Managing Chronic Health Needs in Child Care and Schools: A Quick Reference Guide / Edition 2 available in Paperback
Managing Chronic Health Needs in Child Care and Schools: A Quick Reference Guide / Edition 2
- ISBN-10:
- 1610021754
- ISBN-13:
- 9781610021753
- Pub. Date:
- 08/01/2018
- Publisher:
- American Academy of Pediatrics
- ISBN-10:
- 1610021754
- ISBN-13:
- 9781610021753
- Pub. Date:
- 08/01/2018
- Publisher:
- American Academy of Pediatrics
Managing Chronic Health Needs in Child Care and Schools: A Quick Reference Guide / Edition 2
Paperback
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$62.95Overview
Product Details
| ISBN-13: | 9781610021753 |
|---|---|
| Publisher: | American Academy of Pediatrics |
| Publication date: | 08/01/2018 |
| Edition description: | 2nd ed. |
| Pages: | 281 |
| Sales rank: | 651,830 |
| Product dimensions: | 9.20(w) x 10.80(h) x 0.70(d) |
About the Author
Elaine A. Donoghue, MD, FAAP, is vice chair for academic affairs at Lehigh Valley Health Network and a general academic pediatrician. She is the past cochair of the American Academy of Pediatrics Council on Early Childhood and authored the policy statement on quality early education and child care. Her background is in early childhood health, child protection, telehealth and pediatric education. Dr Donoghue received her undergraduate degree from Georgetown University and her doctorate in medicine from Tulane University School of Medicine.
Colleen A. Kraft, MD, MBA, FAAP is the 2018 President of the American Academy of Pediatrics. Her background includes work in primary care pediatrics, pediatric education, and health care financing. Dr. Kraft received her undergraduate degree at Virginia Tech and her M.D. from Virginia Commonwealth University. She completed her residency in Pediatrics at Virginia Commonwealth University. Dr. Kraft’s work in early childhood and population health seeks to translate the goals of health equity into medical practice.
Read an Excerpt
CHAPTER 1
Introduction: Safe and Appropriate Care of Children With Chronic Health Needs
Many children have chronic health conditions or special health care needs. In fact, federal data from the large National Survey of Children with Special Health Care Needs 2009-2010 and the large National Survey of Children's Health in 2011–2012 show that 15% to 20% of all children in this country have special health care needs. The federal Maternal and Child Health Bureau defines children with special health care needs as "... those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or [an] amount beyond that required by children generally." Findings from these studies demonstrate that special health care needs in children are common and that the spectrum of needs is broad.
Modern medicine has helped many children survive illnesses and conditions that would have been lethal in the past. Consequently, these children and their families are faced with daily challenges, related to maintaining the child's health, well-being, and quality of life, that their families and other teachers and caregivers must address. Children with special health care needs can participate in activities that would have been impossible in the past. The goal is safe and maximal inclusion of children with special health care needs in all appropriate activities.
Children are often in out-of-home settings for a large portion of their days as they attend school, child care programs, and recreational programs. Many school-aged children have access to a school nurse to help manage their special health care needs, even if that nurse is available only intermittently. Children, infants, and toddlers in preschool and before- and after-school care seldom have the benefit of an on-site health care professional such as the school nurse. For the youngest children (infants and toddlers), this lack of access to professional health oversight is concerning. Younger children have illnesses more frequently and are less able to verbalize their needs. School providers face different challenges because their mandate to provide education under federal funding requirements results in their having to try to adhere to different sets of guidelines.
The needs of children with chronic health conditions and special health care needs vary with age, abilities, and increasing independence. Regardless, the need for resources and strategies to help teachers and caregivers face the challenges of caring for children with chronic health conditions and special health care needs is undeniable.
It is vital to bridge the communication gap between teachers and caregivers and health care professionals so they can work together to mobilize resources and strategies to benefit children and families in their care. This book may be most helpful to those who work in schools and early education and care programs such as teachers, administrators, school nurses, and caregivers. We also hope that health professionals will use this book to facilitate communication about a child's chronic health condition or special health care needs.
Health professionals receive many requests to complete medical forms for children. Sometimes, they have difficulty providing practical information about the child's health needs that teachers and caregivers need to know. This difficulty creates frustration as teachers and caregivers attempt to obtain relevant information from busy health professionals. Often, parents/guardians act as intermediaries between health professionals and educators who care for their children, which can be challenging. Confusion around privacy laws and rules often makes cross-professional communication about a child with special health care needs difficult.
A primary aim of this book is to provide a quick reference that addresses these barriers and provides potential solutions. Our guiding question is "What are the most important things that this teacher or caregiver needs to know for the safe and appropriate care of this child?"
Overview of the Book
* Background: Chapter 2 gives a brief background of the services and systems that support care of children with chronic health conditions and special health care needs.
* The treatment team: Chapter 3 outlines who the team members may be and what roles they may play. The medical home will also be discussed. Doctors, including specialists, as well as therapists, families, teachers, caregivers, and school nurses, may all be members of the team that supports the child, but the roles team members play need to be coordinated and clearly understood. This chapter discusses the concept and services provided by the child's medical home.
