Advocates for the disability community will meet at the state Capitol Wednesday in search of solutions after a recent rape at a care home caught international attention and outrage.
The story now leading lawmakers to contemplate legislation to protect patients who cannot defend themselves began on Dec. 29 when a 29-year-old patient at Hacienda HealthCare in Phoenix gave birth. While news reports have described the woman as comatose, an attorney representing her family told The Arizona Republic that she has “significant intellectual disabilities” but is capable of some limited movement, such as facial gestures. The bottom line: She was unable to defend herself or report the abuse, and center staff had not known she was pregnant until the moment she gave birth.
Now, advocates want to hear what others in the community have to say.
The Arizona Developmental Disabilities Planning Council will host a public meeting at the historic Capitol building on Jan. 23 to discuss what can be done to prevent the sexual abuse of people with disabilities.
Rep. Jennifer Longdon, D-Phoenix, said the Hacienda investigation has rightfully captured everyone’s attention, and that’s a good thing in her mind. The case has made everyone slow down and focus on the issue.
But what may be new territory for some is an ongoing issue in the disability community.
“We can do better by the people who live in these facilities,” Longdon said. “We need to do more to ensure their safety, their dignity and their well-being. And whatever we do legislatively, we need to keep that in mind. These are people, not ‘those people.’”
Longdon hopes the public meeting will give people the chance to speak plainly about their experiences and existing roadblocks to effective care – including the state Legislature.
Some of her fellow lawmakers are already working on legislation they hope can help the state learn from its mistakes.
Rep. Nancy Barto, R-Phoenix, introduced House Bill 2117 to allow intermediate care centers like Hacienda to install cameras in common areas. Hacienda serves infants, children and young adults who are “medically fragile” or have developmental disabilities, according to its website.
And Sen. Heather Carter, R-Cave Creek, wants to eliminate a state law from the 1990s that allowed such centers to operate without a state license. Instead, the carveout permitted such centers to operate under federal regulations set forth by the Centers for Medicare and Medicaid Services.
Carter could not say why that exemption was ever granted in the first place.
“That’s been the question that everybody is asking,” she said. “Obviously, we’re researching why that happened. But almost irrelevant of why it happened, we’re not going to allow that to remain in place moving forward.”
Whatever the reason, Carter said she wants to give statutory authority to the state to license those centers and give the state Department of Health Services the ability to perform its own inspections apart from its role with CMS.
Longdon said the Legislature should do something – eliminating the carveout for places like Hacienda being a “no-brainer” to start with – but lawmakers need to take their time.
“What happens occasionally is that well-meaning folks who are horrified and want to do something right away can sometimes take steps that don’t fully address the issue or miss the main point,” she said.
She said the investigation of Hacienda will bring to light issues that people who have lived in residential centers have already been talking about for years.
Longdon may have an advantage in that regard, having lived in a residential center for a time. She uses a wheelchair after being paralyzed in a random, drive-by shooting in 2004.
She said the state is lacking comprehensive rape crisis services for victims with disabilities and opportunities for patients and their families to be educated on what sexual abuse looks like, what healthy boundaries look like and what to do if they suspect abuse.
“We’re moving in the right direction,” she said. “We need to go slow enough to get it done right, but I don’t think we can hurry up fast enough at the same time.”
The Associated Press contributed to this story.