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Journal of Policy and Practice in Intellectual Disabilities Volume 10 Number 1 pp 7178 March 2013

Advocacy for the Abandonados: Harnessing Cultural Beliefs for Latino Families and Their Children With Intellectual Disabilities
Shana R. Cohen University of California, Riverside, CA, USA

Abstract Community services and supports for children with intellectual disabilities (ID) can ameliorate the negative effects of caregiving and enhance child outcomes. For example, in Central and South America, many children with disabilities are institutionalized with inadequate sanitation and medical care. In the United States, certain demographic factors (e.g., poverty, limited access to healthcare, language barriers, and immigrant status) contribute to the underdiagnosis and poor-quality treatment of Latino families and their children with ID, thus limiting their access to effective community and family supports. This paper utilizes a cultural lens to target advocacy as a mechanism for improving access to local community services and social supports for children with ID. The author examines specic cultural beliefs regarding family support and child development among Latino families, and provides policy recommendations derived from these cultural beliefs that aim to enhance advocacy efforts among Latino caregivers. The author notes that effective advocacy, at the family and at the policy level, can be a useful tool to access crucial community and social supports that enhance child and family outcomes. Keywords: advocacy, culture, intellectual disabilities, Latino families

Research indicates that social and community supports in the form of family-centered services ameliorate the negative effects of caring for a child with a developmental delay or intellectual disabilities (ID) and more importantly enhance child and family outcomes (Bailey, Raspa, & Fox, 2012; Kuo, Mac Bird, & Tilford, 2011). Many Latino families in the United States and in South and Central America lack access to these social and community supports (Lubbock & Stephenson, 2008; Rosenthal, Jehn, & Galvn, 2010; Wallace & Gutirrez, 2005). In certain South and Central American countries (e.g., Mexico, Paraguay, and Peru), many children with ID are still institutionalized with inadequate sanitation and medical care, thus violating their human rights and limiting their access to family and community supports (Hillman, 2005; Hillman et al., 2004; Rosenthal et al., 2010). In the United States, demographic factors (e.g., poverty, low levels of education, and limited access to healthcare) contribute to the underdiagnosis and poor-quality treatment of Latino families and their children with ID, and this can
Received October 2, 2012; accepted January 3, 2013 Correspondence: Shana R. Cohen, PhD, SEARCH Family Autism Resources Center, Graduate School of Education, University of California, Riverside, CA 92521 USA. Tel: +1 951 827 3849; E-mail: shana.cohen@ucr.edu Editors Note: This paper is an updated version of a presentation given as part of the special honors S. Raffaele Tosinvest JPPID Symposium for Young Investigator Awardees at the 13th Quadrennial Congress of the International Association for the Scientic Study of Intellectual and Developmental Disabilities in Halifax, Nova Scotia, Canada, on July 11, 2012.

potentially limit their access to effective community and family supports (Begeer, El Bouk, Boussaid, Terwogt & Koot, 2009; Kreps, 2006; Mandell, Listerud, Levy, & Pinto-Martin, 2002; Mandell & Novak, 2005). Mental health advocacyinformation that is used in a deliberate way to create change in policies and promote the psychological needs and rights of individuals with IDmay be an effective mechanism to attain access to social and community supports for families and their children with ID (Trainor, 2010; World Health Organization, 2009). Effective advocacy gives individuals the power to inuence lawmakers to improve government policies about mental health, with the aim of improving overall mental health services (Trainor, 2010). In the United States, the structure of the special education service system requires parents to advocate for their children in order to receive critical interventions to optimize child outcomes. Advocating for ones child might be particularly challenging for families who lack the social and economic resources necessary to be an effective advocate. Some Latino families, particularly immigrants, are at a distinct disadvantage in advocating for their children with ID given their lack of familiarity with the special education, and social service systems, and the existence of barriers such as language, poverty, and discrimination (Begeer et al., 2009; Mandell et al., 2002). Certain culturally situated beliefs pertaining to family support and child development may be useful in better understanding the most effective ways to enhance advocacy efforts among Latino parents who care for a child with ID.

