An Introduction to Chronic Illness and Its Challenges
In my 35 years of working with children with a chronic illness – known today as ‘Children with Special Health Care Needs’ (CSHCN) – and their families, there are still many gaps in services in the US for these children. There are financial entitlement issues, psycho-social concerns, school issues, finding socialization programs and medical coordination.
Chronic Illness is an ‘umbrella’ term for children who are always living with a health condition that interferes with their everyday lives throughout childhood. Often they are hospitalized for periods of time, miss school, aren’t able to participate in childhood activities and their condition may affect daily life activities such as walking, talking or eating.
Children all over the United States go to school with a chronic illness (1). Some conditions include – but are not limited to – cancer, muscular dystrophy, diabetes, cystic fibrosis, blood disorders, asthma, Celiac disease, genetic disorders, metabolic disorders, cardiac conditions and seizures. It is estimated that 15-18% of children in the US have some type of chronic illness. Some professionals feel that the percent is as high as 20%.
In this blog, the emphasis will be on children with an ‘Other Health Impairments’ classification. I will explain why sometimes children should have a more specific health classification. In future blogs, I will focus on ‘Traumatic Brain Injury’ and how parents in New York City can navigate the complex educational system that is in place.
The Law
Since 1975, children in all 50 states are entitled to a free and appropriate public education (known as FAPE) in the least restrictive environment (LRE). Before 1975, most children with special needs didn’t attend school or were served in state facilities.
Initially, the first piece of federal legislation was referred to as: Education of all Handicapped Children Act (Public Law 94-142, now codified as IDEA (Individuals with Disabilities Education Act). IDEA has been reauthorized several times. There are many web sites to help parents understand the reauthorization process, which will be listed at the end of this blog. THE IMPORTANT PIECE OF INFORMATION IS THAT ALL CHILDREN IN THE US ARE ENTITLED TO ‘FAPE’ IN THE ‘LRE’.
Categories of Disability
Under IDEA, there are 14 categories of disability: Autism, Deaf-Blindness, Deafness, Developmental Delay (for children birth to age 3 under IDEA Part C), Emotional Disturbance, Hearing Impairment, Intellectual Disability, Multiple Disabilities, Orthopedic Impairment, Other Health Impaired, Specific Learning Disability, Traumatic Brain Injury and Visual Impairment Including Blindness (2).
‘Other Health Impairments’
‘Other Health Impairment’ means having limited strength, vitality or alertness, including a heightened alertness to environmental stimuli, that results in limited alertness with respect to the educational environment, that –
(i) Is due to chronic or acute health problems such as asthma, attention deficit disorder or attention deficit hyperactivity disorder, diabetes, epilepsy, a heart condition, hemophilia, lead poisoning, leukemia, nephritis, rheumatic fever, sickle cell anemia, and Tourette syndrome; and
(ii) Adversely affects a child’s educational performance. [§300.8(c)(9)]
What’s immediately clear from this definition is that there are quite a few disabilities and disorders that fall under the umbrella of ‘other health impairment’ – and that those disabilities are very different from one another. This makes it difficult for us to summarize ‘other health impairment’ and connect you with more information and guidance on the subject.
And that’s why, as my series continues, we will break this discussion down to closer looks at each of the disabilities listed, such as ADD or AD/HD, diabetes, epilepsy, heart conditions, and so on.
I would also like to point out that IDEA’s definition uses the phrase “such as…” That is significant. It means that the disabilities listed are not the only ones that may be considered when a child’s eligibility for special services under IDEA is decided. A child with another health impairment (one not listed in IDEA’s definition) may also be found eligible for special services and assistance. What’s central to all of the disabilities falling under ‘Other Health Impairment’ is that the child must have the following:
- limited strength, vitality, or alertness due to chronic health problems; and
- an educational performance that is negatively affected as a result (3).
A Few Resources with Which to Start
- www.NICHY.org – a web site about disabilities, national and state organizations, publications etc.
- www.lehman.cuny.edu/faculty/jfleitas/bandaides – a web site about chronic illness
- www.wrightslaw.com/ – a website about special education, law and advocacy
- www.parenttoparentnys.org/ – a web site whose goal is to connect and support families of individuals with special needs
It is my mission to help parents navigate complex educational and healthcare systems to help children get the services they need. In my next blog, I will talk about Traumatic Brain Injury (TBI) and why children should sometimes have a specific health classification. The only health issues at the present time that are addressed under IDEA in the Traumatic Brain Injury category are where either brain and spinal cord tumors or a brain injury caused by an accident is mentioned, or orthopedic impairment, where several conditions are listed (such as Cerebral Palsy, etc.)
We will also begin our ‘roadmap of how to navigate the New York City Department of Education’.
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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.