University of Iowa

Iowa Research Online Theses and Dissertations

Spring 2016

Immigrant parents of children with disabilities and their perceptions of their access to services and the quality of services received Rochelle Renee Honey-Arcement University of Iowa

Copyright 2016 Rochelle Renee Honey-Arcement This thesis is available at Iowa Research Online: http://ir.uiowa.edu/etd/3103 Recommended Citation Honey-Arcement, Rochelle Renee. "Immigrant parents of children with disabilities and their perceptions of their access to services and the quality of services received." MA (Master of Arts) thesis, University of Iowa, 2016. http://ir.uiowa.edu/etd/3103.

Follow this and additional works at: http://ir.uiowa.edu/etd Part of the Community Health Commons

IMMIGRANT PARENTS OF CHILDREN WITH DISABILITIES AND THEIR PERCEPTIONS OF THEIR ACCESS TO SERVICES AND THE QUALITY OF SERVICES RECEIVED

by Rochelle R. Honey-Arcement

A thesis submitted in partial fulfillment of the requirements for the Master of Arts degree in Interdisciplinary Studies in the Graduate College of The University of Iowa May 2016 Thesis Supervisor: Professor Gregory Hamot

Copyright by Rochelle R. Honey-Arcement 2016 All Rights Reserved

Graduate College The University of Iowa Iowa City, Iowa

CERTIFICATE OF APPROVAL ____________________________ MASTER'S THESIS _________________ This is to certify that the Master's thesis of Rochelle R. Honey-Arcement has been approved by the Examining Committee for the thesis requirement for the Master of Arts degree in Health and Disability Rights at the May 2016 graduation. Thesis Committee:

____________________________________________ Gregory Hamot, Thesis Supervisor ____________________________________________ Christopher Squier ____________________________________________ Douglas Baynton ____________________________________________ Maureen McCue ____________________________________________ Youjia Hua

To my family. To my father, your passion for human rights lives on in me. To my mother, your belief in me empowered me to finish. To my sisters, although we are far apart, your support in my academic decisions means more to me than you can imagine. To my husband, your patience and support through this process has been greatly appreciated. I love you all.

ii

“One person can make a difference, and everyone should try.” John F. Kennedy

iii

Abstract An analysis of experiences of immigrant parents, in a Midwestern college community, accessing services for their child with a disability. A qualitative study using phenomenological theory was used wherein access to services was explored from the parents lived experience. Four immigrant parents were chosen using purposive sampling. Grand tour questions were asked leading to follow-up questions based on respondent answers. Interviews were audio recorded in a location chosen by respondents, and transcribed. I noted the home environment and interactions with child. Grounded theory emerged from analysis using the constant comparative method. Transcripts were read multiple times and categories began to emerge. Based on emergent categories transcripts were cut into segments and categorized accordingly. Comparisons of categories led to reanalysis and emergence of three primary themes; experience of accessing services, feelings about services, and factors affecting experience of accessing services. To enhance credibility, negative case analysis was used to incorporate differential experiences. Thick description was used to increase transferability. Dependability and Confirmability were addressed using an audit process. Two parallel theories emerged from the analysis; one regarding factors leading to positive experiences of accessing services, one regarding factors leading to negative experiences. The theories are supported by original data from the interviews and show how providers, the Department of Human Services, school systems and advocates can improve the situation. This study adds knowledge by exploring a previously unexplored type of community in this research area, but is limited by researcher requirement of English speaking respondents.

iv

Public Abstract In this study, four immigrant parents, in a Midwestern university community, who have children with disabilities were interviewed to see what it has been like to get services for their child and what quality those services have been. Initial questions were developed, then the interviews flowed from answers given by the parents. Interviews were audio recorded in places chosen by the parents. To analyze the interviews I read them multiple times and started seeing categories developing. Interviews were cut up and put into categories. The categories were compared and combined into bigger categories. From this process major themes developed. Those themes were; experience of accessing services, feelings about services, and factors affecting experience of accessing services. To enhance the trustworthiness of the analysis a technique of looking at cases not fitting with the other cases and incorporating them into the theory was used. A thorough description of the parents and the community are included in order to indicate how transferable the results are to other situations. An audit of procedures and analysis was conducted by a professor to ensure that they were completed properly. Two theories emerged; one regarding what led to positive experiences, one regarding what led to negative experiences. Recommendations for providers, the Department of Human Services, the school system, and disability advocates are included. This study is important because it explores a type of community that has not been studied in this research area before. A limitation was that the parents had to speak English.