2013 International Association for the Scientic Study of Intellectual Disabilities and Wiley Periodicals, Inc.

Journal of Policy and Practice in Intellectual Disabilities S. R. Cohen Advocacy for the Abandonados

Volume 10 Number 1 March 2013

There are two specic aims for this paper: (1) to discuss specic cultural beliefs regarding family support and child development for some Latino families; and (2) to develop these cultural beliefs into tangible tools that enhance advocacy efforts among Latino caregivers. The ultimate aim is for Latino families in the United States and in the rest of the Americas to have access to effective and empirically sound services.

SOCIAL SUPPORT FOR FAMILIES WHO CARE FOR A CHILD WITH ID Social support may be a useful tool to enhance advocacy efforts among some Latino caregivers as it has been shown to enhance self-efcacy and empowerment among non-Latino parents who care for a child with ID and reduce the effects of stress and depression on families (Boyd, 2002; Dunst, Trivette, & Jodry, 1997; Horton & Wallander, 2001; Leung & Erich, 2002; Manuel, Naughton, Balkrishnan, Smith, & Koman, 2003). Family support is particularly important for some Latino mothers who care for a child with a disability (Aranda & Knight, 1997; Correa, Bonilla, & Reyes-MacPherson, 2010; Keefe, Padilla, & Carlos, 1979; Magaa, 1999; Magaa, Schwartz, Rubert, Szapocznik, & Floyd, 2006; Sabogal, Marn, Otero-Sabogal, Marn, & Perez-Stable, 1987) as it has been related to less stress, greater access to health information, and improved maternal psychosocial health (e.g., enhanced self-efcacy). When a mother has an elevated sense of parenting self-efcacy, she may feel that she knows which specic supports and services her child needs to attain optimal outcomes, and she may feel more condent in attaining those supports for her child, thus potentially enhancing her advocacy efforts. Researchers must learn about and understand the existing social resources of Latino families that may enhance advocacy efforts, and work with families to adapt supports and services to be family centered and culturally relevant to this group.

address their childs needs (Bailey et al., 1999). Some Latino families have reported several unmet needs being addressed by formal supports and services (e.g., speech therapy, transportation services), yet informal supports (e.g., support groups that provide emotional support from other parents in similar circumstances) have proven useful and effective for Latino families (Magaa, Seltzer, & Krauss, 2002). Others have found that Latino parents experience formal support as being just as satisfactory as familial support (Bailey et al., 1999; Steinberg, Davila, Collazo, Loew, & Fischgrund, 1997). At least one study found that access to formal sources of support (e.g., childs teachers and therapists) is associated with lower rates of depression in this population (Blacher, Shapiro, Lopez, Diaz, & Fusco, 1997). Other research shows that Latino families are often not aware of the types of services that are necessary for their child with ID (Bailey et al., 1999). Of those families that are aware of the types of services that their child needs, most were primarily dissatised with those services (Bailey et al., 1999). Those families who were dissatised with their services were so for the following reasons: (1) poor communication with service providers (doctors, teachers) due to language differences; (2) a lack of information about their childs disability or the services that are available; and (3) feelings of discrimination (Bailey et al., 1999; Shapiro, Monz, Rueda, Gomez, & Blacher, 2004). Other studies have found similar results, in that families have felt an overwhelming lack of support and access to information from professional agencies, and they resented the need to engage in extensive advocacy to hold professionals accountable for the services that were required by law (Garca, Prez & Ortiz, 2000; Garwick, Kohrman, Wolman, & Blum, 1998; Rehm, 2003). This disenfranchisement has been termed alienated advocacy (Shapiro, Monz, Rueda, Gomez, & Blacher, 2004). LATINO FAMILIES AND SUPPORT OUTSIDE THE UNITED STATES Research indicates a pervasive mistreatment of children with ID in Central and South American countries as many children with ID are institutionalized because there are no social and community supports available for families to care for these children in their homes (Frey & Temple, 2008). For example, although the Mexican government recognizes the human rights of people with disabilities (Rosenthal et al., 2010), it continues to separate some children with ID from their communities and place them in poorly run institutions without appropriate sanitation or medical care, thus violating their human rights. Due to the inadequate oversight in these institutions, many of these children have disappeared, without their parents knowledge, being forced to become victims of sex trafcking or part of the forced labor market (Rosenthal et al., 2010). Once a world leader in recognizing the human rights of children with disabilities, it would appear that the Mexican government has essentially abandoned its children with disabilities, neglecting to provide them with the necessary supports and services to enhance their outcomes. The lack of community services and supports for families to keep children with ID at home creates a high risk of exploitation and abuse in these Mexican institutions and leads to the violation of individuals rights, according to the International

