Institutional change is never easy. When it comes to the changes afoot for the state’s disabled population, insiders expect a “bloodletting.”

SFR’s review of the emails, comments, questions and letters of protest pouring into the Department of Health shows the misinformation and general confusion surrounding the Medicaid-funded Developmental Disabilities (DD) Waiver.

A state task force charged with rewriting rules for the waiver will make recommendations next month.

It’s a topic as emotionally charged as it is fiscally relevant.

The therapy and residential services provided under the DD Waiver can cost up to $82,545 per person per year.

Furthermore, there are more people on the state’s years-long waiting list than there are currently receiving services.

“As everybody’s known for years, this is unsustainable,” Byron Bartley, president of Door of Opportunity Inc.—a disability care agency in Artesia—and a member of the state’s DD Waiver advisory committee, tells SFR.

Bartley also is a member of the task force that is charged with rewriting New Mexico’s waiver program. According to Medicaid requirements, each state’s waiver must be rewritten every five years. It’s rare for that rewrite to translate into significant change. But this year, Bartley says, will be different.

“With costs going up and the economy going down, finally it’s time to do something,” Bartley says. “It’s long overdue.”

Redefining how New Mexico cares for its developmentally disabled is no easy task, he notes—not only because of the waiver’s regulatory intricacies, but also because of the emotional element attached to caring for a vulnerable population.

“It’s going to be a very interesting journey,” Bartley says. “We can get there, but there’s going to be some bloodletting.”

The bloodletting, as it were, began back in January, when the DOH proposed deep cuts to “family living."

Under family living, family members can serve as trained, paid caregivers for their disabled relatives. Heated opposition from family caregivers prompted the department to back down, and it promised to allow public comment before making decisions about the cuts. Nonetheless, general trepidation is still prevalent among family living providers.

“I want to stress that if they were to take my monies away, there’s nobody that would work for $3 an hour, 24/7,” Ernestine Morales, a retired woman who earns $2,200 a month to provide 24-hour care for her mentally disabled daughter, Monique, says.

“How many people would clean an adult when she’s vomited at 2 am?” Morales wonders. “How many people would do it for that amount?”

Morales says she’s most worried about a rumor that cycled through the disabled community earlier this month that the DOH was considering barring family members from providing care for their relatives.

“We have never considered that,” DOH spokeswoman Deborah Busemeyer tells SFR.

Not that it would be unprecedented. Though most states do allow family to serve as caregivers, a handful do not—in part because family living, as provider Fritzi Hardy puts it, is “something that already happens: families caring for families.”

But Hardy, who serves on the state-supported Family Living Task Force and chairs the volunteer New Mexico Association of Family Providers, says eliminating family living wouldn’t fly in New Mexico, where more than 1,600 families have well-established and cherished roles as caregivers. What’s more, Hardy says, it hardly makes sense to cut family living. The per-person cost of family living care is roughly half of that for people in “supported living”—group homes with professional staff.

The best option for cost-saving, according to both Hardy and Bartley, is the Supports Intensity Scale, a needs assessment tool currently used in disability programs in 16 states and as many countries.

The SIS, Bartley says, would provide an objective system for quantifying exactly which services an individual needs. Currently, disabled people are lumped into three broad “levels of care”—a system Bartley says can create excess.
“Everybody’s been pushed to more expensive services, just to keep people totally safe,” he says. Up to one-third of the supported living clients his agency serves, Bartley estimates, could fare just as well in “independent living”—a third, less costly system in which disabled people live largely on their own.

With the help of the SIS, Hardy says, the new waiver could be a way “to pay for what you need, not what you want.”

Final recommendations for the new waiver rules will be released by the committee in early September, according to Busemeyer.

By Dec. 1, the DOH will submit its recommendations for the new waiver to the Human Services Department for consideration. HSD, in turn, will send the rewritten waiver to the federal Centers for Medicare & Medicaid Services. If approved, the changes would be implemented next July.

But a survey of correspondence sent to the DOH lays bare the still-simmering fear, uncertainty and resentment surrounding the program.

“Messing with the DD Waiver is one of the WORST things you can do, and we will not vote for you again,” one letter reads.

Another expresses vehement resistance to the idea of cutting family living.

“YOU SHOULD BE ASHAMED OF YOURSELF AT FORCING PEOPLE INTO HOMES THAT ARE MORE INSTITUTIONALIZED,” the author, a family living case manager, writes.

Another writer begs for her child to be put on the waiver, while a fourth fears programs will disappear entirely.

“Please we need the waiver,” the writer pleads in looping, awkward cursive. “[I]t meets my needs right now I do know it needs some work but don’t take it away.”

That’s hardly the goal, according to Bartley. The reason for scrutinizing the waiver is to get people off the waiting list. Busemeyer tells SFR that under DOH’s current budget, there’s no possibility of doing that next year, unless the Legislature increases DOH’s budget or adjustments are made to the program to fine-tune assessments and free up resources.

But Morales still worries about any change to the delicate balance she’s worked out to keep Monique at home.

“Nobody could give her the care her parents give,” Morales says. In fact, she’s convinced that’s why Monique, who has microcephaly—an abnormally small head that impedes brain development—has lived so long.

In a way, she’s thriving. It’s a searing Friday afternoon, and Monique has just returned from her weekly physical therapy appointment at the pool—“She loves the pool,” Morales says.

Slowly, Monique labors down the stairs using two low banisters her father built for her. He helps her down, and watches as she makes her way into the kitchen.

“How can you tell me,” he says, “it’s not easier and better for us to take care of her—in her own home?”

His daughter is nonverbal, but she draws close, watching him speak. When he stops talking, she gives him a kiss.