Category Archives: Advocacy
Our federal special education law places a lot of importance on the role of the parent in decision making. It is understood that parents’ number one priority is looking out for the best interest of their child. But what happens to those children who don’t have a parent who can speak on their behalf?
First, let’s look at how the Individuals with Disabilities Education Improvement Act of 2004 defines “parent.”
- A biological or adoptive parent of a child;
- A foster parent, unless state law, regulations, or contractual obligations…prohibit a foster parent from acting as a parent (e.g. therapeutic foster parent);
- A guardian generally authorized to to act as the child’s parent or authorized to make educational decisions;
- An individual, with whom the child lives, acting in the place of a biological or adoptive parent, or an individual legally responsible for the child’s welfare; or
- A surrogate parent who has been appointed in accordance with IDEA ’04
For children who are wards of the State, or for whom no parent can be identified or located, or unaccompanied homeless youth, a trained volunteer must be appointed by the public school system, or local education agency (LEA), to protect the rights of the child in special education processes. The LEA has to develop a procedure to identify children who may need a surrogate parent, and a way to assign surrogate parents to those children. For children who are wards of the State, the judge overseeing their case also has authority to appoint a surrogate parent.
Surrogate parents are involved in the same decisions that require parent participation. This includes decisions related to evaluation, determining eligibility for special education services, development and review/revision of the Individualized Education Program (IEP), educational placement and the provision of a free appropriate pubic education (FAPE). Surrogate parents also participate in the Manifestation Determination Review meetings that look at the possible role of disability when students are facing disciplinary changes in placement.
Surrogate parents must have sufficient knowledge and skills to adequately represent the child so many LEAs provide training to volunteers. Surrogate parents have access to the child’s educational records and should be expected to have some familiarity with the child and his/her needs before attending an IEP or other school meeting.
Good surrogate parents provide an important service to children that may have no other adult who can stand up and speak up for them when critical decisions are made about their education. If you, or someone you know has the time and flexibility to volunteer as a surrogate parent, please consider this as a great way to make a real difference in the life of a child who is facing multiple life challenges in addition to having a disability.
For students in middle and high school it is extremely important for parents to keep up with the courses that they are taking. The classes should offer the right amount of challenge (not too easy, not too hard). They should be preparing your child for whatever their goals are for life after high school. More importantly, the courses need to be chosen so that they meet the graduation requirements for your school system. With many schools using computer programs to create schedules for students, it’s not hard for the needs of individual students to be overlooked.
For many students who have disabilities, course selection is even more critical. For some students it will be important to make sure that they are placed in the course sections that are co-taught by both regular education and special education teachers. This can offer real-time assistance and support to help students be successful with grade-level material. The co-taught classes can be selected in the areas most likely impacted by the student’s disability. Sometimes the assumption is made that, because the student has an IEP, they should automatically be placed in the lowest level course available. This approach would keep many students from building on their strengths to reach their full potential. Students who need support in some subjects can also take typical or even honors classes in subjects that are areas of strength for them.
These days, most high schools are using block schedules that cover the entire content of a course during a single semester. It may be important to make sure that the courses that will be most challenging for your child are not all piled into the same semester. With thoughtful planning, the school can create a schedule that spreads the work load out more evenly. For example, your child can take two really hard classes at the same time plus a support class and an elective in an area of interest. This kind of planning from the very beginning will usually allow students to complete all of their graduation requirements within 4 years so they can graduate with their peers. Even if they have to pick up a summer class or return for an extra semester, the goal is that the student experiences success and gains knowledge that will help them throughout their life. The extra time will be well spent.
Parents also need to look out for other kinds of scheduling problems:
- Make sure that courses are taken in the right sequence. The level 1 course should come before the level 2 course.
- Make sure that your child is not assigned to a course that they have already successfully completed. With rare exceptions, they will not earn course credit the second time around.
- Make sure that your child was not placed in an elective course that they have no interest in, or one that is a poor fit, just because there was space in that class. Forcing an extremely shy kid to take a drama class will probably not end well.
