A2J Stories: Defending Persons With Disabilities In The Pandemic And Beyond
One of the great hardships imposed by the COVID-19 pandemic has been the separation of individuals from their hospitalized loved ones – a frustrating severance of a basic human desire to comfort and care for our beloveds when they are ill. The situation has been even more stark, however, for families whose hospitalized relatives have intellectual or developmental disabilities.
Luciene Parsley, Legal Director at Disability Rights Maryland, says that her organization was repeatedly contacted during the pandemic by parents of hospitalized young adults with intellectual and developmental disabilities. “Many of these young adults had communication issues, had autism, had other medical needs that made it really important for someone who knew them well–who knew how they communicated–to be there, to be an intermediary for doctors.” Parsley stressed the critical role a caregiver serves in this situation, not only with communication, but providing “the support [a patient with such disabilities] needs just to be able to function while they are in the hospital.”
In one case, “We ended up going to the governor’s office and working with the Maryland Department of Health,” Parsley recalls. The group’s advocacy led to a directive “allowing families who had a member with a developmental disability to have at least one support person be with them in the hospital, as long as they followed recommended Covid protections….This helped relieve a lot of stress that families were under with a loved one in the hospital.”
The work of Disability Rights Maryland is vast, addressing legal matters and providing advocacy at the national, state, and local levels. Recently, the group partnered with other advocacy organizations to represent Baltimore residents who use wheelchairs and struggle to navigate cracked, obstructed, un-ramped, and otherwise non-ADA compliant streets of the city. When streets are impassable by wheelchairs, users are often forced to travel in the street, exposing themselves to possible injury by motor vehicles.
During the pandemic, Disability Rights Maryland assisted The Arc of Maryland in filing a class action lawsuit against several counties, alleging the COVID-19 vaccine programs of the local governments were discriminating against persons with developmental and intellectual disabilities. Although the state government had classified persons with these diagnoses as priority 1B to receive the vaccine, the local county websites had excluded them from this privileged category, delaying their access to vaccination.
Executive Director Robin C. Murphy speaks proudly of her “small but mighty staff” and their work addressing the intersections of disability, race, and poverty.
“Intersectionality is really critical,” Murphy says. The organization’s education team frequently encounters “systemic issues, where there’s an intersection between disability and people of color, particularly Black and Latinx students, where there’s significantly more school discipline imposed….We are in a position as attorneys and advocates to request information, to request data, to suss that out.”
Advocates have long complained about increased rates of seclusion and restraint for students with disabilities. Murphy plainly calls such practices “traumatizing to children.” Disability Rights Maryland’s managing attorney, Leslie Margolis, received national recognition this summer when the American Bar Association adopted her proposed resolution against “unreasonable restraint, seclusion, and searches of children” in schools.
The organization is also at the forefront of discussions concerning police reform, advocating for appropriate “crisis response and diversion programs” for calls concerning persons in mental health crises. “We see tons of people who end up in the criminal justice system, not because they were intending to commit any crimes, but because of interactions with [responding officers] and lack of mental health services,” says Parsley.
Lack of understanding of disabilities by traditional law enforcement can prove fatal. Parsey recalls working with a “distraught” mother who had called police to help transport her son to the hospital when he was having a mental health crisis, as they had done numerous times before. This time, however, police decided to take a confrontational approach when locating the man in the family’s backyard.
“He was killed in less than a minute of police arriving on the scene,” Parsley says grimly.
Disability Rights Maryland now serves on a committee required by a 2017 consent decree between Baltimore City and the United States Department of Justice. That court-enforceable agreement was designed to improve policing through building community trust and partnerships. Disability Rights Maryland advises on an “overhaul of police policies of responding to mental health crises,” Parsley explains. The organization is working with Behavioral Health Systems Baltimore to create a “more robust crisis response” system, including a hotline to access a mobile crisis unit. Another initiative has been reforming the way 911 calls are processed, seeking to “route calls away” from a criminal justice response to a behavioral health response.
What inspires the attorneys at Disability Rights Maryland? Murphy says she originally saw herself becoming a social worker, and began her education and training for that career. But after working at a group home where young boys were simply labeled “deprived delinquents,” she began to feel a call to lawyering. “As opposed to being a counselor – ‘let’s talk about how discrimination makes you feel,’” she explains, her thinking became, “‘let’s take it to court and vindicate you.’”
Others in the organization were inspired by personal experiences living with persons with disabilities. “I grew up with a mom with disabilities,” says Parsley, recounting stories wherein her mother, who was likely misdiagnosed with polio, “wasn’t allowed to go to school.” Parsley’s grandfather had to sign a liability waiver at the school for her mother to attend, because her supposed polio made the little girl “a fire hazard.”
“I just fell into the work,” Parsley says, saying it carries “personal meaning.”
“I love, more than anything else, getting to know clients,” she says. “You meet people at difficult times in their lives, but it’s great to build that relationship and help them make changes. It’s such a positive feeling to work with people to make those changes in their lives.”
Murphy acknowledges that legal services work “isn’t as lucrative” as corporate practice, “but it is very rewarding.” She encourages attorneys considering entering the field to take advantage of networking opportunities in bar association volunteer lawyer activities.
“The best thing to do is find great mentors,” she says.