A special state committee appointed to address mounting problems with disability programs will finally meet for the first time this month—behind closed doors. That means disability advocates—whose criticisms of the Department of Health's approach to its disability programs sparked the need for a committee— won't get to hear its discussions.

Fritzi Hardy cares for her disabled adult daughter Rachel under a Medicaid funded program called the Developmental Disabilities (DD) Waiver. The $2,150 Hardy receives each month allows her to stay home and care for Rachel, who can have up to 20 seizures in a day. Hardy also is a longtime disability advocate, as well as the chairwoman of the volunteer Association of New Mexico Family Providers.

Hardy was among disability advocates who balked at proposed changes and funding cuts to the program when those were proposed by the Department of Health in January.

The heart of the conflict is rooted in tension between Hardy's form of caring for her daughter, which is known as "family living," and "supported living" programs. In the former, family members are essentially paid for taking care of disabled relatives in the home, versus in the institutions covered under the latter program.

In large part as a response to advocates' concerns, Gov. Bill Richardson appointed a "blue-ribbon" advisory committee specifically dedicated to evaluating the family living program.

Yet, despite many requests for information about the committee, Hardy says she's still in the dark.

“I have never figured out who the [advisory] committee is,” Hardy tells SFR. “I’ve never gotten any follow-up from anybody about the committee.”

Fellow advocate Sandy Skaar, who also cares for a disabled daughter through the DD Waiver program, says she didn’t even know such a committee existed until SFR called her.

Thus far, the committee has met only once, “by phone, very briefly, a couple weeks ago,” longtime disability advocate and committee member Polly Arango tells SFR.

Fritzi Hardy (left) cares for her daughter Rachel under the DD Waiver's family living program.

"At this point, it's just an advisory group being facilitated by the governor's deputy chief of staff," Arango says. Though Arango says she expected the group to have a broad focus, "Now it's restricted to figuring out how to better assess and decide the levels of support that the family living providers will get."

According to Arango, other members of the advisory committee include Ed Kaul, the director of ARCA, an Albuquerque-based disability care organization; disability activist Terri Muth; former Human Services Division General Counsel Paul Ritzma; State Auditor Hector Balderas and Albuquerque lawyer Mark Jarmie.

SFR was unable to reach Muth, Ritzma or Balderas before press time. When SFR spoke with Kaul and Jarmie, both

confirmed that the committee had met over the phone, but

neither elaborated.

"I'm not going to be discussing things with the press," Jarmie says. "That's just who I am."

Hardy and Skaar aren't the only advocates in the dark about the committee.

Even James Jackson, executive director of the advocacy group Disability Rights New Mexico, says he hasn’t heard much.

"I think the group is just getting going," Jackson adds.

Indeed: But when it meets for the first time on June 16, the meeting will not be open to the public.

"They're making decisions on vulnerable people that are being cared for by family, and providers don't have a voice?" Skaar says. "Even shooting an email out to the family providers would carry a larger voice…How can we help channel voices to the chosen few that are going to be in this meeting? That would be my question. Those are important decisions being made, and advocates and family need a voice."

There will be, however, some opportunities in the coming weeks for disability advocates to weigh in.

The Legislative Finance Committee is scheduled to evaluate the finances of Sandy Skaar (left, with daughter Lisa) says she's worried about cuts to family living providers.

DOH's entire Developmental Disabilities Program on June 9. And another advisory committee will specifically examine the waiver program on June 16—particularly its 4,000-plus waiting list.

Proposed changes to the waivers are what first sparked outrage among disability providers. Many criticized what they saw as inequitable cuts: Some family living providers stood to lose 25 percent of their stipends. Supported living, on the other hand, would have suffered a much smaller cut.

“Family living providers already have had enormous cuts,” Skaar tells SFR. “Even a small cut affects them hugely, because most family living providers are parents who aren’t able to work because they’re staying home, taking care of a child. To cut them even more is heartbreaking,” she says.

Hardy says she attended the last meeting on the waiver program and was impressed.

“It looks like it’s going to be a roll-upyour-sleeves-and-do-some-work type meeting, not a sit-around-and-grandstand [one],” Hardy tells SFR. “It’s going to be, ‘What are we going to do?’” While three committees hunker down with a laundry list of concerns and funding questions, the DOH is facing a federal lawsuit—also regarding family living stipends.

On May 30, a coalition of Las Cruces family living providers called Grace Requires Understanding, Inc., filed a federal complaint against Health Secretary Alfredo Vigil, Attorney General Gary King, Gov. Bill Richardson and others.

According to Board President Victor Duran, GRU takes issue with the DOH's alleged failure to publicize a change to the way in which family living providers receive reimbursement for substitute caregivers.

GRU's attorney, Santa Fe-based Marina Cordova, says part of the purpose of the complaint is "to prevent the Department of Health from taking action and changing rules without involving the public."

That's something Cordova says "has been a pattern with the Department of Health." She cites the proposed January budget cuts to family living as an example—and notes that GRU also wasn't told about the advisory committee.

To Skaar, this pattern is evidence of a broken system.

"The communication of the state needs to drastically improve," she says. "I find that very sad, that we have to read the newspaper to find out what's happening."