In October 1985, a developmentally disabled man in his late 20s drank a cup of oven cleaner. Despite severe burns, he survived.
He also unwittingly kicked off one of the longest lawsuits in the history of the state of New Mexico.
Today, the Jackson lawsuit—named for Walter Stephen Jackson, and filed after his near-poisoning—has dragged on for nearly 23 years and cost the state millions of dollars.
It also has changed the face of how New Mexico treats its developmentally disabled. Because of the Jackson suit, care has shifted from state-run institutions to intimate, community-based programs that allow disabled people to interact with the public, and to programs that pay family members to care for them.
There's little doubt the Jackson lawsuit brought necessary change. But today, its legacy is one of conflict. As the Jackson plaintiffs and the state continue to wrangle over the court's final remaining requirements, the list of New Mexicans waiting to participate in the state's developmental disability program—4,732—now exceeds the 3,883 people actually served.
On top of that, the New Mexico Department of Health has stated its intentions to cut funding for the very community programs that revolutionized developmental disability care.
"There's going to be a crisis on our hands," Deborah Davis Pierson, who cares for her developmentally disabled son under the Developmental Disabilities Waiver Program, tells SFR. "There's going to be people who can't afford to live anymore, people with disabilities that either have to move into group homes or be left on their own."
“There’s going to be a crisis on our hands.”
Indeed, to disability awareness advocates, the cuts seem designed to return New Mexico's most vulnerable population to the institutional horrors that prompted the Jackson lawsuit in the first place.
Court documents describe Walter Stephen Jackson as "profoundly retarded [with] a seizure disorder." They also reveal a history of abuse and neglect during the 22 years he lived at the state-run Los Lunas Hospital and Training School, including the oven-cleaner incident, as well as two broken arms.
He was not alone. In 1986, four Los Lunas residents suffered "abrasions and puncture wounds to the head," records show. One resident, "George," had 60 accidents and committed two rapes in less than a year.
"Another resident was sexually assaulted and died two days later," the court decision reads—an incident that went "unexplained and unaccounted for by the institution."
In May 1989, court observers saw the residents "running around the room, self-stimulating, screaming, and hitting each other." Thirty-nine residents were punished or restrained with ammonia, water mist, straitjackets and the "papoose board," a flat board with fabric arm and leg restraints. Others were seat-belted to toilets "because only one staff member was available to assist six residents." One had nine separate infirmary visits for human bites.
The problems, according to the court, stemmed from a dearth of staff, resources and training—and resulted in abuse, discrimination and unsafe conditions. In a lengthy, sweeping decision, US District Judge James A Parker ordered the state and lawyers representing approximately 700 formerly institutionalized developmentally disabled people to come up with a plan to relocate residents into surrounding communities and to improve institution conditions by September 1991.
In the mid-'90s, the state closed the Los Lunas and Fort Stanton Hospital and Training Schools and relocated all remaining institutional residents. By 1997, the state and plaintiffs had agreed to standards that ensured community care didn't become just a spread-out version of institutionalization. In 1997, the Albuquerque Journal reported that the agreement would end the case "within about two years."
But 13 years later, the two sides are still at odds—and New Mexico's developmentally disabled population is still in limbo.
By 2005, the state and the Jackson lawyers were back in court: The state had failed to meet the requirements of the plan to which both sides had agreed. Today, Jackson attorney Steven J Schwartz says the state is still out of compliance with approximately half of the original, court-ordered improvements. (The DOH puts the number closer to 30 percent.)
The requirements range from training disabled people and helping them find jobs to hiring physical therapists, training staff in behavioral therapy and providing assistive technology.
"The most graphic example," Schwartz says, is the state's promise to make sure people who have specific problems, such as difficulty swallowing, get the right care. Schwartz says that hasn't happened, and that a major cause of death among Jackson class members is aspiration, or choking.
"Class members have been dying at an alarming rate as a result of the lack of adequate health care," Schwartz says.
He acknowledges that some of the early compliance problems may have had to do with lack of resources and infrastructure. But since then, he says, there's been "a significant increase in resources and clear plans" for improvements in the past decade.
The noncompliance, then, isn't due to a lack of means.
