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Family-Centered Care for Children With Autism Spectrum Disorders: A

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Family-Centered Care for Children With Autism Spectrum Disorders: A Review

Elaine M. Gabovitch a; Carol Curtin a
a
University of Massachusetts Medical School-Eunice Kennedy Shriver Center, University Center for
Excellence in Developmental Disabilities, Waltham, Massachusetts, USA

Online Publication Date: 01 July 2009

To cite this Article Gabovitch, Elaine M. and Curtin, Carol(2009)'Family-Centered Care for Children With Autism Spectrum Disorders: A
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 Marriage & Family Review, 45:469–498, 2009
Copyright # Taylor & Francis Group, LLC
ISSN: 0149-4929 print=1540-9635 online
DOI: 10.1080/01494920903050755

Family-Centered Care for Children With

Autism Spectrum Disorders: A Review

ELAINE M. GABOVITCH and CAROL CURTIN

University of Massachusetts Medical School–Eunice Kennedy Shriver Center, University
Center for Excellence in Developmental Disabilities, Waltham, Massachusetts, USA

Much has been written about family-centered care (FCC) as a best

Downloaded By: [Gabovitch, Elaine M.] At: 16:44 28 July 2009

practice for children with special health care needs. There is limited
research on the extent to which children with autism spectrum disor-
ders and their families receive FCC or to delineate what elements of
FCC are particularly important to meet their needs. We will examine
the extant literature on FCC as a collaborative and empowering prac-
tice, the perceptions of parents of children with disabilities about FCC
in both the healthcare and education fields, and will review the limited
research on the specific needs of families that have a child with ASD.
As part of this review, we will identify future directions for research
and practice in caring for children with ASD and their families.

KEYWORDS autism spectrum disorders, children with special

health care needs, family-centered care, medical home, parents

Of all the challenges a parent may ever face, caring for a child with special health
care needs is among the most life changing. Children with special health care
needs (CSHCN) are children who have or who are at risk for ‘‘chronic physical,
developmental, behavioral, or emotional conditions and who require health and
related services of a type and amount beyond that required by children gener-
ally’’ (McPherson et al., 1998, p. 138). Over the years a growing body of literature
has pointed to the importance of caring for CSHCN in the context of the family
and including family members as equal partners in care. This approach, com-
monly referred to as family-centered care (FCC), acknowledges and values
the central role families play in children’s health and well-being and encourages
collaboration, information sharing, empowerment, and joint decision making

Address correspondence to Elaine M. Gabovitch, University of Massachusetts Medical

School–Eunice Kennedy Shriver Center, University Center for Excellence in Developmental Dis-
abilities, 200 Trapelo Road, Waltham, MA 02452, USA. E-mail: [Link]@[Link]

469
 470 E. M. Gabovitch and C. Curtin

between parents and providers to meet these children’s significant needs

(Ahmann & Johnson, 2000; American Academy of Pediatrics [AAP], 2003; Shel-
ton, Jeppson, & Johnson, 1987).
Within CSHCN, one of the most critical and increasing populations is
that of children with autism spectrum disorder (ASD). ASD is a term used
to encompass the diagnostic categories of Autistic Disorder, PDD-Not Other-
wise Specified (NOS), Asperger’s Syndrome, Childhood Disintegrative
Disorder, and Rett Syndrome, although these latter two disorders are rare.
Individuals with ASD share many characteristics in common, such as delayed
and disordered language development, impaired reciprocal communication
skills, stereotypic behaviors, a tendency toward rigidity and perseverative
behavior, and other sensory and behavioral difficulties, all of which can exist
on a continuum from mild to severe (Filipek et al., 1999). Regardless of level
of severity, the nature of ASD is such that it places tremendous demands on
families as they strive to meet the needs of their children and to maintain
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healthy family functioning (Abbeduto et al., 2004; Essex, Seltzer, & Krauss,
1999; Gray, 2003; Hastings et al., 2005; Montes & Halterman, 2007).
In recent years the prevalence rate of ASD has skyrocketed from early
estimates of 4 to 6 in 10,000 in 1980 (Fombonne, 2001) to recent estimates
as high as approximately 1 in 150 (Centers for Disease Control and Preven-
tion [CDC], 2007b). The CDC has ranked autism as the second most serious
developmental disability, just behind intellectual disabilities (CDC, 2007a).
ASD is found in all social, racial, cultural, and socioeconomic groups and
is four times more likely to occur in males than in females. Although the
increased prevalence may reflect differences in diagnostic criteria, new meth-
odologies of evaluation, and increased awareness (Charman, 2002; Wing &
Potter, 2002), the rise in numbers points to a condition that is more common
than previously thought and has become a focus of urgent concern to the
medical and public health communities, educators, and researchers.
As noted, a growing body of literature has examined the impact of FCC on
the lives of CSHCN and their families; however, very little has focused on
families of children with ASD. The literature that does exist suggests that families
of children with ASD are in great need of FCC but may not be receiving it to the
extent warranted. In this article we examine the extant literature on FCC, includ-
ing information on parents’ perceptions of FCC in both the health care and edu-
cation fields and the limited research on the specific needs of families that have a
child with ASD. We also recommend future directions for research and practice
to make FCC a reality for children with ASD and their families.

DEFINING FAMILY-CENTERED CARE

The U.S. Maternal and Child Health Bureau defines FCC as an approach to
care that ‘‘assures the health and well-being of children and their families
 Family-Centered Care for Children With Autism 471

through a respectful family-professional partnership. It honors the strengths,

cultures, traditions, and expertise that everyone brings to this relationship [and
is] the standard of practice which results in high quality services’’ (McPherson,
2005; original source is National Center for Family-Centered Care, 1989). Impli-
cit in this definition are the core tenets of FCC, which include regarding the
family unit as a constant in the child’s life, building on family strengths,
empowering families to advocate for their child’s and their own needs,
involving families in decision making about care, providing continuity of care,
promoting parent–professional partnership and collaboration, developing
cultural competence, ensuring equity, understanding the importance of
community-based services, and generally improving services to CSHCN and
their families (Bishop, Woll, & Arango, 1993; McPherson, 2005).
The AAP promotes the concept of the ‘‘medical home’’ in primary care. In a
medical home the provider works collaboratively with the family and patient to
ensure the patient’s medical and nonmedical needs are met and is responsible
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for assisting the patient and family to access services (e.g., specialty care, educa-
tional services, support services) and for coordinating that care. A medical home
embodies FCC by providing care that is ‘‘accessible, continuous, comprehensive,
family-centered, coordinated, compassionate, and culturally effective’’ (AAP,
2002, p. 184). In 2003 the AAP Institute for Family-Centered Care asserted the
central role of families in ensuring the health and well-being of children and
delineated FCC as an ‘‘approach to health care that shapes health care policies,
programs, facility design, and day-to-day interactions among patients, families,
physicians, and other health care providers’’ (AAP, 2003b, p. 691).
The traditional medical model in which the physician is the ‘‘expert’’ and
the patient’s role is to follow doctor’s orders works most effectively when the
patient has an illness that is acute, requires immediate intervention, and
where a ‘‘cure’’ is likely. For chronic diseases and disorders that have no
ready cures and require management throughout a lifetime, the medical
model has less to offer and may thwart the patient’s ability to play a role
in his or her own care (Renty & Roeyers, 2006; Sperry, Whaley, Shaw, &
Brame, 1999). Even with well-designed and appropriate interventions carried
out by skilled clinicians and dedicated parents, some children with ASD may
make only modest progress and may continue to need significant supports
throughout their lifetimes. Thus the increased prevalence of ASD, its com-
plexity, and its lifelong course call for understanding the impact of ASD on
the entire family and for providing FCC so that families receive the support
they need to nurture their children to achieve the best outcomes possible.

