Viviana Fernandez purchased a home in Snellville when her son, Cameron, was entering the first grade. Shortly after enrolling him at Britt Elementary, she received a call advising that he be moved to a separate school for kids with disabilities. The school continued to call her for minor behavioral issues, and she recalls feeling intimidated at her son’s first individualized education program (IEP) meeting.
“I cried, and I cried after I got out of there,” said Fernandez, now an advisory member of the Georgia Council on Developmental Disabilities (GCDD). “Most of the time, they were making it seem like I was crazy, that what I was asking for was totally crazy.”
After a two-year fight and dipping into her 401(k) to hire an attorney, Fernandez got her son the education he was legally entitled to. Cameron, now 18, was placed in an inclusive classroom, and he was the first student with D wn syndrome to attend Britt Elementary School.
Navigating the IEP Process Fernandez is one of many parents navigating Georgia’s K-12 special education supports. Over 160,000 children in the state’s education system have IEPs, or individualized education programs for students with disabilities. These plans, meant to ensure equity in access to education, are nationally mandated by the Individuals with Disabilities Education Act (IDEA).
IEP teams are made up of parents, school faculty and, optionally, the student and a neutral facilitator. A student’s IEP is reviewed and updated at least once a year.
According to resources from the Georgia Department of Education (GaDOE), parents receive written notice prior to IEP meetings outlining the agenda, location and time, but they can coordinate alternative times if necessary.
Parents can also request an IEP meeting in writing at any time to make changes or ask questions. At the end of a meeting, parents don’t have to sign the documentation if they disagree with the program. However, the school will administer the IEP regardless, unless parents file for a due process hearing to stop the process.
“Many parents, especially in the Latino community, don’t know what kids’ rights are,” said Fernandez. “And I truly feel from the bottom of my heart that Cameron is who he is today because he was included from the very first d y, first of all in our family … and then after two years of a battle, in his elementary school.”
Students’ Rights under IDEA Parents and students are guaranteed certain rights under:
IDEA, the central piece of legislation, was last reauthorized in 2004 and last amended in 2015. Though each state uses different methods to determine guidelines and administer programs, the federal law must be followed.
“IDEA governs a lot of regulations, and the IEP process is just one of those regulations,” said Dr. Zelphine Smith- Dixon, the state director of special education services and supports at the GaDOE. Special education laws broadly afford protections to certain rights to children with disabilities, including a free and appropriate public education; the least restrictive environment for learning; additional support and services; and assessments to determine a child’s needs. To protect the parents’ and students’ rights, IDEA includes provisions for IEPs and a due process hearing for dispute resolution involving an administrative law judge.
The provisions are the same for rural and urban areas, though location determines the availability of certain GaDOE programs and community resources.
“It’s important to not think of the IEP as a paper; it’s really a process,” said Smith-Dixon.“You have to document how that process is implemented and how it benefits kids The IEP team is the heartbeat of that process.”Laws surrounding special education are complex and constantly evolving. Parents’ and students’ legal rights are outlined in IDEA, but without consulting outside resources or community supports to navigate the process, many parents struggle. “Parents should not have to go through that,” Fernandez said.
“It exhausted me. I got gray hairs in [those] first ears.”
Parents new to special education often need additional resources and support to understand the IEP process and their rights. During IEP meetings, parents are not always provided all the options available to their children by the school, but the GaDOE website has a wide array of resources available online, including a glossary of special education terms, sample forms and a list of parents’ rights. There is also a GaDOE phone help line. Parents or guardians receive a 20-page packet of rights at the start of their first IEP meeting, but the language is legalistic and tricky to parse.
“It’s very confusing, and it doesn’t really explain, not truly, what your rights are,” said Teresa Heard, a parent advocate and GCDD council member. “Unless you’re in the educational system, it’s almost like you don’t know what they’re talking about. Information is not volunteered to you necessarily; you have to know what to ask.”
The Role of IEPs
in GNETS Referrals
By making a calculated move from Dougherty to Lee County, Heard was able to get her son Derek out of the Georgia Network for Educational and Therapeutic Supports (GNETS) system, which has been criticized by advocates for its over-enrollment of black boys with disabilities and 10% graduation rate. Derek, a 19-year-old, graduated from high school after learning in a less restrictive environment, and he’s currently in an employment-transition program.
GA DEPT OF EDUCATION ONLINE RESOURCES
- Glossary of Special Education Terms
- Sample Forms
- List of Parents’ Rights
- Phone Helpline: (404) 657-9968
GNETS is a program that “is comprised of 24 programs that support the local school districts’ continuum of services for students with disabilities, ages 3-21. The programs provide comprehensive educational and therapeutic support services to students who might otherwise require residential or other more restrictive placements due to the severity of one or more of the characteristics of the disability category of emotional and behavioral disorders (EBD).
GNETS programs provide an array of therapeutic and behavioral supports as well as specialized instruction for students. These supports are designed to assist the student to progress in the general curriculum and graduate ready for work or postsecondary studies. In addition, the GNETS program provides supports to families and works collaboratively with other agencies serving students. Students are referred by their local school districts through the Individualized Education Program (IEP) process.
