Helping families raise children with special health care needs at home.

Brief Summary

GUIDELINE TITLE

BIBLIOGRAPHIC SOURCE(S)

Johnson CP, Kastner TA. Helping families raise children with special health care needs at home. Pediatrics 2005 Feb;115(2):507-11. [16 references] PubMed

GUIDELINE STATUS

This is the current release of the guideline.

American Academy of Pediatrics (AAP) Policies are reviewed every 3 years by the authoring body, at which time a recommendation is made that the policy be retired, revised, or reaffirmed without change. Until the Board of Directors approves a revision or reaffirmation, or retires a statement, the current policy remains in effect.

BRIEF SUMMARY CONTENT

RECOMMENDATIONS
EVIDENCE SUPPORTING THE RECOMMENDATIONS
IDENTIFYING INFORMATION AND AVAILABILITY
DISCLAIMER

Go to the Complete Summary

RECOMMENDATIONS

MAJOR RECOMMENDATIONS

Summary

To support and achieve Healthy People 2010 objective 6-7 (reduce the number of people with disabilities in congregate care facilities, consistent with permanency-planning principles, to 0 by 2010), pediatricians should work closely with biological families to identify local resources that can assist them in caring for their child with special health care needs to prevent out-of-home placement. If, however, the family considers out-of-home placement, the pediatrician should be knowledgeable of and be able to recommend other alternatives and supports and convey this information to the family to reinforce the principles of permanency planning and achieve and sustain an optimal nurturing environment for the child.

Considerations for Pediatricians

The goal of the medical home is consistent with Healthy People 2010 objectives and includes the provision of community-based, culturally effective, coordinated, and comprehensive care for children with special health care needs and their families.

The ongoing assessment of children with special health care needs ideally is family-centered, focusing on the child's quality-of-life goals as envisioned by the family. Ultimately, assessments will focus on the child as he or she matures into adolescence and adulthood and prepares for transition to adult living settings.

Throughout the ongoing care of the child, the pediatrician is encouraged to support the tenets of permanency planning. Permanency planning is the philosophy and practice of securing for children with special health care needs permanent family placement and ongoing relationships with caring adults. Permanency planning emphasizes the use of supports necessary to enable a child to be raised in a home, focuses on promoting a sense of belonging, and is evaluated according to the ability of the setting to promote ongoing secure relationships.

The pediatrician is encouraged to address the child's need for and the availability of an appropriate education, including later transition services. If the child is not being served appropriately by the local school system, physician advocacy may be necessary to both obtain the needed services and decrease the burden on parents in their own efforts to secure them.

The pediatrician is encouraged to address the parents' need for and ability to access and obtain family-support services, including faith-based services. If parents are in need of family-support services but have not been successful in accessing them, the pediatrician may advocate on behalf of the family through referral to social service agencies, which are usually housed in state agencies (i.e., state departments of health, human services, mental retardation and/or disability, or education).

Pediatricians are encouraged to advocate for the most reasonable and appropriate supports and services. The measure of what is reasonable and appropriate should always be in the best interest of the child. If, after careful consideration, the family determines that congregate care is the only available option, it should be considered a temporary placement followed by reunification or an in-home alternative-care option whenever possible. Pediatricians also are encouraged to help adolescents prepare for transition to adulthood and advocate for self-determination as some adults may choose to pool resources and share attendant care in group home settings.

Pediatricians, especially those in states that have not yet accessed waiver services through the Tax Equity and Fiscal Responsibility Act (Katie Beckett Act), can be effective advocates for increased funding for family supports by working collaboratively with legislators to access and match federal resources. The public policy link on the Family Voices Web site (http://www.familyvoices.org/policy.htm) is helpful in providing the clinician with information about important proposals to Congress that relate to permanency planning and family supports.
Pediatricians can be helpful in identifying possible alternative families. Good prospects are families already caring for a child with special health care needs, foster parents of typically developing children, and parents who work in the health care fields. Pediatricians can also be helpful in educating and training care providers.

CLINICAL ALGORITHM(S)

None provided

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EVIDENCE SUPPORTING THE RECOMMENDATIONS

TYPE OF EVIDENCE SUPPORTING THE RECOMMENDATIONS

The type of supporting evidence is not specifically stated for each recommendation.

