information & referral center servicing children and families with special needs
Queens Sickle Cell Advocacy Network, Inc.
Copyright 2005 - 2007 All rights reserved
what parents can do
Stay active in your child's school. Get to know the teacher and school staff and maintain open communication.
Communicate what you want for your child. Tell teachers about your child's illness. Let teachers know how to meet your child's school needs. Tell them what you know about your child's physical problems, such as a hard time carrying books or problems keeping up in gym when sickle cell problems occur. Also tell school staff the signs of sickle cell difficulties, such as fatigue, fever and jaundice.
If your child has to be in the hospital check to see if the hospital has a school program. Or request your child's school send a teacher. Help by collecting your child's homework assignments so that your child can continue to receive credit.
Attend parent/teacher conferences. Bring a friend or family member with you who also knows your child. Take notes and don't be afraid to ask for time to think about a certain decision.
The parent is a child's number one advocate. Stay informed and become knowledgeable about laws for children with disabilities.
An important law is the Individuals with Disabilities Act PL 101-476 (IDEA) which states the rights of children with disabilities and of their parents.
A basic part of the law says:
States must provide a free appropriate public education to all students (ages 3-21) who are disabled.
Children must be assessed for their disabilities, strengths and needs.
Another important law to be aware of is PL93_112, the Rehabilitation Act. Section 504 was designed to end discrimination on the basis of a physical or mental disability in any program getting federal financial aid as well as public schools. Some children with health problems may not need or be eligible for services under IDEA but may need special help or modifications under Section 504. Some examples of modifications may include: Shortened school days or week, special equipment, modified academic coursework and so on.
Ask school staff to share their observation of your child with you.