GNETS is currently under litigation under a lawsuit filed by the United States Department of Justice versus the State of Georgia. “It really matters how the school is telling a narrative of the student,” said Leslie Lipson, founder and principal of Lipson Advocacy. Lipson led the coalition supporting a 2015 letter of finding issued by the Department of Justice detailing Georgia’s violations of the American’s with Disabilities Act by funding, implementing and supporting a statewide, segregated school system for students with disabilities.
If a student is having a problem in the classroom, and becomes known as a “behavior kid,” then the focus becomes on the behavior and tactics move to compliance rather than adjustment. The “compliance” can easily mean a referral into the GNETS program, which can digress away from the goals of the IEP if parents are not informed and empowered.
FOCUS ON THE POSITIVE
- Goals in the IEP should drive placements and supports, such as inclusive
- Outline the strengths students display in the community or family
- Involve kids in their community through extracurricular activities, mentorships and more.
“There is no comprehensive approach or look at the instruction, education or academic gain for the student,” says Lipson.
Parent Strategies for IEPs According to Lipson, parents should use positive strategies to direct and stay on task with the student’s IEP and not transition the conversation to GNETS.
Three ways include: 1) the goals in the IEP should drive placements and supports, such as inclusive settings; 2) outline the strengths students display in the community or family gatherings; 3) make their kids become involved in their community through extracurricular activities , receiving mentorship and more.
Derek, Heard’s son, has leadership roles in multiple organizations, and the school has been understanding about giving him excused absences for those kinds of opportunities. That relationship has developed over time, fostering efficient collaboration among Heard, her son and his teachers. Heard, who works at Easterseals Southern Georgia and serves on Lee County’s Parent Advisory Council, likes the principal at Lee County High School. She says it hasn’t been easy to develop trust and rapport with her son’s educators after his first few years of school, a crucial element to effective IEP administration. But, now, that relationship has developed into a supporting Derek’s leadership and involvement in the community, while staying on track with his IEP.
Finding a Parent Advocate
In 2016, Salman Panjwani, an active and involved student in Gwinnett County, experienced a sudden brain hemorrhage and stroke. Panjwani, who is now 22, was diagnosed with arteriovenous malformation (AVM), a condition that is found in less than one percent of the population.
“We really had a hard time,” said Sakina Jaffer, Panjwani’s aunt who is like a second mother to him. “Salman was a regular student at Parkview; he was in 11th grade. When he went back to school, they took him to Special Ed, and we had to start everything from scratch.”
After the diagnosis, Panjwani’s family got him into physical therapy. Panjwani is paralyzed in his right side, but writes with his left hand now. At the family’s first I P meeting, administrators suggested Panjwani take part in ADAPT (Assisting Developing Adults with Productive Transitions), a functional life-skills program in Gwinnett County.
Jaffer and Laila Panjwani, Salman’s mother, said no. They believed, alongside the trusted family psychologist, that Panjwani should be in classes with his peers, a less restrictive environment. The family filed for a due process hearing and got connected to Fernandez, who helped advocate for them in subsequent IEP meetings. Sitting in on his IEP meetings, Fernandez noticed disturbing similarities between Panjwani’s experiences and those of her own son – years apart in the same county. Both children ended up where they belonged, in the environment most conducive to their learning… but not without a fight.
“We think it would have helped him to be in the classes he’s in now earlier,” said Jaffer. “But we didn’t know.” Panjwani’s family considers Fernandez a blessing. She came to their home, sat and talked with them. Fernandez told the family about supports the school never had, including moderate classes with appropriate supports and the Georgia Vocational Rehabilitation Agency. She gave them options. “Give everybody a fair chance,” said Laila, Panjwani’s mother. “See what capability they have. It’s the thought that every child is important.”
Problems persist, especially for parents who aren’t accustomed to working with disability supports, but solutions are in constant development. There have been new initiatives in recent years meant to improve the process, and according to Smith-Dixon, the ultimate focus must be on the needs of the child.
“We don’t want this to become a distraction for the parent, where it becomes more about the parent managing a system, or paper or people,” said Smith- Dixon. “We want to focus on what’s really important – coming together and engaging to meet the needs of the student.”
Student-led or Facilitated IEPs Student-led IEPs (SL-IEP) are one of the ways that education professionals and advocates are trying to better the process for all the parties involved.
An optional procedure not guaranteed by IDEA, SL-IEPs allow students to get involved in their own IEP process from an earlier age. The IEP doesn’t change in the traditional sense, and the paperwork remains the same. Students, however, are more involved. Students with a disability have to be invited to the IEP process when they’re 16 years old, according to the IDEA. They don’t have to attend, but the planning components of an IEP are meant to reflect the individual student’s interests and desires.
“The idea is that when they leave school, they won’t be so reliant on other people telling them what they need,” said Elise James, a programs specialist for transition post-school outcomes for the GaDOE. “And they’ll be more attuned to what their needs are and can express that, whether they go to college or when they’re working.”
