Observations From Below: Light is the Best Disinfectant

In the mid-1800’s, the famous social reformer Dorothea Dix describes living condition in one our country’s earliest asylums. She recounts, “more than nine-thousand idiots, epileptics, and insane in these United States, destitute of appropriate care and protection. Bound with galling chains, bowed beneath fetters and heavy iron balls, attached to drag-chains, lacerated with ropes, scourged with rods, and terrified beneath storms of profane execrations and cruel blows; now subject to jibes, and scorn, and torturing tricks, now abandoned to the most loathsome necessities or subject to the vilest and most outrageous violations.”

You would think that even after over 100 years of Dorothea Dix’s observation, living conditions for people with disabilities would be a lot more suitable. One of my favorite axioms I learned in college journalism is “sunlight is a great disinfectant.” This means if you publicly bring attention to a problem, it often improves the situation due to the mounting pressure it incurred. One of the best examples that highlight this phenomenon occurred in 1972 at the Willowbrook State School in Staten Island, NY. Willowbrook was one of the largest institutions in the world that assisted people with all types of disabilities. It housed as many as 6,000 people with disabilities at one time. The conditions in this facility were well below those in regular prisons of the time, often permeating with the stench of urine, feces, and infection. It was overcrowded and very much understaffed. Less than 20% of the patients received an actual education, while the rest of the population were too old, or the staff wasn’t properly trained to handle individuals with intellectual or developmental disabilities.

One brave doctor who had been recently fired from Willowbrook for encouraging the parents to demand better conditions for their children/loved ones reached out to the local ABC affiliate. A young reporter named Geraldo Rivera took the case. He brought a camera and filmed a series of investigative exposés about the conditions of the facility, which sparked a demand for civil rights towards all living creatures. The series won a Peabody award and shocked the citizens of NY, including senator Jacob Javits. Senator Javits campaigned to incorporate a Protection and Advocacy (P&A) System in the renewal of the federal developmental disabilities legislation enacted in 1975.

P&As exist to protect the civil rights of those with disabilities. They also have a sweeping power to sue or otherwise advocate for those with a disability who are in need of assistance. Every US state and territory has them, although they go by different names. For example, in North Carolina, they go by the moniker of Disability Rights North Carolina (DRNC). 2017 also marks the 10 year anniversary of the DRNC assuming the role of the P&A of NC. I might be biased because I am the secretary to the board of directors for the DRNC, but from my perspective, I see the staff change lives every day for the better.

In the old days, I would have been a good candidate for an institutional placement. Although I have a disability, my mind is fully functional. Disability Rights North Carolina works to keep people like me out of these types of institutions and in my community instead. In order to remain active in my community, I need services provided by the state through a program called Innovations. Recently a Managed Care Organization tried to change the process for assessing people’s needs. The change would have indirectly reduced services, so DRNC sued and eventually reached a settlement which expands protections for waivers recipients just like me. Due to the settlement, people like me are:
· Are empowered to request the services they want, in the amount they want them;
· Understand that the Support Needs Matrix is a guideline and not a binding limit on services;
· Are made aware of their due process rights; and
· Understand their rights and responsibilities under the Waiver.

Another DRNC story that comes to light is that of Bethany Smith. She showed just how far we’ve come since the days of Willowbrook when patients had no rights. She struggled with an eating and self-injury disorder. One day while she was a patient at Cherry Hospital in Goldsboro, Smith met with Disability Rights NC. Bethany met attorney Kristine Sullivan, who made the rounds at various local disability centers, monitoring their work and looking for patient neglect. Sullivan taught Smith self-advocacy skills, so when she was inappropriately and illegally restrained one day, she knew who exactly to contact during a situation such as this. DRNC began to investigate and found many standard procedures were being improperly handled at the hospital. Cherry Hospital was notified of its wrongdoings and was threatened with a cutoff of federally assisted funds unless these infractions were corrected and handled appropriately in the future. Bethany Smith is now living in the community and dreams of one day of becoming a patient advocate.

As the board and staff celebrate many stories like Smith’s and my own, we know that there’s much more to be done. DRNC just participated in a project with the NC Council on Developmental Disabilities looking into individuals with DD who have been undiagnosed and therefore have not received any services. The staff worked tirelessly to address the issue, but It was so complicated that they have only managed to save a couple of people at this point. I won’t rest until everyone who is inappropriately in a care home is in a community of their choosing.

I want close this by pointing out that P&As have been working for 45 years now under Democratic and Republican bipartisanship. Much of our funding comes from the federal government. As the White House administration shifts here soon, it’s vital to the disability community that the P&A funding maintains or even increases. As I’ve said in many of my blogs, disability is a bipartisan issue. We all need to remember that as we move forward.

For more information on P&As, please visit disabilityrightsnc.org or ndrn.org.