v

Contents List of Figures ........................................................................................................................................... ix Chapter One: Introduction ................................................................................................................... 1 Statement of the Problem ................................................................................................................ 1 Research Questions ............................................................................................................................ 2 Scholarly Context of this Study ...................................................................................................... 2 Significance ............................................................................................................................................ 4 Method..................................................................................................................................................... 5 Limitations ............................................................................................................................................. 6 Chapter Two: Literature Review ....................................................................................................... 7 An International Definition of Disability ................................................................................... 7 Access to Treatment as a Right...................................................................................................... 9 Immigrants with Disabilities and Immigrants with Children with Disabilities ...... 11 Recommendations for Providers ................................................................................................ 14 Chapter Three: Research Methods ................................................................................................. 17 Rationale for Qualitative Method ............................................................................................... 17 Phenomenology ................................................................................................................................. 17 Grounded Theory .............................................................................................................................. 18 Context of this Study ........................................................................................................................ 19 Study Respondents ........................................................................................................................... 21 Data Collection ................................................................................................................................... 23

vi

Respondent recruitment. .......................................................................................................... 24 Interview methodology. ............................................................................................................ 24 Data analysis................................................................................................................................... 25 Trustworthiness Criteria ............................................................................................................... 26 Chapter Four: An Analysis of the Data .......................................................................................... 28 Experience of Accessing Services ............................................................................................... 29 Diagnosis. ......................................................................................................................................... 29 Receiving services. ....................................................................................................................... 30 Changing services. ........................................................................................................................ 31 Feelings about Services .................................................................................................................. 33 Positive feelings. ........................................................................................................................... 33 Complaints. ..................................................................................................................................... 34 Factors Shaping Experience of Received Services ............................................................... 41 Immigrant issues. ......................................................................................................................... 42 Home country situation. ............................................................................................................ 44 Community support. ................................................................................................................... 48 Effect on parents. .......................................................................................................................... 52 Chapter Five: Discussion and Recommendations .................................................................... 58 What is the experience of accessing services for an immigrant parent with a child with a disability? .............................................................................................................................. 58 What has mediated the experience of receiving services? .............................................. 58

vii

In what way does the experience in their home country mediate their experience in the United States? ....................................................................................................................... 59 What could make the experience of getting services for their child more accessible and more helpful for both the parents and their child? ................................................... 59 Emergent Theory .............................................................................................................................. 60 Global Barriers to Care.................................................................................................................... 62 Rationale for Concern over Barriers in Early Childhood .................................................. 63 Recommendations ............................................................................................................................ 65 Service providers.......................................................................................................................... 65 Department of human services. ............................................................................................. 68 School system. ............................................................................................................................... 69 Disability advocates. ................................................................................................................... 70 Future Research Avenues .............................................................................................................. 73 Conclusion ............................................................................................................................................ 74 Appendix A................................................................................................................................................ 75 References................................................................................................................................................. 80

viii

List of Figures Figure 1. The International Classification of Functioning, Disability, and Health. Describes the factors involved in the development of dysfunction and disability (World Health Organization, 2011) .. 8 Figure 2. Perceptions of the Experience of Accessing Services. Describes the factors leading to positive and negative perceptions of accessing services. ...............................................................................60

