Parenting a child with a disability has many unique challenges. Some of these will include advocating for your child, taking them to medical appointments, and taking time off of work for their care.
My oldest daughter is considered to be disabled, and I have learned how to navigate the healthcare system for her care. She was diagnosed with Juvenile Rumatoid Arthritis when she was 2 years old. Years later, as a teen, she started care with a new doctor and found out that this diagnosis was incorrect. She is now diagnosed with a vascular malformation, and has had to have different treatment.
Through our journey for her care, we also learned how to navigate the school system and make sure she had proper accomodations there as well. When I needed to take time off of work for her medical appointments, I used the Family Medical Leave Act to get accomodations at my job.
Knowing your and your child's rights will go a long way toward making sure that your child receives the accomodations that they need to be successful in school and in life.
Different Types of Disabilities.
Children may have different types of disabilities, such as a physical, mental, social or learning disability. Each one will require a different type of care at home and in school.
The law that gives rights to students with disabilities is the Individuals with Disabilities Education Act (IDEA). According to the Center for Parent Information and Resources, the IDEA identifies 13 different categories of disabilities:
Other health impairment
Specific learning disability
Speech or language impairment
Traumatic brain injury
Visual impairment, including blindness
Children with a disability will most likely fall into one or more of these categories. (All the links above are clickable so you can read for more information.) When you talk to your child's school, you should be able to get this information from your pediatrician, or other medical specialist.
When your child goes to school, they will have either an IEP or a 504 plan. When your child starts school, it is important to be sure that they have an IEP or 504 plan in place with the school. This makes the school aware of your child's specific needs, and if they will need any special accomodations in school. Typically, you will need to ask the school to set up an IEP or 504 plan, and then collaborate with the school on making the plan.
Individualized Education Program. (IEP)
An IEP is a plan that the school will use to outline your child's special education program. Your child will have an IEP at school if they have one of the qualifying conditions that are listed above under the IDEA law. The IEP will help to meet your child's unique needs, and allow them to be successful in school. Every child can succeed both academically and socially in school if given the chance. It is the school's responsibility to ensure that your child gets a fair chance for success.
According to Understood, "IEPs are a part of public education. They’re given to eligible kids, ages 3 and up, who attend public school. That includes charter schools.
To be eligible for an IEP, a student has to:
Have one or more of the 13 conditions that are covered under IDEA, which includes learning disabilities like dyslexia and
Need services to thrive in school
Private schools don’t offer IEPs. But students in private school may be able to get special education through what’s known as a service plan (also called an Individual Services Plan ).
Even before they attend school, babies and toddlers can get services through early intervention . Once kids turn 3, they can get an IEP through their local public school district." Often, kids with a disability can access these early services through a Head Start program or a public preschool. This allows them to get early interventions to do well throughout their school career.
Your Child's 504 Plan.
According to Understood, "A 504 plan is a blueprint for how the school will support a student with a disability and remove barriers to learning. The goal is to give the student equal access at school."
At least once a year, and more often at your request, you will meet with staff at the school that are supporting your child to review your child's 504 plan, and make any changes.
"504 plans often include accommodations. These can include:
Changes to the environment (like taking tests in a quiet space)
Changes to instruction (like checking in frequently on key concepts)
Changes to how curriculum is presented (like getting outlines of lessons)
Accommodations don’t change what kids learn, just how they learn it. The goal is to remove barriers and give kids access to learning."
A 504 plan is meant to remove barriers to your child's education, by allowing them to access school and learning in a way that fits their needs.
For example, since my daughter has trouble walking she was sometimes allowed to use an elevator instead of stairs, to sit in a chair instead of on the floor, and opt out of gym classes that involved a lot of running. Additionally, she was allowed to miss days of school when she was in a lot of pain, or needing to go to medical appointments. Without the 504 plan, this would have caused problems with her school's attendance policy.
Family Medical Leave Act (FMLA).
In addition to the help that your child may need in school, you may need help at work to accomodate your child's medical appointments. The Family Medical Leave Act allows up to 12 weeks of time off per year to care for an ill family member or dependent. This can be incredibly helpful, so that you can focus on your child's care, instead of worrying that you will lose your job.