* Care Plans: Chapter 4 reviews different types of Care Plans and what they include. The Care Plan is the blueprint for caring for children with chronic health conditions and special health care needs. Sample Care Plans are available in Chapter 12.
* Implementing the Care Plan: Chapters 5, 6, and 8 discuss methods to implement a Care Plan, especially when it includes administering medication or preparing for an emergency. Many children, such as those with life-threatening allergies, function normally day to day, but they need special planning for emergencies.
* New conditions or signs of concern: Chapter 7 clarifies what signs are worrisome and how to address those concerns with families. This book is primarily designed to assist teachers and caregivers in caring for a child who already has a diagnosis, but the reality is that many children will develop a health problem while they are in out-of-home care.
* The second half of the book consists of condition-specific Quick Reference Sheets. Remember that each child is an individual, not a disease or a disorder. Most diseases and disorders have wide ranges of severity. One child with spina bifida may walk and another might require a wheelchair. The Quick Reference Sheets are designed to point out what might be a problem for a child with that condition. The child's individual Care Plan will outline what is needed for that specific child.
A Quick Reference Sheet can only briefly summarize the most important information pertaining to many health conditions. A wealth of material is in print, on video, and on the Internet. Not all this information is accurate. The Web site for the American Academy of Pediatrics, www.aap.org, is an excellent source for reliable information. The resources at the end of each Quick Reference Sheet and in Additional Resources (page 265) will be a guide to further trustworthy sources of information.
Teachers and caregivers play a very important role in the lives of children with chronic health conditions and special health care needs. Including and caring for these children in the context of daily classroom life can provide an opportunity to teach all children about respect, helping others, and including those who at first appear "different" and an opportunity to look past those differences to find the similarities and needs that all children share. Children with chronic health conditions can sometimes feel that they are somehow responsible for their conditions; these children need reassurance that this is not true. They need support in dealing with their challenges and reminders of their abilities and strengths. It can be inspiring for all to see how a child with a chronic health condition or special needs adapts to face this daily challenge, and it can be fulfilling for a child's classmates to feel that they contributed to that child's ability to achieve and succeed. Parents/guardians also benefit from watching their child gain independence and learn new skills. In addition, many parents/guardians benefit from the support that their child's teachers and caregivers provide.
Caring for children with chronic health conditions and special health care needs can be challenging, but the rewards can be substantial for the children, their families, their health professionals, and their teachers and caregivers.
CHAPTER 2Background
Families, Health Professionals, and Child Care and School Providers: A Three-Way Communication
Parents/guardians of children with chronic health conditions and special health care needs share the same joys, challenges, and concerns that other parents/guardians have with their children. Once their children enter the health care system, these parents/guardians must start communicating with health professionals. Their children often receive care from more than one kind of doctor or other health professional. The doctors include primary care specialists and pediatric subspecialists. The other health professionals involved in their children's care may include nurse clinicians, occupational therapists, physical therapists, speech-language therapists, counselors, and behavioral health therapists. Teachers and caregivers for these young children may have questions about the recommendations provided by these health professionals. Topics that may need to be addressed by direct communication between teachers and caregivers and health professionals may include daily routines, use of the child's medication, medical equipment, behavior management, and how to address unexpected occurrences and emergencies.
Many pediatric subspecialists as well as primary care practices now work as a family-centered medical home. In this approach, doctors, clinicians, nurses, and office staff work as a pediatric team to support patients and families. The implementation of team-based care has created the role of the care manager as a point of contact for families and child care and school providers.
To be effectively involved in a child's care, teachers and caregivers and school personnel need to communicate with the child's parents/guardians as well as with the health professionals who are recommending care of the child. This quick reference guide will discuss the use of a Care Plan, a written document that facilitates communication among all those involved in caring for a child. Three-way communication that involves the family, the child's other teachers and caregivers and school personnel, and the child's health professionals enables collaboration among all treatment team members, that is, their asking and answering questions that facilitate the best experience for a child.
For example, the parents/guardians of a child with a seizure disorder enroll the child at a child care center.
The primary care provider assesses and meets the child's needs for routine, recommended pediatric preventive care and advises the family about additional specialists who might be included in the child's pediatric team.
The pediatric neurologist evaluates the child's need for specialized care and communicates to the parents/ guardians the type and dosage of medication and the schedule for follow-up neurologic assessments necessary to keep this child healthy.
If the early education professionals received training on how to administer medication safely, the parents/ guardians may provide information to the teachers and caregivers about how to have their child accept the needed medication most readily. If the health care professionals indicated that mixing the medication with food is acceptable, as well as which foods are OK to use, the parents/ guardians may share which of the acceptable foods work best for mixing, and they may offer tips for ensuring that the child will take all this medication.
Even though the neurologist's phone information is available for emergencies, it is often the parents/guardians who will advise teachers and caregivers as to prevention (eg, knowing and avoiding triggers), recognition, and management of a child's seizures.