- Make sure that your child is on track to graduate when expected. Your child could be taking math and science classes that are counted as “electives” that do not meet the graduation requirements for that subject area. If your child comes up short by missing even a single graduation requirement, they will not get a diploma. At least once a year have your child’s guidance counselor review the courses that your child has taken and compare them to the courses required for graduation.
Read your child’s class schedule carefully as soon as you get it. If you see anything on that doesn’t look right, contact staff at the school immediately. Go to the school in person if you need to. The sooner any problems are corrected, the easier it will be for your child, and the better their educational experience will be.
Extended School Year or ESY refers to special education and related services that are provided to eligible students beyond the normal school year, based on the student’s Individualized Education Program (IEP). ESY is not summer school! Services are based on each child’s unique needs, so they range widely in terms of the type of service and how it is delivered. ESY services are often intended to help the child maintain their skills, not make progress. For example, a child may only get physical therapy, and just enough to maintain their range of motion.
During the development of each new IEP the IEP team must decide if the student is, or is not eligible for ESY services. In some cases, the team will note that ESY is “under consideration” and a future date will be set for the team to come back together and make a final decision. This gives the team time to collect data or information about the student’s performance to help them determine eligibility for ESY.
Some of the key things for the IEP team to consider are:
- Whether the student regresses, or slides backward, during long breaks from instruction, and takes an unusually long time to relearn lost skills, or
- Whether there is a risk that a long break will erase most of the gain that the student made during the regular school, or
- Whether the student is showing that they are beginning to learn a critical skill, and the “window of opportunity” might be lost if there are long breaks from instruction.
The great majority of students do not qualify for ESY services. In many cases, however, the team ends up checking “No” on the IEP simply because they do not have enough information to establish that the student needs ESY services.
It’s probably too late to address ESY for the summer of 2017, but it’s not too late to start gathering information and data that the IEP team can consider at the next annual review. Save a few samples of your child’s school work to show what they were able to do at the end of the 2016-2017 school year. Keep progress reports, report cards, behavior reports, communication log, correspondence, assessment results, videos… basically anything that will provide documentation of your child’s functioning in the areas of concern.
Find out what kind of assessments will be done when your child returns to school. If additional skills need to be measured, ask to have some assessment conducted in those areas. If there are significant concerns about behavior, try to get next year’s teacher to make written reports to you about how your child’s behavior has been each day. Whether the teacher makes a note in the child’s assignment book, or completes a printed check sheet of some sort, this will provide information about your child’s performance over time, so that any patterns can be identified (ex. he/she has more behavioral difficulties after long weekends, or winter and spring breaks).
It’s okay to tell the teacher(s) that you want to make sure that enough data is collected during the year to give the IEP team what it needs to make the right decision about Extended School Year services. Collect your own data by making notes about things that you observe and comments that are made to you over the course of the school year. Hold onto (or copy) some of the school work and tests that come home. Hopefully, what you will see is your child making steady progress. But you will be better prepared, just in case…
While public schools have a legal obligation to provide a free appropriate public education to students who have disabilities, some parents wonder whether their child might be better off in a private school. Private schools often have smaller class sizes than typical public schools and many boast about high student achievement. It is also rare to hear about major discipline problems in private schools. Parents might imagine that their child could get more attention in such a setting. So far, so good.
Private schools, however, are not going to be a perfect solution for every child. There are many things to consider. Private schools DO get to hand pick their students. Children have to apply and be accepted in order to attend. Most enrollment contracts also allow private schools to dismiss students at any point during the year.
Depending on the school’s accreditation, parents may not be able to assume that all of the teachers are licensed. If the school is connected to a religious organization, religion might be infused into the curriculum or school activities. Also, if a parent has a dispute within a private school, there may be very few steps that they can take.
If you are thinking about looking into private schools for your child, the two biggest factors will probably be cost and the amount of disability support that the school offers.