"It takes focus, determination and leadership," he says, to finish a case like this. Schwartz, who is the executive director of the Massachusetts-based Center for Public Representation, has participated in similar civil rights cases across the nation.
"Consistent with other states, it should be over," Schwartz says of the Jackson case. "We want this case to be over because, when the case is over, people's rights are protected. We have zero interest in continuing this case for the sake of continuing it. It serves people with developmental disabilities best to have their rights implemented, service systems OK and cases done."
That's what the DOH says as well.
"We have been working hard to disengage all items, and we are committed to finishing the settlement during this administration," DOH spokeswoman Deborah Busemeyer writes in a Feb. 1 email to SFR. "We need to end court oversight so we can devote this funding toward providing services to people."
But as the state and Jackson lawyers wrangle, the entire developmental disability program is in upheaval.
In January, the DOH shocked the disability awareness community when it announced sweeping budget cuts for the Developmental Disabilities Waiver Program, an optional Medicaid program for the state's disabled.
The program, commonly referred to as the DD waiver, is administered by the state but funded largely (75 percent) by the federal government through Medicaid. Developmentally disabled people who qualify are eligible for two main types of care.
Supported living care generally refers to permanent residence in a "group home" with other disabled people. As of the 2008 fiscal year, New Mexico had 78 residential programs. The family living model is just what it sounds like—living at home with one's family (or a foster family).
The supported living model costs more because it relies on the staff and resources of care organizations that contract with the state. Family living providers are usually parents who receive a stipend—a minimum of $2,150 a month—so they can stay home to take care of their children.
Family caregivers were shocked that the DOH proposed to cut their stipends by up to 25 percent, while minimizing cuts to supported living. The department said the cuts would save $9 million a year. In addition to reducing stipends for family care, the department planned to cut by 2 percent services like therapy and daytime programs, and to impose stricter criteria for extra care for people with extreme needs.
"Our clients and people who support them will have to re-prioritize how they spend their annual budget," Health Secretary Alfredo Vigil said in Jan. 6 statement. "People will continue to receive the same quality of services."
Program participants and disability advocates were incensed—not just at the cuts, but also at what many describe as Vigil's flippant language.
"He said the quality of services will stay the same. We all know that's not even possible!" Pierson says. "It's definitely going to have a huge impact on the quality of services."
Pierson is a family living provider. Her 38-year-old son Chris has Prader-Willi syndrome, a genetic disorder that stunts growth and cognitive development. Since Prader-Willi can also lead to uncontrolled eating—people with the disorder never feel full—Chris needs constant supervision. Living in a group home is difficult, Pierson says, because Chris needs all the food locked up—which diminishes the rights of people who don't have Prader-Willi.
Under the proposed cuts, Pierson's stipend would be reduced by 15 percent. Since losing her husband last year, Pierson says 15 percent might be enough of a pay cut to force her to get a job outside the home, which would in turn force her to put Chris in a group home. She's done it before and has the horror stories to prove it—staff members driving residents around in agency vehicles while drunk, neglecting and even stealing from Chris.
"The state is putting people with disabilities and their families in the position where we won't have a choice anymore: We will have to institutionalize our children again," Pierson says. "You either take care of them because you have a way to make money or you put them in a group home—which is an institution; there's really no difference—and then you work to make an income. You can't do both."
Pierson worries that if funding cuts gut the family care option, New Mexico could return to pre-Jackson conditions.
"The people making these decisions need to look back at what happened with the Jackson lawsuit, at the way things used to be when people were institutionalized," Pierson says. "They're so far detached from the situation that they can't identify with the daily, yearly ordeals that people with disabilities go through."
Fritzi Hardy, the mother of a developmentally disabled woman on the DD waiver and a leader in the advocacy community, says the DOH is ignoring the cost savings and efficiency of family care—not to mention that group homes have higher turnover than family living, she says, because "we're family!"
Hardy sits on the Independent Family Living Task Force and says she learned at a December meeting that supported living costs the state much more per person than family living does. So cutting a program that's cheaper and has fewer staff needs and less turnover doesn't make sense, Hardy says. Further, the federal government pays 75 percent of Medicaid costs, so every dollar the state cuts means $3 less in federal funding.
