ABSTRACT
Family-centered care is a practice model that has been described in the literature
for the past two decades. The evidence shows that when family-centered care is practiced,
outcomes are enhanced for children with autism and other disabilities and their families
and teams. This article reviews two innovative programs that practiced family-centered
care in assessment and program planning for children with autism spectrum disorders
(ASD). The research indicates that the essential training elements required to transform
speech-language pathologists (SLPs) from understanding family-centered care to being
family-centered practitioners includes a focus on technical and leadership skills
as well as a variety of experiences with families who have children with ASD. Preservice
programs preparing SLPs and other health professionals must incorporate these essential
elements of family-centered care training into their curricula. SLPs who are already
practicing can use these key elements as a guide in seeking professional development
opportunities.
KEYWORDS
Family centered - interdisciplinary - autism spectrum disorders - training
REFERENCES
1 Research Connections in Special Education .Improving family involvement in special
education, 2001. [Office of Special Education website]. Available at: http://ericec.org/osep/recon9/rc9cov.html Accessed on October 15, 2003
2 Kalyanpur M, Harry B. Culture in Special Education: Building Reciprocal Family-Professional
Relationships. Baltimore, MD; Paul H. Brookes 1999: 15-75
3 Maternal Child Health Bureau .About the HRSA Maternal and Child Health Bureau, 2004
[Health Resources and Services Administration website]. Available at: http://mchb.hrsa.gov/about/default.htm Accessed on November 18, 2004
4 McPherson M.
A call to action . In: Bishop KK, Taylor MS, Arango P Partnerships at Work: Lessons Learned from the
Programs and Practices of Families, Professionals and Communities. Washington, DC;
MCHB 1997: 7-9
5 Arango P, Anderson B, Beckett J et al..
Family voices: a grassroots public/private partnership . In: Bishop KK, Taylor MS, Arango P Partnerships at Work: Lessons Learned from the
Programs and Practices of Families, Professionals and Communities. Washington, DC;
MCHB 1997: 35-46
6 Athey J, Kavanagh L, Bagley K. The MCH Training Program: An Evaluation-Executive
Summary. Arlington, VA; National Center for Education in Maternal and Child Health
2001: 2-18
7
McBride S L.
Family-centered practices.
Young Child.
1999;
(May)
62-68
8
Beatson J E, Prelock P A.
The Vermont Rural Autism Project: sharing experiences, shifting attitudes.
Focus on Autism and Other Developmental Disabilities.
2002;
17
48-54
9
Dunst C J, Trivette C M.
Empowerment, effective helpgiving practices and family-centered care.
Pediatr Nurs.
1996;
22
334-337
10
Beatson J E.
Walk a mile in their shoes: implementation of family-centered care among Vermont Rural
Autism Project Graduates.
, Unpublished manuscript
2004;
11 Prelock P A, Vargas C M.
A different kind of challenge . In: Vargas CM, Prelock PA Caring for Children with Neurodevelopmental Disabilities
and Their Families: An Innovative Approach to Interdisciplinary Practice. London;
Lawrence Erlbaum 2004: 1-34
12
Prelock P A, Beatson J E, Bitner B, Broder C, Ducker A.
Interdisciplinary assessment of young children with autism spectrum disorders.
Lang Speech Hear Serv Sch.
2003;
34
194-202
13
Bruce M C, DiVenere N, Bergeron C.
Preparing students to understand and honor families as partners.
Am J Speech Lang Pathol.
1998;
7
85-94
14 Shelton T L, Jeppson E S, Johnson B H. Family-centered Care for Children with Special
Health Care Needs. Bethesda, MD; Association for the Care of Children's Health 1987
15
Giangreco M F, Edelman S W, Nelson C, Young M R, Keifer-O'Donnell R.
Changes in educational team membership for students who are deaf-blind in general
education classes.
J Visual Impair Blind.
1999;
March
166-173
16
Shelton T S, Stepanek J S.
Excerpts from family-centered care for children needing specialized health and developmental
services.
Pediatr Nurs.
1995;
21
362-364
17 Dewees M P, Beatson J E, Douglas P.
Care coordination in challenging contexts: attention deficit, language learning disabilities,
and hearing impairment . In: Vargas CM, Prelock PA Caring for Children with Neurodevelopmental Disabilities
and Their Families: An Innovative Approach to Interdisciplinary Practice. London;
Lawrence Erlbaum 2004: 185-212
18
Ahman E.
