The state House on Thursday narrowly passed a bill that would impose legislative reporting requirements on the nonprofit organization that serves as Arkansas’s federally mandated “protection and advocacy” agency for disabled children and adults, Disability Rights Arkansas.
If House Bill 1382 becomes law, the group’s internal documents would also be open to public scrutiny under the Arkansas Freedom of Information Act, which generally applies only to state and local government offices, agencies, employees and elected officials. The bill next heads to a state Senate committee after clearing the House in a 53-18 vote. Along with the “no” votes, 18 members voted “present” — effectively the same as a “no” — and 11 did not vote.
Subjecting a specific private nonprofit to legislative oversight and public records law is highly unusual, if not unprecedented. HB1382, sponsored by Rep. Jack Ladyman (R-Jonesboro) only targets Disability Rights Arkansas, or DRA, one of 57 protection and advocacy agencies in the United States and its territories. Congress created the protection and advocacy system in 1975 after Geraldo Rivera exposed horrific conditions for disabled children at Willowbrook State School on Staten Island, New York.
The bill would require DRA to submit biannual reports to the Hospital, Medicaid, and Developmental Disabilities Study Subcommittee of the Arkansas Legislative Council and the governor “regarding efforts to advocate for all individuals with developmental disabilities who live in a home- and community-based setting and not a [residential] facility,” as well as attend meetings of the subcommittee and provide information it requests.
Arkansas’s FOIA would also apply to DRA, a requirement that is legally dubious. It is unclear whether DRA would face consequences should it not comply with a records request. However, the governor does have the authority to transfer the P&A designation to another organization.
Similar legislation has passed in Ohio and North Carolina.
Protection and advocacy agencies have a federal mandate to monitor many different types of facilities — from prisons to mental health units to facilities for people with developmental disabilities — for regulatory violations, including maltreatment and abuse of youth and adults. They provide reports of their findings to various government agencies that oversee the different facilities. DRA, which is based in Little Rock, has 22 full-time staff and an annual budget of about $2 million.
A protection and advocacy agency may also sometimes assist with legal action against a facility housing disabled individuals where alleged wrongdoing has occurred. The nonprofits have no legal authority to close down a facility or to create up-to-date regulations.
When presenting his bill Thursday, Ladyman said DRA “has no oversight by the state of Arkansas while providing services to some of the most vulnerable citizens. They do good work in a lot of areas, but some people who they serve think they exhibit government overreach in some areas.” He did not elaborate on what the organization’s government overreach might be.
The legislation is being pushed by a statewide network of families and caregivers who support human development centers, or HDCs, the state’s residential facilities for people with developmental disabilities.
There are five state-run HDCs in Arkansas, in Booneville, Conway, Arkadelphia, Jonesboro and Bradley County. Together, they house about 1,000 individuals and are regulated by the Arkansas Department of Human Services.
It is this network, Families and Friends of Care Facility Residents, that appears to be the main impetus behind the bill. Its members fear that DRA wants to shutter human development centers and other programs for the developmentally disabled and feel the nonprofit discriminates against families and guardians who place disabled individuals in an institutional setting rather than trying to keep them at home.
Katrina Robertson is president of the Booneville Human Development Center parent chapter of the group and the mother of Noah, a resident at the facility.
“DRA implied that choosing residential care for Noah would strip him of his dignity, and they instead suggested I allow them to help secure two-better trained caregivers that could be with him 24/7,” Robertson said during the Tuesday meeting of the House Public Health, Welfare, and Labor Committee at which the bill was first introduced.
The family adopted Noah in 2014 when he was 9. Now in his early 20s, Noah “had a severe intellectual disability and exhibited complex, challenging behaviors primarily due to extreme abuse and neglect,” Robertson said.
The family hired caregivers, built Noah his own cottage next to their home, and sent him to public school, but as he grew older, his disabilities became harder to manage. Caregivers started to quit. Noah eventually ended up in a hospital emergency room for 45 days, then in a homeless shelter and eventually in jail. Robertson picked him up after a spot opened up in the Booneville HDC, where he has now lived for three years.