ix

Chapter One: Introduction The purpose of this phenomenological study is to understand the experience of accessing disability services for immigrant parents of children with disabilities in a Midwestern college town. This research topic is important for a number of reasons. For example, the United States has many young immigrants requiring multiple medical services and discrimination in these services may exist (Mpofu, 2015). Additionally, it is important to explore people’s experiences so that care can be provided in the best manner possible. Statement of the Problem In the United States, approximately 6.5 million children, from infants to youth, have disabilities (Center for Parent Information and Resources, 2014). The Individuals with Disabilities Education Act (IDEA) is the legislation that protects the educational rights of children with disabilities. Passed on November 29th, 1975 as the Education for All Handicapped Children Act, IDEA guarantees all children with access to free, appropriate public educations (Center for Parent Information and Resources, 2014). That education must take place in a least restrictive environment. With subsequent amendments, children, birth through youth, are now assured services to help them achieve in school (U.S. Department of Education, 2014). Because of IDEA, most children with disabilities in the United States attend school (U.S. Department of Education, 2014). In the state where my study took place 57,544 students aged 6-21 were receiving services in schools under IDEA in the 2014-2015 school year (U.S. Department of Education, 2015). Although overall access to services in the United States may be good, it has been reported in the literature that minorities, and especially immigrants, do not think they are provided with the services needed, and in a manner that is appropriate (Simon, 2001). Everyone is entitled to access to services under the American’s with Disabilities Act (ADA) and IDEA, so it is important that disability services are provided in an equitable manner. It 1

is critical that we understand what is going on in this realm, so as to ensure that everyone is being provided with the services they are due. Research Questions The overarching question raised in this study concerns whether or not the access to disability services translates equitably to immigrant families. In order to pursue this question, the following sub-questions form the core of this study’s inquiry: 1.

What is the experience of accessing services for an immigrant parent of a child with a disability?

2.

What has mediated the experience of receiving services?

3.

In what way does the experience in their home country mediate their experience in the United States?

4.

What could make accessing services for their child more accessible and more helpful for both the parents and their child?

Scholarly Context of this Study A few studies have looked at access to services for immigrants in large metropolitan areas of the country (Welterlin & LaRue, 2007, Yu, Huang, & Singh, 2004). These studies indicated that some immigrants, living in major cities, had trouble accessing the services needed by their child. However, this study explores these issues in a much smaller demographic area, a Midwest college town with a large medical school and health complex. In 2012, there were 40.8 million people classified as immigrants living in the United States, totaling 13% of the population (Nwosu, Batalova, & Auclair, 2014). Almost 46% of those immigrants are naturalized U.S. citizens. Forty six percent of immigrants in the United States are classified as Hispanic or Latino, with Asian immigrants making up 25% and Blacks making up 9%. The remaining 20% are of European descent (Nwosu, Batalova, & Auclair, 2014). 2

Research on the experience of immigrant parents of children with disabilities have revealed that immigrants feel discriminated against by providers (Balcazar, et al., 2012). Balcazar, et al. (2012) found that Latino immigrants, overall, face oppression and asymmetric power relationships. This oppression and power relationship is magnified when there is a member of the family who has a disability. Interactions between parents and professionals are often fragile when there are cultural differences between them (Jegatheesan, 2009). There are not many studies done in the United States on immigrants who have a child with a disability. Some studies have taken place in other, similar countries. One such study is in a report to Citizenship and Immigration Canada. In this, King, Lindsay, Klassen, Esses, and Mesterman (2011) wrote about the struggles of immigrants in Canada to access appropriate services and receive respectful care by providers. The report stated that more needs to be known about the service access, utilization and experience of immigrants with a child with a disability. In one study from the United States, Hibel & Jasper (2012) wrote about the delay in placement of children of immigrants into special education for learning disabilities. It is known that the numbers of children of immigrants are disproportionately high in special education, but Hibel and Jasper (2012) found that they are delayed in getting initial access to services. Once in special education, the child’s immigrant parents are often not as active in their child’s special education as would be ideal (Al-Hassan & Gardner III, 2002). AlHassan and Gardner III give recommendations on how to involve parents in order to give their children the best chance of success, such as using translators with which the family is comfortable, and providing information in both oral and written forms that enable parents to understand.

