and Program Planning for Children with Autism Spectrum Disorder Jean E. Beatson, Ed.D., R.N. 1 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 under- standing family-centered care to being family-centered practitioners in- cludes 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 Learning Outcomes: As a result of this activity, the reader will be able to (1) describe a model of family-centered care; (2) explain the impact of family-centered care for children with autism spectrum disorders; and (3) identify the essential components for a preservice family-centered curriculum. Language, Social, and Cognitive Communication in Children with Autism Spectrum Disorders; Editors in Chief, Audrey L. Holland, Ph.D., and Nan Bernstein Ratner, Ed.D.; Guest Editor, Patricia A. Prelock, Ph.D., CCC-SLP. Seminars in Speech and Language, volume 27, number 1, 2006. Address for correspondence and reprint requests: Jean E. Beatson, Ed.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. E-mail: jean.beatson@uvm.edu. 1 Research Assistant Professor, Vermont Interdisciplinary Leadership Education for Health Professionals (VT-ILEHP) Program, University of Vermont, Burlington, Vermont. Copyright #2006 by Thieme Medical Publishers, Inc., 333 Seventh Avenue, New York, NY 10001, USA. Tel: +1(212) 584-4662. 0734-0478,p;2006,27,01,001,009,ftx,en;ssl00255x. 1 There exists a national trend on both the educational and health-care fronts for expand- ing and deepening the role of families with children with disabilities in educational and health-care planning and service. In the world of education, the family role is expanding with each reauthorization of the Individuals with Disabilities Education Act (IDEA). 1 IDEA mandates that parents participate in the deci- sion-making for their childrens special educa- tion plans and that each state have an advisory panel in part made up of parents of children with special health needs. 2 There is recognition within the Ofce of Special Education (OSEP) that families must be at the core of any systems change efforts. 1 In the realm of childrens and families health care, the Maternal Child Health Bureau (MCHB) is an organization charged with im- proving the health of the nations children and families, envisioning a nation where there is equal access for all to quality health care in a supportive, culturally competent, family and community setting. 3 To implement the vision, the MCHB embedded the concepts of family- centered care into its organizational vision. 4 It also provides support to organizations such as Family Voices, a national organization dedi- cated to improving systems of care serving children with disabilities and their families by ensuring that families are included in policy discussions. 5 Additionally, the MCHB funds leadership training programs and projects to prepare speech-language pathologists (SLPs) and other health professionals who can actu- alize the MCHB vision. 6 Traditional preparation of SLPs has as its focus developing knowledge of and skill in addressing disorders in expressive, receptive, and social communication. It is steeped in the biomedical decit-based model, which is nec- essary for developing the requisite technical skills and discipline-specic expertise. 7 How- ever, it is becoming increasingly clear that SLPs and other health professionals must be educated in the strengths-based paradigm to best utilize their technical expertise. 8,9 For SLPs to realize their full potential, they must balance technical expertise rooted in the decit model with the strengths-based model rooted in family- centered care. 911 When serving children with autism spectrum disorder (ASD), the evi- dence suggests that best practice is a family- centered approach to assessment and program planning. 8,10,12 The family-centered philosophy must be- come the foundation upon which SLPs base their thinking and clinical decision-making. 13 Students professional attitudes and values are to a great extent formed during their profes- sional preparation. Therefore, preparing SLPs as family-centered practitioners in program planning and intervention for children affected by autism is best begun in their preservice education. In other words, family-centered phi- losophy must become a cornerstone of graduate education. The purpose of this article is to describe the basic tenets of family-centered care and its impact for children with disabilities and their families, particularly those affected by autism. We review two innovative training programs for SLPs and other health professionals that have incorporated family-centered competen- cies into all aspects of its curriculum. In addi- tion, we propose essential elements of family- centered competency-based training that can be integrated into preservice programs for prepar- ing SLPs as family-centered practitioners. FAMILY-CENTERED CARE Family-centered care is predicated upon the assumption that families are the most crucial lifelong context for childrens development and growth. 14 In the case of children with disabil- ities, families are by far the most consistent caregivers in their lives. 15,16 They have unique knowledge about their childrens growth, de- velopment, and health history. 17 In the world of children with disabilities, there are four predominant service delivery models: medical, child-focused, family-fo- cused, and family-centered care models. 