Resources

Federal Laws That Protect Your Child

A child with a bleeding disorder has the right to an education and is protected under two important federal laws. How they are used or deemed necessary may vary by state and school district. These laws are not always applicable in private schools, preschools or daycare settings. You should be able to obtain clarification about what is required by your child’s school from your state education department, local school district or school board.

The Basics

• Schools are required by law to provide an Individual Health Plan (IHP) for any child with a chronic health condition. This plan is developed by the nurse and parent and to be shared with the child’s classroom teachers and other school staff who work with the child. While the school nurse is ultimately responsible for developing this plan, the parent should be prepared to initiate this process.
• Students with bleeding disorders may qualify to be served with a 504 Accommodation Plan under the Rehabilitation Act of 1973. A 504 provides classroom accommodations provided by the regular teachers. This plan is re-evaluated each year. While the school is responsible for initiating this yearly evaluation, the parent needs to be proactive and ensure that the process is done.
• If the condition severely impacts the child’s daily performance, the child may qualify for special education services under the classification of Other Health Impaired (OHI).

Students in special education receive an Individualized Education Plan (IEP) and small group instruction. To qualify for the service, more extensive documentation and evaluation is required.

Homebound Service

Need for homebound services is a decision that a parent should carefully discuss with the treatment center. A child with hemophilia may be very healthy one day and then suddenly have a bleeding episode requiring the child to miss school for an extended period. This child would be eligible for regular homebound services. Some children experience infrequent absences of only 2-3 days due to bleeds. Even though it may only be for a few days, these days add up over a year’s time and can greatly affect academic performance.

Therefore, some providers and parents decide to request Intermittent Homebound, a service that allows a homebound teacher to respond immediately whether it is infrequent, short absences or a longer school absence due to hospitalization. It’s wise to have a plan in place in advanced so if a medical situation arises there is no wait time. Once homebound begins, it is critical that parents, teachers and the homebound teacher stay in regular contact to ensure that work missed during absences is made up. Each school district has a homebound form that can be sent to the treatment center for authorization. The guidance counselor is usually the contact for these services. It is important to remember that homebound services are helpful but are not a substitute for regular school. Encouraging school attendance is very important.

(Reference: South Carolina Hemophilia Treatment Center, Prisma Health)

Joby Robinson, PH.D and Jennifer Meldau, MSRN, CPNP) 

A Closer Look at the IHP, 504 Plan and IEP

Important protection for a child with hemophilia or other bleeding disorders is an individualized health plan (IHP). A number of states now mandate that schools have on file an IHP for a child with a disability, which provides classroom teachers, the school nurse and administrators with specific instructions for meeting the child’s healthcare needs.An IHP can suffice to help meet the student’s medical needs; however, once an accommodation is required to meet his or her educational needs, a 504 plan or IEP is called for.

The IHP can serve as the health plan component of a 504 plan, and for students qualifying for special education it can be incorporated into the Individual Education Plan when the healthcare issues are related to the educational needs of the student.

Depending on the school and its policies, children with a health condition that can lead to sporadic, unpredictable absences may also qualify for homebound instruction. If you are concerned that your child might miss several days a month because of bleeds, ask the school at the beginning of the year to set up a plan for intermittent homebound instruction.

Section 504 of the Rehabilitation Act of 1973 (Public Law 93-112) ensures equal access to an education for a child with a disability that requires some accommodation, whether that disability is visible or hidden. The law specifies that anyone with a physical or mental impairment that substantially limits at least one major life activity—including caring for one’s self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning, reading, writing or performing math calculations—is eligible for “reasonable” accommodations.

A written 504 Accommodation Plan is a legal document that lists specific accommodations such as an extra set of books so the child does not have to carry a heavy backpack between school and home; a rolling backpack or top-row locker; modified physical education; early dismissal for class changes; tutoring; and extra time to complete assignments when absent. Federal or state governments do not usually reimburse school districts for providing the accommodations of 504 plans.

What’s in the IDEA?

The Individuals with Disabilities Education Act, or IDEA, assist children with disabilities and empower them to attend public schools.  If your child has hemophilia or another bleeding disorder, they may qualify as having a disability or needing special education services.