3

Many immigrants find that knowing where to turn to get the services for their child can be difficult. In another Canadian study, Tam and Poon (2008) found that Chinese immigrants were having difficulty accessing resources, therefore they did a study of a support group at a Chinese church. They found that the group was helpful in informing the immigrant parents where to get the help that they need. Thus, it has been reported that in large metropolitan areas immigrants have felt discriminated against when attempting to access services and that they have had difficulty accessing services. Will that discrimination and difficulty be evident in a smaller, Midwestern community? Significance This study will help people who work with immigrant children with disabilities and their families improve the work they are doing. The research will assist service providers and organization to best reach immigrant families and determine ways to ensure that patients from immigrant families are receiving the services they need and whether they need to adjust the means with which they inform the public about their services. Another group that will be informed by this study is the state Department of Human Services (DHS) in which this study was conducted. This organization is the one which many families turn to when they have a child with disabilities. The case managers at DHS have the responsibility of informing parents on services available in the community. This thesis will inform DHS on how to improve their work. School systems can learn from this research through the development of more effective communication by the school personnel. It is possible that communication with immigrant parents can be improved, such that the education and wellbeing of children with disabilities from immigrant families can be improved. Disability advocates can use this study’s findings to advocate for changes that will make the lives of immigrant children with disabilities more humane. The findings in this 4

study will give direction to advocates that will help children with disabilities receive the care that they need in order for them to live happy, productive lives in society and out of institutions. Method This study is a qualitative study utilizing a phenomenological theory. Phenomenology relates to the study of the subjective experience (Amedeo, 2009). Phenomenologists want to understand the lived experience of their participants. The lived experience is important for this study, because I am exploring parental perceptions of the services received. What is important in this study is the respondents’ lived experience of accessing services, how they feel about those services, and how the respondents think the services might be improved. Four immigrant parents who have a child with a disability were interviewed for approximately one hour each. Two parents were Latina mothers, one was an African mother, and the fourth was a father from Syria. The participants were recruited from local agencies and posted fliers. This was a purposive sample, as I was looking for a particular type of participant, namely immigrants to the United States who have a child with a disability who is currently accessing services. I developed initial grand tour questions, but the interviews provided more depth by my allowing the interview to remain organic and follow the flow of the respondents. I was able to delve deeper into their experience by asking follow up questions related to what the respondents told me. The interviews were recorded digitally and transcribed. I utilized the grounded theory method in the analysis of the data. The data were analyzed looking for similarities and differences across cases. As I analyzed the interviews, themes began to emerge that were grounded in the data. The themes were related to the

5

primary research questions and they formed the basis upon which the study’s recommendations developed. Limitations A limitation of this study is that only participants who spoke English were allowed in the study. This was done because of the researcher’s lack of fluency in Spanish or other pertinent languages. This limited the possible sample of respondents to a smaller number than would otherwise have been possible. It also limited the results because immigrants who do not speak English may have a different experience regarding access to services than immigrants who do speak English. The next chapter includes a literature review that will discuss the studies that have been published regarding immigrants and access to disability services. This literature is fairly sparse, as this has not been a common area of research.

6

Chapter Two: Literature Review There is very little research in the area of immigrants with children with disabilities and their access to services. I performed an extensive literature search and two librarians also attempted to access literature. In this chapter I define disability, show what accessing services has been like for immigrants in large metropolitan areas in the West, and provide recommendations that have been suggested in the literature. An International Definition of Disability Defining disability is a controversial subject. For many years a medical model of disability has dominated the conversation about disability. This model focused on the individual and on how the disease, health condition, or trauma they experience can be addressed to cure or mitigate the effects of the disability (World Health Organization, 2002). That definition faced strong resistance by the disability community, because they recognized that the barriers to their success were environmental and societal (World Health Organization, 2002). The disability community felt that the medical model disregarded the difficulties that they had maneuvering through a society which had been locking them up in institutions, ignoring, or ridiculing them (Pfeiffer, 1993). They wanted the difficulties that they have from the environments in which they live recognized as contributing to their disability. The social model of disability (World Health Organization, 2002) contends that disability is an environmental concept where societal conditions and structure are the cause and the solution to disability (World Health Organization, 2011). The medical model and the social model are often viewed as opposites and incompatible. They are both partly valid, but inadequate. The World Health Organization attempts to merge the two models into a more comprehensive model of disability that takes into account the biological, social and psychological aspects of the phenomenon of disability, known as the bio-psycho-social model (World Health Organization, 2002). The 7

International Classification of Functioning, Disability, and Health (ICF) is the framework which the World Health Organization developed for disability and health (World Health Organization, 2002). The World Health Organization wanted to move away from a dichotomy of health and disability where once you are disabled you no longer can be considered healthy (World Health Organization, 2002). Many people with disabilities consider themselves healthy. With the ICF measuring functioning in society, regardless of the reason for the impairment it makes disability a universal human experience where anyone can experience limitations of their functioning in society because of a health problem and societal barriers (World Health Organization, 2002).