FCC AND CHILD AND FAMILY OUTCOMES

The AAP (2003b) provides a brief review of literature linking FCC to a

number of positive health outcomes for patients and families. Hospital-based
 472 E. M. Gabovitch and C. Curtin

studies have shown that FCC reduces anxiety for children and parents when
parents remain present during a child’s hospital stay. FCC practices have also
resulted in decreased recovery time from medical procedures, reduced need
for patient medication, reduced emotional distress, and increased coping and
adjustment for children and parents (Blesch & Fisher, 1996; Fina, Lopas,
Stagnone, & Santucci, 1997; Harbaugh, Tomlinson, & Kirschbaum, 2004;
LaRosa-Nash & Murphy, 1997; Powers & Rubenstein, 1999; Shelton &
Stepanek, 1994; Wolfer, Gaynard, Goldberger, Laidley, & Thompson, 1988;
Wolfram & Turner, 1996).
Research has also shown that FCC fosters better relationships and
communication between parents and providers (MacKean, Thurston, & Scott,
2005) and yields greater satisfaction with care (Denboba, McPherson,
Kenney, Strickland, & Newacheck, 2006; Palfrey et al., 2004; Young, Davis,
Schoen, & Parker, 1998). Moreover, collaborative problem solving between
providers and patients has been shown to increase parent confidence and
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personal control and empowerment and to result in improved child behavior

and improved quality of parent–child interactions (Brookman-Frazee, 2004;
Regan, Curtin, & Vorderer, 2005; Trivette, Dunst, Boyd, & Hamby, 1995).
FCC improves families’ access to health care, which has important implica-
tions for overall health, adjustment, and life outcomes (Denboba et al.,
2006; Palfrey et al., 2004). FCC also has been found to confer benefits to
pediatricians, including stronger alliances with patients, improved clinical
decision making, better follow-through on the part of patients, greater under-
standing of families’ capacities, improved communication, more competitive
standing in the health care market, and greater child and family satisfaction
(AAP, 2003b; Schulz, Buchanan, & Ochoa, 2004).
Dunst, Trivette, and Hamby (2007) conducted a meta-analysis of 47 stu-
dies to determine the relationship of family-centered help-giving practices to
child and family outcomes. Parent, family, and child functioning outcomes
included self-efficacy beliefs, satisfaction, parenting behavior, well-being,
social support, and child behavior and functioning. The studies included in
the meta-analysis were carried out in a variety of different settings (e.g.,
hospitals, pediatric practices, mental health clinics), two-thirds of which
involved children with developmental disabilities. The authors found that
family-centered practices yielded statistically significant outcomes in partici-
pant satisfaction with care providers and programs. Participants were also
found to have higher self-efficacy in their perceptions of the control they
had over the assistance they received as well as their perceptions of control
over life events. The meta-analysis also found that family-centered help-
giving practices had a positive influence on child behavior, well-being,
and parenting behavior, though these outcomes were more distal to the
help received. Finally, the authors compared practices that were deemed
‘‘relational’’ (i.e., clinical practices such as empathy, compassion, showing
respect, practicing active listening) with those considered ‘‘participatory’’
 Family-Centered Care for Children With Autism 473

(i.e., practices that are flexible, responsive to family needs, and encourage
family involvement in making informed choices and achieving goals). They
found that participatory practices had a stronger relationship to the outcomes
of interest, suggesting that active participation on the part of participants is
more likely to build capacity in the individuals. However, it is likely that
practitioners who engage in participatory practices are also likely to engage
in relational practices as well.
Taken together, the extant research suggests that children and families
benefit in numerous ways from FCC that has been found to have a positive
impact on medical and psychosocial outcomes, adherence, the quality of
patient–provider relationships, and greater satisfaction with care. Given that
ASD is a complex and challenging developmental disorder that requires
multiple encounters with systems of care, it seems that FCC may be particu-
larly well suited to the needs of families of children with ASD.
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HISTORY OF FCC FOR FAMILIES OF CSHCN AND ASD

The concept of FCC finds its roots within the field of social work as early as
the late 19th century, though the term was first used in the late 1950s to
describe certain forms of social work service delivery (Allen & Petr, 1995).
Before the 1960s it was unusual for families to be viewed as integral to the
lives of children with disabilities, and the helping professions did not yet
understand how to include children with developmental disabilities and their
families in their children’s own health care and education. Many children
were placed in custodial care institutions or were kept at home but segre-
gated from their communities (AAP, 2001a; Petr & Allen, 1997). The late
1980s and 1990s saw a number of legislative and organizational efforts that
led to wider acceptance of family-centered approaches in both health care
and education for CSHCN. Parents and professionals advocated legislatively
for families to be included in the planning of essential services that were to
be community based and integrated. The effect on health care was the evolu-
tion over time from the traditional medical model into a family-centered
‘‘developmental’’ model (Allen & Petr, 1995; AAP, 2001a, 2003b). FCC
became the heart of the medical home model of care where primary care
practitioners act as central coordinators for medical and nonmedical health
care and who collaborate with patients and families as partners in the
patient’s own care (AAP, 2002, 2003b; Sia, Tonniges, Osterhus, & Taba,
2004). FCC eventually found its way into the Early Intervention system, under
Part C of the Individuals with Disabilities Education Act (U.S. Public Law
105-17, 1999), which made parent–professional collaboration for CSHCN a
cornerstone of the law (Allen & Petr, 1995; Dunst, 2002; Leiter, 2004).
Bringing families of children with ASD into the medical encounter as
equal partners in care has been a long and painful struggle. As autism was
 474 E. M. Gabovitch and C. Curtin

first being described in the early 1940s by Dr. Leo Kanner, the prominence of
psychoanalytic thought during that era gave rise to theories that attributed
the development of autism to poor or faulty parenting. The most notable
of these was Bruno Bettelheim’s ‘‘refrigerator mother’’ theory in which autism
was considered to be a child’s response to a cold and detached mother.
Although this theory has long been proven invalid, it was accepted for some
decades, and there are indications that some traces may still linger today
among providers. For example, Heidgerken, Geffken, Modi, and Frakey
(2005) found that primary care providers were more likely than clinical
specialists to endorse statements that reflected outdated thinking on autism,
such as ‘‘autistic children’s withdrawal is mostly due to cold, rejecting par-
ents’’ (pp. 326–327). They were also less likely to see the need for specialized
educational programming for children with ASD. This has important implica-
tions for FCC, because primary care providers are often the professionals
with whom families first consult when there is a concern about a child’s
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development.
Today, momentum for FCC continues to build, supported by the grow-
ing body of research and programs from leading organizations, particularly
in the fields of pediatrics, nursing, and early intervention. Unfortunately,
family-centered research and practice in elementary and secondary educa-
tion have lagged (Dunst, 2002; Renty & Roeyers, 2006), and families of
children with ASD continue to receive care that is lacking in the provision
of services, care coordination, and parent–provider communication.

