Children all over the United States go to school with a chronic illness. Each year in this country, approximately six million children – ranging from newborn to seventeen years old – are hospitalized for many different conditions.1 It is estimated that 13-17% of the children in the US have a chronic illness. (Stein, R.E.K., Silver, E.J., 2002). Some professionals say that the percentage is as high as 20%. There are so many chronic conditions that it would be difficult for school staff to understand all of the different medical illnesses and how they impact on a child’s education, socialization and behaviors during school.
Some conditions include but are not limited to cancer, muscular dystrophy, diabetes, blood disorders, asthma, celiac disease, genetic disorders, metabolic disorders, cardiac conditions, seizures, and many others. Some illnesses are visible and some are invisible. You might not know a child in your class has cardiac disease unless you were told, but you would know that a child in a wheelchair has some type of chronic illness that limits mobility.
In my 35 years of working with children with a chronic illness – or known today as ‘Children with Special Health Care Needs’ (CSHCN) – and their families, the gaps in service haven’t closed enough. In July, 1980, a major investigation was begun at Vanderbilt University to address the needs of chronically ill children and their families. The Vanderbilt study included children with 11 specific chronic diseases. This landmark study identified many gaps in services related to the children’s education in the 80’s. Some still remain TODAY in 2012!
The following gaps were noted in 1983. Let’s think about today, in 2012, about how you as parents, educators and health care providers feel?
- poor communication between healthcare providers and school staff
- lack of information on specific illnesses for staff when children returned to school
- frequent and/or intermittent absenteeism
- inadequate home instruction
- lack of educational support
- poor identification of special learning needs
- a general lack of educational service coordination
(Hobbs, Nicholas, Ireys, Henry, Perrin,James, 1983).
In 1984, it became the mission of the Chronically Ill Children’s Program (CICP) at North Shore University Hospital, Manhasset, New York – under the leadership of Jessica Davis, MD – to heighten the awareness of educators and other service providers to the many issues of children with chronic illnesses or (CSHCN). We served as a multidisciplinary team – a social worker, pediatrician, health education specialist and nurse – striving to coordinate medical, educational, recreational, financial and psychosocial services for the children and their families.
From 1984 – 1987, we enrolled 504 children with various conditions such as diabetes, cancer, sickle cell disease, genetic disorders, asthma, muscular dystrophy and many other illnesses. We asked the parents to fill out a parent questionnaire to see which gaps in educational services they felt were of critical importance. The gaps this group of parents felt were major were the following:
- lack of communication from the health care team to the school staff
- parental difficulty navigating the complex educational system
- school absence
- limited availability of nursing coverage in school
- little or no training for nurses or 1:1 Para’s to provide health care services in school
- lack of information about the child’s illness and its impact on education, the family and society
- lack of or inconsistent home or hospital instruction
- inflexible attendance polices
As you can see, some gaps haven’t closed enough and parents are overwhelmed in dealing with the educational system – even though the law is on their side. There is so much inconsistency from state to state and district to district. The federal laws are implemented, but not necessarily in a timely manner, or carried out to the extent that they should be for the children. The educational system is so cumbersome and confusing that it is hard for parents to do this on their own!
It is not ‘good enough’ to have a 504 Plan or Individual Education Plan (IEP) if the plan doesn’t provide what the child needs according to the law.
If you have difficulty navigating the educational system, call an educational consultant, advocate or attorney that practices near you.
Some resources that are of no-cost to parents are as follows:
1) Resources for Children with special Needs – www.resourcesnyc.org or 212-677-4650
2) Council of Parents Attorneys and Advocates, Inc. (COPAA) www.copaa.org/
3) Advocates for Children of New York – www.advocatesforchildren.org/ or 866-427-6033
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.