Georgia’s SL-IEP initiative is called ASPIRE or Active Student Participation Inspires Real Engagement. James was the state lead on the project when it was piloted in the 2010-2011 school year with funding from a State Personnel Development Grant and GCDD assistance. According to James, the program is now self-sustaining around the state, and it’s growing in popularity.
“There’s no place you can go in the state and talk about student-led IEPs, and people don’t know what you’re talking about,” said James.
Students’ engagement in their own education rose in popularity nearly two decades ago, but James says the state is now in a position to begin doing research on student outcomes. This year, the GaDOE also began implementing facilitated IEPs (F-IEP) in the state. IEP facilitation is an optional process not found in the IDEA, and parents and the school must agree to try it. F-IEP incorporates a neutral third party into the IEP meeting to advocate for the student. The process is meant to be a mechanism to collaborate and prevent disputes where there has been a history of disagreement and difficult interactions.
Anne Ladd, a family engagement specialist at the GaDOE’s Division of Special Education Services and Supports, shares why she welcomes difficult interactions with parents. “My philosophy is I’d rather have an angry parent than a parent that doesn’t show up,” said Ladd. “That anger or that hostility is because they care about their kid, and they’re trying to communicate something. ”
Help from Parent to Parent In addition to these GaDOE IEP initiatives, there are in- school and community resources to help parents maneuver through the process. One of the organizations widely recognized for helping parents is Parent to Parent of Georgia. Parent to Parent of Georgia is not made up of lawyers or paid advocates; the organization is a training center for parents. They provide options and information like Fernandez did for the Panjwani family. Mitzi Proffitt the director of support services at Parent to Parent of Georgia, says they will help in any way they can.
“If there’s no service, I’m going to be the first ne to say we don’t have that here,” said Proffitt “But we will teach them how they have to learn to advocate for services, which is where [GCDD] comes in.”
Parent to Parent doesn’t advocate for families, and they cannot give legal advice. They are there to simplify and enable parents to tackle the process. Proffitt underwent a due process fight for her son Joshua that went to federal court. She notes that there is a special education director for every county, and that person is responsible for every IEP in that system. She strongly suggests parents know who their director is.
“If the school is in the wrong, and we know that, we can never tell a parent what to do,” said Proffitt “We can only make suggestions and give you processes. We will explain on the DOE website how you file a complaint. We will explain due process. But trust me, you’ll know when something’s not right.”
Parent Mentor Partnerships The Georgia Parent Mentor Partnership (PMP) is an in- school resource from the GaDOE that partners parents with other parents who have shared similar experiences. The PMP is a voluntary process that districts can choose to participate in. Ladd works on the PMP, and she says there are about 80 districts throughout the state with mentors. There is a clear benefit to parents helping other parents work through the process. “When you’ve been through a lot, you think, ‘Gosh, I’ve gone through all of this.’ I want to make someone else’s journey easier,” said Ladd.
The support PMP offers is dependent on location and available mentors. In smaller districts, mentors are able to attend individual IEP meetings, and in large districts, mentors are more likely to conduct training sessions and offer pre-meeting support. Like other resources and programs, the PMP is meant to make the process simpler and easier for struggling parents.
“Your emotions are high, and it’s your very special person,” Ladd said. “It’s daunting, and so we want to have had that experience. When we’re working with families, we have that empathy, and we have that shared, lived experience.”
The shared experience is vital to making a connection and materially improving outcomes. “As professionals we have to say, OK, this is not about me. This is about them, and their circumstances, and their kid, and we need to take that seriously,” said Ladd.
As a family engagement specialist and parent herself, Ladd says that when families get involved, things only get better for the student. Research shows that when families are engaged, students achieve more – higher test scores, better attendance and improved behavior– regardless of socioeconomic status, race or ethnic background and the parents’ level of education. “What parent mentors are doing is helping districts understand how to be welcoming, how to grow leaders, and how to engage families so that they’re actively participating and contributing,” said Ladd.
Still Progress to be Made For Heard, who has been engaging with the IEP system for years, there is still progress to be made in terms of in-school supports.
“I wish there was more carryover into the school itself, instead of seeking it out outside,” said Heard. “GCDD funds a lot of programs that help with self-advocacy and leadership, so my son accesses these leadership opportunities outside the school system.”
In other words, if students had more opportunities to learn about leadership and advocacy with in-school supports, they may be better prepared to participate in their IEP processes and know how to advocate for what they need.
A full education and ample leadership opportunities allow young people to grow into their own. For four years, Panjwani was the manager of the Parkview track team, and he was involved with his mosque and various volunteering programs. Jennifer Newton, Panjwani’s favorite teacher at Parkview High School, was going to appoint Panjwani the leader of SAVE SADD, or Students Against Destructive Decisions. He wasn’t able to take the position after his brain hemorrhage, but now Panjwani is able to graduate this May with his peers thanks to the advocacy of Fernandez and his family. He hopes to attend Georgia Gwinnett College and become a psychologist.
“All children should be treated equally,” said Laila, Panjwani’s mother. “All children should be given the benefit that they are capable of education, that they have the right to learn. Give them the opportunity. They can shine, and they can have a better future.”