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IDENTIFYING INFORMATION AND AVAILABILITY

BIBLIOGRAPHIC SOURCE(S)

Johnson CP, Kastner TA. Helping families raise children with special health care needs at home. Pediatrics 2005 Feb;115(2):507-11. [16 references] PubMed

ADAPTATION

Not applicable: The guideline was not adapted from another source.

DATE RELEASED

2005 Feb

GUIDELINE DEVELOPER(S)

American Academy of Pediatrics - Medical Specialty Society

SOURCE(S) OF FUNDING

American Academy of Pediatrics

GUIDELINE COMMITTEE

Committee on Children With Disabilities

COMPOSITION OF GROUP THAT AUTHORED THE GUIDELINE

Primary Authors: Chris Plauché Johnson; Theodore A. Kastner

Committee on Children With Disabilities, 2004-2005: Paul H. Lipkin, MD, Chairperson; Joshua Alexander, MD; J. Daniel Cartwright, MD; Larry W. Desch, MD; John C. Duby, MD; Diane R. Edwards, MD; Ellen Roy Elias, MD; Chris Plauche´ Johnson, MD, MEd; Lawrence C. Kaplan, MD; Eric B. Levey, MD; Nancy A. Murphy, MD; Scott M. Myers, MD; Ann Henderson Tilton, MD; Adrian D. Sandler, MD, Immediate Past Chairperson; W. Carl Cooley, MD, Past Committee Member; Theodore A. Kastner, MD, MS, Past Committee Member; Marian E. Kummer, MD, Past Committee Member

Liaisons: Beverly Crider, Family Voices; Merle McPherson, MD, MPH, Maternal and Child Health Bureau; Donald Lollar, EdD, Centers for Disease Control and Prevention; Marshalyn Yeargin-Allsopp, MD, Centers for Disease Control and Prevention

Consultants: Colleen Horton, MPAff; Nancy Rosenau, PhD; Lesa R. Walker, MD, MPH

Staff: Stephanie Mucha, MPH

FINANCIAL DISCLOSURES/CONFLICTS OF INTEREST

Not stated

GUIDELINE STATUS

This is the current release of the guideline.

GUIDELINE AVAILABILITY

Electronic copies: Available from the American Academy of Pediatrics (AAP) Policy Web site.

Print copies: Available from American Academy of Pediatrics, 141 Northwest Point Blvd., P.O. Box 927, Elk Grove Village, IL 60009-0927.

AVAILABILITY OF COMPANION DOCUMENTS

None available

PATIENT RESOURCES

None available

NGC STATUS

This NGC summary was completed by ECRI on February 23, 2005. The information was verified by the guideline developer on May 5, 2005.

COPYRIGHT STATEMENT

This NGC summary is based on the original guideline, which is subject to the guideline developer's copyright restrictions. Please contact the Permissions Editor, American Academy of Pediatrics (AAP), 141 Northwest Point Blvd, Elk Grove Village, IL 60007.

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DISCLAIMER

NGC DISCLAIMER

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Brief Summary

GUIDELINE TITLE

BIBLIOGRAPHIC SOURCE(S)

GUIDELINE STATUS

BRIEF SUMMARY CONTENT

RECOMMENDATIONS

MAJOR RECOMMENDATIONS

CLINICAL ALGORITHM(S)

EVIDENCE SUPPORTING THE RECOMMENDATIONS

TYPE OF EVIDENCE SUPPORTING THE RECOMMENDATIONS

IDENTIFYING INFORMATION AND AVAILABILITY

BIBLIOGRAPHIC SOURCE(S)

ADAPTATION

DATE RELEASED

GUIDELINE DEVELOPER(S)

SOURCE(S) OF FUNDING

GUIDELINE COMMITTEE

COMPOSITION OF GROUP THAT AUTHORED THE GUIDELINE

FINANCIAL DISCLOSURES/CONFLICTS OF INTEREST

GUIDELINE STATUS

GUIDELINE AVAILABILITY

AVAILABILITY OF COMPANION DOCUMENTS

PATIENT RESOURCES

NGC STATUS

COPYRIGHT STATEMENT

DISCLAIMER

NGC DISCLAIMER

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