Category Archives: Advocacy
By Billy Pickens, Intern
As a senior in college, I have had the pleasure of taking many classes in which I received a great deal of powerful information. One thing that made every college class worthwhile was the fact that, no matter how important I felt each class was, I still learned a valuable lesson that would leave a lasting impact on my life. Some of these lessons were immediately recognizable. However, there were some that did not occur to me as extremely valuable until I really thought about them.
One specific example of the latter was a lecture given by my General Psychology professor. In this lecture, we were discussing the history of mental illness in America and how it has been dealt with over time. My professor made the point that prior to scientific research and progressive movements within the disability community, those with disabilities were often seen as useless or less than human. Many were seen as being under the spell of a demon and therefore were locked away, abused or even killed simply because they did not live up to the standard of what was considered “normal.”
While I found this history both riveting and disheartening, it was a story I had heard too many times before as a person with a disability. For that reason, at first I did not see it as anything inspiring or thought-provoking. It was not until I began serving on the Student Advisory Board for my school’s Disability Services that these stories gained more impact and became more important to me.
As a student advisor, one of my tasks is to go into classrooms throughout my school and talk to students about how I have managed to live a normal, productive life despite my disability. My peers and I share stories of how we had been underestimated, written off and treated unfairly by many who had negative perceptions of persons with disabilities. It was through our stories, and students saying that our testimonies really changed their own perspectives, that I was reminded of my professor’s lecture.
I began thinking more about my own journey and how I found myself in college striving for employment, yet many of my friends with my disability are still relying heavily on the support systems around them. While pondering the perceptions of the world and the history of disability culture, I came to the conclusion that one of the key reasons why many with disabilities struggle to flourish in today’s society is society’s attempt to change a person’s disability instead of adapting to it. However, I believe that this is not so much the fault of society in general, but the support system of the person with a disability.
From the time I was born, my parents were prepared for the possibility that I would be totally blind with gradual hearing loss. There had been a slight hope that maybe I would be born completely normal. However, being that my condition was genetic and the chance of me inheriting the gene was extremely high, my parents knew that this was highly unlikely. Even so, I was raised normally, participated in activities relevant to my age group and attended public school.
There was always the lingering conversation of restoring my sight. I remember from a young age attending conferences centered around vision restoration. While I willingly agreed to attend these conferences with my parents, restoring my sight was hardly ever a desire of mine. What is the point? I am achieving my goals despite my blindness and have no time to focus on changing it.
I say this to say that if you are a person who has a disability or are associated with someone who has a disability, the last thing you should do to help that person is try to cure them of that disability. I am not saying that if the opportunity to cure someone of a disability arises you should not benefit from it. However, you should focus more on adapting to the present situation than trying to find a cure. In my opinion, this is the most important characteristic of someone who overcomes obstacles and turns perception into progression.
We have come so far as a culture in awareness of our value to society. We are showing the world each day that we can break down barriers, and do it with our disability. People like Helen Keller, Louis Braille and others were not respected just because of their disability, but because of what they chose to do with that disability. Those who embrace their disabilities and use them as motivation instead of defeat will have the main ingredient in conquering any obstacle that comes their way. Likewise, people who support those with disabilities may experience a shift in their own perspective when they focus more energy on teaching skills to successfully adapt to the environment. Through this approach, they will see how obstacles are conquered and real progress is made.
At this very moment, many parents are very worried about the possibility that their child might be required to repeat their current grade. Many of these parents have received one or more letters notifying them that their child was at risk for retention because they were not meeting grade-level expectations for learning. These are often form letters that are sent automatically based on the child’s performance on academic testing done at several points during the school year. In many schools, the warning letters do not take into account that the student may have an identified disability.
With only a couple of exceptions, North Carolina’s public school law gives principals sole authority to determine what grade a student is assigned to. The exceptions include 3rd grade, when the Read to Achieve law mandates retention of any child who does not demonstrate “proficient” (grade level) reading skills on the End-of-Grade (EOG) assessment. Principals can request a “good cause exemption” for students who meet certain criteria. Students who have Individualized Education Programs (IEPs) based on disabilities that impact reading are eligible for such an exemption. The tricky thing about this is that the principal is not required to request the exemption. They can still choose to retain students who have this kind of disability. In high school, students are assigned to a grade based on the number and type of course credits they have earned. However, a high school principal can decide to assign a student to a homeroom that is different from the grade shown on their official transcript.
Parents do not have to just sit and wait anxiously for that last report card. There are things that they can do to try to help their child.
If you get a letter in January or February warning you about possible retention, you can contact your child’s teacher(s) to get more information about why the letter was sent. If your child is not learning at the expected rate, you can ask about what actions have been, or can be taken, to help them make more progress. For a child who does not have an IEP, this might mean starting or intensifying research-based interventions as part of a multi-tiered system of support (MTSS).