LATINO FAMILIES AND SUPPORT IN THE UNITED STATES Growing populations of Latino children are being raised by immigrant, single parents who have less than a high school education, speak Spanish, and live in poverty (Fry & Passel, 2009). Considering the overrepresentation of low-income children enrolled in special education services in the United States (Hebbeler et al., 2007), researchers must examine how Latino immigrant families perceive and utilize the support that is available to them; how their cultural beliefs about family, child development, and education relate to their perceptions of support; and determine how best to incorporate these cultural beliefs into more meaningful services and supports for these families. Findings to date provide a mixed picture regarding the extent to which Latino immigrant families in the United States feel a sense of appreciation for the support they receive from professionals in addressing the needs of their children. Some studies nd that Latino parents are likely to view members of the formal support network as having the specialized expertise required to
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Journal of Policy and Practice in Intellectual Disabilities S. R. Cohen Advocacy for the Abandonados

Volume 10 Number 1 March 2013

Council on Disabilities, the American Convention on Human Rights, and the International Covenant on Civil and Political Rights (American Convention on Human Rights, 1969; International Covenant on Civil and Political Rights, 1966). A major factor relating to this exploitation and abuse in Mexico is the countrys lack of community-based services charged with providing effective social and professional supports necessary for individuals with disabilities to live within their communities (Rosenthal et al., 2010). What is particularly disturbing is that a mother, who may care deeply for her child and wants to learn how to effectively care for that child, is forced to institutionalize the child due to limited nancial resources and a lack of accessible social and professional services within her community (Rosenthal et al., 2010). Instead of investing their limited resources in the creation of community-based supports and services to meet the needs of these families, the Mexican government is building several new institutional facilities to house children and adults with disabilities across the country (e.g., in Mexico City, Jalisco, Oaxaca, Puebla, and Veracruz), further segregating more individuals with ID from society (Rosenthal et al., 2010). Peru has had a similar history of neglecting the needs of children with ID and their families and not complying with Peruvian federal and state laws protecting the rights of individuals with disabilities and their families. The Mental Disability Rights International Committee found numerous human rights violations committed against children and adults with disabilities, including: inhuman and degrading treatment, failure to attain informed consent for medical procedures, and discrimination in the provision of social services, each of which violated the right of each individual to actively participate in his or her community (Hillman et al., 2004). The result of this mistreatment has left adults and children with ID abandoned and segregated from their communities, and unable to participate in the economic and social life of their communities. Although many individuals with disabilities may be capable of holding a job and maintaining a certain level of independence, they are unable to do so without the essential support systems within their communities (Hillman, 2005). They are, in effect, the abandonados. In order to more effectively serve children with ID and their families, we must provide families with access to individualized and culturally appropriate social and community resources, and empirically sound interventions that capitalize upon families strengths and promote parents advocacy efforts (Mandell et al., 2002). Framed within a support paradigm, this paper identies specic cultural beliefs about family and child development that may enhance advocacy efforts on two levels. First, cultural beliefs about family may enhance the effectiveness of an advocate, as family support has been shown to enhance caregivers psychological adjustment particularly within the Latino population (Aranda & Knight, 1997; Sabogal et al., 1987). Also, self-efcacy is a key trait for an effective advocate, particularly one in a position to persuade policymakers to change policy (Banach, Iudice, Conway, & Couce, 2010). Second, cultural beliefs about child development may focus on the content, or the causes of the advocacy, as many Latino families may value certain developmental domains differently than non-Latino, European-heritage families. Ultimately, it is important to identify the unique social resources of some Latino families that may be used to promote

