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ABSTRACT. This article examines parental advocacy for young children with disabilities using a
subset of data drawn from a larger exploratory and descriptive study on parental advocacy for children
with disabilities from birth to age 18 with a sample of 400 participants. Because this article focuses
on parents of children from birth to age 6, only parents (n = 76) meeting this criterion were selected.
Data were collected through an online survey, with a snowball sample generated through e-mail lists
and social media groups. The survey included questions on demographics, types of advocacy settings,
perceived effectiveness of advocacy efforts, and an example of a successful advocacy effort. Parental
advocacy was most common in schools, medical clinics, social services, and social media and involved
processes such as educating oneself about the childs condition and rights for services, educating others
including professionals, and making persistent efforts. These findings suggest advocacy on behalf of
children with disabilities starts early and is important from birth to age 6. Policy and social work practice
should help parents with support, knowledge, and skills to be effective advocates for their children.
Future research is recommended to explore the relationships between advocacy, empowerment, coping,
and resilience in parents of children with special needs.
KEYWORDS. Disability, children, early childhood, advocacy, parents
including relationship stress, financial difficulties, and mental and physical health problems
Amy Conley Wright, MSW, Ph.D., is a Senior Lecturer in Social Work at the University of Wollongong,
School of Health and Society, Wollongong, New South Wales, Australia.
Sarah Taylor, MSW, Ph.D., is an Assistant Professor at California State University-East Bay, Department
of Social Work, Hayward, CA.
Address correspondence to: Amy Conley Wright, MSW, Ph.D., Senior Lecturer in Social Work, School
of Health and Society, Faculty of Social Sciences, University of Wollongong, NSW, 2522 Australia. (E-mail:
acwright@uow.edu.au).
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Whether or not parents elect to become advocates for their children may be related to
their level of empowerment. Content analyses
of definitions of empowerment identify the key
concepts as self-efficacy, participation and collaboration, sense of control, meeting personal
needs, understanding the environment, access
to resources, and personal action (Dempsey &
Foreman, 1997; Dunst, Trivette, & LaPointe,
1992). The process of empowerment involves assessing personal power and taking control over
ones life. Related outcomes can include improved abilities related to autonomy, decision
making, communication, and advocacy skills
(Carr, 2011). It has been proposed that parents of
children with disabilities can go through a developmental process of empowerment starting with
identifying concerns about the childs development, then educating themselves and obtaining
services, and finally in some cases engaging in
efforts to assist other families and promote social change for other children with disabilities
(Koren, DeChillo, & Friesen, 1992). Selfefficacy, or the belief in ones abilities to achieve
desired outcomes (Bandura, 1994), may be a
particularly important aspect of the empowerment process. Parents feelings of self-control
about being able to secure supports and resources for their children have been found to be
positively correlated with their judgments about
their parenting abilities (Dunst, 1999). Parental
empowerment and its expression through advocacy may promote coping and resilience, especially in early childhood as parents adjust to the
often overwhelming changes associated with becoming a parent, while also facing the challenges
of caring for a child with special needs.
The exploratory research reported in this article is focused on the relationship between advocacy, self-efficacy, and empowerment. Whether
parents choose to engage in advocacy may be
influenced by their self-efficacy, or their belief
about their own abilities to serve as advocates
for their children. Parents may feel empowered through their active efforts at self-education
about their childrens disabilities, their attempts
to secure appropriate services, and for some,
their work to change public policies and social
programs. This study begins to explore parents
feelings of self-efficacy and empowerment as related to advocacy.
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Parents may become involved in advocacy after experiencing the distress of a diagnosis and
feeling the need to mobilize for services (Resch
et al., 2010). Others may become advocates after
becoming dissatisfied with the quality of their
childs education (Wang et al., 2004). Advocacy is a dynamic process that changes based
on the developmental needs of the individual
with special needs. Young children need educational and social opportunities, like early intervention services. When children enter school,
parents seek educational assessments and appropriate learning placements in the least restrictive environments. As children transition to secondary school, the focus of advocacy often shifts
to community integration and preparation for
adulthood, which may include supported or
independent employment and living (Alper,
Schloss, & Schloss, 1995).