18 The medical model is typically top down and hier- archical; the child-focused model considers the childs developmental needs, but not the family context; and the family-focused model recog- nizes the childs family context, yet lacks col- laboration with the family. In the family- centered care model, both the family and the professionals identify their concerns, and it is 2 SEMINARS IN SPEECH AND LANGUAGE/VOLUME 27, NUMBER 1 2006 these combined concerns that underpin the service delivery plans. Family-centered care is a theory and practice that places the child and family at the core of service delivery. 19 Family-centered care recognizes that all families have strengths 9 and that those strengths are the framework upon which service plans and supports are provided. Shelton and Stepanek 16 articulated the essential elements of family-centered care that can guide practice. The eight key elements state that: 1. The family is the constant in the childs life, while service providers come and go; 2. Collaboration with families is critical; 3. Professionals must exchange unbiased, com- plete information with families; 4. Professionals must honor the diversity of families; 5. Professionals must understand the different ways of coping among families and being responsive to such; 6. Family-to-family networking must be en- couraged and supported; 7. Policies and systems should be exible and responsive to the complex issues of children with special needs and their families; and 8. In the nal analysis, all providers should see children as children and families as families. Family-centered care also expects shared decision-making. 20 Shared decision-making and collaboration create a context of empower- ment where everyone grows and learns. 21 To implement family-centered care, professionals need to know how to provide help in an empowering way, how to be competent in developing relationships, and how to offer fam- ilies choices. 19 In their comprehensive review of the literature on the family-centered care movement, Dunst and Trivette 22 found that, taken collectively, all the family-centered care principles could be distilled into six encompass- ing principles: enhancing a sense of commun- ity, mobilizing resources and supports, shared responsibility and collaboration, protecting family integrity, strengthening family function- ing, and proactive human services practices. Some conceptualize family-centered care as hierarchical and dependent on situational factors and resources, with minimal parental involvement on one end and full implementa- tion of family-centered care at the other end. 23 In a more hierarchical approach, the provider decides how and when to involve the family. 23 This practice has been criticized as preserving the old role of providers as being in charge and undermining authentic collaboration seen as key to implementation 24 and seems to be more representative of the family-focused model. Family-centered care is not a practice decision, but a service approach utilized with all children and families, all the time. 10,19,24 It is a way of being. 10,13 Impact for Children with Disabilities Families who have children with disabilities usually are involved in their childrens lives across their lifespan. 25 They are the most con- sistent members on any team that serves children with disabilities 15 as service provider turnover is high, usually occurring annually. Therefore, developing service plans in collabo- ration with the family becomes critical in achieving desired long-term outcomes. Case managers who incorporate family- centered care into their practice realize im- proved outcomes for families of children with special needs and disabilities. 25,26 Children whose families are involved in their care have less anxiety, improved health, development, and healing, reduced hospital stays, and enhanced learning. 26 Additional outcomes in- clude decreased hospitalizations, increased family involvement and satisfaction, decreased costs, and enhanced family coping. 25 The evi- dence is compelling that for children with autism and other special health needs, family- centered care is best practice. 10,27,28 AUTISM AND THE IMPACT OF FAMILY-CENTERED CARE Family-centered care is particularly suited to children on the autism spectrum and their families because of the complexity and life- long implications of the disability. 8,10 Most children on the autism spectrum exhibit differ- ences, often severe, in communication and social interaction. 29,30 While there are commo- nalties among children on the autism spectrum, no two children with ASD have the same PREPARING SLPs AS FAMILY-CENTERED PRACTITIONERS/BEATSON 3 symptom set, thereby creating the need for unique assessment and intervention strategies tailored to the particular child. Therefore, def- icits due to autism can best be addressed in collaboration with their families who offer their unique knowledge of their children. 10,12 Children with autism benet most when strategies, such as communication techniques, are consistent across settings, like home and school. 10,31 Intervention planning and imple- mentation must be developed in accord with the families context so that effective strategies can be implemented at home. 8,32 When fami- lies and service providers accomplish this, val- ued life outcomes are enhanced for children on the autism spectrum. 8,28,32 Becoming a true partner with families requires that SLPs participate in comprehen- sive training in family-centered care. 10,13 The next section describes innovative training pro- grams that have family-centered care at its core. INNOVATIVE TRAINING PROGRAMS Speech pathologists and other health profes- sionals are often not adequately trained to address the needs of the nations women and children. 