parents as advocates for their children, and make empirically sound services more accessible to them. LATINO FAMILIES CULTURAL BELIEFS OF FAMILY SUPPORT Historically used by cultural anthropologists to guide ones understanding of the world, cultural modelsthat is, tacit assumptions about various aspects of the world, including beliefs about disability, family, and educationare widely shared by members of a society (Quinn & Holland, 1987). Parents may use these cultural models as guides to make sense of and act within different situations, set goals for children, manipulate the environment, and evaluate the behavior of children (DAndrade, 1992). The identication of certain cultural models pertaining to Latino family cohesiveness and individual family obligations may be useful for understanding the value of informal support in developing more effective advocates within this population (Correa et al., 2010; Magaa, 1999). Thus, there is a need to highlight attitudinal familism, the belief in the commitment of family members to their family relationships. This belief emphasizes the importance of family closeness, family obligation to assisting its members, and family member responsibility for the well-being of the entire family (Cauce & Domenech-Rodrguez, 2002). Steidel and Contreras (2003) dened four components that make up attitudinal familism and used these components to develop a scale to formally measure it. The rst component is the belief that family comes before the individual. According to this notion, individuals should sacrice their own desires and needs for those of the family, because the outcomes of the family are most important. The second component of attitudinal familism is the concept of family interconnectedness. The premise is that family members must keep a close, emotional and physical bond with other family members although they may be independent in other aspects of their life. The third component of attitudinal familism involves the belief in familial support in times of need. Family members should expect and provide support when they perceive other family members are experiencing difcult circumstances. The fourth component of attitudinal familism is the belief in family honor. According to this idea, family members must protect the family name and the familys reputation (Steidel & Contreras, 2003). In studies that have compared the levels of attitudinal familism between Latinos and non-Latinos, Latinos were signicantly more likely to endorse attitudinal familism than non-Latinos (Cortes, 1995; Sabogal et al., 1987), and this strong endorsement of familism was related to the amount of familial support that Latino mothers perceived to be available to them (Almeida, Molnar, Kawachi, & Subramanian, 2009; Magaa, 1999). In contrast, other studies showed that endorsing familism may increase distress for caregivers, causing caregivers to feel obligated to care for a loved one rather than feel positively supported in this responsibility (Losada et al., 2010). This concept of attitudinal familism, which is partly dened by individuals physically and emotionally supporting their family members in times of need, may help explain why Latino
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families expect family support and feel more condent with this support. This can result in enhanced self-efcacy, allowing caregivers to become qualitatively better advocates. Identifying the unique cultural models about family support that may be associated with effective advocacy efforts is a rst step toward developing policy recommendations that can enhance access to effective supports and services for Latino children with ID and their families. In addition, it is important to identify specic cultural models about child development that may focus the content, or the causes of the advocacy.

LATINO FAMILIES CULTURAL BELIEFS ABOUT CHILD DEVELOPMENT Past research has illustrated how some Latino families have distinct beliefs about disability and child development that may be used to focus the content of their advocacy efforts. Studies examining how parents socialize their child with disabilities through their own childrearing beliefs and customs may be connected to the literature on typical child development dening bien educado (proper comportment) (Holloway, Fuller, Rambaud, & Eggers-Pirola, 1997; Reese, Balzano, Gallimore, & Goldenberg, 1995; Valds, 1996). For children in many Mexican American homes, bien educado reects the strong moral standing and highly valued social comportment (e.g., respect for elders) that parents expect from their children (Valds, 1996). With regard to children with disabilities, Gannotti, Handwerker, Groce, and Cruz (2001) similarly identied the importance of the childs social demeanor, (e.g., the child must be dressed meticulously, be clean, and exhibit respectful behaviors), group belonging, acceptance, and gaining respect and reputation from ones social role as a parent (Gannotti et al., 2001; Skinner, Bailey, Correa, & Rodriguez, 1999). In another study examining how parents values regarding childrearing differed if the parent had a child with a disability as compared with having a child without a disability, Arcia, Reyes-Blanes, and Vazquez-Montilla (2000) found that parents in their study expected many of the same behaviors for children with disabilities as did parents of typically developing children. Parents expected children to be respectful and responsible, to have a sense of right and wrong, to be close to their family, and to be curious (preguntn) (Arcia et al., 2000). Other studies identied distinct concepts pertaining to child development for families who care for a child with a disability. For example, Gannotti et al. (2001) examined parents beliefs about development and found that Latino families with children with disabilities have notions of child development that differ from those of non-Latino, European-heritage families. Many Latino parents endorsed the notion of aoar (pampering, nurturing); parents must create a smooth, pleasant, and social environment for their children, eliminating cause for emotional conict and protecting their children from illness or injury (Gannotti et al., 2001). In the case of a child with ID, this may mean that due to certain social perceptions of proper behavior in this community, some developmental milestones are not reached until the child is older. For example, in order for children to avoid spilling their drink in public, parents allow
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children to use a bottle until the child is 5 years old (Gannotti et al., 2001). Latino parents who adhere to different notions of child development may have different expectations about the skills they want their child to learn from service providers. For example, Latino parents may endorse this notion of aoar (pampering, nurturing), and they may not value the development of independence and the mastery of self-help skillsas a practitioner who was trained in the United States would, or as would an educator who might follow a specic curriculum. Thus, advocates for Latino families may choose to use this information to change certain policies regarding the development of family goals and priorities to be incorporated into the curriculum for young children with disabilities. Whereas interventionists in the United States may be interested in promoting self-help skills for young children with disabilities, Latino advocates may choose to focus on developing curriculum to enhance childrens socialemotional skills (i.e., respectful behavior, proper comportment, and manners), to promote the notion of bien educado. Thus, targeted advocacy efforts should consider the developmental domains that are important to Latino families and their children with disabilities. The following section identies how cultural models about family support (i.e., familism) may enhance advocacy efforts among Latino caregivers.