"We have a problem right now," Hardy says. "The DD waiver is an incredibly effective program, [but] we need to figure out a way to get people off the waiting list, to make it more cost-effective." Like other advocates, she believes the state is concentrating the cuts in family care because it has a bias against that side of the waiver program.
DOH disputes that conclusion.
“We’re creating a system of haves and have-nots, people who can afford things and people who can’t."
"We don't have a bias in favor of group homes," Busemeyer says. "We support families choosing what's right for them and for the person who needs services." Busemeyer acknowledges that the proposed cuts drew more heavily from family living, but "that doesn't mean we favor group homes," she says.
Rather, Busemeyer says, some group homes "barely function financially," so cutting their funding could eliminate the supported living option for people who need 24-hour assistance.
Sandy Skaar, whose daughter Lisa lives in a group home, says additional prescription coverage cutbacks also will hurt disabled people. One of Skaar's expenses, for instance, is birth control—Lisa was raped in a group home in another state; "God forbid she ever be raped again," Skaar says—and while her family can pay for it out of pocket, not all families can.
"It's horrible what they're doing," Skaar says. "We're creating a system of haves and have-nots, people who can afford things and people who can't—[but] in both populations you have vulnerable people."
Pierson and Hardy both met with Gov. Bill Richardson in January to protest the DOH plan. Pierson was so upset that she started a blog as a call to action to the community of caregivers and family members.
Within days of the DOH announcement, advocates had turned out en masse to protest. The legal directors of the New Mexico Center on Law and Poverty and Disability Rights New Mexico sent letters to the DOH that questioned the legality of the cuts. (State statutes require advance public notice for broad program changes, which the lawyers claimed hadn't happened.) The DOH defended itself in press releases and in an op-ed by Vigil in the Albuquerque Journal, but resistance, which culminated in a four-hour-long, highly emotional hearing before the Senate Finance Committee in mid-January, was too much.
On Jan. 19, the DOH retreated, promising to consider the input of disabled people and their families before proceeding with any changes.
But while disability advocates were busy fighting off budget cuts, an assault on Jackson case lawyers was gaining steam at the capitol.
In January, state Sen. Rod Adair, R-Chaves, introduced a bill that would stop all payments to plaintiffs' lawyers in the Jackson lawsuit.
Adair, a member of the Legislative Finance Committee, had learned in the fall that the DOH had opted not to spend $9.4 million in state funds aimed at moving people off the DD waiver waiting list. The money, DOH officials told the committee, was not "recurring," which suggested the possibility that the same appropriation wouldn't be there next year. If it wasn't there—or if the federal government reduced its share of Medicaid funding—the DOH could end up having to remove new waiver beneficiaries.
While some lawmakers disputed the claim that the money wasn't recurring, Adair took a different tack. The reason the DOH couldn't add people to its waiver program, he claimed, was because Jackson lawsuit costs were bleeding it dry. More than $5 million a year "just for plaintiffs' attorneys' fees," Adair said, was money the DOH could have been using on its financially strapped developmental disability programs.
"Enough is enough!" Adair told a handful of reporters at a press conference on the Senate floor in January. "The state has been in compliance with the original objectives of the Jackson lawsuit since 1999, by all accounts."
(Actually, even the DOH agrees it's not yet in total compliance.)
In January, DOH spokeswoman Busemeyer confirmed to SFR Adair's $5 million figure, noting, "That's for the plaintiffs' fees, and that does include other court—expert witnesses and other court-related costs."
Actually, SFR's review of the $5 million, according to numbers provided by the DOH, shows that plaintiffs' attorneys' fees are less than $500,000 annually.
The rest of the $5 million goes to programs Busemeyer says were created as a result of the Jackson suit, but now serve New Mexico's entire developmentally disabled population. The largest contracts, ranging from $450,000 to more than $1 million, go to court-ordered monitors, DOH-contracted therapists and health care programs run through the University of New Mexico.
Ann Tilford Sims, a longtime plaintiffs' attorney on the Jackson case, calls Adair's claims "wildly outrageous." In fact, she says, after the DOH communicated its budget problems, the plaintiffs' attorneys agreed to reduce their fees.
But Adair took that as proof that the attorneys had been overcharging the state all along and publicly suggested the possibility of fraud.