STRESS AND COPING IN FAMILIES OF CHILDREN WITH ASD

Raising a child with pervasive and often severe behavioral, communicative,

social, and learning deficits takes a tremendous toll on the family, the bur-
dens of which far exceed those of families with typically developing children.
As all family systems are unique, so too are their individual family members.
When considering who the members of the ‘‘family’’ might be, a broader
definition worthy of consideration is ‘‘two or more persons who are related
in any way—biologically, emotionally or legally’’ (Institute for Family-
Centered Care, 2007). Because families are defined by their members, a range
of related or unrelated people may make decisions about the daily care of a
child (Briar-Lawson, Lawson, Hennon, & Jones, 2001; Osher & Osher, 2002).
An individual’s capacity for resilience, style of coping, sense of self-
efficacy, and response to family dynamics are all factors that contribute to
how one responds to having a child with ASD (Dunn, Burbine, Bowers, &
Tantleff-Dunn, 2001; Gray, 2003; Hastings et al., 2005; Patterson, 1991).
One important factor in predicting mental health outcomes for parents of
children with disabilities is the severity of the child’s maladaptive behaviors,
which has a direct effect on stress and depression (Abbeduto et al., 2004;
 Family-Centered Care for Children With Autism 475

Montes & Halterman, 2007). The relationship between stress, parental

depression, and child behavior is evident as early as preschool (Hastings
et al., 2005) and exists throughout the lifespan (Essex et al., 1999). The inten-
sity of a child’s behaviors may have myriad lifelong implications for parents
in social, practical, financial, and mental and physical health domains, neces-
sitating that they continue to advocate for their child into adulthood (Gray,
2003; Hare, Pratt, Burton, Bromley, & Emerson, 2004).
Historically, mothers have held the primary responsibility for child care
and other domestic concerns. In spite of changing gender roles in society,
this continues to hold true for many families of children with ASD, where
mothers take on more traditional roles and assume responsibility for caring
for the child with a disability, the family, and household concerns (Abbeduto
et al., 2004; Gray, 2003). After a child’s diagnosis with ASD, mothers are more
likely to curtail or halt their careers, take part-time work, or stay at home full
time to care for their child with a disability. As a result mothers are the parent
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most likely to report the negative impact of a child’s disability on their daily
lives (Gray, 2003; Little, 2002; Montes & Halterman, 2007).
Some studies have found mothers to be particularly prone to stress, anxiety,
depression, physical illness, and compromised emotional well-being as a conse-
quence of a child’s disability, associated behaviors, and levels of support
(Bromley, Hare, Davison, & Emerson, 2004). Compared with mothers of
children with Down syndrome and Fragile X, mothers of children with ASD
experience the highest levels of depression (Abbeduto et al., 2004). Pisula
(2007) compared mothers of children with ASD and Down syndrome in Poland.
Mothers of children with ASD were more likely than those of children with
Down syndrome to perceive that their child needed more assistance and placed
more demands on them and that their child’s disability had a negative impact on
family opportunities, including employment, education, and personal growth.
The level of the child’s problem behaviors and spousal depression may
significantly affect mothers’ own stress and depression (Essex et al., 1999;
Hastings et al., 2005). In spite of this, mothers report that their spouses are
the most important support they have and that this support provides relief
of their considerable burdens (Domingue, Cutler, & McTarnaghan, 2000;
Gray, 2003). The role of optimism appears to have a moderating effect on
mothers’ well-being. Greenberg, Seltzer, Krauss, Chou, and Hong (2004)
compared the mediating role of dispositional optimism on maternal
well-being in Down syndrome, schizophrenia, and ASD. They found that
optimism had the strongest mediating effect on quality of the parent–child
relationship and psychological well-being for mothers of children with
ASD. They hypothesized that because mothers were historically blamed for
‘‘bad parenting’’ to explain their child’s ASD, they were not given hope for
any future improvement. Because their actual positive relationships with
their children contradicted such incorrect predictions, they may have had
every reason to feel optimistic in the face of such odds.
 476 E. M. Gabovitch and C. Curtin

Whereas most studies on stress and coping in mothers of children with

ASD have had small sample sizes, the nationally representative 2003 National
Survey of Children’s Health has served as an important data source for two
recent studies. In contrast to previous literature comparing mothers of chil-
dren with ASD with mothers of typically developing children, Montes and
Halterman (2007) used data from the National Survey of Children’s Health
to examine the experiences of mothers of children with ASD. They found
that these mothers were more likely to report higher levels of stress and men-
tal health problems than the general population of mothers but reported
similar or better strengths in the parent–child relationship, coping, and the
use of informal supports (Montes & Halterman, 2007). Schieve et al. (2007)
also used National Survey of Children’s Health data on parental aggravation
to compare parents of children with ASD with three other parent groups:
parents of CSHCN with other developmental concerns, parents of CSHCN
without developmental concerns, and parents of children without special
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needs. The authors found that if children with ASD had recently needed spe-
cial services, their parents were more likely to report higher aggravation in
parenting than parents of children in the other comparison groups. In con-
trast, parents of children with autism who did not need special services were
found to have lower levels of aggravation and thus were not different from
parents of the children with developmental disabilities. Based on these
results the authors recommended family-centered services to address the
unique stresses and variability among families of children with ASD, recog-
nizing the complexity of the disorder’s effects on individuals and families.
The ways in which fathers cope with having a child with ASD have only
recently been studied in the literature. Fathers often assume the role of work-
ing outside of the home and thus focus on family finances, leaving domestic
concerns to their wives and remaining somewhat uninvolved with their child
with a disability (Essex et al., 1999; Gray, 2003; Hastings & Brown, 2002).
They may feel less competent than their wives in supporting their child,
may use their work as ‘‘respite’’ from having to face the daily challenges that
a child with ASD brings to the family, and may view their roles as a back-up
support for their wives. Although many mothers report wishing that fathers
would assist more at home, they still regard them as an important source
of supplemental support (Domingue et al., 2000; Essex et al., 1999; Gray,
2003). Fathers’ coping and reactions to having a child with a disability are
often experienced relative to their spouses’ responses; increased paternal
stress has been found to result from spousal anxiety or depression. They
frequently perceive mothers’ anguish either as disturbing or as a disruption
to domestic life, which may lead to marital problems. Fathers may tend to
suppress their feelings, which may later be expressed as anger (Gray, 2003).
Study findings may suggest that parental stressors might begin to abate
as children move from adolescence into adulthood and the collective effects
of interventions potentially take hold. Using a life course perspective when
 Family-Centered Care for Children With Autism 477