Here is the criteria for the Family Medical Leave Act, According to the Department of Labor.
"FMLA applies to all public agencies, all public and private elementary and secondary schools, and companies with 50 or more employees. These employers must provide an eligible employee with up to 12 weeks of unpaid leave each year for any of the following reasons:
For the birth and care of the newborn child of an employee;
For placement with the employee of a child for adoption or foster care;
To care for an immediate family member (i.e., spouse, child, or parent) with a serious health condition; or
To take medical leave when the employee is unable to work because of a serious health condition.
Employees are eligible for leave if they have worked for their employer at least 12 months, at least 1,250 hours over the past 12 months, and work at a location where the company employs 50 or more employees within 75 miles. Whether an employee has worked the minimum 1,250 hours of service is determined according to FLSA principles for determining compensable hours or work."
It is important to notify your employer of your child's disability prior to needing time off (if possible) so that you can fill out the proper forms for your FMLA to protect your job. This will help to ease many of your worries so that you can focus completely on your child's care, if they are in the hospital or going to medical appointments.
Advocating for Your Child.
As the parent of a disabled child, there will be times that you will need to advocate for their care, their rights, and their needs. This will take a lot of work and determination at times. Sometimes, in schools especially, overworked teachers are expected to be responsible for IEP's and 504 plans in addition to their other work. Sometimes you will find that they are not managing your child's plan correctly, or in some cases do not know your child even has one.
Even though you may be angry at times, unless the school has actually put your child in danger, I would advise talking to them calmly. The school is an important partner in your child's growth and development, so being kind, giving them the benefit of the doubt, and speaking to them as though it is a partnership can help to get the school on your side. In reality, everyone should be on your child's side.
Fortunately for my daughter, she had a lot of school support in elementary school. Her preschool teacher wrote her 504 plan for us, and made sure that everything was done correctly from the beginning. She also helped us to update every year, as long as my daughter was at that school. Having an advocate to help us early on really taught us what was needed. This allowed us to be more knowledgable and proactive later on.
The reality is though, not all teachers or school staff may be aware of, or knowledgable about, your child's condition. For that reason, you may find yourself frequently needing to explain exactly what your child needs. I understand that it's frustrating (as the mom of a kid with a condition no one has ever heard of) to explain over and over, but with each person, it may be their first time hearing about the condition. So, I would advise being kind, going slow, and giving them a lot of resources to read up on. That saves you and your child from having to explain all the details. The most important point to get across is your child's specific needs in school.
In some instance, the school staff might not be invested in helping your child, for various reasons. Or, they may not agree with the "right" way to help your child. When that happens, you will need to be able to be strong for your child, and to stand up for them and make sure that their needs are met. As a parent, you know your child better than anyone else. You know what they need to be able to do well in school. When the school doesn't want to see you as a partner, it is important to assert yourself on behalf of your child.
Knowing the laws that protect your child becomes very important when you are dealing with a staff that is either apathetic or hostile to what you believe is best for your child. There are always ways to file appeals with your state board of education if your child's school is not meeting their needs. Alternatively, you may want to assert your right to move your child to another school, other than your neighborhood school.
Advocating for your your child may not always be easy, but it will be rewarding in the end, when you are able to see your child walk down the aisle to receive their diploma.
Now you know several laws and regulations that are meant to protect your child in school, and to protect your job. Knowing this information goes a long way to making sure that your child is treated fairly in school, and you are treated fairly in your job. When your child's needs are not being adequately met, you may need to advocate for them strongly. Don't expect the school to do it for you; not all schools are created equal in that regard.
The links above can provide you with some additional information about whether your child qualifies for an IEP or 504 plan, and how to get that into place with your school. Also, you will want to check your school district's webpage to find out who the disability services coordinator is. The school district webpage should also outline the process that you will need to follow.
Let me know in the comments if there is more information that would be helpful for you, with getting your disabled child the services that they need in school. Let me know if there are any other topics that you would like me to cover in another article too! I always love hearing from you guys.
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