Section 504 of the Rehabilitation Act of 1973, is a federal civil rights law to stop discrimination against people with disabilities.  504 compliance and coordination falls under the District Director of Student Services, not the school’s principal.

Having a health issue, such as a bleeding disorder, makes some student more vulnerable to attending school than others. It is important to assess your child’s need for a 504 plan (for health related condition) or an Individualized Education Plan (IEP – a 504 plan coupled with learning disability issues). Generally, for health related issues, the parents will initiate the 504 plan.

The first step in developing a 504 plan (for health related condition) or IEP (a 504 plan coupled with learning disability issues) begins in the meeting when the parents, the district office, and the school administrators discuss how the bleeding disorder may affect the child while attend school. Parents should meet with school officials and determine how the student’s blood disorder affects and impacts the child’s education and what are possible safety issues for the child.

Typically, parents talk to school officials, such as the Principal, Guidance Counselor, or School Nurse.  The principal would contact the District Office Special Service Director.  The Director, would arrange a meeting with the parents to review the proper documentation stating the child’s disability.  After verification of the disability and with input from the principal, parents and the student’s teachers, the Director will draft a 504 plan.

What Parents Need to Know:

– Documentation from the physician confirming the child has a specific health issue, (such as a bleeding disorder.)

– The first step in obtaining a 504 plan is initiated by the parent to see if the child qualifies for a Section 504 Plan or an Individual Education Plan (IEP).

What Parents Should Expect:

– It could take more than one discussion or meeting to finalize the 504 plan.

– Parents should revisit the 504 plan periodically to determine if it is still adequate when changes in the child’s health or activities occur.

Sug­gestions for your child with a bleeding disorder:

• Maintain perspective. Remember that school provides opportunities. Kids should participate in the classroom, and in physical ­education, field trips and other activities that promote peer relationships.
• Talk with staff, and know your rights. When you register your child at school, note that he or she has a bleeding disorder. Schedule a meeting with your child’s teachers, school nurse or health aide, principal, physical education instructor and others, as needed. Talk about the basics of your child’s bleeding disorder and how to recognize the signs of a bleed (e.g., limping, favoring one arm or swelling), and when to call you. Discuss first aid for simple bleeds, especially rest, ice, compression and elevation, or “RICE.” And determine the need for extra time for tests or a set of books at home.
• Prepare for sick days and emergencies. School staff should call you if they see signs of a bleed, bruise or other problem. For a serious issue, such as a head injury or a head, neck or large muscle bleed, staff should call you and 911. If you have preferences about how or when to be contacted, advise the school. Also tell school staff in advance which hospitals have ­bleeding disorder medications so they know in case of emergency.
• Develop a plan for absences. Find out if your school will send classroom work home or have it available online, so your child can review it at home.
• Establish a routine. Budget time for prophylaxis. It is best to infuse in the morning, ideally before your child goes to school because factor is at its highest efficacy during the active portion of the day. You may need an extra 30 to 45 minutes in the morning, so factor this time commitment in, whether you drive your child to school or send him or her on the bus.
• Learn to let go. Allow your child to try new classes and new pursuits. Encourage new friendships.
• Be open to safe activities and sports. If a child is on a regular treatment dose schedule, his or her clotting factor levels may be high enough that he or she can participate in all but the most aggressive activities. Just check with your HTC about any recommended restrictions.

Helpful Resources:

• South Carolina Department of Education / Special Education Services
• The Parent Guide to Special Education Services in South Carolina
• List of directors of programs for students with disabilities throughout various counties in South Carolina
• College Guide for Students with Disabilities
• How the 504 differs from the IEP
• NHF Steps for Living (Child Care and School)
• NHF Next Step for Living (Tools for Connecting with a School)
• Steps for Living: Field Trips & Extracurricular Activities

Information on How to Become an Advocate for your Child:

• The Center for Health and Health Care in Schools
• Parent Advocacy Coalition for Educational Rights
• National Dissemination Center for Children with Disabilities
• The Families and Advocates Partnership for Education
• US Department of Education
• National Association of School Nurses