UNDERSTANDING THE QUALITIES OF AN EFFECTIVE ADVOCATE In order to be an effective advocate, an individual must have certain skills: (1) knowledge of the childs disability (e.g., the behaviors that exemplify the disability, most effective and evidence-based treatments for the disability); (2) knowledge of the key players involved in changing policies and practices; (3) knowledge of the rights and responsibilities one has as a parent; and (4) clear communication skills (e.g., the ability to clearly communicate the problem, and possible solutions to the problem) (Jansson, 2008; Pacer Center, 2011). Thus, advocacy is enhanced by knowledge of the childs disability, the service system, and the individuals rights as a parent. Although research shows that having knowledge enhances advocacy efforts, it is not clear from existing research how knowledge enhances advocacy efforts. In this paper, it is suggested that knowledge improves parenting self-efcacy, thus enhancing parents advocacy efforts.

THE RELATION BETWEEN KNOWLEDGE AND SELF-EFFICACY Self-efcacy relates to an individuals judgments about how well he or she can act in a given situation (Bandura, 1982). Parenting self-efcacy refers to an individuals beliefs about whether he or she can competently perform his or her role as a parent (Bandura, 1982). Parents with a high sense of self-efcacy consider childrearing problems a challenge, whereas parents with a low sense of self-efcacy are threatened by such challenges (Bandura, 1982; 1989). In the United States, parenting self-efcacy has emerged as a powerful predictor of specic

Journal of Policy and Practice in Intellectual Disabilities S. R. Cohen Advocacy for the Abandonados

Volume 10 Number 1 March 2013

parenting practices and as a mediator of certain parent (e.g., maternal depression) and child outcomes (e.g., child temperament) (Coleman & Karraker, 1998). Parents with a high sense of self-efcacy feel less stressed, more condent in their role as a parent, more knowledgeable about child development, and may exhibit resilient behaviors when facing a childrearing challenge (Coleman & Karraker, 1998; Hess, Teti, & Hussey-Gardner, 2004; Suzuki, Holloway, Yamamoto, & Mindnich, 2009; Teti & Gelfand, 1991). Thus, if a parent has a high sense of parenting selfefcacy, he or she may be a more effective advocate.

education plans (IEPs). For example, a mother may identify specic expectations about how she wants her daughter to behave when she interacts with her grandparents. The IEP team that is open to accepting these beliefs may incorporate a learning objective that targets these respectful behaviors. Thus, understanding how culturally situated beliefs about family may enhance advocacy efforts will allow Latino caregivers to promote causes that they care about.