Parents of young children with special needs
in the United States may receive support and
training to become advocates for their children if they participate in early intervention or
preschool programs funded through the Individuals with Disabilities Act (IDEA) Parts B and
C. Enhancing the capacity of families to meet
the special needs of the infants and toddlers
(Bailey et al., 2006, p. 229) is a specific goal
of the IDEA legislation, and preparing parents
to be skillful and effective advocates for their
children has been interpreted as a key part of
this goal. Evidence that programs have been
successful in meeting this goal includes parents demonstrating knowledge of their rights,
service options for their children, and what to
do if they feel needed services are not being
provided (Bailey et al., 2006). A nationally representative survey of primary caregivers of children around 3 years of age who were completing early intervention found that the majority
strongly agreed (65%) or agreed (31%) that they
knew how to advocate for their children, and
they strongly agreed (50%) or agreed (40%)
that they knew what to do if they felt that their
children were not receiving appropriate services
(Bailey et al., 2005).
While many parents of children with special
needs are actively engaged as advocates for their
children, they may encounter challenges and barriers that make this process difficult. These challenges and barriers include the psychological
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and emotional experience of advocacy and cultural orientations. Parents reactions to advocacy
may depend on their perceptions of this role.
Those who find it difficult can experience advocacy as a stressor (Mlawer, 1993; Nachshen
& Jamieson, 2000), whereas those who view
advocacy as a coping mechanism may experience a reduction in stress when they achieve
an advocacy success (Nachshen & Jamieson,
2000). Bennett, Deluca, and Bruns (1997) noted
that parents are often dismayed at having to
be such strong self-advocates to professionals
(p. 126). Parents can find that the role of advocate puts them in an uncomfortable adversarial
relationship with professionals (Bennett et al.,
1997; Trainor, 2010). Fear of being labeled as
trouble or being in the spotlight may hold some
parents back from advocacy (Resch et al., 2010).
This can be especially difficult for parents with
cultural orientations that highly esteem professionals; some cultures perceive professionals as
a source of unquestionable knowledge and parents may not expect to be treated as an equal and
collaborator in making decisions on behalf of
their child. Moreover, the level of assertiveness
needed for advocacy can conflict with cultural
norms (Kalyanpur, 2000).
Economic status and logistical issues can
also be a source of barriers to parental advocacy.
High-income parents may be able to meet their
childs needs for extra support by paying for
services, whereas lower-income parents generally must request these types of services from
schools and can be labeled as difficult (Coots,
1998). Yet those with middle income may be
in the most difficult situation, with challenges
paying out of pocket and fewer subsidies (Resch
et al., 2010). Lower-income families may have
more difficulty recognizing needs related to their
childrens development, a necessary antecedent
to advocacy, due to the presence of other unmet
needs in the family (Dunst, Trivette, & Deal,
1988, as cited by Mlawer, 1993). Finally, logistical issues can present challenges, particularly
for low-income families. Schools may schedule
meetings at short notice and at times that are
difficult for parents to attend (Harry, Allen, &
McLaughlin, 1995; Linan-Thompson & Jean,
1997), particularly for lower-income families
with less ability to change work schedules
METHODS
The study was reviewed and approved by both
authors university institutional review boards. A
20-min anonymous online survey was released
via SurveyMonkey (http://www.survey-monkey.
com) in October 2012. The online survey link
was sent to e-mail lists and Facebook groups for
parents of children with special needs, and individuals were encouraged to forward the link to
other parents. A snowball sampling strategy was
utilized because this population is difficult to locate (Babbie, 2010). Based on the geographic
distribution of study respondents, this snowballsampling strategy was effective in soliciting participants from 38 states and 6 countries. This
article reports on data from a subset of a larger
study related to parental advocacy. Although the
survey was completed by parents of children
ages birth to 18 years (n = 400), this article
only reports on the subset of the survey data
from parents of children ages birth to 6 years
(n = 76).
Measures
The survey completed by all participants, including parents of children ages birth to 6 years
old, consisted of 18 questions and was intended
to be completed in 15 min or less. It was designed to be as brief as possible to maximize
the number of responses, because it is hypothe-
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Sample Characteristics
Because the focus of this article is advocacy
by parents of children ages birth to 6 years, only
findings from this subsample of survey participants are reported. When compared with the total
sample of 400 participants who responded to the
survey, 76 were parents of children younger than
age 6. The geographic distribution of the 76 parents of children younger than age 6 was slightly
less diverse than in the larger study sample of
400 parents in that fewer were from outside of
the United States and only 24 states were represented, with about 28% being from California
(where the second author resides). The remainder of the data presented here, including sample characteristics, focuses exclusively on the
subsample of 76 parents of children younger
than age 6.
The survey asked about race/ethnicity using an open-ended question: Please describe
your race/ethnicity. The participants were overwhelmingly European American/White (79%),
with the remainder being Latino American
(15%) and less than 1% being Asian American
or Multiple Races/Ethnicities. Five participants
declined to state their racial/ethnic identity.