The care manager on the child's pediatric team is available to answer questions regarding the child's care. A signed release from the family will enable specified staff members who are authorized by the parents/guardians to communicate directly with the care manager.
Three-way communication among parents/guardians, health professionals, and others who are responsible for children during the day facilitates optimal care for a child with a chronic health condition or special health care needs. Effective communicators should recognize, value, and make use of the opportunity for collaboration among the members of the child's team.
Individuals with Disabilities Education Act (IDEA)
The Individuals with Disabilities Education Act (IDEA) requires states and localities to provide education and related services (eg, physical or speech-language therapy) to infants, toddlers, children, and youths (adolescents and young adults up to 21 years of age) with disabilities. The history of IDEA reflects our evolving attitude as a society toward children with disabilities.
Before the 1970s, many children with conditions such as trisomy 21 syndrome (Down syndrome) and autism spectrum disorder did not live in their own homes. They were placed in residential care. Over time, parents/guardians and professionals recognized the benefits to these children and their families of living at home, in their communities. As these children entered the school systems within their localities, laws were developed to help ensure that their individual needs were recognized and met. Congress enacted the Education for All Handicapped Children Act (Public Law 94-142) in 1975.
Public Law 94-142 had 4 purposes.
(1) To ensure that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs
(2) To ensure that the rights of children with disabilities and their parents/guardians are protected
(3) To assist states and localities to provide for the education of all children with disabilities
(4) To assess and ensure the effectiveness of efforts to educate all children with disabilities
Public Law 94-142 was a response to congressional concern for 2 groups of children: the more than 1 million children with disabilities who were excluded entirely from the education system and those who had only limited access to the education system and were therefore denied an appropriate education. This latter group comprised more than half of all children with disabilities who were living in the United States at that time. These issues of improved access became guiding principles for further advances in educating children with disabilities over the last quarter of the 20th century.
Over the next few decades, this law was amended to provide services to children and youths with health impairments. Hearing, vision, orthopedic, and developmental disabilities can clearly affect a child's educational ability, and IDEA seeks to develop supports that accommodate all children as individuals. Today, IDEA provides services to infants and toddlers through early intervention (Part C of IDEA). Children and youths 3 years (ie, 36 months) and older are served through special education and related services (Part B of IDEA).
Early Intervention Services (Part C of IDEA)
Early intervention (Part C of IDEA) is the process of providing services, education, and support to young children (birth through 36 months) who are found to have any of the following chronic health conditions and special health care needs:
* A diagnosed physical or mental condition with a high probability of resulting in a developmental delay
* An existing delay per a state's criteria for eligibility
* A risk of developing a delay or special need that may affect development or impede education (This at-risk category depends on the state's eligibility determination process and whether it includes children who are at risk. States are given the discretion of including children at risk in their state plans.)
Part C of IDEA was established in recognition of "an urgent and substantial need" to
* Enhance the development of infants and toddlers with disabilities.
* Reduce educational costs by minimizing the need for special education through early intervention.
* Minimize the likelihood of institutionalization and maximize independent living.
* Enhance the capacity of families to meet their children's needs.
The purpose of early intervention is to provide the therapy and support that will allow a child to "catch up," so that, by preschool age, the child can function at the level of age-appropriate peers. For children with developmental delay who will require therapy throughout their lives, early intervention can significantly reduce the adverse effects of their disabilities or delays. Services are designed to identify and meet a child's needs in the following 5 developmental areas: physical development, cognitive development, communication, social and emotional development, and adaptive development.
Early intervention programs and services may occur in a variety of settings, always with an emphasis on natural environments. Natural environments are "settings that are natural or normal for the child's age peers who have no disabilities" (34 CFR §303.18). Part C of IDEA requires that "to the maximum extent appropriate to the needs of the child, early intervention services must be provided in natural environments, including the home and community settings in which children without disabilities participate" (34 CFR §303.12[b]). For this reason, it is important for teachers and caregivers to understand basic principles about inclusion and children with chronic health conditions and special health care needs. The provision of early intervention services taking place in natural environments is not just a suggestion, it is a legal requirement.
The exception to the natural environments rule reads, "The provision of early intervention services for any infant or toddler with a disability occurs in a setting other than a natural environment that is most appropriate, as determined by the parent and the Individualized Family Service Plan (IFSP) team, only when early intervention cannot be achieved satisfactorily for the infant or toddler in a natural environment" (34 CFR §303.126).
Early intervention services are proven to be most effective when started as soon as the child's delay or disability is identified. A therapist or an educator may be assigned to a child in the group setting. There can be many advantages to this assignment; one is that teachers and caregivers may learn tips from the therapist to use with other children and situations for which they are responsible. For example, a teacher or caregiver may work with a speech-language therapist to target goals for a child with speech delay and may even learn some exercises that will promote improved speech skills for all the children in the group!
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Excerpted from "Managing Chronic Health Needs in Child Care and Schools"
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