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10.5: Children with Special Health Care Needs

  • Page ID
    201616
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    Learning Objectives

    By the end of this section, you should be able to:

    • Relate family-centered care and individualized planning and care.
    • Explain what individualized health planning is and who it is appropriate for.
    • Describe some chronic health conditions that children in early care and education programs may have.
    • Discuss what inclusion is and why it is beneficial.

    Introduction

    Children with special health care needs are defined 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 amount beyond that required by children generally” (McPherson, 1998).

    Any child who meets these criteria in an early care and education setting should have an up-to-date care plan, completed by their primary health care provider with input from parents/guardians, included in their on-site health record and readily accessible to those caring for the child.444

    Individualized Planning for Health

    What does it take to care for children with chronic conditions in an early care and education program? There's no single recipe for all situations. What it takes—more than any policy, list of services, or staffing plan—is a commitment to communication, collaboration, creative problem-solving, and a determination to make it work. The essential principles that should guide the care of children with chronic conditions in early childhood education are: care should be family-centered, individualized, safe, and legal.

    Family-Centered Care

    Over the last 15 years, children's health care and the relationship between families and health professionals have changed significantly. The role of parents/caregivers has shifted from being patients to partners with the health care provider; and the "good patient" has changed from unquestioningly following advice to being a good partner who actively participates in decisions and advocates for services for their child.

    "Family-centered care" involves providing the family health care and other services based on the family's needs, priorities, and convenience rather than those of the service providers or the child alone. Family-centered services are evidence of a program’s commitment to family partnerships and supporting child and family development.

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    10.5.1 – Family-centered care relies on respect and collaboration.445

    Services are family-centered when:

    • The family is recognized as the child's most constant and important caregiver.
    • The family and professionals collaborate as partners.
    • Communication is open and honest, in both directions, between the family and professionals.
    • Individual strengths and differences are respected among families.
    • Services are flexible and responsive to the family's needs.
    • Family-to-family support is encouraged.
    • Children with chronic conditions and their families are treated like other children and families, and not defined by their condition.

    Individualizing Care

    Individualizing means recognizing the characteristics that make each child unique and planning a program that responds to these differences. Individualizing allows families and staff to respond to each child's built-in time clock for development, as well as culture, family, home language, life experiences, strengths, needs, skills, and abilities.

    Early care and education programs can best meet the needs of children with chronic conditions by following a systematic process of Individualized Health Planning. For children who are eligible for an Individualized Education Program (IEP) or Individualized Family Service Plan (IFSP), the IEP or IFSP may or may not include planning for the child's health care needs. In addition, many children with special health needs who are not eligible for an IEP or IFSP would, in fact, benefit from individualized health planning.

    Individualized health planning for children with chronic conditions involves close communication and collaboration among families, the early care and education program staff, and health care and service providers. It is a process of collecting all the necessary information from screening and evaluations, developing plans for the child's routine and emergency care, conducting ongoing assessments, and revising the plans as needed. The plan should be documented in writing to serve as a clear guide for staff, families, and healthcare providers on meeting the child's health needs.

    Who Should Have an Individualized Health Plan?

    Children who would benefit from an Individualized Health Plan include any child who:

    • Requires adaptations in daily activities because of a medical condition; daily activities to be considered include feeding, playing, sleeping, toileting
    • Needs medication regularly
    • Requires a specialized emergency plan

    The decision to develop an Individualized Health Plan for a child should be made collaboratively by the family, health specialists, and classroom teacher.

    What are the Benefits of an Individualized Health Plan?

    • Health Promotion and Prevention of Complications: Children with chronic conditions remain healthiest when all possible measures are taken to promote their general health and manage the chronic condition closely.
    • Communication and Collaboration: Optimal health care for children with chronic conditions requires close communication and coordination among families, Head Start, and health care providers.
    • Training and Skills: An Individualized Health Plan identifies the specific procedures needed to care for a child with chronic conditions.
    • Confidence: With an Individualized Health Plan, families, and program staff can feel confident that they are doing everything possible to keep the child healthy on a routine and daily basis. Also, if health problems or emergencies occur, they can feel confident that they are prepared to manage them in the best way possible. Children with special medical needs feel more secure and able to learn when their caregivers know what to do.
    six adults around tables at meeting
    Figure 10.5.2 – Families, health care and service providers, and early care and education programs

    can work together to make sure children with special health needs get the care they need.446

    What should be Included in an Individualized Health Plan?

