When the state Health Department decided not to spend $9.4 million — approved by the Legislature and signed by the governor — to bring more people into a program that allows Medicaid to pay for services related to developmental disabilities, it set the stage for a political battle over budget priorities and separation of powers.

But to the families of the 4,800 people on a waiting list to get these services — some of whom have been on the list since before Bill Richardson was governor — the news that the Health Department doesn't intend to spend that money is nothing short of betrayal.

"This was a state-sponsored act of criminal negligence," said Elena Junes, the mother of an autistic child in Santa Fe who has been on the developmentally disabled waiver waiting list for more than seven years.

Many family members of loved ones on the waiting list plan to attend a meeting of the Legislative Finance Committee today, at which the Health Department's budget will be discussed. State Sen. Sue Wilson-Beffort said in an interview last week that she intends to ask department officials about that allocated money at the meeting.

When the money initially was approved during the special session of the Legislature last year, Richardson said in a news release, "The additional funding will help provide services to more than 400 New Mexicans, both children and adults, who have spent years on the waiver waiting list."

But the worsening state revenue crisis prompted the Health Department to hold off on spending the money. "The total budgetary picture is so bleak that any statements or commitments we had (last year) just don't hold today," Health Secretary Alfredo Vigil told a reporter last week. "It's not a question of good guys vs. bad guys."

The program allows Medicaid money to be used to provide services for the developmentally disabled, such as daily living and job-skills training, and residential services. It's considered a "waiver" program because it's not an entitlement program. States can limit the number of people served. About 4,300 people are in the program.

Here's a look at some of those who have been on the waiting list for years.

Shonto Junes, Santa Fe: Shonto, 9, was diagnosed with autism when he was 22 months old, his mother, Elena, said Friday. In February 2002, the family's application for the developmentally disabled waiver program was accepted. "At the time, we were told it would be two or three years before he got into the program," Elena Junes said.

Shonto is a cute kid in good physical health who has been receiving occupational and speech therapy for most of his life, though the family can't afford the recommended eight hours a week of therapy. He's also involved in a special-needs program at El Dorado Elementary School.

Someone has to be with Shonto at all times. Therefore, Elena and her husband, Delvin Junes, had to adjust their work schedules. Delvin works nights with a program for the developmentally disabled. Elena works days for a catering company.

Shonto is a handsome boy and very charming, Elena said. But he does have "meltdowns." When this happens, she said, he sometimes scratches people and sometimes has to be physically restrained from running away.

Shonto is growing, and Elena worries about the day when he's too large for her to handle. What Shonto needs — and what Medicaid would pay for if he were in the program — is a behavioral therapist, Elena said.

She also said Shonto could use training for independent living so he can be a productive citizen when he becomes an adult. "He needs round-the-clock, one-on-one supervision," she said. "He's going to need a lifetime of help."

Ryan Zamites, Las Cruces: "Ryan doesn't have an off button." That's what his mother, Melissa Zamites, said of her 9-year-old son. Ryan is autistic. He also suffers from a sleep disorder, immune system issues and developmental delays, Melissa said.

Ryan couldn't function in school, so Melissa is home-schooling him. "I had to quit my job," she said.

Ryan has been on the waiting list for three years. Melissa said getting on the developmentally disabled waiver program would mean he could get needed medical equipment and different types of therapy. Melissa worries about who would take care of her son if she were to die.

Like other parents interviewed, Melissa said keeping children on a waiting list for so many years is a severe disservice. "Early intervention is a necessity," she said. "Waiting until they're teenagers to get these services is a crime."

Christian Wylie, Albuquerque: Now 12 years old and a seventh-grader at Desert Ridge Middle School, Christian, who is autistic, has been on the waiting list for more than eight years, his mother, Cinda Wylie, said Friday. His father died two years ago, and shortly after, his mother lost her job.

"He hasn't had any insurance for about six years," Cinda said. Even when she was working, she couldn't afford to put Christian on her insurance. "It would have been an extra $500 a month," she said.

Christian has been able to receive a therapy called applied behavioral analysis though a grant program, Cinda said. "Without services like this, these kids would be nowhere."

Christian is "a wonderful artist," his mother said. But he has a hard time putting sentences together and expressing himself verbally, which leads to frustration.

The waiver program would get her son the insurance he needs as well as cover some of the therapy he needs, Cinda said.

When she learned that the $9.4 million wasn't going to be used to get people off the waiting list, she "was just crushed," she said. "We have waited for so long."

Contact Steve Terrell at 986-3037 or sterrell@sfnewmexican.com. Read his political blog at roundhouseroundup.com.