considering developmental outcomes for adults with ASD seems important,

because maladaptive behaviors may decline considerably over the life course
(Seltzer et al., 2003; Shattuck et al., 2007). These studies may offer some
hope that the challenges of raising a child with ASD can, in fact, improve
over time.
Research on siblings of children with ASD has yielded mixed findings.
Some studies report that siblings experience elevated rates of depression
and poor social adjustment (Gold, 1993; Hastings, 2003; Ross & Cuskelly,
2006), whereas others suggest they are well adjusted (Kaminsky & Dewey,
2002; Pilowski, Yirmiya, Doppelt, Gross-Tsur, & Shalev, 2004) or show
enhanced functioning and positive self-concepts (Macks & Reeve, 2007).
Sibling adjustment has been found to be associated with maternal stress;
children whose mothers experience high levels of stress experience
compromised relationships with their siblings with ASD (Rivers & Stoneman,
2003). These conflicting findings suggest that more research is warranted
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to understand the factors that give rise to successful sibling adjustment;

however, the fact that some siblings experience behavioral and social=
emotional difficulties is important and lends support to including siblings
in services for families of children with ASD. Of interest, Rivers and
Stoneham (2003) found that in families who experienced high levels of stress
and who sought out high levels of formal and professional supports, the
children in the family reported more negative sibling relationships.
Although several possibilities explain this finding, including the fact that
parents may seek more help when there is more sibling discord in the family,
it is also possible that excessive help-seeking has a negative impact on
families. This suggests that families may benefit from help to evaluate and
choose among a variety of resources and options and to avoid the tendency
to subscribe to the misguided belief that ‘‘more is better’’ in pursuing multiple
outside services.
Understanding the role of the siblings in the family and inquiring about
their adjustment reflects the principles of FCC. Harris and Glasberg (2003)
describe that siblings need information about the disability, need respect
separate and apart from their disabled sibling, need an opportunity to share
feelings and experiences with others, and benefit from skill-building to assist
them in their interactions with their sibling with ASD. As the child with ASD
reaches adulthood, siblings may also eventually face new concerns or
responsibilities such as guardianship, financial responsibility, and continuing
involvement (Powell & Gallagher, 1993).
Grandparents can also play a vital role in families’ lives by providing
respite, a listening ear, help with managing finances, and an extra set of
hands when needed. They, too, may benefit from speaking with profes-
sionals to understand the child’s disability, ask questions, and express their
own feelings and concerns. They and other members of the extended family
can be sources of comfort and strength or may be an additional source of
 478 E. M. Gabovitch and C. Curtin

stress, especially if they are unsupportive of the parents or in denial about the
child’s diagnosis (Hecimovic & Gregory, 2005).
Many factors contribute to families’ ability to cope with a child with
ASD. Because of the unique dynamics experienced by all families, a
family-centered approach engages the family in a dialogue about their needs
and supports. By remaining open and inquisitive about the families’ indivi-
dual experiences and coping strategies, professionals are poised to provide
a higher quality of care. Disability must be viewed in the same way as are
cultural differences: with a respect for what one cannot possibly know first-
hand and with a more thoughtful and solicitous approach to seek a greater
understanding of the family’s needs.

FCC FOR FAMILIES AND CHILDREN WITH ASD

Although FCC has gained momentum and acceptance as the model of care
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for CSHCN generally, it has been important to evaluate the extent to which
parents feel they receive FCC and the extent to which the providers practice
FCC. Several studies have documented the status of FCC for families of
CSHCN in general, highlighting that receipt of FCC varies along several
dimensions, including the severity of the child’s condition and other psycho-
social factors. For example, the National Survey of Children with Special
Health Care Needs (National Center for Health Statistics, 2001) was among
the first nationally representative surveys to provide insight into the FCC
experiences of CSHCN. Two-thirds of the parents surveyed (66.5%) reported
that their pediatrician provided all elements of FCC and the remaining
third (33.5%) reported that their pediatrician lacked one or more elements
of FCC in their practices (National Center for Health Statistics=SLAITS,
2001; Strickland et al., 2004; Van Dyck, Kogan, McPherson, Weissman, &
Newacheck, 2004). However, receipt of FCC was not uniform across all
groups. Roughly a one-fourth of families (24%) of children whose conditions
were milder and did not affect their day-to-day functioning reported not
receiving FCC, whereas almost half of families (46%) whose children’s
conditions were more significant and had an impact on daily life reported
that they did not receive FCC. Because ASD is a significant disability that
affects a child’s daily functioning, it is likely that families of children with
ASD were among those who reported they did not receive FCC. Disparities
in the receipt of FCC were also found among children from poor families
below the federal poverty level, children from non-white backgrounds,
and families lacking health insurance (Denboba et al., 2006).
Research on families of children with specific disabilities or syndromes
has provided some insight into parental perceptions of FCC and the fact that
families of children with ASD are not alone in their desire and need for FCC.
When mothers of children with Down syndrome believe they have positive
 Family-Centered Care for Children With Autism 479

and family-centered relationships with their children’s health care providers,

they report greater satisfaction with care, are more likely to seek help from
the provider, and report higher levels of psychological well-being and family
functioning (Van Riper, 1999). When physicians emphasize negative aspects
of Down syndrome at the time of diagnosis, mothers feel more anxious and
fearful; however, when positive aspects of Down syndrome are discussed
and parents are provided with current information and materials, mothers
report feeling more hopeful (Skotko, 2005). Families of children with emotio-
nal=behavioral disorders also echo the experiences and needs of parents of
children with ASD. Parents of children with emotional=behavioral disorders
have reported far fewer family-centered behaviors from professionals than
families of children with developmental disorders and chronic health
problems. Moreover, they rate FCC as more important than do families of
children with other conditions, believe that information and informal and
formal supports are of primary importance to them, and believe that provi-
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ders need to improve on facilitating access to formal and informal supports,

providing information, informing parents of their rights, and respecting
parents’ decisions (Petr & Allen, 1997).
Research that focuses specifically on FCC for families of children with
ASD is beginning to emerge. Brachlow, Ness, McPheeters, and Gurney
(2007) conducted a study of 495 children with autism identified in the
National Survey for Children’s Health to determine whether they received
health care consistent with the medical home model compared with children
who have asthma or other special health care needs. The study found that
families of children with autism were half as likely to report that the care they
received from their primary care providers embodied the principles of a
medical home than did children with other special health care needs. They
also reported that primary care providers spent less time with them and dis-
cussed specialty services less often. Finally, these families were less likely to
view the care they received as family centered, comprehensive, or coordi-
nated. Although children with autism were more likely to use specialty ser-
vices, their primary care providers discussed these services less often with
their parents. Conclusions could not be drawn about the reasons for these
disparities, but the authors speculated that primary care providers lack suffi-
cient knowledge about treatment, resources, and therapies for children with
ASD and do not have the time, resources, or staff to manage the significant
needs and challenges of this population. These findings are consistent with
the 2001 National Survey of State Title V Directors that reported that children
with ASD have less access to health care services than other CSHCN, particu-
larly to medical homes, subspecialty services, and mental health services
(Limb, McManus, & Fox, 2001). Another study conducted by Liptak et al.
(2006) found that parents of children who had physical disabilities, intellec-
tual disabilities, or autism rated physicians highly on keeping abreast of new
 480 E. M. Gabovitch and C. Curtin

