3.5.0.1: Care Plan for Children with Special Health Care Needs

Reader’s Note: 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” (1).

Any child who meets these criteria should have a Routine and Emergent Care Plan completed by their primary care provider in their medical home. In addition to the information specified in Standard 9.4.2.4 for the Health Report, there should be:

1. A list of the child’s diagnosis/diagnoses;
2. Contact information for the primary care provider and any relevant sub-specialists (i.e., endocrinologists, oncologists, etc.);
3. Medications to be administered on a scheduled basis;
4. Medications to be administered on an emergent basis with clearly stated parameters, signs, and symptoms that warrant giving the medication written in lay language;
5. Procedures to be performed;
6. Allergies;
7. Dietary modifications required for the health of the child;
8. Activity modifications;
9. Environmental modifications;
10. Stimulus that initiates or precipitates a reaction or series of reactions (triggers) to avoid;
11. Symptoms for caregiver/teachers to observe;
12. Behavioral modifications;
13. Emergency response plans – both if the child has a medical emergency and special factors to consider in programmatic emergency, like a fire;
14. Suggested special skills training and education for staff.

A template for a Care Plan for children with special health care needs is provided in Appendix O.

The Care Plan should be updated after every hospitalization or significant change in health status of the child. The Care Plan is completed by the primary care provider in the medical home with input from parents/guardians, and it is implemented in the child care setting. The child care health consultant should be involved to assure adequate information, training, and monitoring is available for child care staff.

RATIONALE

Children with special health care needs could have a variety of different problems ranging from asthma, diabetes, cerebral palsy, bleeding disorders, metabolic problems, cystic fibrosis, sickle cell disease, seizure disorder, sensory disorders, autism, severe allergy, immune deficiencies, or many other conditions (2). Some of these conditions require daily treatments and some only require observation for signs of impending illness and ability to respond in a timely manner (3).

COMMENTS

A collaborative approach in which the primary care provider and the parent/guardian complete the Care Plan and the parent/guardian works with the child care staff to implement the plan is helpful. Although it is usually the primary care provider in the medical home completing the Care Plan, sometimes management is shared by specialists, nurse practitioners, and case managers, especially with conditions such as diabetes or sickle cell disease.

Child care health consultants are very helpful in assisting in implementing Care Plans and in providing or finding training resources. The child care health consultant may help in creating the care plan, through developing a draft and/or facilitate the primary care provider to provide specific directives to follow within the child care environment. The child care health consultant should write out directives into a “user friendly” language document for caregivers/teachers and/or staff to implement with ease.

Communication between parents/guardians, the child care program and the primary care provider (medical home) requires the free exchange of protected medical information (4). Confidentiality should be maintained at each step in compliance with any laws or regulations that are pertinent to all parties such as the Family Educational Rights and Privacy Act (commonly known as FERPA) and/or the Health Insurance Portability and Accountability Act (commonly known as HIPAA) (4).

For additional information on care plans and approaches for the most prevalent chronic diseases in child care see the following resources:

Asthma: How Asthma-Friendly Is Your Child-Care Setting? at http://www.nhlbi.nih.gov/health/public/lung/asthma/chc_chk.htm;

Autism: Learn the Signs/ACT Early at http://www.cdc.gov/ncbddd/autism/actearly/;

Food Allergies: Guides for School, Childcare, and Camp at http://www.foodallergy.org/section/guidelines1/;

Diabetes: “Diabetes Care in the School and Day Care Setting” at http://care.diabetesjournals.org/content/29/suppl_1/s49.full;

Seizures: Seizure Disorders in the ECE Setting at http://www.ucsfchildcarehealth.org/pdfs/healthandsafety/
SeizuresEN032707_adr.pdf.

TYPE OF FACILITY

Center, Early Head Start, Head Start, Large Family Child Care Home, Small Family Child Care Home

RELATED STANDARDS

3.6.3.1 Medication Administration
4.2.0.10 Care for Children with Food Allergies
9.4.2.4 Contents of Child’s Primary Care Provider’s Assessment
Appendix P: Situations that Require Medical Attention Right Away

REFERENCES

1. McPherson, M., P. Arango, H. Fox, C. Lauver, M. McManus, P. Newacheck, J. Perrin, J. Shonkoff, B. Strickland. 1998. A new definition of children with special health care needs. Pediatrics 102:137-40.
2. U.S. Department of Health and Human Services, Health Resources and Services Administration. The national survey of children with special health care needs: Chartbook 2005-2006. http://mchb.hrsa.gov/cshcn05/.
3. American Association of Nurse Anesthetists. 2003. Creating a latex-safe school for latex-sensitive children. http://www
   .anesthesiapatientsafety.com/patients/latex/school.asp.
4. Donoghue, E. A., C. A. Kraft, eds. 2010. Managing chronic health needs in child care and schools: A quick reference guide. Elk Grove Village, IL: American Academy of Pediatrics.