Some premature infants or full-term infants are born with chronic medical conditions – and when they leave the hospital are in need of additional help at home, and eventually in school, due to their prematurity or medical illness. Other children acquire a medical condition at some time during their life.
12.5% of babies are born premature in the USA. That is a total of half a million babies each year – an increase of over 30% during the last twenty-five years, according to two new reports, one by the Institute of Medicine and the other by the National Institutes of Health.
Approximately 15-20% of children in the United States have a chronic illness at the time of birth or an illness that is acquired during their life. Many of these conditions impact on their life and school work. Some of the chronic conditions include, but are not limited to, brain tumors, cancer, orthopedic impairments, cardiac disease, seizures and other neurological disorders, organ transplants, inflammatory bowel disease, genetic disorders, diabetes, sickle cell disease, cystic fibrosis and other respiratory conditions.
Services are provided for infants or young children up until the age of three – if deemed necessary by various agencies. When children turn three years old, services are provided through the Department of Education (if the child is eligible for services).
Early Intervention (EI) is provided through the Department of Health in each county. A parent can access EI by either by calling Early Intervention Services in their county or borough or by calling the Early Childhood Direction Center (ECDC) in each county or borough. The ECDC helps parents with their children from birth – five years old. ECDC is a very helpful resource for parents.
The EI program or ECDC will evaluate your child and let you know if resources through the Department of Health are available at no charge to you. If you feel your child is in need of services but didn’t qualify under EI then you can look to private providers, some of which will be covered by your insurance.
Many children do fine in school, but others need some extra help. Special help is given to young children through EI and, after three years old, through Section 504 Accommodation Plans or Special Education services.
What Is a 504 plan?
The “504” in 504 plans refers to Section 504 of the Rehabilitation Act and the Americans with Disabilities Act (ADA), which specifies that “no one with a disability can be excluded from participating in federally funded programs or activities, including elementary, secondary or post-secondary schooling.”
The ADA obligates any entity accepting public funds – including private schools, if they have lunch programs or other assistance provided by the government – to ensure that people with disabilities have access to and can safely use its services. A 504 plan spells out the modifications and accommodations that will be needed for these students to have an opportunity perform at the same level as their peers.
“Disability” in this context refers to a “physical or mental impairment which substantially limits one or more major life activities.” Major life activities include caring for oneself, performing manual tasks, walking, seeing, hearing, speaking, breathing, working, and learning. This can include physical impairments; illnesses or injuries; communicable diseases; chronic conditions like asthma, allergies and diabetes; and learning problems.
For a school, the necessary accommodations may be written up in a 504 plan.
To comply with the ADA, an organization or school would be required to make an existing program available to a person with disabilities, not create a new program. Compliance may involve:
- ramps and lifts to make buildings accessible to those in wheelchairs
- Medical personnel to allow children with chronic illnesses to participate in activities
- blood sugar monitoring
- keyboard for talking notes
- an extra set of books to keep at home
- extra time for taking tests
- breaks or rest time during day
- separate place to take test
- time in the day to rest
- extra snacks during the day
- a peanut free lunch environment
- microwave for children with Celiac Disease
Some children require special education services including a Free, Appropriate, Public Education (FAPE) in the Least Restrictive Environment (LRE) as stated in the Individuals with Disabilities Act (IDEA). It is important to know that the IDEA is reviewed and changed every few years. You will be looking at the most current IDEA – revised in 2004. It explains classes, related services and all other services granted under IDEA 2004. Documents under special education law are referred to as Individual Education Plans (IEPs).
Please go to ‘Building the Legacy: IDEA 2004’ for the most current information. If you want, you can also look at the related service provision. An excellent web site for learning about education advocacy, special education terms and to ask specific questions is www.wrightslaw.com.
It is my mission to help advocate for children with health issues and academic challenges who reside in the Greater New York area. At Patty Weiner Consults, we care about your child’s learning needs from birth through young adulthood.
There is a lot of information out there, but I feel these links will be most helpful to parents trying to navigate the complex educational system. My next entry will be on ‘Turning Five’, the ‘Referral Process’ and then on ‘Timelines and Tips’ for Parents. Good luck!
Patricia Weiner, MS is presently an educational consultant and advocate for Children with Special Health Care Needs (CSHCN) and academic challenges. She works for The Making Headway Foundation, is a private consultant and faculty mentor for graduate students at Bank Street College of Education in New York. Over the past 35 years, she has worked as a special educator, child life specialist, health-education specialist and has been the administrator of several programs. She has presented nationally on education and child life, published articles and chapters in child life text books, and has received several awards for child advocacy for this population of children.
The views and opinions expressed on this blog are purely the blog contributor’s. Any product claim, statistic, quote or other representation about a product or service should be verified with the manufacturer or provider. Writers may have conflicts of interest, and their opinions are their own.