developments in the care of CSHCN and on their sensitivity to their child

patients. However, they believed their physicians were lacking in several
areas, including connecting them with other parents and understanding of
the impact of the child’s condition on the family. Families of children with
autism were generally more negative in their evaluations of primary care
physicians and indicated that they needed more information on complemen-
tary and alternative treatments and more community support.
Much of the extant literature on parental perspectives focuses on
families’ experiences around the time of the child’s diagnosis, because this
is seen as a crystallizing event that shapes parental values, behavior, and
expectations of health care and education providers (Fleischmann, 2004;
Howlin & Moore, 1997; Renty & Roeyers, 2006; Shields, 2001; Stoner et al.,
2005; Whitaker, 2002). Mansell and Morris’s (2004) delineation of the four
stages of the diagnostic process—prediagnosis, diagnosis, postdiagnosis,
and acceptance and adaptation—is useful in reviewing the literature on the
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experiences of parents of children with ASD.

The prediagnosis stage is the time when parents’ suspicions of a problem
first arise. The average age of an autism diagnosis has been reported to fall
somewhere between 3 and 7 years (Howlin & Moore, 1997; Mandell, Novak,
& Zubritsky, 2005; Siklos & Kerns, 2005). More recently, the multisite Autism
and Developmental Disabilities Monitoring Network at the CDC (2007b) found
that in spite of documented concerns about developmental delays before the
age of 3 years, most children did not receive a diagnosis until well after that
time, with the median age of diagnosis ranging from 49 to 66 months of age
nationwide. Although the AAP Consensus Statement (2001b) emphasizes that
parent observations should play a key role in early identification, many parents
report that when bringing their concerns to primary care providers they are
often advised to ‘‘wait and see.’’ This causes great frustration for parents who
believe their concerns have been ignored or discredited by clinicians, only to
learn later that their suspicions were borne out and that precious time has been
lost that will never be recaptured in their child’s life (Domingue et al., 2000;
Fleischmann, 2004; Harrington, Patrick, Edwards, & Brand, 2006; Howlin &
Moore, 1997; Hutton & Caron, 2005; Kohler, 1999; Mansell & Morris, 2004;
Renty & Roeyers, 2006; Stoner et al., 2005; Whitaker, 2002). Parents emphasize
the need for health care providers to listen to their concerns and follow up
with screening and=or referral to specialists as a critical part of FCC (Hutton
& Caron, 2005; Renty & Roeyers, 2006). The level of satisfaction that parents
report is inversely related to the length of time they have waited for a diagnosis
and obtained appropriate services (Harrington et al., 2006; Howlin & Moore,
1997; Renty & Roeyers, 2006).
When parents receive their child’s diagnosis of ASD, they experience a
range of emotions including bewilderment, confusion, grief, fear, stress,
guilt, anger, as well as validation and even relief (Domingue et al., 2000;
Fleischmann, 2004; Hutton & Caron, 2005; Mansell & Morris, 2004; Shields,
 Family-Centered Care for Children With Autism 481

2001; Stoner et al., 2005; Whitaker, 2002). Parents emphasize how important
it is to have an early diagnosis; whereas at first it may seem tragic and overwhelm-
ing for a parent, in the end it is a catalyst for action (Hutton & Caron, 2005;
Nissenbaum, Tollefson, & Reese, 2002). A timely, compassionate, and clearly
explained diagnosis followed up by providing resources and referrals to appro-
priate and individualized services strengthens and empowers families in the
midst of such a life-altering crisis (Harrington et al., 2006; Renty & Roeyers, 2006).
Kennedy, Regehr, Rosenfeld, Roberts, and Lingard (2004) conducted a
qualitative study of medical residents in training to identify factors that
may prevent clinicians from sharing an early suspicion of autism with
families. Residents offered a number of rationalizations to explain their
approach to delivering an autism diagnosis, and, interestingly, the same
rationalizations were used to explain opposite approaches. Some believed
that the newness of the relationship with the parent was a factor in how
direct to be and worried that the parent would not return if given upsetting
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news, which they believed warranted being less direct. Others, however,
believed that if parents were to become upset and not return, the clinical
encounter presented a critical window of opportunity to be very direct.
The level of urgency and the degree of certainty were two additional factors
in determining whether the diagnosis was shared. Thus training that
facilitates physicians’ certainty as well as their level of urgency may promote
early identification and treatment of children with ASD. It also suggests that
physicians likely require specific training to manage the complexities of their
relationships with parents and to deliver difficult news.
Nissenbaum et al. (2002) describe the challenges that nonmedical profes-
sionals (i.e., psychologists, clinical therapists, special educators) face when
informing parents of an ASD diagnosis. They found that parents and profes-
sionals have markedly different perceptions of the potential outcomes for chil-
dren with ASD. Parents initially believed the diagnosis was a ‘‘death sentence’’
for the child but over time reported their beliefs about their child’s prognosis in
more hopeful terms than did professionals. Most professionals believed that
parents were unrealistic in their expectations for their child and perceived
ASD as a controversial, lifelong disorder that has significant stigma attached
to it. For the most part, parents viewed the delivery of a diagnosis at the con-
ference as a positive experience, especially if professionals listened well, had
relaxed body language, used simple and clear language, and demonstrated
humor, empathy, compassion, and a general interest in the child and family.
Conversely, parents viewed the experience negatively if professionals dis-
played a lack of interest or rigidity. Professionals indicated that giving a diag-
nosis often caused them overwhelming anxiety, sometimes to the point of
feeling physically ill and sad for the family, which parents may have miscon-
strued as indifference. Most parents recalled hearing a negative prognosis
and felt a great need for professionals to hold out hope by being positive
and describing the child’s potential for improvement (Nissenbaum et al., 2002).
 482 E. M. Gabovitch and C. Curtin