6 MCHB Training Programs are working to address this gap by prioritizing health professionals training on the special needs of women, children, and adolescents, such as serving those affected by neurodevelop- mental and multiple disabilities, including au- tism, and prevention of risk behaviors. Consequently, MCHB Training Programs are now focused on training a new generation of family-centered, health professional leaders who can creatively address complex systems issues as well as advocate for children and families, teach, conduct research, and provide quality services. 6,33 Further, MCHB Training Programs are committed to changing the be- liefs and practices of health professionals to reect the core values of family-centered, cul- turally competent, interdisciplinary, and com- munity-based care. 6 It is believed that health professionals who embrace these core values are needed to contribute to solutions in fragmented health care and its systems. MCHB Training Programs have several training priorities with a focus on children with special health needs. 6 These training priorities include communication disorders, physical and occupational therapy projects, behavioral pediatrics, pediatric pulmonary centers, and interdisciplinary approaches such as Leadership Education in Neurodevelopmental Disabilities (LEND) programs. Interdisciplinary appro- aches prioritized through LEND training programs are the focus of this article. LEND The LEND grants are interdisciplinary train- ing programs funded by the MCHB that focus on children with complex health needs and disabilities. The grants purpose is to train leaders to improve the health of children with special health-care needs and to enhance the systems of care for these children and their families. 33 There are 36 LEND programs in 29 states, all associated with universities. Most LEND programs collaborate with their state Children with Special Health Care Needs pro- grams, hospitals, and health-care centers. 6,33 LEND grantees offer technical assistance as well as clinical services to children with developmental disabilities, their families, and community teams. 6 The interdisciplinary focus ensures that children with complex needs re- ceive coordinated care that is family-centered, culturally competent, and community-based. LEND grantees also offer training and advo- cacy in support of their local MCHB programs. Two specic training programs that serve the needs of children with ASD and other neuro- developmental disabilities that are responsive to the MCHB emphasis in leadership training are the Vermont Interdisciplinary Leadership Ed- ucation for Health Professionals (VT-ILEHP) program and the Vermont Rural Autism Proj- ect (VT-RAP). VT-ILEHP The VT-ILEHP program is one of the 36 LEND programs funded through the MCHB Training Program and is housed at the University of Vermont in the College of Med- icine. 34 Similar to other LEND programs nationwide, VT-ILEHP provides advanced training to graduate students and professionals representing the disciplines of speech-language 4 SEMINARS IN SPEECH AND LANGUAGE/VOLUME 27, NUMBER 1 2006 pathology, pediatrics, nursing, audiology, nu- trition, psychology, social work, physical ther- apy, occupational therapy, public health administration, special education, and family support. Leadership in maternal and child health, interdisciplinary collaboration, neuro- developmental disabilities, cultural compe- tence, and family-centered care are the ve pillars of the program and are integrated throughout the curriculum. 11,34 There are several components to the VT- ILEHP program that when combined create a comprehensive family-centered experience. 11,34 These components include community-based assessment (CBA) for children with special needs; a parent-to-parent practicum; a two- semester graduate seminar in neurodevelop- mental disabilities; and leadership and research experience. Each is briey described in the following paragraphs. The CBA is a comprehensive, interdisci- plinary, family-centered assessment of a child with complex needs, such as ASD, that occurs in the childs community. 35 It is a multistep process that begins and ends with the familys concerns and questions concerning their child. 35 For some families, having professionals sit at their kitchen table and ask them what they want help with is a unique and powerful expe- rience. 8 One mother of a son with autism who lived in a rural community said she couldnt believe that a pediatrician, nurse, and SLP were all sitting in her kitchen. Like many families, she was not used to having her questions and concerns taken so seriously. Prioritizing fami- lies concerns and questions in the assessment process ensures that recommendations critical to the problems families are grappling with are generated. 12,34 This level of shared decision- making and collaboration creates a context of empowerment where everyone learns and grows. 8,21 The parent-to-parent practicum involves matching graduate students in speech-language pathology and other disciplines with families who have a child with a disability. 36 Parent to Parent of Vermont, a nonprot organization that offers support and resources to families of children with special needs, recruits and trains the families to teach the graduate students about the daily lives of children and families affected by disabilities. Students also learn about families struggles with policies and systems and begin to envision how things could be improved. Perhaps most importantly, stu- dents integrate the value and philosophy of family-centered care. All VT-ILEHP students participate in a two-semester graduate-level course designed by an interdisciplinary faculty. 