Weakest of the Weak

Parents of children with developmental and cognitive disabilities fight after state services are slashed

Families of children receiving early-intervention therapies hope Gov. Jan Brewer reconsiders penalizing Arizona's most vulnerable.
Clare Hofmann Augustine's 3-year-old son, Marsalis, has received early-childhood intervention therapies and support from the Arizona Department of Economic Security since shortly after he was born with Down syndrome.

Although those services end when a child reaches the age of 3, Hofmann Augustine joined more than 100 other families and therapists to speak out in support of Arizona's most vulnerable--children with developmental and cognitive disabilities.

He and his mother joined other parents who also have children with Down syndrome in front of Child and Family Resources, a social service agency that recently announced it was being forced to lay off 21 staff members after losing $7 million in DES funds, thanks to state budget cuts.

Hofmann Augustine said she and her friends hoped to lend a voice to the children the agency serves (including their own children) to prevent the destruction of early-childhood intervention services after $172 million was slashed from the DES budget by Republican-led state leadership.

"To me, it's like the weakest of the weak is being preyed upon. It's immoral what they've done, and it hurts my heart," Hofmann Augustine said.

In early February, DES released a list of programs affected by state budget cuts. The department had already announced it saved more than $110 million through layoffs and employee furloughs--but the department still needed to cut more.

The cuts hit early-childhood intervention services hard. Right now, 4,000 children receive in-home therapies as part of early-childhood intervention. As of March 1, according to DES, those services will be reduced or cut, as will benefits for about 20,000 low-income children and almost 5,000 children in foster care.

"It is just so wrong to cut services to these kids from 0 to 3 years old. They are just starting out and in great need. I'm not saying that early invention filled every gap, but in my life, they've made such a difference," Hofmann Augustine said.

When Marsalis was born and diagnosed with Down syndrome, Hofmann Augustine said, she was depressed.

"These therapists are well-educated about who they are serving. It also made such a difference in my life. I was going through such a funk bringing this baby in the world ... a gamut of emotions. But in early intervention, I just got so much support. It turned things around for me," Hofmann Augustine said. "They were there, caring for him, and it helped me understand he's a valid human being, and he has so much potential."

Marsalis, like many children with Down syndrome, was born with a heart defect and had to have heart surgery when he was 4 months old. Another focus on his care in early intervention has been in-home speech therapy; without it, Hofmann Augustine said, transitioning him into preschool in the Marana Unified School District would have been difficult.

While Hofmann Augustine and her friends stood outside, Democratic state Sens. Paul Aboud and Linda Lopez addressed media, family and providers inside a packed Child and Family Resources conference room.

Aboud said Democratic state leaders planned to unveil budget alternatives on Tuesday, Feb. 24, at 11:30 a.m. (just as the Tucson Weekly was going to press). A reporter from the Tucson Citizen asked Aboud if she was implying that there was money available for these programs.

No, Aboud said. However, Gov. Janet Napolitano had left options in place that Lopez and Aboud's Republican colleagues have chosen to ignore, she said.

"There are ways to deal with deficit rather than slashing programs," Aboud said. "It's up to the Republican leadership and (Gov. Jan Brewer) to take the options we are providing and use them."

Lopez told those in the crowded room that it was hard to determine when Gov. Brewer would finally decide whether she is an advocate for Arizona's kids.

"I hope she will respond," Lopez said.

Outside, Natalia Rodriguez stood with her husband and her 14-month-old daughter, Neesee Amaya, sleeping in her stroller. The girl has a rare syndrome called 5P-, or Cri du Chat syndrome. In French, that translates into cry of the cat.

At the hospital, when her daughter was first born that's exactly how she cried--like a cat. It was obvious from the start that something was wrong.

"You felt hopeless. All my dreams were kind of shattered at that point. I went online after they told me they sent for genetic testing. I went through the Internet looking for her symptoms. My heart dropped when I found the 5P- Society online (fivepminus.org). I read some of the stories. I knew," Rodriguez said.

Rodriguez said it was hard in the beginning. Her daughter's sleep schedule was erratic; this took its toll on Rodriguez and her husband, who worked during the day. Neesee, because of sensory problems, wasn't able to easily calm herself to sleep.

Getting signed on with early-intervention services provided the family with a respite worker, who came into the house in the morning, allowing 27-year-old Rodriguez not only to sleep, but to get Neesee on a regular sleep schedule.

Next, Neesee received physical and occupational-therapy services to work on movement and sensory issues in-home. If this therapy continues, Rodriguez said, her daughter has a chance to walk someday, depending on the severity of the syndrome.

But the services Rodriguez is counting on are on hold.

"She's coming up for renewal, and they can't do anything to renew her services right now. By the middle of next week, we should pretty much hear our fate. I'm hoping we are going to be one of the lucky ones. I can't imagine the families whose services will no longer continue," she said. "There are going to be consequences--maybe not right away. I don't think the state is prepared to handle the crisis that is going to follow."

Rodriguez talked about the changes she's seen in her daughter since she was born. She's seen her daughter pull toys out of a fish bowl during therapy--something that may seem like a normal developmental milestone for a parent of a typical child that age. To Rodriguez, it was astonishing.

"Those little things make a difference. I look for those little things. To think I won't have those anymore is devastating," she said.

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