The postdiagnosis period finds parents experiencing a range of

concerns from hope to devastation as they urgently search for information,
support, and treatment. In the wake of receiving the diagnosis, the earliest
years of intervention are a very intense and busy time for families, who typi-
cally hunger for information and solutions and are proactive in finding them
(Fleischmann, 2004; Stoner et al., 2005; Whitaker, 2002). Parents often
express an intense need for regular communication with professionals and
value and trust those who have positive and open-minded dispositions
(Renty & Roeyers, 2006; Stoner et al., 2005).
During the postdiagnosis period, parents often enlist a multitude of
diverse and intensive agencies, providers, and services for their child with
ASD in an urgent effort to facilitate positive developmental outcomes. Kohler
(1999) studied a group of 25 families of children with ASD ages 3 to 9 and
found that they averaged having six different services over a 6-month period,
interacted with four or more agencies involving seven or more professionals
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at any given time, and received approximately 37 total hours of intervention

each week. Using multiple providers created several problems for families,
including services not effectively meeting the child’s or family’s needs, lack
of communication from providers, difficulty accessing services, lack of inter-
agency collaboration, and, most concerning, families’ limited participation in
interventions and decision making about their children’s services. Hutton and
Caron (2005) found that families living in rural locations are challenged even
further to obtain services due to the lack of well-trained professionals, long
waiting lists, extensive travel distances, and few respite services and support
groups. They often find themselves juggling multiple service providers, trans-
portation, other children in the family, and tremendous paperwork loads,
only to result in services that are poorly coordinated and fragmented
(Hutton & Caron, 2005; Kohler, 1999).
Although health care providers play a critical role throughout the lives
of CSHCN, for children who are medically healthy, as are the majority of
children with ASD, the locus of intervention resides mainly within educa-
tional settings. For children with ASD numerous educational and therapeutic
interventions, including speech=language therapy, occupational therapy,
behavioral therapy, and other interventions, are often carried out in early
intervention programs and, later, at school. Early Intervention (EI), the feder-
ally mandated program that offers services to children ages 0 to 3, is typically
the first experience that parents of children with ASD have with nonmedical
systems of care. At the heart of EI is the fundamental belief that the needs of
infants and toddlers are best understood within the context of the child’s
family (Wehman, 1998). Beyond EI, however, as children move onto elemen-
tary and secondary education, the extent of parent–educator collaboration
has been found to be variable (Dunst, 2002). In general, past research has
documented that family-centered approaches are less common in educa-
tional settings. The term ‘‘family-centered care’’ is rarely found in education
 Family-Centered Care for Children With Autism 483

research literature (Allen & Petr, 1995; Dunst, 2002; McWilliam, Maxwell, &
Sloper, 1999); rather, ‘‘family involvement’’ is a more common term, which
encourages parent participation as the teacher’s agent in meeting educational
goals for the student, such as helping with homework and other
school-related activities (Epstein, 2001; McWilliam et al., 1999).
McWilliam et al. (1999) surveyed parents of children with disabilities,
parents of typically developing children, special educators, and regular
educators about their perspectives on family-centered practice in the early
elementary school grades. Families of children with disabilities reported
receiving fewer family-centered services than families of typically developing
students and also perceived that services were less family centered than
teachers did. In general, there is limited research on family-centered practice
of any kind at the secondary school level. Parent involvement is reported as
occurring less frequently for older children as they gain further indepen-
dence (Dunst, 2002; Spann, Kohler, & Soenksen, 2003). For parents of older
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children with ASD, levels of parental satisfaction decrease regarding home-

school communication, involvement in the IEP process, and the school’s
ability to address the child’s needs (Spann et al., 2003).
In spite of the lack of research on FCC in educational settings, parent
involvement has been shown to be the best single predictor of satisfaction
with school services for families of children with ASD (Renty & Roeyers,
2006). Research indicates that home=school collaboration yields superior
outcomes for children with disabilities; for example, parent involvement in
carrying out behavioral interventions for children with ASD has demon-
strated improved child outcomes (Bruder & Bricker, 1985; National Research
Council, 2001; Neef, 1995; Simpson, 2005). Family-centeredness in educa-
tional and therapeutic settings should emphasize parent–professional colla-
boration, individualized and responsive practices and supports, and
informed family decision making (Dunst, 2002).
One promising person- and family-centered approach that has been emer-
ging since the mid-1980s within educational settings is positive behavior support
(PBS), a practice that has its roots in applied behavior analysis (Koegel, Koegel, &
Dunlap, 1996). PBS takes a comprehensive, ecological approach to assessment
and intervention for a child in the broad context of family life (Koegel et al.,
1996). PBS strives to replace maladaptive behaviors with positive behaviors,
while respecting a person’s dignity, promoting individual strengths and abilities,
increasing opportunities, and enhancing the quality of life (Koegel et al., 1996).
Key stakeholders (e.g., teachers, administrators, specialists, and parents) collabo-
rate to plan and implement an individualized intervention that addresses pro-
blem behaviors in a way that fits contextually within the child’s and family’s
daily routines, values, and lifestyle to ensure a high likelihood of success (Albin,
Lucyshyn, Horner, & Flannery, 1996; Fox, Dunlap, & Buschbacher, 2000).
Finally, the last stage of diagnosis is complicated and mixed for parents.
Although most parents come to accept their child’s diagnosis, they continue
 484 E. M. Gabovitch and C. Curtin

to worry about the future and their child’s safety, which can perpetuate feelings
of frustration, confusion, and apprehension (Ivey, 2004; Mansell & Morris, 2004;
Schall, 2000). Nevertheless, parents often report feeling positive and joyful about
their child no matter how modest their gains (Fleischmann, 2004) and may
describe their own needs as synonymous with their children’s needs (Trigonaki,
2002). While acknowledging the ‘‘never-ending roller coaster’’ nature of ASD
(Schall, 2000), parents often accept it as a ‘‘lifelong journey’’ where growth,
empowerment, and hope occur as a result of addressing its challenges (Fleisch-
mann, 2004; Schall, 2000). Ultimately, parents see their child as a person first,
followed by the view that their child is a person with a disability.

BARRIERS TO FCC FOR CHILDREN WITH ASD

AND THEIR FAMILIES
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Although there is broad agreement that FCC reflects best practice and brings
about improved outcomes for children and families, numerous barriers con-
tinue to prevent its successful and universal implementation. At the indivi-
dual provider level barriers may include lack of provider knowledge about
how to practice FCC, poor or absent organizational support for implementing
FCC, provider perceptions that FCC may undermine professional identities or
authority, and belief systems that inhibit relationships reflecting the core
tenets of FCC (Galvin et al., 2000). Primary care practitioners may also feel
uncomfortable or unqualified to work with children with complex conditions
and may be unaware or uninformed about the array of community-based
services and how to access them (Brachlow et al., 2007; Heidgerken, Geffken,
Modi, & Frakey, 2005). Families of lower socioeconomic status and racial and
ethnic minority groups are less likely to receive FCC, suggesting that
disparities continue to exist in accessing services and in the provision of
culturally competent care (Strickland et al., 2004; Van Dyck et al., 2004).
Even when individual providers are willing and able to provide FCC,
inadequate financing presents a significant hurdle that has yet to be over-
come. Private and public health care plans do not provide adequate coverage
for the array of services these children and families require. Access to speci-
alty care can be problematic because health care plans often do not cover
subspecialists or subspecialty services, and referrals can be difficult to obtain.
Health care plans often require multiple levels of approvals and can be
difficult to coordinate (AAP, 2007; Strickland et al., 2004).
Family Partners, a collaborative project of Family Voices and Brandeis
University, conducted the Your Voice Counts survey (Wells et al., 2000) to
evaluate the health care experiences of over 2,000 families of CSHCN.
Families of children with ASD represented 9% of respondents and reported
their children to be in poorer health with more severe conditions than other
 Family-Centered Care for Children With Autism 485

