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August 28, 2014

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Health Care:

Cuts to Nevada program could affect children with multiple afflictions

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Leila Navidi

Henry James Gonzales, 3, looks for a snack in the kitchen at home in Las Vegas on Wednesday, November 28, 2012.

The 360 Program

Almalinda Guerrero-Gonzales, center, with her children, from left, James Matthew Gonzales, 7, Henry James Gonzales, 3, Almalinda Gonzales, 7, Zabraamalatzka Rosales-Gonzales, 8, and Maria Guadalupe Gonzales, 5, at their home in Las Vegas on Wednesday, November 28, 2012. All of the Gonzales children have some sort of physical or mental disability. Launch slideshow »

Being a parent is rarely easy. But in 2009, it seemed Almalinda Guerrero-Gonzales would hit a breaking point.

A few months after the Las Vegas mother gave birth to an infant with Down syndrome, she was on her own, having escaped her physically abusive husband with her five children.

Besides Henry James, her newborn, Guerrero-Gonzales’ four other young children had challenges: Her oldest, now 8, suffers from seizures and migraines; she has twin 7-year-olds, one of whom can walk only with braces on her legs; and her 5-year-old is being treated for autism, bipolar disorder and schizophrenia.

She would need help. But at that point, the challenge seemed too great to even acknowledge.

“I saw my children had struggles. I knew they had struggles,” she said. “But I was in denial. I was sad.”

As welfare workers placed her in housing for domestic violence victims, they referred her to a program designed with families like hers in mind, the first of its kind in Nevada. Through Nevada PEP — Parents Encouraging Parents — and its Family Support 360 program, she was able to acknowledge the challenges facing her kids and get them help.

“That’s when the denial went away,” she said. “I saw I wasn’t alone. I had children with needs, who needed attention.”

A family navigator with PEP, Santiago De La Torre, served as an advocate for Guerrero-Gonzales and her children. He would go with her to doctor’s appointments and meet with Clark County School District officials. He’d show Guerrero-Gonzales rough drafts of letters she could send to the School District, requesting certain services.

“It is intimidating when you go by yourself,” Guerrero-Gonzales said.

But the program that made the difference for Guerrero-Gonzales, and which serves about 100 Nevada families, is in danger of being cut because of the premature end of a federal grant relied on by the private nonprofit.

In the Family Support 360 program, parents of children with disabilities are trained to help other parents whose children have both intellectual disabilities and behavioral health needs — coexisting disorders, in the clinical language.

In plain English, the program serves families with children who have both a mental handicap — such as Down syndrome or mental retardation — as well as a behavioral need — such as depression, schizophrenia or autism. PEP’s staff, 15 full-time and 14 part-time, all have family members with a disability.

Nevada PEP, which has an annual budget of $1.3 million, will lose its $200,000-a-year grant for the program two years early because of federal budget cuts, said Dr. Christa Peterson, a program director for Nevada PEP and a psychologist.

“The level of family support will have to be drastically reduced,” she said. The nonprofit is committed, she said, to offering some support to families who are receiving services.

But, she said, Nevada PEP’s 360 program is not doing proactive outreach to those who might need help.

“We don’t have the capacity to serve all those in need,” she said.

In its effort to save the program, Nevada PEP has sought help from philanthropic and charitable organizations and turned to Nevada’s Department of Health and Human Services.

Last week, the state agency came up with a $25,000 grant — enough to extend the program through June, said Jane Gruner, deputy director for the Department of Health and Human Services.

Beyond that, it’s unclear how much the state can afford to help.

Gov. Brian Sandoval’s budget has yet to be released. But all indications are that it will be tight once again.

The state has a grant program funded by a national tobacco settlement, but that money is dwindling. And other nonprofits, which help feed the hungry and care for the elderly in their homes, are competing for the same dollars.

The program’s struggle is another example of Nevada’s fraying social safety net, which seems in danger of coming apart under the strain of continued revenue shortfalls.

“We’re reaching out in desperation,” Peterson said. “We’re out of money.”

The program, created in 2009, is one of 15 in the nation that provide wrap-around services to those with co-occurring disorders, Peterson said.

An estimated 25 to 40 percent of children with intellectual disabilities also suffer from mental health problems. And families can often end up homeless or on the verge of homelessness as parents struggle to keep jobs and marriages together.

Guerrero-Gonzales, 43, said the program has been vital for her family.

“I pray that no cuts will be done with this program. It has helped me so much,” said Guerrero-Gonzales, who now volunteers an hour a week at the program.

She said things are better now. With the help of SafeNest, which helps victims of domestic violence, she found an apartment for her family.

“It’s large,” she said. “It’s a two-bedroom apartment, with two bathrooms. We have our own washer and dryer in the apartment.”

She gets by with help from her church, state assistance and disability benefits for two of her children.

“We live humbly,” she said.

She finds strength through her religion and said she is grateful.

“I love my children, and I’m grateful I’m chosen to be my children’s mother,” she said. “I feel I’m strong. I’m teaching them to love to live. I’m teaching them to love life. And they’re able to do what they’re able to, and be happy with it.”

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  1. Every child should receive the love and support of TWO parents. Each of us faces trying times, sometimes multiple times, during life. It is great when we have our faith and our church to turn to. Some of these programs are helpful especially those provided by non-profits via charitable donations and those staffed by people who have been there, done that. However, funding increases that merely raise the compensation for government employees are not always helpful--so many of the "best practices" of yesterday turned out to be the wrong things to do.

  2. Comment removed by moderator. Inappropriate

  3. Comment removed by moderator. Inappropriate