“I was overwhelmed with a sense of failure,” Robertson said. “Despite that they claim they do not hold a bias against [human development centers], [DRA’s] actions repeatedly contradict this assertion. They discourage congregate care and only offered to assist if I were to agree to a community placement, which had already proved to be inadequate and dangerous for Noah.”
Robertson said she hoped that by requiring DRA to attend legislative meetings and submit reports to lawmakers, it would “give an opportunity for guardians to have a voice.”
“Many states are getting rid of congregate care with disastrous consequences,” she said. “But that is not investigated or researched. Ultimately it is our goal to be able to state the reality of some disabled individuals’ situation and to be respected as guardians.”
“We are following in the footsteps of a few other states where parents and guardian groups have gotten tired of the resources that their loved ones depend on being dismantled and destroyed,” Robertson said.
DRA leadership said the organization did have contact with Robertson but was unable to assist her.
There was not any assist that could be provided since she was only open to facility placement,” DRA staff attorney Reagan Stanford told the Arkansas Times. “We are not a placement agency. We could not make a bed available in an HDC.”
Human development centers are not without controversy.
In Arkansas, they evolved out of children’s colonies, which emerged in the 1950s as homes for the severely disabled. Critics view human development centers as archaic institutions, effectively serving as repositories for severely disabled people to languish for their entire lives.
In 2009 and 2010, the U.S. Justice Department sued Arkansas’s state-run human development centers for violating the Olmstead Act, a Supreme Court decision establishing that unjustified segregation of people with disabilities is unlawful discrimination.
There have been numerous lawsuits against Arkansas HDCs for allegations of abuse of residents. In 2014, a family was awarded $600,000 after a relative choked to death in the Arkadelphia Human Development Center. The Alexander Human Development Center was forced to close in 2011 for providing inadequate care.
DRA monitors human development centers in the same way that it does other types of facilities that house individuals with disabilities. DRA leaders say it doesn’t just target institutional settings; it also investigates allegations of abuse for developmentally disabled individuals living in community settings, they say.
But supporters of the legislation, like Robertson, say the organization unfairly targets human development centers and makes assumptions about the type of care that would be most beneficial for individuals with profound intellectual and developmental disabilities. They also argue that since DRA receives federal funding, which could include taxpayer dollars from Arkansas, it should be required to report to the state Legislature.
DRA already provides reports to state agencies, such as the Department of Human Services, and is willing to meet with lawmakers anytime, DRA Executive Director Tom Masseau said during Tuesday’s committee meeting. The nonprofit also reports to numerous federal agencies as well as its board and is subject to regular audits, Masseau said.
“What will this bill change?” Massau asked. “We have supplied multiple reports to the Department of Human Services and to various members of the Legislature on various issues. Little to no action has been taken thus far. So my question is: The purpose of providing these reports is to what? Is it to look at what we are doing and ensure we are abiding [by federal law]? Or to look [at a case] of an individual who was malnourished at a HDC and the state took five months to investigate it?”
The legislation could raise legal issues should lawmakers request information that is subject to attorney-client privilege or federal privacy laws, like HIPAA. This “could have a chilling effect on our ability to represent individuals if we are required to collect that kind of information or provide whatever the committee wants,” Thomas Nichols, DRA’s legal director, said.
Opponents of the bill raised concerns that it creates a precedent for state government to require other private organizations to face legislative oversight.
“I too have a child with disabilities, so I understand the things that go along with that. However, I do have a question about this,” Rep. Denise Ennett (D-Little Rock) said. “Would this bill open the door for us to ask other non-governmental advocacy groups to be summoned to a committee meeting if they do not receive any state funds?”
Masseu, the DRA executive director, said the legislation creates a “slippery slope.”
“There are no other private nonprofit organizations in this state that have their organization specifically named in statute to come before a special committee to present information that is already readily available with no required action from the committee. … At what point does it stop if there are other nonprofits [lawmakers] are not happy with what they are doing?” he said.
Similar questions were raised Thursday before the House passed the bill.
“How is this not government overreach if we [the Arkansas Legislature] require of them what we require of no other private organization?” Rep. Nicole Clowney (D-Fayetteville) said. “Why is this not an issue of federal oversight and not Arkansas?”
“You’ll have to ask the feds that,” Ladyman said in response. “I don’t know.”