CSHCN. Twenty percent paid out-of-pocket for mental health services, and
half reported they had problems with finding skilled and experienced mental
health clinicians and in coordinating services between the child’s mental
health provider and other clinicians. Parents of children with ASD were the
most dissatisfied with their health care plans and did not believe their needs
were well met by the present policies and procedures of health plans,
government plans, and community agencies (Wells et al., 2000).
Providing the comprehensive care that reflects the principles of FCC often
requires that practitioners spend extra time with children and families, time that
is not currently reimbursed by health insurance. Research has shown that
families often do not believe their providers spend needed time with them
(Brachlow et al., 2007), and physicians themselves feel frustrated with the lack
of time they have to address the complex medical and psychological needs of
CSHCN as well as dissatisfaction with the lack of assistance in providing case
coordination and transition services (Davidson, Silva, Sofis, Ganz, & Palfrey,
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2002). Thus the lack of FCC delivered by primary care providers may not only
reflect limitations in providers’ awareness or skills but rather the limitations of
an inadequately financed health care system.
Another major obstacle that families face is in trying to coordinate the
health care and educational systems (Dahle, 2003; Kohler, 1999). A coopera-
tive and communicative partnership between these systems working with the
family is critical for determining and delivering appropriate services, mini-
mizing misunderstanding, and promoting quality of care. However, medical
and educational systems’ delivery of care can often be inconsistent. For
example, the two systems do not diagnose ASD using the same criteria
and may make recommendations about each other’s services that may not
be carried out (Dahle, 2003). Health care professionals rely on the DSM-
IV-TR (American Psychiatric Association, 2000) to make diagnoses, whereas
educators must use their state’s own diagnostic and eligibility criteria for ser-
vice delivery under the Individuals with Disabilities Education Act. In some
cases in the educational system a child may carry a label of ‘‘developmental
delay’’ until age 9, only to be reclassified to ASD as the actual diagnosis bears
out. In such cases valuable time may be lost in providing appropriate inter-
ventions. Moreover, primary and specialty caregivers may not be included as
an integral part of the educational evaluation process. These system dispari-
ties also can pit the advice of these two helping professions against each
other, requiring that parents bridge the gap. Parents often must rely on their
own efforts to determine and secure appropriate services for the child, even
though they often feel unqualified or intimidated by this process. They may
have to resort to hiring a professional advocate or attorney to assist in place-
ment. Having to fight for services often results in delays of appropriate inter-
vention and, in the midst of coping with the demands of the child’s behaviors
and difficulties, intensifies parents’ distress and frustration.
 486 E. M. Gabovitch and C. Curtin

DISCUSSION

FCC is a far-reaching concept that extends from health care to education to

human services to mental health and beyond for children of all ages, abilities,
and health conditions. FCC is a friendly term that may imply ease of applica-
tion; however, literature has shown that helping professionals do not
uniformly or consistently practice FCC, and that there are numerous barriers
that can hinder its implementation. The lack of FCC is linked with lower par-
ent satisfaction and adjustment. The findings that parents of children with
ASD experience high levels of stress and that FCC has been shown to reduce
stress and increase parental well-being and satisfaction make a strong case
for the practice of FCC by professionals at all levels.
Research to date on FCC provides an emerging roadmap for delineating
what parents of CSHCN, and specifically parents of children with ASD, want
and need from care providers. Parents of children with ASD may not have
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formal knowledge of what defines FCC, but they are well able to define
whether their child’s and family’s needs are being met. The literature
reviewed here can serve to instruct primary care, developmental, mental
health, and allied health professionals in carrying out FCC. It is clear that
parents of children with ASD want providers to act quickly whenever a
concern is raised about a child’s development. They want professionals to
value their concerns, listen to them, and refer their child to specialists at
the first sign of a problem; they do not want to be told to ‘‘wait and see.’’
When discussing the child’s prognosis, parents want professionals to hold
out hope and think about the child and family in terms of their strengths.
Parents have an intense need for regular communications, and they place
high value on and trust in professionals who remain positive and
open-minded. Whether professionals become involved with the family at
the point of diagnosis or many years afterward, it is clear that services best
meet their needs when there is consistent and reliable communication,
sensitivity to family routines, greater access to and coordination of services,
better interagency collaboration, and family participation in interventions
and decision making about their children’s services (Becker-Cottrill,
McFarland, & Anderson, 2003; Kohler, 1999; Sperry et al., 1999).
FCC practices may also help assuage the anxiety and self-doubt that
families often experience when feeling compelled to search out a variety
of interventions and treatments, some of which may represent traditional
medicine or alternative treatments. Stories of parents who have provided
intensive around-the-clock treatment for their child that resulted in a cure
may prompt other families to question whether they are doing enough and
may perpetuate the fear that they are missing an important aspect of treat-
ment for their child. The practice of FCC is critical at this juncture by acting
as a sounding board for parents as they sift through the myriad services,
 Family-Centered Care for Children With Autism 487

resources, treatments, and ‘‘cures’’ that are often available or touted in books
and on the Internet. Families need support to pursue that which they believe
is in the best interests of their child but may benefit from a professional’s
assistance to weigh the costs and benefits of treatment options and to
provide them with information to help make informed decisions.
Health care professionals, especially those in primary care pediatric
practice, need training to recognize the early signs of ASD and to work with
families in ways that reflect FCC. The AAP has provided extensive guidelines
in an effort to provide pediatricians with the information and tools necessary
to identify, evaluate, and manage children with ASD (Johnson et al., 2007;
Myers et al., 2007). Medical schools need to incorporate training into their
curricula and provide students and residents with didactic and supervised
clinical experiences in working with children with ASD and their families,
including the art of sharing difficult diagnoses with parents and providing
resources, information, and support to parents after diagnosis. Likewise,
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training on FCC is also recommended for clinical specialists who may con-
duct in-depth evaluations and render confirmatory diagnoses and=or provide
follow-up care.
Some clinical and educational models have begun to emerge that
attempt to integrate FCC tenets into interventions. As noted, PBS is one
such model that incorporates the family as an integral member of the
treatment team (Albin et al., 1996; Becker-Cotrill et al., 2003; Fox et al.,
2000; Koegel et al., 1996). PBS uses evidence-based behavioral interven-
tion strategies within the context of family-centered planning and has
been shown to yield positive outcomes by reducing negative problem
behaviors, enhancing family communication and interactions, increasing
the safety of individuals and family members by reducing self-injurious
and aggressive behaviors, and promoting overall family quality of life
(Smith-Bird & Turnbull, 2005). PBS has promise for enhancing FCC
practices in educational settings by providing a structured approach to
planning, carrying out, and assessing interventions while simultaneously
involving families throughout the process. Training of educational
providers at all levels is key to the successful implementation of PBS
within educational settings (Minke & Anderson, 2005).
Demonstration projects that have sought to implement FCC for CSHCN
have yielded successful outcomes and provide models worthy of replication
that could be of benefit to children with ASD and their families. For example,
the Pediatric Alliance for Coordinated Care in Boston (Palfrey et al., 2004)
sought to operationalize the medical home concept within six pediatric
practices serving CSHCN. A nurse practitioner providing case management
services and a parent consultant offering peer support to families and
facilitation of referrals and community-based resource sharing were placed
in pediatric practices. Individualized health plans were devised for pediatric
 488 E. M. Gabovitch and C. Curtin

