Wednesday, October 9, 2013

Children with a Chronic Ilness: School Attendance Issues

The new school year is in full swing, and I hope everyone had a positive start to the year. 

In this post, I am going to address school attendance. All states have “compulsory attendance” laws on the books, stating that a child who fails to attend school for a specific number of days is considered truant, unless the absences fall under a specified list of excused absences, which includes absence due to illness. However, when the number of “excused absences” becomes too much, some schools threaten to bring truancy charges against the parents or threaten loss of credit or advancement to the next grade. 

Children with a chronic illness often experience frequent or extended absences as well as frequent medical visits. It is currently estimated that 18% of all school-aged children live with some type of chronic illness. Of those children, 58% routinely miss school and 10% miss more than 25% of the school year.  As noted in one of my previous posts, however, children with disabilities, including those with a chronic illness, are protected by a number of federal laws. Schools cannot legally penalize a child with a documented disability (or that child’s parents) when that child misses school due to the disability.  Schools are required to accommodate a child with a disability and, in the case of a chronic illness, the health needs of that child. This includes accommodating frequent absences.

I have heard from quite a few parents that schools are giving them a hard time when their child with a chronic illness, such as dystonia, has frequent absences due to that illness. In addition to threatening to not promote a student to the next grade, I have heard that some schools have required a child with dystonia to stay at home and receive instruction from a visiting teacher once or twice a week (homebound instruction). I have even heard about one family where the school suggested they pull the child out of the school system and homeschool him! Parents can, and should, insist that their schools do better at meeting the needs of children with a chronic illness. 

There are steps you can take to help ensure that your child has the opportunity to reach his or her full potential and be educated in the least “restrictive environment,” such as in a classroom with nondisabled peers. The best way to accomplish this is to make sure your child has a “health plan” as part of a “504 Plan” or as part of an IEP.  That plan should include the fact that the child may have frequent absences due to the illness, and state an appropriate protocol for accommodating those absences.  The school should work with you to create strategies for allowing your child to be in the classroom as much as possible, with specific additional support for your child if they are unable to attend school due to illness.

Examples of such strategies or accommodations may include, but are not limited to:

  • Reducing the child’s workload to core concepts
  • Utilizing technology to allow the teacher to directly communicate with the student if the student is absent for more than one day
  • Allowing for creative recess activities
  • Counting Physical Therapy as a Physical Education credit
  • Providing additional instruction after an absence to enable the student to make up necessary work
  • Having a plan for easy re-entry to classroom after an absence
  • Building-up to a full day schedule

The key is having a plan of action in place, and not waiting until after your child experiences frequent or prolonged absences. 

Creating this plan requires communication and team work between the school administration, teachers and parents. Even your child’s medical team can play an important role.  You, the parent, may need to educate the school about your child’s illness. School personnel are not likely to be experts about dystonia. In fact, it is likely that your child will be the first child with dystonia they have worked with.  That is OK. Your goal is to get the most comprehensive and best education possible for your child as well as to help him or her successfully and confidently adjust to living with a chronic illness. The school’s goal is to provide your child access to the educational process so as to enable him or her to reach educational milestones along with his or her peers. Only by working together can parents and schools ensure that these goals will be realized.The first step is, of course, having an IEP or “504 Plan” in place. These documents, created in accordance with federal law, are your child’s best protection. As noted previously, a school’s act of providing benevolent “accommodations” without one of these documents is not enough.  Adding a “health plan” to these documents will serve to address your child’s specific special health needs, including a plan for when your child is absent.

It is possible that there may be a period during your child’s education when both you and the school agree that your child’s health requires that your child stay home and receive homebound instruction.  This placement is the most restrictive educational placement and should only be considered if necessary for the wellbeing of your child. However, there are many ways to make sure homebound instruction is an educationally productive and positive time for your child.

Please remember: parents are natural advocates for their children. It is important to know the law, stay informed and work collaboratively with the schools. Until next time...

Thursday, October 11, 2012

The Law is on Your Side

Fall is here, the leaves are changing colors and kids are all back in school. I know that many of you came into the new school year with concerns about your child and his or her school. Don’t worry. The law is on your side! Please refer to my previous post for a review of the federal laws pertaining to special education, as well as a brief explanation of the historical context for the laws.  

One of the most important things I want to emphasize today is the need to formalize your relationship with the school. This does not mean that you should have an adversarial relationship with the school. On the contrary, you and the school are collaborative partners in educating your child. However, the only way to ensure that your child is receiving appropriate services is to follow the protocols mandated by the federal laws. A number of parents have reported that the school principal or the student’s teachers have said, “Don’t worry, we will take care of your child and make sure everything is OK. We will do whatever we need to do.” As well-meaning as the school’s efforts may be, the only way to be sure that your child is receiving the appropriate services, is for you to do your part in the process. As a parent, your role is critical. You are your child’s best advocate!

The federal disability laws are designed to ensure that a child with a disability receives the services necessary to take full advantage of the educational opportunities being offered. The different disability laws mandate different entitlements, rights, and responsibilities, but each of the laws requires that the school make its educational program accessible to students with disabilities.     