UNDERSTANDING THE CONTENT OF THE ADVOCACY THE RELATION BETWEEN CULTURAL MODELS AND EFFECTIVE ADVOCACY One study recently examined the relationship between parents knowledge of child development and parenting selfefcacy of mothers with high-risk infants. When mothers knowledge of child development was high, their parenting selfefcacy was high; but when mothers knowledge of child development was low, their self-efcacy was also low (Hess et al., 2004). If a parent who cares for a child with ID knows about key disability-related domains relevant to the childs optimal development (e.g., physical, cognitive, and social characteristics; educational goals), he or she may have the self-efcacy to be an effective advocate (Jansson, 2008). For Latino families, culturally situated beliefs about family, child development, and education will likely inform this relationship between parenting self-efcacy and advocacy. Perceptions of child development are not universal; rather, they are informed by specic cultural beliefs and how the individual (i.e., the parent) interprets them. In addition, culturally situated beliefs about family (i.e., familism) may improve a parents sense of self-efcacy and presumably may enhance advocacy efforts. However, this scenario is hypothetical; the dearth of research examining how culturally situated beliefs inform the relationship between parenting self-efcacy and advocacy has not yet been empirically validated. Based on the literature that does identify and describe the culturally relevant domains of child development, family, and education that are important for some Latino families, we can capitalize upon their unique social resources. Notably, caregivers beliefs about family support can be harnessed to help build communities that support advocacy. The goal would be to allow Latino caregivers to feel more engaged and passionate about the services they receive and more interested in adapting those services to meet their needs and the needs of their child. Specic interventions may enhance self-efcacy and create more effective advocates, include providing parents with access to the relevant knowledge pertaining to advocacy. In order for this knowledge to be accessible to families, it must include a teacher or a group of teachers from the community that can communicate with parents in their preferred language. These community leaders must provide learning material in a variety of formats (e.g., webinars, community speaker series, videos) in order to account for differing education and literacy levels. Advocacy efforts extend to parents active participation in the development of goals for inclusion in their childs individual Effective advocates, who are knowledgeable about the childs disability, the service system, the key personnel who can change the system, and their parental rights, also may have certain expectations about their childs developmental outcomes. These expectations may be related to cultural beliefs about child development. Although these beliefs are likely not endorsed by all Latinos, they may be useful to understand how to engage parents in meaningful discussions that target advocacy efforts around their priorities and expectations for their childs outcomes. Understanding how culturally situated beliefs about child development may relate to these outcomes is a way to focus advocacy efforts. Certain culturally situated beliefs can be identied about child development that may be important to Latino caregivers. For example, parents who have developmental expectations that their child be bien educado may be more motivated and willing to advocate for community services and interventions that teach the child with ID and the family how to minimize a public tantrum when the childs regular routine for grocery shopping with his mother is disrupted. These beliefs may also alter traditional notions of child development that have been promoted in special education. For example, many service providers target some type of independence or self-help goals with most children with ID. However, if parent advocates passionately believe in the notion of aoar, they may be less interested in promoting independence, or self-help skills (see Table 1). Although there appears to be a need for advocates to promote community-based services within the Latino community, there is some evidence of effective advocacy on behalf of children with disabilities both in the United States and in South and Central America. In the United States, a study by Skinner, Matthews, and Burton (2005) described the case of one Latino mother who actively participated in activities to help her daughter with a disability to meet her developmental milestones. In their mixed method approach, the authors examined how low-income families organized and constructed developmental opportunities for their children with disabilities within a larger sociocultural context. In this case, Rosa was a Mexican-heritage mother who engaged in various activities to promote her daughters development. She actively sought out a number of service providers for her daughter including a nutritionist, a speech therapist, and an occupational therapist. She also conducted intervention activities with her daughter on a daily basis, working to develop her speech and language abilities, and her communication skills (Skinner et al., 2005). Although this mother had limited economic and social resources, her
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Journal of Policy and Practice in Intellectual Disabilities S. R. Cohen Advocacy for the Abandonados

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TABLE 1 Culturally situated beliefs about family and child development in the presence of ID
How might it relate to child development outcomes?

