Wednesday, June 12, 2013

Special needs, a special struggle

Diego is a 7-year-old boy with Down syndrome whose parents wish for him to get what most want for their children: the best education possible.
But determining what is the best education for Diego has become an issue of contention between El Centro Elementary School District and Diego’s parents, Keila and Everardo Rodriguez. So much so that since 2009 the district and the Rodriguezes have been at odds over the individualized educational program offered to their youngest son, who is just one of more than 3,000 special education students enrolled in county schools.
Disputes could not be resolved and consequently an unprecedented lawsuit in the Valley’s collective memory recently took place.

In the lawsuit filed late last year, the Rodriguezes asked that Diego be placed in general education with full-time support of an aide. According to the lawsuit’s ruling issued in April, Diego’s parents also contested the amount of therapy provided under his individualized educational program, or IEP, which defines the objectives and services a child with disabilities has. 

Asked about the matter, El Centro school district Superintendent Jon LeDoux said in an e-mail, “I am very sorry but I cannot comment publicly on the status of any student due to state and federal privacy laws.”
The district was asked if someone could comment on students with Down syndrome and their inclusion in general education without talking about a specific
LeDoux said “our district is committed to providing our students with the supports they need to receive a quality education in the least restrictive
environment.  This includes educating students with disabilities in the general education setting to the maximum extent appropriate.  However, every child's unique needs are considered individually, and the level of inclusion that is appropriate for each child will differ and change over time.”

The big IDEAKeila Rodriguez maintains that “from the get-go they (ECESD) questioned why I was requesting something other than what they always offer to kids with disabilities like Diego.”  
Rodriguez, a former classroom teacher now employed by the Imperial County Office of Education, added she asked for Diego’s inclusion into general education because research shows that children with Down syndrome benefit in the short and long term by being educated alongside non-disabled peers to the so-called maximum extent possible.
Moreover, “the classroom should represent the demographics of the community that we live in,” said Rodriguez, whose case and her right to question Diego’s education plan are based on the Individuals with Disabilities Education Act, or IDEA.
In part, this landmark act approved by the legislature in 1990 says that eligible disabled students are entitled to free appropriate public education, evaluations and perhaps most importantly, that students with disabilities should be educated with non-disabled peers to the maximum extent appropriate in a least restrictive environment.

By most accounts, the least restrictive environment is the vague concept holding a valuable principle, to ensure that special education students are not unnecessarily removed from a regular classroom, or isolated from non-disabled children of their age.  
And yet, “20 years later we are still debating what the least restrictive environment should mean because it really (is) interpreted by the district,” Rodriguez said.
However, Juan Cruz, assistant superintendent of student services for ICOE, explains that the least restrictive environment is determined after IEP meetings where the parents and professionals dealing with the student convene.
“It’s a team decision,” said Cruz while referring to the procedure in general. Cruz added there is no fixed rule on what the least restrictive environment is and “is based on each individual student needs.”

A parent’s struggleAmong various issues, in the lawsuit Rodriguez maintained that Diego’s least restrictive environment was English-only general education with a one-on-one support from a trained aide. In contrast, the district believed Diego’s needs could be met by placing him in general education for part of the day and a special day class for the other part.
By the time the suit came before the Office of Administrative Hearings of the state, Diego had gone through general education preschool, unsuccessfully through an English/Spanish dual-immersion program and partly through a summer program. The latter program, Rodriguez said, was without special education support so she pulled Diego out after two weeks.

Soon after that experience Rodriguez learned about IDEA.
“That’s when I said, wait a minute, this is the least restrictive environment but it’s completely cut in half. You are saying you are giving him the least restrictive environment but with no supports,” said Rodriguez, who from then on began attending IEPs accompanied by an advocate she hired. She adds it was then that the relationship between herself and the district became “adversarial.”
From 2009 until late 2012 at least nine IEPs and assessments involving Diego took place, according to the ruling. Reports quoted in the ruling state that Diego is a little over a year behind his chronological age; that he’s disruptive and that he bothered peers. One teacher even noted that she did not believe Diego would be “safe in the general education environment.”

“These IEPs were full with Diego’s disabilities, inabilities … they were constantly focusing on what Diego cannot do,” said Rodriguez.
She disputes findings in the IEPs and noted that during the hearings, professionals portrayed Diego as a kid born with “maladaptive behavior” that had reached his maximum capacity as a kindergartner and that his parents were in denial.

A parent’s loss“I’m a mom, but I’m also an educator,” said Rodriguez. “What are we doing with the system and what’s happening, why are we closing our minds, or not opening our minds to multiple opportunities with children with disabilities in the general (education) setting?”

Asked about why she did not accept the offering of part general education, part special day class, Rodriguez said that when she was told Diego would be in general education for an hour a day, she was concerned that he could be included in physical education, or arts and crafts, which is something she knows has happened with other children.  
“I wanted to have a schedule and I wanted to know exactly what times,” said Rodriguez who filed suit shortly after that offering.