patients, and the health care professionals involved in the intervention

received continuing education. The project resulted in a number of positive
results for families and children, including parents’ perceptions that services
and referrals were easier to obtain and that communication and relationships
with professionals as well as their understanding of their child’s medical con-
dition were improved. Parents also missed fewer days of work, and children
had fewer hospitalizations. Another project, the Rhode Island Pediatric
Practice Enhancement Project (2005), placed trained parent consultants in
primary care and specialty care sites throughout the state to link families with
resources, to assist physicians to provide FCC, and to identify barriers to
coordinated care. Preliminary findings from this project suggest that with
appropriate services and supports in place, families can receive services
within the community rather than higher cost services from institutions and
that parents feel a greater sense of empowerment for managing their
children’s difficulties. Moreover, almost half (41%) of the children’s present-
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ing problems were resolved, including educational and behavioral health

challenges. Physicians involved in the project reported greater understanding
of their patients’ needs and the ancillary systems of care and had better
productivity overall.
The AAP’s National Center for Medical Home Initiatives (www.
[Link]) developed a medical home mentorship program
offering a network that provides resources and technical assistance for indi-
vidual practitioners, families, communities, and states to facilitate increased
access to medical homes for CSHCN. Mentorship teams work with primary
care physicians to create medical homes in community-based practices in
addition to providing training and disseminating resources and tools. The
National Center’s website provides state-by-state information about medical
home initiatives and resources.
Family-centered survey tools, such as the Family-Centered Behavior
Scale, objectively measure parents’ perceptions, satisfaction, and experiences
to know whether FCC is working in practice (Allen, Petr & Brown, 1995).
Given the challenges of delivering this standard of care, professionals also
need to assess their own perceptions and experiences. The Medical Home
Index can be used to evaluate a practice from both physician and family
perspectives as part of quality improvement (Center for Medical Home
Improvement, 2006). These tools can be used for CSHCN in general but
are flexible enough to target specific populations such as families of children
with ASD who may not receive FCC to the same extent as other populations
of CSHCN.
The health care field has advanced further than the education field in
implementing FCC practices. Although EI and preschool programs provide
services that view families as central to children’s well-being (Dunst, 2002),
at the elementary and secondary levels FCC is less likely to be practiced in
favor of models that are more professionally centered or family allied (Dunst,
 Family-Centered Care for Children With Autism 489

2002; McWilliam et al., 1999). Health care and education play equally critical
roles in caring for the child and supporting the family, yet both may make
recommendations about each other’s services that often cannot be imple-
mented (Dahle, 2003). Physicians are often in a position of recommending
educational programs that they themselves cannot offer. Likewise, educators
may suggest medication for certain children but cannot prescribe. Communi-
cation between these two systems is often lacking, leaving parents to try to
bridge the gap. Research and demonstration programs are needed on how
to address this issue, particularly as children age beyond the EI and pre-
school years. FCC delivered in both settings by educators, medical profes-
sionals, and specialists may provide the glue necessary to create continuity
of care for children and families.
Other challenges for families of children with ASD exist for which FCC
can play a critical role. The growing field of autism research and service has
also brought with it a number of controversies and a lack of consensus
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that add to the frustration that families often experience when raising a child
with ASD. For example, there are different ideological ‘‘camps’’ that are
split over where to invest research efforts toward a cause or a cure (i.e., gene-
tics vs. environmental influences such as toxins), over most effective treat-
ment methodologies (e.g., evidence-based behavioral approaches vs. other
approaches that lack significant research support), and over the efficacy
of complementary=alternative medicine (e.g., gluten-free=casein-free diets,
chelation therapy, vitamin supplementation) (Cuzzolin, et al., 2003; Mandell
& Novak, 2005). Based on the unique profile of each child with ASD and ques-
tions that remain about causes, cures, or treatments, parents may feel that
there is always one more door yet to be opened and may not rest until they
have explored all the options that exist. Perennial hope coupled with unceas-
ing second guessing poses challenges to families and professionals alike in
the provision of FCC, making it particularly important to keep the lines of
communication open by listening and engaging families in their values and
beliefs about these issues and assisting them to make informed choices.
Policy change at all levels must be adopted to ensure that FCC is carried
out within health care settings. Health care plans must provide practitioners
with reimbursement for time spent with families, collateral contacts with
other care providers, and the time it takes to identify and refer families to
community-based programs. Access to specialty services must be made
easier to obtain, and care coordination and case management need to be
reimbursable services. Without financing mechanisms in place, even if practi-
tioners are ready, willing, and able to provide FCC, these financial obstacles
will render FCC as a concept rather than a reality. To ensure that practitioners
are equipped to provide FCC, specific training at all levels of medical and
professional education is warranted.
Many of the studies in this review have limitations. First and foremost,
there is very little written about FCC practices and ASD specifically. Many
 490 E. M. Gabovitch and C. Curtin

articles about FCC do not include parents from minority or low-income

populations, and many more mothers are represented than fathers in most
of the studies. Many studies have small sample sizes and use qualitative
research methods and thus may not generalize to the population of children
with ASD and their families. Nonetheless, these studies begin to paint a pic-
ture of the needs of families of children with ASD. Additional research is
needed to understand better the experiences of parents, siblings, and
extended family members and to delineate the approaches to care that best
meet their needs and yield positive outcomes. Most studies about children
with ASD do not highlight FCC, but there is a great need to examine services
through this lens, not just at the critical event of diagnosis but across the
lifespan. Ongoing research is needed on the implementation of FCC in all
venues of care, especially in community-based practices (AAP, 2003b).
Studies are needed on whether and how FCC leads to better outcomes for
children with ASD and their families specifically and the elements that are
Downloaded By: [Gabovitch, Elaine M.] At: 16:44 28 July 2009

most critical at various junctures in the child’s life. As parents age and
children with ASD become adults, providing FCC in the context of patient-
centered care where the individual with ASD is acknowledged as a
self-determining individual needs to be addressed. Research to assess the
extent to which practitioners believe they are practicing FCC and the level
of agreement between their perceptions and families’ perceptions will lead
to identifying problems as well as solutions.

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