Nearly all of the parents (95%) were female,
and 91% were married or in a domestic partnership. Close to one third (32%) reported an
income of $50,000 to $74,999. More than a quarter of the sample (27%) had an income of less
than $50,000, and slightly more than 40% had
an income greater than $74,999. The majority of
participants in this sample were employed. Approximately one third (32%) of the participants
reported working 40 or more hours per week,
and 26% reported working 1 hr to 39 hr per
week. This sample is more affluent than the U.S.
population of families in general who have children with disabilities, of whom approximately
30% are living in poverty (Murphey, Cooper, &
Moore, 2012).
An overwhelming majority (90%) of the parents reported having only one child with special
needs. A little more than half (55%) of the parents reported having a child between the ages
of 4 and 6 years old. Approximately 40% had a
child between the ages of 2 and 4. The remainder
had a child younger than age 2.
Data Analysis
Data analysis for the closed-ended questions was conducted using descriptive statistics
through SurveyMonkey. Data from the openended question were analyzed using qualitative
grounded theory methods, such as constant comparison (Dye, Schatz, Rosenberg, & Coleman,
2000). Efforts to ensure the reliability and validity of the analysis included assessing interrater
reliability of the teams coding work and peer
debriefing (Miles & Huberman, 1994). Interrater
reliability was assessed through numerous conversations between the coauthors, who independently developed broad categories for analysis
of the data. A detailed coding scheme was not
necessary for analysis of participants relatively
brief responses to the one open-ended question
in the survey. The authors shared their broad
categories and reached agreement on which categories to use in analysis. The authors met
by phone and via e-mail exchanges to address
coding-related questions as they arose. Peer debriefing was done through conversations with
academic colleagues and parents of children
with special needs. These conversations centered
on preliminary findings, areas of potential focus
for additional analysis, and suggestions for future research.
QUANTITATIVE FINDINGS
The focal point of the survey was on parents
advocacy activities. The closed-ended questions
were primarily intended to provide information
about the settings in which parents engaged in
advocacy activities and their perceptions of advocacys effectiveness (in response to Research
Questions 1 and 2). Table 1 shows the settings in
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Schools
Medical clinics
Social services
Churches
Rallies/community
events
Politicians offices
Social media
Not
Applicable
71.2
72.6
57.5
21.9
13.7
16.4
11.9
23.2
61.7
73.3
1.5
3.0
1.8
0.0
0.0
6.0
7.4
5.3
0.0
0.0
13.4
9.0
16.1
6.4
11.1
43.3
50.8
44.6
21.2
11.1
19.4
17.9
9.0
10.6
4.4
21.9
50.7
61.7
30.2
4.3
2.0
0.0
5.7
17.0
15.1
12.8
34.0
4.3
13.2
QUALITATIVE FINDINGS
To address Research Question 3 about
whether there are basic processes related to advocacy across different settings and what those
processes are, the survey asked parents to provide a short response to an open-ended question about their advocacy in a setting that the
participant described as effective or highly effective. The participants were asked to describe,
in as much detail as possible, how they became
involved, with whom (if anyone) they collaborated, what happened as a result of the advocacy,
and how they felt about the advocacy effort. This
Totally
Neither Ineffective
Highly
Ineffective Ineffective
nor Effective
Effective Effective
Advocacy in Schools
Fifteen parents described their advocacy in
schools for their children. Parents discussed their
efforts to gain access to occupational, speech,
physical, and other needed therapies, as well as
to secure appropriate classroom placements. Parents employed three main techniques to advocate
for their children: a) educating, building rapport,
and meeting with teachers and principals; b) becoming familiar with special education law; and
c) collaborating with professionals outside the
school and/or bringing advocates and supporters
to individualized education plan (IEP) meetings.
Though parents described their efforts as successful, several expressed frustration about the
time it takes to be an effective advocate and the
stress they experience.
Parents commented on their efforts to build
positive relationships with school staff and to
educate them about their childs needs. One parent wrote:
I work hard to be appreciative of the work
that school staff are already doing and help
them to know how they have helped my
son. I talk of positive changes and growth
that I have seen in my son. I am polite
but firm. Another said, "In her school, I
went in and talked with them, taught them
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Community Settings
Four parents described advocating for their
child in other community settings. Three of these
were churches, and one was a day-care program.