Culturally situated belief

Denition of belief

Operationalization of belief

Bien Educado (Reese et al., 1995; Valds, 1996)

Aoar (Gannotti et al., 2001)

Familismo (Steidel & Contreras, 2003)

The child must display proper comportment, and be well-mannered. The child must exhibit respectful behaviors. Parents are responsible for creating a smooth, pleasant, and social environment for their child, eliminating cause for emotional conict. Parents must protect their children from illness or injury. The belief in the commitment of family members to their family relationships. Family members feel an obligation to assist fellow family members especially when they are in need. The belief that children must exhibit respect for themselves and for their family members, particularly their elders.

The child must be dressed in clean clothing. He/she must be respectful to guests who visit (e.g., greeting them at the door). The child may be less involved in conictual situations (e.g., ghts with peers). The child may be less independent (e.g., he may not be able to dress himself). The child may be emotionally connected to other family members aside from his/her primary caregiver. Other family members may be more involved in the daily caretaking activities of the child. When engaging with a grandparent or another older family member, the child may be expected to exhibit proper manners, and to listen to their elders.

Carers may advocate promoting socialemotional developmental objectives that address these skills. Carers may advocate for their school-aged child to be paired up with a shadow aide when engaging with peers in order to teach the child how to avoid, or effectively diffuse conicts. Carers may advocate for other family members being involved in the childs interventions. For example, siblings may be involved in working on social emotional learning objectives. Carers may advocate for interventions to include developmental objectives that target respectful behaviors.

Respeto (Valds, 1996)

understanding of her daughters needs, along with her understanding of her community context, allowed her to obtain services and advocate for her child. Effective advocacy may have to begin at both the family and the societal level, as demonstrated by the following two examples. In 2003, the Mental Disability Rights International Committee (MDRI) visited a state-run neuropsychiatric hospital in Paraguay. The ofcials found two adolescent boys with autism each locked in a 2 2 m isolation cage without access to a bathroom, and the hospital staff indicated that they had been locked up for over 4 years. The attorneys for MDRI led a petition that documented the numerous human rights violations suffered by these two boys and the rest of the 460 patients in the hospital. Eight days later, in a historic decision by the Inter-American Commission on Human Rights, MDRI attorneys were allowed to request that appropriate measures be taken to protect the lives of the patients in this hospital. After 14 months of continuous oversight of the facility by the Commission, the Paraguayan government agreed to restructure the countrys mental health system. They were now obligated to provide the social and mental resources necessary to integrate
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children and adults with disabilities into the community (Hillman, 2005). Through the joint advocacy efforts of nonprot organizations (e.g., Disability Rights International) and the Committee on Human Rights, the Paraguayan government made substantial and necessary changes to the mental health policy and practice in Paraguay. Three years later, one of the boys who was locked in an isolation cage was now living in a community home, feeding and bathing himself, and has developed trusting and caring relationships with peers and members of his community (Hillman, 2005). In the state of Hidalgo, Mexico, the Mexican Foundation for the Rehabilitation of People with Mental Disorders, a nongovernmental organization whose main aim is to move Mexican states away from institutionalizing individuals, and toward developing small, community residences for people with ID, was able to advocate for change. In partnership with Hidalgos Secretary of Health, they developed the Hidalgo model of mental health services10 small houses for intensive rehabilitation and two houses for social integration. Because of these new community centers, the state was able to close its large psychiatric hospital (World Health Organization, 2009).

Journal of Policy and Practice in Intellectual Disabilities S. R. Cohen Advocacy for the Abandonados

Volume 10 Number 1 March 2013

Effective advocacy, at the family and at the policy level, can be a useful tool to access crucial community and social supports that enhance child and family outcomes (Trainor, 2010; World Health Organization, 2009). For Latino families with a child with ID, a historically underserved population, advocacy efforts may be particularly useful to attain community supports and services that are sorely lacking within this group both within the United States and in Central and South America. If we as researchers, policy makers, and educators can better understand the value of certain culturally situated beliefs about family support and child development, and we capitalize upon these unique social resources that are important to some Latino families, we may be better able to engage with families in targeted advocacy efforts that bring about more and better quality community services and supports.

ACKNOWLEDGMENTS The author acknowledges Dr. Jan Blacher for her immeasurable guidance and support during the writing and editing process, and the Graduate School of Education at UC Riverside, where the author was the Eady Postdoctoral Scholar at the SEARCH Family Autism Resource Center.

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