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Preparing Speech-Language Pathologists as

Family-Centered Practitioners in Assessment


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. The impact of
an equal playing eld where the familys voice
on every team is as important as every other
team members cannot be underestimated.
10
Imagine a world where the hard choices are
ones made by all team members, with deep
respect and care.
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