But ECESD mostly prevailed in the ruling, which, however, notes there was a lack so-called occupational therapy in certain IEPs. Diego was deprived of goals, therapy and classroom modifications for an entire school year, the ruling reads, and awarded 15 hours of individual compensatory therapy to address Diego’s sensory issues; a far cry to what the Rodriguezes hoped for.
And yet Rodriguez does not seem discouraged by the ruling as she notes it only applies until a new IEP is done later this year. She adds that the whole process has taught her to be aware of her rights as a parent.   
A community struggleDiego’s case and Rodriguez’s efforts have been heard beyond the courtroom. Many professionals in the special educational field in Imperial County were aware of it, and so were members of the Down Syndrome Association of Imperial Valley.  
Marisa Villa, secretary of the local Down Syndrome Association, said the Rodriguezes’ struggle builds the path for families to demand services that may be otherwise denied.
“We are not asking anything out of the ordinary,” Villa said in Spanish. In addition, Villa added she’s heard many anecdotal accounts from parents who, like Rodriguez, struggle for months to receive certain services; although she has not had a difficult experience.
In contrast, Leonor Verdugo, president of the Down Syndrome Association of Imperial Valley, said it was difficult for her to obtain occupational therapy for her son and alleges that the system “is not accessible.”
“And I’m not the only mother that has struggled. … I know there are many services that we request but they are not easy to get,” she said in Spanish. She theorized that districts avoid providing resources to
save money and for fear that if “they (provide) to one student, they’ll have to do the same for others.”
Reports about special education parents having opinions aligned with Rodriguez, Villa and Verdugo are plentiful; and yet those willing to share their experiences did so while asking not to be named. As one fearful, low-income Calipatria mother put it in Spanish, “The few things that we have won could be taken away.”
This mother, who sells fruit for a living, said her daughter with Down syndrome needed one-on-one speech therapy. Her Northend school district “refused” those services, she said, and instead, her 4-year-old was provided group therapy twice a week. But sessions involved so many children, this mother said, that her daughter got just a few minutes with the therapist.  
Not giving up“But I’m a mother that doesn’t give up. I knocked on doors. I knocked on windows,” the Calipatria mother said in Spanish and explained she was able to bypass the district and get her daughter speech therapy in San Diego.
For some three years she woke up at 5 a.m. every Wednesday and used subsidized bus services to get to San Diego with her daughter so she would get a 30-minute one-on-one session with a therapist. She would get home late in the evening, but it was worth it.

“Now my daughter speaks better,” she said.
And yet the alleged difficulty to get services is reported by parents suffering disabilities other than Down syndrome.
An affluent El Centro mother, who asked to remain unnamed over fear of job retaliation, said that in her case services like an extended school year that prevented her son with developmental disabilities from regressing during summer months was denied for years.
“I can honestly tell you that if it wasn’t for the advocate that I have, we wouldn’t have gotten it,” said this mother, who notes she has struggled with El Centro Elementary School District for about six years.
“I don’t think they are used to people requesting things and not taking no for an answer,” said this mother, who tapes every IEP “because if I ever need to go to court, I have a copy of everything. I have binders. I have boxes of my paperwork. I have hours of recordings and for me, what keeps me up at night, to tell you the truth, is the fact that not every parent that has a special needs child has an advocate.”   
A struggling systemWhen presented with some of the parents’ concerns and the perception that scarce resources cause districts to withhold services, ICOE’s Juan Cruz said that perception comes when a parent feels that they are not given access or a voice in the system are not necessarily caused by scarce resources.
“(The) language barrier and the understanding of the system may be a contributing factor, as opposed to nonavailability of services,” said Cruz, himself a parent of a special education student. 
“We do have a need for parent outreach,” Cruz said. “We do have a need for that and work on it.”
He went on to say that continued work with parents so they understand each student need is different is “crucial.”
As far as the quality and quantity of resources, Cruz said ICOE has “good resources” for special education and noted “services are adequate within the (ICOE) regional program.” Still, he explained that “special education programs are not funded at the level promised by the federal government.”
IDEA, he said, is an underfunded mandate.
The California Legislative Analyst’s Office notes that the share of overall special education costs funded through local contributions grew from 32 percent to 39 percent, while the shares covered by state and ongoing federal funds each declined. This is due to the combination of increasing costs and relatively flat state and federal funding, the Legislative Analyst’s Office notes.
Meanwhile, districts also face a shortage of certain positions like qualified speech therapists and special education teachers.

“That’s an area of huge need in Imperial Valley and that’s not something we are creating,” said Cruz. “Demand is greater than supply.”
The combination of decreased funding and shortage of certain personnel, as well as comments and allegations put forward by parents, suggest that a gap between school districts and special education students’ needs exist, at least at some level. In other words, while the state and federal governments’ unstable economic situation pushes school districts to do more for less, a growing number of special education parents are calling for better access to services.

Such change, if in fact needed, will ultimately affect parents like Laura Lugo, 39, who four months ago gave birth to Enzo, a baby boy with Down syndrome.
Asked about Enzo’s education, Lugo said she plans to treat him like every other child and hopes he will be able to transition into mainstream classes. Lugo added she has heard that transition into general education, as well as getting resources from local districts can be difficult thing to obtain. Still and no matter what, “(I’ll) try to get him the best education that is out there, and if it means that I have to fight the district,” Lugo said, “… then that’s what I’m going to have to do.” 
Staff Writer Alejandro Dávila can be reached at 760-337-3445 or

At a glance
Most important rights parents of children with disabilities have and recommendations by San Diego based special education advocate Jennifer Ruiz. 

- Children with disabilities have a right to a free appropriate public education and this includes non-public schools if and when the public school cannot meet the child’s specific needs.
- Procedural safeguards must be given to the parents once a year at an individualized educational program, or IEP, or whenever parents request them.
- Parents have the right to bring anyone they wish to the IEP meeting or 504 plan meeting to provide them with support and advocacy.
- Parents have the right to audio record the meetings but need to provide the school with a 24-hour notice in writing.
- Parents whose primary language is not English have the right to an interpreter and have the IEP or 504 plan translated into their native language. 
-Parents should never attend the IEP meeting alone.
- A well-written IEP stems from good and thorough assessments conducted by the IEP team.  When parents do not agree with these assessments, they have the right to request an Independent Education Evaluation, or IEE, funded by the school district. They can in turn use these “outside” evaluations to develop and write an IEP that meets the unique needs of their child. Assessments drive the goals that are written,

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