HEAD START®

Caring for Children with
Chronic Conditions

Training Guides for the Head Start Learning Community

Table of Contents | Preface | Introduction | Module 1 | Module 2 | Module 3
| Continuing Professional Development | Resources

MODULE 2: Essential Principles for Care

Module 2 | Activity 1 | Activity 2 | Activity 3 | Key to Activity 3 | Activity 4 | Activity 5 | Activity 6 | Activity 7 | Next Steps

Outcomes

After completing this module, participants will be able to:

• assess whether the services they provide to children with chronic conditions are family-centered;
  
  
• develop a system for individualized planning to meet children's special health care needs; and
  
  
• develop policies that ensure safe and legal care for children's health needs, including administration of medication.

Key Concepts

Head Start can best meet the needs of children with chronic conditions by providing services that are:

• Family-Centered
  
  
• Individualized
  
  
• Safe and Legal

Family-centered care is driven by the needs and preferences of the family rather than the convenience of the system or simply the needs of the child.

Individualized health planning involves a partnership among Head Start staff, families, and service providers to plan the child's routine and emergency care.

Since caring for children with chronic conditions is a serious responsibility, careful attention to safety and legal issues is critical.

Background Information

What does it take to care for children with chronic conditions in Head Start? 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 and creative problem-solving, and a determination to make it work. The essential principles that should guide the care of children with chronic conditions in Head Start are: care should be family-centered, individualized, safe and legal.

A. 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 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 consistent with Head Start's approach to family partnerships and supporting child and family development.

Services are family-centered when*...

• Provide family-centered care:
  
  
• 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.

* Adapted from Shelton, Terri, and Jennifer Smith Stepanek. Family Centered Care for Children Needing Specialized Health and Developmental Services. Association for the Care of Children's Health. Bethesda, Maryland, 1994.

B. Individualized Planning for Health

Head Start aims to individualize services for all children and families from comprehensive screening to individual planning and ongoing assessment. 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.**"

Head Start 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. They might be eligible for case management services under Section 504 of the Rehabilitation Act, "Crippled Children's Services," EPSDT, or other programs.

Individualized health planning for children with chronic conditions involves close communication and collaboration among parents, Head Start staff, 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 assessment, and revising the plans as needed. The plan should be documented in writing to serve as a clear guide for Head Start staff, parents, and health care providers on meeting the child's health needs.

The Individualized Health Plan is not specifically required by the Head Start Program Performance Standards. However, the process of developing Individualized Health Plans is an effective tool to facilitate Head Start's goal of individualizing the care of all children, including those with chronic conditions.

• 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 parent, 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. These steps are very effective in preventing complications of chronic conditions. For example, for a child with diabetes, it is better to closely monitor her diet and blood sugar levels than to cope with a medical emergency resulting from too low or too high blood sugar levels.
  
  – Communication and Collaboration:
  
  Optimal health care for children with chronic conditions requires close communication and coordination among families, Head Start, and health care providers. A systematic process of developing and following the Individualized Health Plan helps clarify the roles and responsibilities of all caregivers and facilitates collaboration.
  
  – Training and Skills:
  
  An Individualized Health Plan identifies the specific procedures needed to care for a child with chronic conditions. Head Start management can use the Individualized Health Plan to identify what specific training and supervision must be available for caregivers.
  
  – Confidence:
  
  With an Individualized Health Plan, families and Head Start 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.
  
  – Protection from Liability:
  
  Individualized health planning, staff training, and supervision can improve the care of children with chronic conditions and reduce the chance of medical complications. In the event of complications, the Individualized Health Plan may help provide legal protection for program staff by specifying procedures and clarifying responsibilities.
  
  
• 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 anxieties 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 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 relevant members of the Head Start management team (e.g., health, disabilities, nutrition, and education specialists). All parties should sign the form as an indication of agreement with and commitment to plan. (See sample Individualized Health Plan forms in the activities and handouts in Modules 2 and 3.
  

C. Ensuring That Services Are Safe And Legal

Compliance with legal requirements means not discriminating against children with special medical needs in enrollment, and ensuring that children's care needs are met in a safe and legal manner.

The decisions about the enrollment and care of children with chronic conditions in Head Start should be based on a careful assessment by the program, service providers, and families. It should include a realistic assessment of the child's strengths and needs, and the program's ability to make the accommodations needed to care for the child. Programs, families, and service providers must be committed to making it work, and honest about any limitations in their capacity to provide safe care.

Head Start Program Performance Standards state that programs "...must not deny program admission to any child, nor exclude any enrolled child from program participation for a long-term period, solely on the basis of his or her health care needs or medication requirements unless keeping the child in care poses a significant risk to the health or safety of the child or anyone in contact with the child and the risk cannot be eliminated or reduced to an acceptable level through reasonable modifications in the grantee or delegate agency's policies, practices or procedures, or by providing appropriate auxiliary aids which would enable the child to participate without fundamentally altering the nature of the program." This Standard is consistent with the Americans with Disabilities Act, which protects the rights of individuals with disabilities including chronic conditions.

There must be clear agency-wide policy in compliance with all relevant Head Start, state licensing, and health professional practice regulations. It is crucial that the policy addresses, at minimum:

• administration of medication
  
  
• performing medical procedures
  
  
• handling emergencies
  
  
• record keeping and confidentiality
  
  Good policy development takes advance planning and should be accomplished with the leadership and participation of the Health Services Advisory Committee. The Head Start Program Performance Standards, state child care licensing regulations, and state Medical and Nursing Practice Acts must all be taken into consideration.
  
  All medical information about enrolled children and their families is confidential. Records must be handled and stored in a way that protects confidentiality. Confidential information should be shared only with those persons who "need to know" in order to care for the child, and only with the consent of the family or legal guardian. While disclosure of medical information often helps provide good care, disclosure can also result in negative consequences for families because of fear and stigma associated with certain conditions. Before sharing any medical information, families should be helped to consider the risks and benefits of disclosure. Certain medical conditions have special legal requirements concerning disclosure. Some communicable diseases require reporting exposure, and in some states HIV disease has special confidentiality protections.
  

Questions for Discussion/Reflection

• Think about your own experiences receiving health care services:
  
  – How family-centered has it been?
  
  – Have you ever had contact with a health care provider where your feelings and opinions were ignored? How did that feel? Was it hard to be assertive?
  
  – Why might it be difficult for health care and other service providers to treat patients or clients as equal partners in decision-making?
  
  
• Have you ever been in a situation where a medical emergency occurred that had not been anticipated? How did it feel for everyone involved? How might an emergency plan have helped?