Examining assumptions underlying nursing practice with children and families.
Pediatr Nurs.
1998;
23
467-469
19
Shelton T L.
Family-centered care in pediatric practice: when and how?.
J Dev Behav Pediatr.
1999;
20
117-119
20
Arango P.
A parent's perspective on family-centered care.
J Dev Behav Pediatr.
1999;
20
123-124
21 Dunst C J, Trivette C M, Deal A G.
Final thoughts concerning adoption of family-centered intervention practices . In: Dunst CJ, Trivette CM, Deal AG Supporting and Strengthening Families. Cambridge,
MA; Brookline Books 1994: 222-225
22 Dunst C J, Trivette C M.
Aims and principles of family support programs . In: Dunst CJ, Trivette CM, Deal AG Supporting and Strengthening Families. Cambridge,
MA; Brookline Books 1994: 30-48
23
Feldman H M, Ploof D, Cohen W I.
Physician-family partnerships: the adaptive practice model.
J Dev Behav Pediatr.
1999;
20
111-116
24
Cooley W C, McAllister J W.
Putting family-centered care into practice-a response to the adaptive practice model.
J Dev Behav Pediatr.
1999;
20
120-122
25
Horst L, Werner R R, Werner C L.
Case management for children and families.
J Child Fam Nurs.
2000;
3
5-14
26
Letourneau N L, Elliott M R.
Pediatric health care professionals' perceptions and practices of family-centered
care.
Childrens Health Care.
1996;
25
157-174
27
Eichner J M, Johnson B H.
Family-centered care and the pediatrician's role.
Pediatrics.
2003;
112
691-696
28
Smith V K, Prelock P A.
A case management model for school-age children with multiple needs.
Lang Speech Hear Serv Sch.
2002;
33
124-129
29 Lord C, Paul R.
Language and communication in autism . In: Cohen DJ, Volkmar FR Handbook of Autism and Pervasive Developmental Disorders.
2nd ed. New York, NY; Wiley 1997: 195-225
30 Volkmar F R, Carter A, Grossman J, Klin A.
Social development in autism . In: Cohen DJ, Volkmar FR Handbook of Autism and Pervasive Developmental Disorders.
2nd ed. New York, NY; Wiley 1997: 173-194
31 Prelock P A, Vargas C M.
The role of partnerships in program development for adolescents with autism spectrum
disorders . In: Vargas CM, Prelock PA Caring for Children with Neurodevelopmental Disabilities
and Their Families: An Innovative Approach to Interdisciplinary Practice. London;
Lawrence Erlbaum 2004: 275-302
32
Westby C E, Ford V.
Professional communicative paradigms in family-centered service delivery.
ASHA Monogr.
1993;
30
50-59
33 AUCD .LEND Directory 2001 [Association of University Centers on Disabilities website]. Available at: http://www.aucd.org/aucd_lend.htm Accessed August 2, 2005
34
Prelock P A, Beatson J E, Contompasis S H, Bishop K K.
A model for family-centered interdisciplinary practice in the community.
Topics in Language Disorders.
1999;
19
36-51
35 O'Rourke D A, Dennis R.
Community-based, interdisciplinary assessment: considering the context for a child
with spina bifada . In: Vargas CM, Prelock PA Caring for Children with Neurodevelopmental Disabilities
and Their Families: An Innovative Approach to Interdisciplinary Practice. London;
Lawrence Erlbaum 2004: 145-184
36 Yoder J, Burchard S.
Parent to parent practicum to learn about the family perspective: Down syndrome and
celiac disease . In: Vargas CM, Prelock PA Caring for Children with Neurodevelopmental Disabilities
and Their Families: An Innovative Approach to Interdisciplinary Practice. London;
Lawrence Erlbaum 2004: 245-274
37
Newton M S.
Family-centered care: current realities in parent participation.
Pediatr Nurs.
2000;
26
164-168
38
Thies K M, McAllister J W.
The Health and Education Leadership Project: a school initiative for children and
adolescents with chronic health conditions.
J Sch Health.
2001;
71
167-172
Jean E BeatsonEd.D. R.N.
Vermont Interdisciplinary Leadership Education for Health Professionals (VT-ILEHP)
Program, University of Vermont
206 Farrell Hall, 210 Colchester Avenue, Burlington, VT 05405
Email: jean.beatson@uvm.edu