At private schools, parents usually pay for everything: tuition, school supplies, transportation, assorted fees, and the costs associated with extra-curricular activities. Private school costs vary tremendously from one school to the next. Some schools have need-based financial assistance, but they may not advertise that fact.
North Carolina now has two K-12 grant programs that can help some families pay for the cost of sending their child to a private school. The Opportunity Scholarship Program can pay up to $4,200 per year toward the cost of tuition and required fees. In order to be eligible, household income cannot exceed set guidelines. The Disabilities Grant Program awards up to $8,000 per year, which can be used for tuition, fees and other qualified expenses related to educating children with disabilities who are enrolled in a private or home school. There are no income restrictions, but the student must be eligible for special education services using public school guidelines. Contact the North Carolina State Education Assistance Authority for more information about the grant programs and how to apply.
Even though pubic school systems have to spend a certain amount of money serving students who are enrolled in private schools, they can limit the type of services that they provide. Students enrolled in private schools do not have an individual right to special education services from the public school system. Parents should not expect that a child’s public school IEP will be followed after the child enrolls in a private school.
Private schools are not required to provide special education services at all! They can decide how much extra instruction and support they are willing to provide to students. The partial exception to this rule are private schools that receive federal funds. Those schools are required to provide reasonable accommodations and otherwise comply with Section 504 of the Rehabilitation Act of 1973.
There are a handful of private schools in North Carolina designed specifically to serve students with disabilities. Most of these schools are in or around major cities. Most also target children with certain disabilities rather than attempt to meet the needs of everyone. Because of low student-to-staff ratios, these schools are usually very expensive.
For the vast majority of private schools student support is limited to some remediation or intervention by a general education teacher or school counselor. They may allow private speech or occupational therapists to work with students at school. A few schools have a special education teacher on staff. Others have staff who are willing to provide tutoring services outside regular school hours. There is often an additional cost for most of these support services. Some private schools do not offer any extra instruction or support, leaving parents on their own to locate and pay for the services that their child may need.
Questions to ask if you are considering enrolling your child in a private school:
- Does the school have much experience working with students who have disabilities? What about students with disabilities like your child?
- What types of supports and/or special instruction are available?
- Are there teachers with relevant specialized training?
- What happens if a child needs a service such as counseling, speech, occupational or physical therapy?
- How do they handle students who have emotional or behavioral needs?
- Under what circumstances might a student be asked to leave the school? (Read the refund policy and enrollment contract carefully before signing it.)
Having a say in where your child goes to school comes with a lot of responsibility. Do your research. Ask lots of questions. Consider all of the potential impacts on the whole family. There will likely be some trade-offs. Think about which things are most important. Take a deep breath…make the best decision that you can…and don’t look back. If necessary, you can make a different choice next year.
The National Association of School Nurses (NASN) has created a great Back-to-School Checklist for families. It contains some tips that apply to parents or caregivers of all children. There is also a series of tips especially for parents/caregivers of children who have health concerns.
Even though school has started, it’s never too late for a good idea. Check it out!
What is the difference between “placement” and “assignment” when it comes to students who have disabilities? This topic should actually fall under the heading of: Questions parents don’t ask because they don’t know what they don’t know.
“Placement” and “assignment” are often used as though they mean the same thing in conversations about the education of typical students. However, there are some very real differences in how these words are used when talking about students who receive special education services. There are also big differences in how decisions about placement and assignment are made.
Special education placement describes the type and amount of special education and related services a student receives based on their Individualized Education Program (IEP). The IEP will also describe the location where the services will be delivered. The IEP will state whether the services will be provided within the general education setting, special education setting, or the total school environment. The team of people who create each student’s IEP includes the child’s parent(s), a general education teacher, a special education teacher, and someone who can represent the local education agency (LEA) or school system. The IEP team can include other individuals, depending on what is being discussed or when invited by the parent or school.
