today
About 25 years post-ADA, though drastically changed, institutions for children with disabilities still exist. They exist under a new guise, as congregate care or nursing facilities. It is proposed that nursing homes have even begun to warehouse children with disabilities (MacVicar, 2014).
Though conditions in these institutions are not visibly horrifying like the ones of the past, the bright and shiny appearance of these facilities cannot hide the fact that the children who live in them are raised in an isolated environment, without the social support of a family or community.
Licensed clinical social worker, Katie Chandler and NPR correspondent, Joseph Shapiro (2012) provide some startling statistics on the issue:
- Thousands of children with physical and mental disabilities live in institutions
- 6,000 children under the age of 21 are living in American nursing homes
- People aged 31-64 are the fastest growing group in nursing homes now, representing 14% of all people in nursing homes
Marcello Martinez has to drive an hour to visit his son Andrew at Kidz Korner nursing home. America Tonight
The Solution
In many cases, families would be able to care for their children at home if they were provided with the service of an in-home aide or visiting nurse to help with daily activities like lifting, dressing, and cleaning their children. However, insurance providers tend to refuse to cover these types of services and leave parents with the only option of sending their children to institutions, which is costly and unnecessary. (Shapiro & Chandler, 2012).
Florida pays nursing homes up to $550 a day for children, which is 20 percent more than full-time nursing care at home and costs taxpayers $250,000 to $300,000 a year (MacVicar, 2014). So why not pay less to keep children at home instead?
Steven Greenwell transfers his daughter Caitlin from her bike to her chair. Caitlin, who is confined to a wheelchair, needs aid for everything she does. (Liz O. Baylen/Los Angeles Times)
Some states have started initiatives to do just that. Medicaid has begun offering waivers for home and community-based services to families that have children with disabilities (Medicaid, 2014). Among these programs is Care at Home, which offers services to families who are ineligible for Medicaid due to income level (OPWDD, 2013). Also, many states have received funding to start Medicaid programs that offer long-term, effective solutions to families through the Money Follows the Person grant (Medicaid, 2014).
However, Florida turned down an offer of $38 million to be used for this grant program, most likely to challenge the Affordable Care Act and in an effort to depend less on Medicaid funding (Shapiro & Chandler, 2012). Is this justifiable when there are 200 children living in nursing homes across the state with parents who want to bring them home?
References
MacVicar, S. (2014, March 9). Watch: Kids with special needs: a ‘gravy train’ for Florida nursing homes? America Tonight. Retrieved from http://america.aljazeera.com/watch/shows/america-tonight/america-tonight-blog/2014/3/19/florida-childrenagravytrainfornursinghomes.html
Medicaid. (2014). Retrieved from http://www.medicaid.gov/
Office for People with Developmental Disabilities (OPWDD). (2013). Care at Home Medicaid Waiver for Developmentally Disabled Children. Retrieved from http://www.health.ny.gov/publications/0548/care_at_home_dev_disabled.htm
Rehabilitation Research & Training Center on Independent Living Management. (2001). Disability History Timeline. Retrieved from http://isc.temple.edu/neighbor/ds/disabilityrightstimeline.htm
Shapiro, J. (Interviewer) & Chandler, K. (Interviewee). (2012). Disabled Kids Living Isolated Lives in Institutions [Interview transcript]. Retrieved from http://www.npr.org/2012/10/16/163018620/disabled-kids-living-isolated-lives-in-institutions
U.S. Department of Health & Human Services (U.S. DHHS). (n.d.). Serving People with Disabilities in the Most Integrated Setting: Community Living and Olmstead. Retrieved from http://www.hhs.gov/ocr/civilrights/understanding/disability/serviceolmstead/
Social Justice & Beyond 