If your child has disability and receives supports as part of a Section 504 Accommodation Plan, you might want to consider asking for an evaluation to see if the child now needs special education services. If your child already has an IEP, you can request an IEP Team meeting to consider making adjustments to instruction and/or supports to improve learning.
Under any condition, it would still be a good idea to meet with the school principal to discuss your concerns about possible retention. Most public schools are too large to expect a principal to know each child well. You can discuss potential pros and cons for your child. For example, you can explain why it might make more sense to promote your child to the next grade with targeted supports and services, than to require the child repeat the entire curriculum of his/her current grade. You can also take that opportunity to share additional information about your child that the principal can consider as he/she makes their decision.
The principal does have the authority to make the final decision about retaining or promoting your child. However, you can try to influence that decision before it is made. You can also continue to advocate for your child to get the instruction and services that he/she needs next year, regardless of the grade they are assigned.
As one school year winds down, its good to start thinking about the next year. Perhaps you have a child who will simply be moving from one grade to another in the same school. Maybe your child is facing a more dramatic transition such as:
- Starting Preschool for the first time
- Entering Kindergarten
- Moving from Elementary to Middle School
- Beginning High School
It is time to move from thinking to planning! Take steps to make this transition as smooth as possible by gathering information about what might be coming up, and sharing important information about your child with the right people.
If your child is staying at the same school, find out what might be different for the coming year (e.g. class size, number of teachers/aides, daily schedule, curriculum, meal times, etc.). Each of these factors could impact your child and may require some changes in how your child’s needs are met. You might also want to speak with the Principal about the classroom environment and/or teacher styles that are likely to be successful or unsuccessful for your child. Hopefully the Principal will use this information to make a good match when class assignments are made.
If your child is moving to a new school, you will still want to know the things mentioned above, PLUS:
- Visit the new school to check out the physical layout and ask about a typical day
- Think about any possible barriers or challenges that your child might have in the new setting
- If your child is entering middle or high school, ask about required courses and any options that may exist. Some courses are offered at multiple difficulty levels, and there may be other ways to help make sure that your child gets a course schedule that will work for him/her
- Request a transition IEP meeting to discuss and make decisions about any changes that may be needed in the accommodations, modifications, supports, services and/or goals
- For many children, it is helpful for them to have an opportunity to walk through the new school and possibly see their classroom(s) and meet their teacher(s) sometime before school starts. There may also be other steps that you can to help make this transition a smooth one.
Most importantly, stay positive and help your child feel good about the upcoming school year!
In many IEP meetings one of the school system staff members is introduced as “the LEA” without further explanation. If there is a lot of discussion and debate around an issue, it will often appear that this LEA has more influence than most other members of the IEP team. This may not seem fair to parents, who usually are outnumbered in the first place. However, it is important to understand that the LEA Representative does have a unique role in the IEP process.
First, let’s clear up some education jargon. LEA is short for Local Education Agency. Each individual school system that has a central administrator, usually known as the Superintendent, and School Board is actually a distinct LEA. Some LEAs are county-wide, some just cover a particular city, and some are public charter schools. Charter schools will typically have a Board of Directors rather than an elected School Board, and their central administrators have a variety of job titles, such as Headmaster, Dean or Principal.
IEP teams are required to include someone who can represent the LEA. The person who serves in the role of LEA Representative must meet certain criteria:
- Be qualified to provide, or supervise the provision of special education instruction;
- Be knowledgeable about the general education curriculum; and
- Have knowledge of the resources available to that LEA.
Every student with a disability who qualifies for special education services must be provided with a free appropriate public education (FAPE). It is the LEA (school system) that has the responsibility for delivering FAPE to its students. It is also the LEA that is held accountable when that does not happen.
To a large extent, the contents of an IEP define what FAPE looks like for that particular student. This makes the decisions of the IEP team extremely important and legally binding. IEP team decisions are expected to be based on data and the input of every member of the team. Most of the time IEP teams are eventually able to reach decisions that everyone can live with. That’s called reaching a consensus. If the team fails to reach consensus about a relatively minor issue, the matter may be put on hold until more information can be gathered.
When the IEP team cannot come to agreement about a really important proposal, the LEA Representative has the authority to make the decision. This allows the team to move forward with finalizing the IEP so that the student can be served. Having a clear decision also gives the parent the right to formally challenge that decision through one of the options available for resolving special education disputes. Those options are detailed in the Procedural Safeguards Notice* that is often referred to as the “Parent Rights Handbook.” Parents should be given a copy of the handbook at least once each year, but they can ask for a copy at any time.
In rare cases, individuals who serve as the LEA Representative over-use their decision making authority and the IEP team is not able to function properly. If this happens, a higher-level special education administrator should be notified so that corrective action can be taken.
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.