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.)

Index:

New Mexico’s Developmental Disabilities Waiver Program by the Numbers

Number of people currently on the waiting list to participate in New Mexico’s Medicaid Developmental Disabilities Waiver Program: 4,732 Number of people who currently participate in the DD waiver program: 3,883 Projected total cost of the waiver program in fiscal year 2011: $307 million Share of total DD waiver costs paid by the federal government: 75% Number of waiver participants currently in family living services: 1,683 Number of waiver participants in supported living (group homes): 1,077 Average yearly cost for a waiver participant in family living: $34,888 Average yearly cost for a waiver participant in supported living: $97,027 Top amount by which the DOH planned to cut reimbursements for family living providers: 25% Top amount by which the DOH planned to cut supported living: 2% Number of full-time state employees the DOH’s Developmental Disability Supports Division added between 2006 and 2008: 26 Number of people legislators hoped to add to the DD waiver program when they appropriated an extra $9.4 million to the DOH for moving people off the waiting list: 216 Number of people who have been moved off the waiting list since that appropriation: 16

(Numbers from the New Mexico Department of Health and disability advocates)

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.
 

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“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.”

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“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.

STATE EXPENSES: JACKSON LAWSUIT
(According to documents furnished by the New Mexico Department of Health and the General Services Department’s Risk Management Division)

Dept. of Health:	2009 (contracted)	2010 (projected)
Health care for developmentally disabled people (not necessarily Jackson class members)	$2,556,008.00	$2,422,514.00
Therapists contracted by DOH	$371,889.20	$371,889.20
Court-appointed monitors/experts	$842,484.30	$842,484.30
Plaintiff attorneys and court fees	$424,000	$496,200
Other	$693,398.67	$694,478.04
TOTAL	$4,887,780.17	$4,827,565.54
General Services Dept.:
Defense attorneys	$94,345.84	N/A

SFR