11 The course has as its focus specic neurodevelopmental disabil- ities, such as ASD; policy and leadership; health-care systems, cross-cultural perspectives; and family-centered care. Assignments are designed to enhance critical thinking in these areas. VT-ILEHP students also must conduct some research and participate in leadership experiences. 11 Their research must be in the area of child health or neurodevelopmental disabilities. Their leadership activities are var- ied and may include participating in a regional committee, 11 identifying a community educa- tional need and organizing a training, 35 or collaborating in teaching a seminar with one of the VT-ILEHP faculty. 35 VT-RAP VT-ILEHP partnered with the VT-RAP, an- other training initiative specically targeting children and families affected by ASD and their teams. 31 The VT-RAP program was a 3-year federally and state-funded training grant designed to prepare graduate students in speech-language pathology and community professionals in speech pathology and related disciplines to better serve young children with or suspected of having ASD and their families. Fifty individuals (i.e., speech-language gradu- ate students, community speech-language pathologists, early educators, and other rela- ted service professionals) received intensive training between 1997 and 2000 in the assess- ment of and intervention with children affected by autism and their families. 8 Similar to VT-ILEHP, the VT-RAP program was a competency-based program in the areas of family-centered care, interdisciplinary collabo- ration, assessment and intervention in ASD, and leadership in systems change. There were several curriculum components that were employed to train the participants in PREPARING SLPs AS FAMILY-CENTERED PRACTITIONERS/BEATSON 5 family-centered care. 8 The VT-RAP trainees enrolled in 18 graduate credits in assessment and intervention in ASD taught by the project director along with an interdisciplinary faculty, including parents of children with autism. They became part of a family-centered assessment team that provided interdisciplinary, commun- ity-based consultation to at least two children and families affected by ASD and their teams. VT-ILEHPs interdisciplinary, family-cen- tered, and community-based assessment team was used as a practicum experience for VT- RAP trainees. Each VT-RAP participant also designed a family-centered, summer interven- tion program for children with ASD and their families in their home communities. Further, the participants provided 40 hours of respite to a family with a child with ASD. The VT-RAP graduates experienced a transformation in their training from being identied within their discipline rst and fore- most as an SLP, to being a family-centered SLP. 10 It heralds a shift that at rst blush may seem subtle yet creates new paradigms. Similar to the insistence on person rst lan- guage when describing a child with autism versus an autistic child, the emphasis is placed on the family, followed by the lens of the discipline. This transformation can only be created when certain essential elements of fam- ily-centered training exist within preservice educational programs. 10,13 ESSENTIAL ELEMENTS OF FAMILY-CENTERED TRAINING Family-centered values and principles must be embedded in all aspects of the curriculum in preparing health professionals, 26,37 special edu- cators, and teachers. 38 Families must be in- volved early on in the preparation of service providers, both in the classroom and in the families own homes. 10,13 Partnerships with families are predicated on the understanding that both families and providers are engaged in a relationship whereby each learns from the other. 36 Therefore, university programs must incorporate family faculty to teach alongside their regular faculty. Essential elements of family-centered training for SLPs in the assessment and pro- gram planning for children with ASD include technical and leadership skills as well as a variety of experiences with families. 10 Technical and leadership skills include assessment and intervention in ASD, interdisciplinary collabo- rative teaming and conict resolution, and evidenced-based practice. Students must expe- rience families teaching in their classrooms alongside the traditional academic faculty. Stu- dents also need to have experiences in families homes. 10,13,36 Each of these essential elements of family-centered training is discussed in more detail below. Technical and Leadership Skills Technical and leadership skills are about gain- ing knowledge and expertise in the area of ASD. 10 With an increase in competence comes an increase in condence allowing the SLP to naturally assume a leadership role when advo- cating for evidenced-based programs for chil- dren on the autism spectrum. To increase their knowledge and expertise in family-centered care when working with a child with ASD, students must participate in a family-centered assessment and intervention process for that child with ASD. 8,10 Family-centered assessment and interven- tion require that the concerns and questions a family has for their child become central to the assessment and intervention plan. 8,10,35 A part- nership is formed with the family in which mutual teaching and learning occur. The proc- ess begins and ends with the family, creating a context of empowerment where everyone grows and learns. 