    Caring for children with chronic conditions is a serious responsibility. Staff are commonly concerned about meeting the child's daily care needs: "How can I be sure to give him his medicine at the right time? Do we have enough staff to do his tracheostomy care while also supervising the other children? Will I have all his asthma supplies on the field trip?" Staff are also commonly concerned about emergencies: "What if I give her the wrong amount of medicine? What if she stops breathing? What if I can't reach her father on the phone?" The Individualized Health Plan should include the information necessary to respond to the most likely "what-ifs."

    Many people are afraid to care for children with chronic conditions. It can raise anxiety to discuss and plan for the "what-if" situations. It is important to remember that anticipating and planning for a situation doesn't make it happen; it just allows you to be prepared if it does.

    At a minimum, an Individualized Health Plan should be a guide to:

    • What accommodations in daily programming are needed, including meals and snacks, playing, sleeping, and toileting
    • When and how to give medication, and who may give it
    • When and how to perform any required medical procedures, and who may perform them
    • What procedures to follow in the event of a medical emergency

    The Individualized Health Plan should be developed with the participation of families, medical professionals, classroom staff, and any other program that may be involved in providing care. All parties should sign the form as an indication of agreement with and commitment to plan.447

    Who are Children with Special Needs?

    According to the Data Resource Center for Child and Adolescent Health and shown in Figure 10.5.3, in 2017 over 20% of children 0-5 years, and over 40% of children 6-11 years, have one or more of the following current or lifelong health conditions:

    • allergies (food, drug, insect or other)
    • arthritis
    • asthma
    • blood disorders (such as sickle cell disease, thalassemia, or hemophilia)
    • brain injury/concussion/head injury
    • cerebral palsy
    • cystic fibrosis
    • diabetes
    • Down Syndrome
    • epilepsy or seizure disorder
    • genetic or inherited condition
    • heart condition
    • frequent or severe headaches including migraine (3-17 years)
    • Tourette Syndrome (3-17 years)
    • anxiety problems (3-17 years)
    • depression (3-17 years)
    • behavioral and conduct problems (3-17 years)
    • substance use disorder (6-17 years)
    • developmental delay (3-17 years)
    • intellectual disability (3-17 years)
    • speech or other language disorders (3-17 years)
    • learning disability (also known as mental retardation) (3-17 years)
    • other mental health conditions (3-17 years)
    • Autism or Autism Spectrum Disorder (ASD) (3-17 years)
    • Attention Deficit Disorder or Attention-Deficit/Hyperactivity Disorder (ADD or ADHD) (3-17 years)
    • hearing problems
    • vision problems.448
    health issues in children 0-5, 6-11, and 12-17 years
    Figure 10.5.3 – Prevalence of current or lifelong health conditions in children 0-17 years in U.S.449

    Children with Special Needs

    Children in early care and education programs may have special needs that are not directly related to their health. This may include:

    • Intellectual disability
    • Hard of hearing
    • Deaf
    • Speech or language impairment
    • Visual impairment
    • Emotional disturbance
    • Orthopedic impairment
    • Other health impairment
    • Specific learning disability
    • Deaf-blindness
    • Multiple disability
    • Autism Spectrum Disorders
    • Traumatic brain injury

    These children and their families need a partnership with early care and education staff and other service providers as early as possible because it creates a solid foundation to support optimal development and can reduce the prevalence of ongoing and future challenges.495

    The Individuals with Disabilities Education Act (IDEA) is the federal law that makes available free appropriate public education to eligible children with disabilities throughout the nation and ensures special education and related services to those children.

    The IDEA governs how states and public agencies provide early intervention, special education, and related services to more than 6.5 million eligible infants, toddlers, children, and youth with disabilities.496

    For children birth to 3 years, Part C of IDEA Provides early intervention services to children from birth to three with special needs. And Individualized Family Service Plan (IFSP) is a written document outlining:

    • The early intervention services a child and family will receive
    • The child's needs; the family's strengths and choices; and the Early Intervention team's recommendations

    Once children turn 3 years old, Part B of IDEA (Section 619), provides special education services through the public school system. An Individualized Education Program (IEP) is a written plan that describes:

    • The child's educational goals
    • Services and supports in a school setting497
    C:\Users\paris_j\Pictures\OER Images\child with special needs source i-t curr frame.JPG
    Figure 10.17 – This child with cerebral palsy has a special chair that allows her to participate in her inclusive early care and education program 498

    Inclusion

    In IDEA, the word appropriate refers to providing that educational experience in the least restrictive environment (LRE). LRE requires a continuum of placement options to be available to best meet the diverse needs of children with disabilities and presumes that the first placement option considered for each child with a disability is the regular classroom the child would attend if he or she did not have a disability.499 The full and active participation of children with disabilities or other special needs in community activities, services, and programs designed for children without disabilities, including child care, is referred to as inclusion. In an inclusive program, if support, accommodations, or modifications are needed to ensure the child’s full, active participation, they are provided appropriately. The participation results in an authentic sense of belonging for the child and family.