Most children with dystonia will have either an “Individualized Education Plan” (IEP) under the Individuals with Disabilities Education Act (20 U.S.C. §1400, et seq.) or a “504 Plan” under Section 504 of The Rehabilitation Act of 1973 (29 U.S.C. §701, et seq.)  An IEP, in a nutshell, identifies the accommodations and any related services the child needs in order to benefit from the educational program.  A 504 Plan, in a nutshell, outlines the modifications and accommodations the school will provide to ensure that the child has full access to the educational program.  I will discuss these different plans in more detail in a future blog, but for now I want to point out that once implemented, these plans are not carved in stone for the year.  They can be modified, as needed, during the school year. The law does allow for changes to a current year IEP without reconvening the formal IEP team in a meeting, provided the parent and the school agree that no meeting is necessary for the change to take place.  A 504 Plan may similarly be changed during the school year as necessary, with fewer formal procedures. 

Parents are often the first to notice when things are not working out at school. If you find that the accommodations and supports in place are not working for your child, politely request that the IEP team reconvene. You should do this in writing and be specific about your concerns.  This will start the conversation and allow for the school to begin working with you to resolve the problem. As noted above, the team may not need to meet, but your request will start the clock ticking, requiring the school to act.  If your child is under a 504 Plan you should still put your request in writing and ask for a review. The procedural time line is not the same, but the school is not in compliance with the law if the modifications and accommodations in place are not giving your child the same access to the educational program as their nondisabled peers. 

Please remember, parents are natural advocates for their children.  It is important to know the law, stay informed and work collaboratively with the schools.  Until next time . . .

Friday, October 7, 2011

Special Education 101, Section A: Overview of the Federal Laws

When we talk about Special Education in America we are talking about four federal laws:
Section 504 of the Rehabilitation Act of 1973 (§ 504)
Individuals with Disabilities Act (IDEA)
Americans with Disabilities Act (ADA)
No Child Left Behind Act (NCLB)

Any discussion of the federal laws should begin with the landmark 1954 US Supreme Court case, Brown vs. Board of Education, where the Court struck down the practice of race based “separate but equal” schools. The Court held that “education must be made available to all on an equal basis." This case marked the beginning of the recognition that previously limited or excluded populations are entitled to receive the same societal services and benefits as everyone else, guaranteeing “equal access.”

In 1973, Congress passed a sweeping federal civil rights law protecting people with disabilities, the Rehabilitation Act of 1973.  Section 504 of the Act stipulates that “otherwise qualified individuals shall not be excluded from participating in, be denied the benefits of, or be subjected to discrimination by recipient programs or activities, if that treatment is due to their respective disabilities.”   The law prevents discrimination and gives access to students, employees, and customers of entities that receive federal money, which clearly include public schools.  As a result, today more than 96% of students with disabilities are served in public school buildings.  Section 504 will be the focus of future blog spots.

In 1975, Congress passed a major federal law giving an educational entitlement to all children with disabilities.  The “ Special Education Law” or, as originally passed, the Education for All Handicapped Children Act, Public Law 94-142, states that schools must design individual education  programs for students with a disability that affects his or her educational performance,  and provide  any “related services” the child requires in order to take advantage of the special education programs.  Further, the law requires that the special education program be designed to confer benefit.   While the law remains essentially the same today, Congress has passed a number of amendments to the law.   For example,   in 1990 Congress changed the name of the law to Individuals with Disabilities Act – IDEA.  In 1997 they moved the law’s focus from the implementation of special education programs to assuring a quality special education program with measurable goals to show progress.  In 2004 Congress passed amendments so as to better align IDEA with the new No Child Left Behind Act, with greater accountability requirements for all students, including those with disabilities.   IDEA remains as strong as ever today, and is the primary special education law in public schools.  It will be the focus of many future blog spots.

In 1990 Congress passed the Americans with Disabilities Act, prohibiting discrimination in services, programs and activities provided by state and local governments and all businesses, public and private with 15 or more employees.   The law prevents discrimination and gives access to people with a disability not just to entities that receive federal money, but also to private entities.

In 2002, Congress passed the No Child Left Behind Act mandating that all students, including student groups based on poverty, race and ethnicity, disability and limited English skills, meet specific academic benchmarks.  The law is designed to promote equal academic proficiency.

You may have noticed the common thread that began with Brown vs. Board of Education and continues in this series of laws to this day.  It is equal access, which includes physical access, educational access and access to education programs that will promote academic proficiency.    You will hear a lot about these laws in more detail in this blog, but this very basic overview helps set the foundation. 

Please remember, parents are natural advocates for their children.  It is important to know the law, stay informed and work collaboratively with the schools.  Until next time . . .


Welcome to the Dystonia Medical Research Foundation’s (DMRF) new Special Education blog! We saw many of you at the DMRF Children and Family Symposium in August in Chicago. With this blog we hope to bring you an ongoing primer and conversation about educating children with disabilities, your rights as parents, and suggestions about working with schools.  

We now also have a special email address for you to submit confidential questions or concerns. While we cannot give you specific legal advice, and this blog does not constitute legal advice, we can try to address issues that come up in a general and broad manner and offer some useful information.  

The blog will cover the federal laws pertaining to special education, assistive technology, parent advocacy, transition to college, rehabilitative services, and more. In addition to a schedule of topics, we will also share relevant special education happenings as they come up.  Comments and suggestions are always welcome.  We want this blog to be informative and helpful for you! Contact us any time at

The first six segments of the blog will be Special Education 101: A- F