Students with disabilities must be educated alongside students who don’t have disabilities as much as possible, as long as their needs can be met. The IEP team has to explain why a student is removed from his non-disabled peers and why they cannot be adequately served in the general education setting, even with the use of supplemental aids and services. The least restrictive environment for each student must be determined based on the unique needs of that particular student and not factors such as age or type of disability.
Some students with disabilities stay in the general education setting all day long, some removed for a short time each day, and other students require a specialized environment for most of their day. There is a wide range, or continuum of alternative educational placements that the IEP team can consider. The amount of time that the student is removed from their non-disabled peers will determine whether their placement on the continuum is described as regular, resource, separate, separate school, residential, home/hospital, etc. The IEP team, including the parent(s), has full responsibility for deciding special education placement.
Educational assignment refers to administrative decisions that are made by people who have been given certain authority to make them, as well as the guidance of school board or other policies. For example, principals typically have the authority to assign students to specific teachers. In North Carolina, principals also have sole authority over each student’s grade assignment or classification, including promotion and retention decisions.
Most school systems have a written policy that details how students are assigned to particular schools. In addition to a “home” school based on the student’s address, there may be other school options that parents can apply for by following certain steps. There may even be an appeal process if the request to change schools is denied.
If the IEP team has decided that a student’s disability-related needs require a specialized setting at, or beyond, the “separate” level of service, that student will be administratively assigned to the school closest to home where his or her needs can be met. School system administrators can decide where to locate various specialized classrooms, and they can be moved from one school year to the next. In most cases, parents of these children will not have a choice about which school their child will be assigned. Parents also do not have a right to pick and choose their child’s teachers.
If there are special considerations that make the standard administrative process or the resulting decision, not appropriate for your child, find out who has the authority to do something different. That would be the contact point where you should focus your efforts to advocate for your child. Communicate with the decision maker(s) to help them better understand all of the issues involved. If necessary, reach out to the school board members and others who actually create the policies that everyone else has to follow.
The IEP team process gives parents a clear role in making decisions about special education placement decisions, but parents can sometimes influence administrative decisions as well. It is important to be clear about which decisions you are talking about.
At least once each day we get a call from a parent who is trying to find an advocate for their child. Often they want one to go to IEP meetings with them. We explain that ECAC is a Parent Training and Information Center and that our goal is to help parents become effective advocates for their own children. We then offer to try to help and invite them to tell us what is going on with their child. Most of the time the parent will proceed to tell their story and we go on to provide individual assistance in whatever form is needed for that specific situation.
A few parents, however, will go right back to their original position. They declare that they need an advocate and, if we won’t go to the IEP meeting with them, they ask us to identify someone else who will. Those calls sadden me because the parent usually ends the call without giving us a chance to help them.
“Advocates” come in lots of different forms and a parent’s experience with them can vary tremendously. Some organizations will allow their staff or volunteers to go to IEP meetings with parents. There are educational consultants and other professionals who will serve as advocates for a fee. There are also individuals who have made helping families with school issues a personal mission.While it may meet a parent’s immediate need for support, sometimes using an outside advocate does not result in long-term benefit to the parent or student.
Occasionally, an advocate will take an adversarial approach that increases tension and creates additional barriers to communication and collaboration between home and school. Such situations are never in the best interest of the student. If you ever find that you have associated yourself with someone who seems more interested in winning a fight than with improving your child’s education, you should seriously consider limiting the potential damage by not inviting them back for a repeat performance.
Another problem that often happens with professional advocates is that they tend to keep knowledge to themselves rather than pass it on to the parents. This generally means that the parents do not learn the skills that they need to handle future issues on their own.
Working with your parent training and information center will help you better understand educational jargon, special education processes and policies, the rights that you and your child have, and how you can help shape your child’s educational experience. It is our job to make sure that you have the information and skills that you need to successfully advocate for your child today, tomorrow and every day after that. Everyone knows that knowledge is power. YOU are your child’s most important advocate. Be a powerful one!
By Debra Pickens
“If you don’t ASK, they won’t TELL!”
