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.