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‘I’m fighting for my daughter’

They crowded into a conference room in the Erna Fergusson Library, and though perhaps only one more person, one more wheelchair could have been squeezed in, that was still not enough people to satisfy Ernestine Morales.

“I myself called 70 people and 70 people told me they’re interested, but when are they interested?” she lamented, though more than half as many as that were seated in the room. “I will not wait any longer. I am here because I’m fighting for my daughter. I’m fighting for the rest of us.”

She had some sympathy for those who, like her, are the primary caregivers for their developmentally disabled children but who, unlike her, could not find someone to care for their children or an easy way to transport their children to this meeting.

But this, Morales said, was too important to miss.

It was time to take the fight to court.

Next Friday
Meet the other plaintiff in the DD Waiver lawsuit.

The meeting was convened by the New Mexico Waiver Providers Association, one of a handful of grass-roots groups made up of the parents and other caregivers of New Mexico’s most vulnerable citizens – those too mentally or physically impaired to care for themselves – in the wake of a retooling of the state-operated, Medicaid-funded program that financially sustains them.

The latest revision of the Developmental Disabilities Waiver, or DD Waiver, program has progressed by fits and starts, thwarted by budget cuts, feeble outreach efforts and plenty of complaints. So far, the full revision’s rollout has been postponed from last July to last October to this March and now, perhaps, to May or possibly July.

Health Department officials say change is necessary to ensure that shrinking federal funds are fairly apportioned not just to the some 3,600 individuals now on the DD Waiver but to prepare for the nearly 6,000 who are on the waiver waiting list, some of whom have been there for a decade or more.

Monique Morales is one of some 3,600 New Mexicans receiving federal funds for her care through the Developmental Disabilities Waiver program. She is 45 but functions at a 2½-year-old level, says her mother, Ernestine Morales, left.

Monique Morales is one of some 3,600 New Mexicans receiving federal funds for her care through the Developmental Disabilities Waiver program. She is 45 but functions at a 2½-year-old level, says her mother, Ernestine Morales, left.

Health Department officials say they held several public forums in advance so that citizens could voice their concerns about the proposed changes. But many complained that meeting rooms were too small or state facilitators uninterested in what they had to say.

Even so, the state forged ahead, implementing ahead of the full rollout a new assessment tool called the Supports Intensity Scale, or SIS, that determines at what level services are required and funding is doled out.

But many family members and providers say the SIS is woefully out of whack, leaving an estimated 40 percent of all those who have been evaluated at risk of losing crucial services.

Groups such as the New Mexico Waiver Providers Association and others formed as a result, airing their concerns by staging protests, writing letters, making phone calls and making their presence known at the Legislature and in the Governor’s Office.

At this association meeting, held Feb. 25 in that library conference room, the group learned more about its newest way of getting its message across – a lawsuit filed Feb. 14 in state District Court in Santa Fe to stop the SIS and other changes in the DD Waiver program.

The lawsuit, which names Health Department Secretary Retta Ward and Human Services Department Secretary Sidonie Squier, seeks both a restraining order and a preliminary injunction to prevent the state from using the SIS until meaningful discussions with stakeholders – providers, family members, agencies and the developmentally disabled themselves – can be held.

It asserts the state’s use of the SIS violates recipients’ due process by failing to provide a chance for the recipients to be heard and a workable system in which to appeal.

“We’re just asking to stop, let’s fix this,” George Marquez Jr., attorney for the association, told the crowded room. “We already know it’s not going to work. There’s huge holes.”

Marquez said the SIS has been inconsistently administered. What information is gathered for the assessment and from whom varies widely as does the training and abilities of the person conducting the assessment, he said.

The association’s lawsuit names two plaintiffs, both adult children of association members. One is Ernestine Morales’ daughter, Monique, who underwent her SIS assessment in April 2011 and waited 13 months before it was returned.

“And when it did, I did not agree with it because she would be losing hours of therapy under the assessment,” Morales said, explaining that her daughter is 45 but functions as a 2 1/2-year-old because of her microcephaly, a disorder in which the head and brain are smaller than average.

Morales said she had wanted a reassessment but was told a second SIS could come back with an even higher score that could result in further service cuts. A second SIS cannot be appealed.

“I told the case manager that I was accepting the first score under protest because I was afraid of retaliation,” she said.

But she is not afraid to keep writing her letters, making her phone calls, lamenting that she has not yet rallied everybody in New Mexico behind her cause, not just for Monique but for the thousands of the state’s developmentally disabled citizens.

Give her and the other parents room time, though. And give them a larger room.

UpFront is a daily front-page news and opinion column. Comment directly to Joline at 823-3603, or follow her on Twitter @jolinegkg.
— This article appeared on page A1 of the Albuquerque Journal