Have you ever had a feeling in your gut that something wasn’t right? When the Director of Disability Services told me that they didn’t know the Braille special math code, and that my son should drop College Algebra, I knew immediately why I had that feeling in my gut. “Here we go again, I thought. Another battle to fight!”
My son Billy was born on February 13, 1997 with Norrie’s Disease. He is totally blind with progressive hearing loss. Billy received early intervention services in the home and daycare. We established his IEP when he turned three and most of his one-on-one Specialists transitioned with him to public school, where they had a Visually Impaired (VI) resource room with a full-time Teacher of Visually Impaired (TVI).
Billy learned how to read and write Braille early. With the help of the TVI, Braillewriter and Braille Note taker, Billy was on the A/B Honor roll throughout his 12 years of public school. He graduated with a 3.5 GPA and a strong desire to attend a four-year college. He knew that there would be obstacles, and he had learned how to advocate for himself. What he didn’t know is that he would not have ACCESS to his academic materials in a timely manner when school started.
We met with The University’s Disability Services in late June and Billy’s counselor emailed his accommodation letter out to all of his professors early July. The letter told them “What” to do but not “How” to do it. When school started at the end of August, we found that his College Algebra class would be conducted mostly online, which was not in the course description when he registered. If you don’t ASK if it is an online course, then they want TELL you. We immediately reached out to the Director of Disability Services for guidance. Her advice was to drop the course until they could figure out how to get him ACCESS to the material. We knew that was not an option. He only had registered to take 12 hours and if he dropped the course, then his financial aid would not be granted.
The second suggestion was to audit the course or take an incomplete until he could obtain ACCESS to the material. Billy decided that he wanted to try using a one-on-one personal assistant to read to him and assist him in navigating the online system. This did not work because his one-on-one personal assistant did not know how to teach him College Algebra. We are still working with the Director of Disability Services to receive his quizzes and tests in Braille, which is his preferred method of communication.
The next battle was with his Theater class. The “Plays” were emailed to him as photo copies or in a pdf document. The documents would not translate to Braille on his Braille Note taker. We didn’t know to Ask them to convert to a format, which could be saved on a digital card and transferred to his Braille Note taker for him to read it in Braille, and they didn’t Tell us. He sat in class one day while the rest of the students were taking a quiz and he didn’t have ACCESS to the quiz in Braille. The inexperienced professor told Billy that she had reached out to Disability Services to ask “What” and “How” to get him ACCESS to the material and no one had responded.
By this point, Billy was overwhelmed and finally reached out to Mom for help. I communicated with the Director of Disability Services via email, telephone and face-to-face. I found out that all of the information submitted to be brailled a month ago had not been brailled yet, including the syllabuses for his classes. All of his professors were willing to make accommodations for Billy, but didn’t know “How” to do it. The Director of Disability Services had to reach out to them individually and explain the process of getting Billy ACCESS to his course materials.
The technology battle is still ongoing. Billy met with the AT Specialist at the University several times, but the AT Specialist did not know how to use this specialized equipment and Billy had a hard time understanding his accent. We had to request training through Division of Services for the Blind (DSB) and we are still waiting on a response. In the meantime, we paid for an AT Specialist who knows Billy’s specialized equipment to travel to Charlotte and train Billy on how to use some new technology. I regret that I did not include more detailed technology goals within his IEP starting in middle school.
The Orientation and Mobility (O&M) battle was by far the worst transition experience we both encountered. I sent Billy’s class schedule to DSB in early July. He was referred for O&M services in late July. He did not start receiving services until late August. She worked with him only 3 hours per day for about 3 days and she was not available during Billy’s first week of school. I had to pay for him to have a one-on-one personal assistant to help him get around the campus during that first week. The O&M Specialist was also not trained to teach someone who was born Blind and needed sensory orientation as well as mobility directions. Once again I had to pay for someone to come from out of town to train Billy on how to use the GPS Trekker.