On Feb. 7, another lead attorney for the Jackson plaintiffs, Peter Cubra, wrote an op-ed in the Albuquerque Journal "to correct the record." Cubra writes that his team's initial payments were only a third of the $3 million the state paid a Washington, DC-based legal team to (unsuccessfully, Cubra notes) defend it. Cubra also puts the average payments to plaintiff attorneys at $466,000 annually. (Cubra did not respond to SFR's requests for comment.)
Ultimately, Adair's bill died in the Senate Judiciary Committee.
So, it seems, did the possibility of DOH spending the $9.4 million in question on disability programs. Legislative analyst Gary Chabot tells SFR that part of the money may be re-appropriated for other programs. The rest will go unspent and revert to the state's general fund in June.
That money may be gone, but lawmakers aren't taking any chances in 2010: Both legislative budget bills for the 2010 fiscal year include $2 million "that may only be used to enroll new clients" from those still on the waiting list.
As of press time, a state budget had yet to be approved. As such, Busemeyer says, no cuts are currently on the table. As for public hearings on the cuts DOH proposed in January, they have not yet been scheduled, she says, "but that is the next step."
There's no question that ending the Jackson case would free up money to actually serve developmentally disabled New Mexicans.
The question is: Why has it taken two-plus decades and counting?
Peter Blanck, the chairman of Syracuse University's Burton Blatt Institute, a disability rights law and research organization, has spent years working on cases like Jackson. He notes that a similar case in Wyoming ended in five years. New Mexico's should have taken comparable time.
"Given the rural structure and the family connections, you would think New Mexico, like Wyoming, would have been one of the leaders in this area, not lagging behind," Blanck says. "If you tallied up the legal fees in the last 20 years, you could probably serve everybody in the state and their families in beautiful homes in the community."
Blanck doesn't think the lawyers—from either side—are at fault. Instead, he says, the failure comes from higher up.
"It takes leadership," he says, to finish cases like Jackson, "from the highest level—from the governor's office on down."
Roberta Koenigsberg, the senior director of legal affairs at the YAI National Institute for People with Disabilities, agrees.
"Somebody really has to want to make it happen," Koenigsberg says of creating a better system for developmentally disabled people. That's what it took in New York, where Koenigsberg lives—a more populous state than New Mexico, she notes, and the state where one of the first landmark disability cases was filed in the '70s.
Now, Koenigsberg says, "There's so much training out there. Nobody's asking [New Mexico] to reinvent the wheel."
Since New York's famous Willowbrook case, whose back story bears striking resemblance to Jackson, there's been a concerted effort to move developmentally disabled people from institutions into communities, Koenigsberg says.
"It helps both the person with the disability and the community," she explains. "If you're locked in a large institution, you don't go into a grocery store and learn to buy a cup of coffee; you don't learn how to interact. If you never have a [disabled] person in that grocery store buying that cup of coffee, then no one sees that person as a person."
And a community that effectively ignores part of itself is unfair—and, as of 1990, when the Americans with Disabilities Act passed, illegal.
To Blanck, the DOH's proposal to cut family services looks like a conscious decision to put its resources in a one place.
“If you tallied up the legal fees in the last 20 years, you could probably serve everybody in the state and their families in beautiful homes in the community.”
"It's odd, given that New Mexico sounds like it has some momentum going in individual living, that they would be retrenching back to a more congregated care setting," he says. "Group homes can serve an important purpose, but they shouldn't be the default mechanism, and it shouldn't be an all-or-nothing game. The ultimate goal is to focus on the values of the system: choice, quality and fiscal responsibility."
For some people, Blanck says, the best option is a group home but, for others, family living is just preferable.
Take Rachel, Fritzi Hardy's daughter, who has several severe seizures a day. Her parents are used to it; they clean her up if she falls, but they don't stop her from roaming around, watching the birds on their six-acre property. Hardy worries that in a group home, staff or other residents might not understand Rachel's needs.
It's an understandable worry.
In the latest review of all Jackson plaintiffs in the region (which includes Santa Fe County), a court-appointed community monitor found that more than half of the staff in residential programs (group homes) "could not adequately describe the [disabled] person's health-related needs." More than 70 percent of those people had health needs that weren't adequately addressed.
On the bright side, 16 of 17 staff members interviewed "knew" the people under their care.
SFR