Two of the parents who advocated in churches
for their child were concerned about allergens
in the snacks being provided. One parent was
able to alert church childcare providers to her
childs allergies by having her child wear a special name tag that reminded teachers of what
her child could not eat. Another parent spoke
with her churchs director and was successful in
requesting that no snacks be served while children were in care. Another parent was concerned
about her child being able to participate in her
churchs childrens program and was successful
in working with the ministers to receive necessary accommodations.
The parent who advocated for her child in
a day-care setting experienced mixed success.
She wanted her child to attend a day-care program with typically developing children, but the
child needed a one-on-one aide. She requested
assistance from her medical insurance company,
but they initially denied the request. After hiring a lawyer, the request was approved, but she
had difficulty finding a reliable aide. Eventually,
DISCUSSION
The purpose of this exploratory, descriptive
study was to learn more about parental advocacy for children with special needs, including
the settings in which parents advocate, perceived
effectiveness of advocacy efforts, and advocacy
processes. The study was informed by Banduras
(1994) concept of self-efficacy, in which individuals perceived ability to influence their environment and circumstances is experienced as
empowering. Much of the literature on parents
of young children with special needs has focused
on the challenges of raising a child with a disability. Without sufficient exploration of parents
roles as active change agents in their childrens
lives, there is a risk for viewing parents as passive
and for losing an opportunity to collaborate with
parents in supporting their childrens healthy development.
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support other similar families. A study of parentto-parent mentoring programs in five states revealed that these programs allowed families to
share and gain practical information that made
them feel better able to cope with challenges
and feel more positive about their family and
personal circumstances, though it did not identify significant improvement in perceived empowerment. Such programs may fill a policy
niche in providing parenting support to parents of children with disabilities (Singer et al.,
1999).
The findings also raise a question about the
role of professionals working with families of
children with special needs and how they can
promote empowerment of parents and ensure
that children receive the services they need.
Much of the burden for ensuring that children
receive appropriate services falls upon parents.
As one parent pointed out, this creates inherent
inequality because so many parents dont have
the time to do this, and it is not fair that some
children get the services they are entitled to and
others dont. Parents noted that they felt the
need to educate professionals, suggesting that
they are assuming responsibilities for continuing
education that lie with the professionals themselves. In addition, the relentless need to advocate for ones child with professionals in education, health, and social services settings leads to
parental exhaustion and frustration.
How much of the extra work done by parents should be assumed as best practice responsibilities by professionals? The empowerment
role in social work suggests that social workers have a responsibility to promote client empowerment: a process through which clients
obtain resourcespersonal, organizational, and
communitythat enable them to gain greater
control over their environment and attain their
aspirations (Hasenfeld, 1987, p. 479). The
1999 revisions to IDEA recognize the role of
school social workers in particular to promote
a homeschoolcommunity approach to serving children with disabilities, which can include connecting families to parent organizations and educating parents about their legal
rights to accommodations (Altshuler & Kopels,
2003). Ways that social workers can support parents of children with special needs in terms of
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CONCLUSION AND
RECOMMENDATIONS FOR FUTURE
RESEARCH
This article reports findings on parental advocacy for young children with special needs
and explores the settings in which parents advocate for their young children, their perceived
effectiveness in different settings, and whether
there are basic processes related to advocacy
across different settings. The most frequent settings of parental advocacy were at the micro
level and included schools, medical clinics, and
social services. Parents rated the majority of
these efforts as effective or very effective. Parents more rarely engaged in macro advocacy
in settings such as politicians offices and rallies or community events, and they perceived
these efforts as less effective. Social media was
another setting in which parents were active and
reported overall perceived effectiveness. Across
these settings, parents engaged in the same basic
processes of educating themselves about their
childrens needs and rights; educating and sensitizing others, including professionals and community members; and remaining focused in their
efforts to achieve the goals of their advocacy.
Future research is needed to capture the more
complex relationships between advocacy, coping, empowerment, and resilience in parents of
children with special needs. There is a second
part of this study that begins to explore these
topics, with the hope of developing a greater
understanding of these relationships. After completing the survey, participants were invited to
volunteer for an in-depth interview about their
advocacy experiences. Almost 100 parents volunteered to be interviewed. In-depth interviews
are currently being conducted. These interviews
range in length from 20 min to 90 min and include detailed questions about effective advocacy efforts, advocacy efforts that did not seem
effective, and factors the parents associate with
effective advocacy, including personal characteristics, in-person and online social support networks, and personal resources. Findings for this
second portion of the study will be released
sometime in the next year.
It is also important to compare the experiences of the parents in this subsample, who have
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