    Professionals may be reassured to know that:

    • Childcare providers can successfully include children with disabilities or other special needs in the program while promoting belonging for all children.
    • Major modifications to their program or facility probably will not be needed in order to include children with disabilities or other special needs.
    • Assistance and support for more significant changes in their program or facility may be available.
    • An inclusive childcare program is rewarding for all the children, families, and staff in childcare programs.500

    Individualizing Care and Education

    When serving an individual child, the provider should focus on the child’s needs, not the disability or its label. Working with the family and the service providers, teachers can provide individualized care and education for the child’s unique needs and strengths, just as they should be doing for each and every child in their classroom.

    As each child is unique, so is each childcare program. There is no magic formula for making inclusion work beyond the creativity, energy, and interest that most childcare providers already bring to their work. Their uniqueness notwithstanding, every program is able to successfully include children with disabilities. And each makes it work child by child, day by day.

    Some children need small changes to the curriculum or minor support in order to get the most out of certain activities. These sorts of things may consist of fairly simple accommodations, such as providing a special place or quiet activity for a child who is unable to participate in large-group activities or making available a special snack for a child who needs to eat more frequently than the typical meal or snack schedule. Other children may require more specific adaptations that might not be readily apparent. A variety of community resources can be helpful in determining what those might be. The family, for example, is always the first and most important guide for what a child might need; after that, an area specialist or a local workshop might be. Beyond the immediate community, a world of literature in books, periodicals, and Web sites devoted to disabilities and inclusion can inform a childcare provider about appropriate adaptations for a child with a particular condition or need.

    C:\Users\paris_j\Pictures\OER Images\child with special needs from inlusion works.JPG
    Figure 10.5.4 – All programs can successfully include children with disabilities.501

    Programs that begin with a high-quality, developmentally appropriate foundation; a positive attitude on the part of the care provider; appropriate adult–child ratios; supportive administrators; and adequate training for the provider will be in a good position to creatively solve problems for a child with disabilities or other special needs, exactly as it does for children who are typically developing. If a child already has an established diagnosis, trained intervention personnel may be available to assist in this process.

    One of the biggest roles of a care provider is to facilitate a sense of belonging and inclusion. Several helpful strategies are as follows:

    • Start with the assumption that all children are competent.
    • Adapt the environment so that it is developmentally appropriate, challenging, and fits the needs and interests of each child.
    • While there may be a need to support a child’s mastery of a specific skill, keep the whole child in mind, particularly the child’s social-emotional experience.502

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    Pause to Reflect

    How might you explain what inclusion is and why it is good for children and families to the following:

    • Someone who thinks they want to be a teacher but doesn’t believe they can handle teaching in an inclusive classroom.
    • The family of a child with special needs.
    • The family of a child who is having a hard time with changes in the classroom after a child that has a special need joined the class.

    Did your explanations differ? Why or why not?

    Summary

    All children and their families deserve access to and full inclusion in high-quality early care and education programs. This includes children with special health care and other special needs. Working with families and the health care and service providers, programs can meet each child’s individualized needs. This takes knowledge, planning, and partnership. Inclusive programs are beneficial to everyone, the children with special needs and their families, the children that do not have special needs, and the program staff.

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    Resources for Further Exploration

    References

    This page was from 10: Children with Special Health Care Needs by Paris. in Paris, J. (2021). Health, safety and nutrition. LibreTexts.

    For references according to subscript, please see pages 246-277 of the original Health, Safety and Nutrition book (Paris, 2021) on Google Drive.

    McPherson, M., Arango, P., Fox, H., Lauver, C., McManus, M., Newacheck, P. W., Perrin, J. M., Shonkoff, J. P., & Strickland, B. (1998). A new definition of children with special health care needs. Pediatrics, 102(1 Pt 1), 137–140. https://doi.org/10.1542/peds.102.1.137


    This page titled 10.5: Children with Special Health Care Needs is shared under a CC BY 4.0 license and was authored, remixed, and/or curated by Heather Carter and Amber Tankersley.