8,10 Families need to be assured that service providers are organized, accountable, and knowledgeable. 10 For children with complex needs, such as autism, interdisciplinary collabo- rative teams are best suited to meet those needs. 35 Collaborative team members must de- velop skills in effective listening and speaking, creative problem-solving and decision-making, and conict resolution. 11 Team members must develop organizational skills and learn how to set an agenda for and facilitate team meetings and follow a process for shared leadership. 10 They must know how to include and support parents as fully participating team members. 35 6 SEMINARS IN SPEECH AND LANGUAGE/VOLUME 27, NUMBER 1 2006 A critical component of preparing SLPs to be family-centered practitioners lies in their development of state-of-the-art knowledge and skill in assessment and intervention in autism. They must be able to recognize the characteristics associated with autism and work collaboratively with physicians and families through a diagnostic process. It is essential for students in SLP to become familiar with the professional literature and evidenced-based practice. Students who have received this type of training found that being armed with this knowledge and experience enabled them to advocate for effective assessment protocols and programs for children with ASD and their families. 10 Experiences with Families Students should have a variety of experiences with families to understand the context in which families live and support their children with special needs. These experiences might involve having family members function as faculty in the formal teaching environment, matching students with families who have chil- dren with special needs, and participating with families as part of collaborative assessment teams. 10 Family members provide powerful stories that perfectly augment classes on assess- ment and intervention for ASD. Students ex- periencing family members who coteach classes learn that the family perspective is sought after and respected. Matching students with families who have children with ASD provides a different sort of experience. Students set aside their discipline and enter into the life of a family with the purpose of learning what life is like for them. 36 For example, students might spend 40 hours over a 9-month period of time with their family. Some of this time is spent getting to know one another, and some time is spent providing respite or developing a project that addresses a need or desire of the family. Stu- dents learn about the sibling perspective and the complicated daily lives that families lead. Invariably they see rsthand the impact of each new intervention idea, added appointments, or diagnostic procedures on the families lives. The students return to their professional role with a deep appreciation for the families realities, making this family match experience a life- changing component of family-centered train- ing. They learn that they are much more than an SLP. 10 They discover that they are people forming compelling and authentic relationships with families, and as such, must respond hon- estly and with integrity and care to the issues and concerns with which families grapple. IMPLICATIONS The rhetoric and theory of family-centered care have been written about for many decades. The time has come when the preservice preparation of SLPs and other professionals truly embodies the principles of family-centered care. Their training must incorporate the components of technical and leadership skills as well as a variety of experiences with families. Once pre- service curriculum becomes family-centered, a cadre of family-centered practitioners will enter the workforce, imbuing the service systems with a paradigm where families are true part- ners with an equal voice. Advocacy, leadership, and thus change become possible. SLPs in practice seeking to advance their knowledge and skills can seek family-centered training in which the essential elements dis- cussed in this article are included. SLPs who considered themselves to be family-centered, yet participated in advanced training such as the VT-RAP program, felt a transformation where they moved from a cognitive approach to sup- porting families to a state of being family- centered. 10 Academics who tap into the teaching ex- pertise of families understand the vividness the family voice brings to the classroom. The voices of families bridge the ivory tower to the kitchen table. Suddenly, everything students are learn- ing is brought into sharp relief; real problems are described and explored. Not only are stu- dents taught to think with their head, they learn to listen with their heart. Their deepened understanding of the complexities with which families deal helps students come to know their role as more than being just an SLP. 10 The implications for families are harder to imagine. It is tempting to say that a family- centered world is one where needs will be met, PREPARING SLPs AS FAMILY-CENTERED PRACTITIONERS/BEATSON 7 and everyone lives happily ever after. We must remember we still live in a world of budget constraints and hard choices. That said, a fam- ily-centered service system can be envisioned as all people listening to one another and together working hard to serve children. 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