Along the way I began to question whether or not college was for Billy? Now I know that, regardless of the obstacles we face, with or without a disability, it is okay to REST but you should never QUIT! Therefore, when I wake up in the morning, I will continue to ASK and FOLLOW UP until I find someone who can TELL us not only “What” to do but “How” to do it!
On average, about 20% of the students in our public schools have some sort of chronic health condition. Some of these students have Individualized Education Programs (IEPs) because they require specially designed instruction, but many of them do not. Because students have a wide variety of special needs, sometimes a combination of multiple issues, there are also several different options for meeting their educational and health-related needs. The following list will reflect the range of possibilities going from the most common and least restrictive, to the less common and more extreme. A professional school nurse and the child’s personal healthcare providers will play important roles in each of these situations.
- There are many students who do not require any action on the part of school staff other than to monitor and document the administration of medications that are taken at school. In order for this to happen, parents must provide the school with written documentation of medical need from a physician, physician assistant or nurse practitioner (hereafter referred to as “doctors”). They must also give their written permission for school staff to administer the medication.
- Emergency Care Plans are developed for students who have a health condition that can potentially lead to a medical crisis. In the case of some students who are at risk of a life-threatening allergic reaction, there should be an on-going effort to reduce the child’s exposure to the allergen involved, but also a plan that includes actions that staff should take immediately if there is a serious reaction to accidental exposure. The plan may include things like administering Benadryl, giving an Epi-pen injection, calling 911 and/or notifying the child’s parents. Some students have a seizure disorder that requires the immediate administration of specific medication in order to prevent major escalation of symptoms and possible long-term complications.
- Individual Health Plans (IHPs) describe how a student’s special health care needs will be met while they are at school. The plans are written by the school nurse, other school staff and the child’s parents, using information provided by the child’s doctor(s). The IHP will identify the child’s health condition(s), describe how the child is impacted by it, clearly state the actions that should be taken by school staff to manage or treat the condition, and how to respond if the child shows specific signs of distress or unusual developments occur. IHPs are also written for students who self-monitor their health condition and self-administer medication.
- Section 504 Accommodation Plan. Some students have health conditions that require some adjustment in the way things are normally done in order for that student to have an equal opportunity to access, participate in, or benefit from the public education program. For example, a child with asthma may be allowed to take breaks during intense physical activity like PE class, or a child who has difficulty regulating body temperature may need a climate-controlled school bus. Some children may need shortened school days because of low stamina, and others may need flexibility with the school system’s attendance policy due to frequent health-related absences. Each school system creates its own Section 504 Policy within federal guidelines. A child must be determined to be eligible under Section 504 before an accommodation plan will be developed to address that child’s specific needs.
- Individualized Education Programs (IEPs) are developed for children who have been found eligible for special education services because of disabilities that may or may not be related to a health condition. The IEP describes the services, supports and instructional goals required for the student to receive a free appropriate public education. The plan can include accommodations similar to those of a Section 504 Plan, but it may also include health or nursing services that are part of the student’s IHP. The IEP may include annual goals for the student to learn how to better participate in his own health care. The school nurse can also provide technical assistance and training to other school staff who will be working with the student.That service should be documented on the IEP. Sometimes, especially when the student’s health condition is totally unrelated to the disability that the special education focuses on, the IEP will simply mention implementation of the IHP to make sure that school staff are prompted to read the IHP and understand any responsibilities that they may have.
- Medical Homebound Instruction is sometimes required when a student is unable to attend school for medical reasons. Very specific documentation from a doctor is required, and there is usually an expectation that the student will have to be out of school for an extended period of time. If medical homebound services are approved by the school district, arrangements are made for a teacher to provide instruction in the child’s home or another setting outside of school. Because homebound services are considered to be extremely restrictive, the child’s situation is reviewed on a regular basis to see if the child is still unable to attend school.
Medical needs and special health conditions should never stand in the way of a child getting a free appropriate public education. What it takes will vary from one child to the next, but there is an option that is right for each child who wants to learn. When parents, schools and medical providers all work together anything is possible!