Figure 1. The International Classification of Functioning, Disability, and Health. Describes the factors involved in the development of dysfunction and disability (World Health Organization, 2011).

8

The ICF diagram (Figure 1) shows how disability and functioning are seen as the consequences of the interaction of health conditions and contextual factors, the contextual factors being environmental factors and personal factors. Environmental factors include societal attitudes, architecture, climate, legal structure and other factors that come from where a person lives or works (World Health Organization, 2002). Personal factors include many characteristics of the individual such as gender and age, socioeconomic status, coping mechanisms and other factors that are related to how the individual experiences the health condition (World Health Organization, 2002). In the ICF, disability represents difficulties in one, two, or all three areas of functioning that include impairments of body function or structure, activity limitations, or restrictions of participation in any area of life (World Health Organization, 2011). The ICF is useful not only for looking at individual level functioning, but also for collecting crucial data with consistent and comparable means. Data collected using the ICF can be used at the institutional level and the societal level for policy development, economic analysis, and research uses such as intervention studies and studies on environmental factors. Access to Treatment as a Right Around the world, people with disabilities have been subjects of ridicule and targets for discrimination. That has also been the case in the United States. Historically, the treatment of those with disabilities has been dismal (Shapiro, 1993). Western society has been in a process of dealing with the inequalities evident in society (Baynton, 2013). But people with disabilities were long left out of the conversation, and even used to imply that other groups should not receive equal treatment. Women and minorities were often spoken about as being disabled, and thus, inferior (Baynton, 2013). When speaking about immigrants with disabilities, the United States has a history of clear discrimination and 9

oppression. At the end of the nineteenth century, American immigration policy called for the exclusion of people with disabilities and the exclusion criteria became stricter during the twentieth century (Baynton, 2013). It became quite difficult for people with defects, or perceived defects, to enter the United States. The disability rights movement began in the 1960s in an attempt to secure equal rights and equal opportunities for people with disabilities (Shapiro, 1993). The disability rights movement utilized tactics used in the civil rights and women’s rights movements. The first civil rights legislation passed for people with disabilities was the Rehabilitation Act in 1973 (Shapiro, 1993). This act outlawed discrimination of people with disabilities from federal and federally funded programs and services. Two years later, children with disabilities were provided with some protections. The Education for All Handicapped Children Act was passed in 1975. That act, now called The Individuals with Disabilities Education Act ensures that children with disabilities are provided with opportunities to attend school and receive the accommodations required to let them succeed. The Americans with Disabilities Act was passed in 1990 and protects anyone in the United States who is a qualified Individual with a disability. That is “a person who has a physical or mental impairment that substantially limits major life activities; has a record of such an impairment; or is regarded as having such an impairment” (Pfeiffer, 1993). The ADA protects people with disabilities in employment, state and local government services, telecommunications, public accommodations and transportation (Pfeiffer, 1993). These acts protect the rights of people with disabilities, but do not ensure their enforcement. Despite these acts, many people with disabilities continue to have difficulty accessing adequate services, especially immigrants (Lindsay, King, Klassen, Esses, & Stachel, 2012). 10

Although the United States led the world in passing these three acts, our reluctance to ratify the Convention on the Rights of Persons with Disabilities (CRPD), a United Nations convention, serves to show the disability community that commitment to their rights may not be as solidified as the government may wish to be perceived. By ratifying the CRPD, the United States would show that they are accountable to the world community, and it may improve access to services. Immigrants with Disabilities and Immigrants with Children with Disabilities People in the rehabilitation field are realizing that immigrants with disabilities need culturally sensitive services (Lindsay, King, Klassen, Esses, & Stachel, 2012). Note that this is different from the terminology used most commonly, which is culturally competent. Lindsay, et al (2012) use culturally sensitive to refer to services in which the provider perceives, comprehends, and respects the client’s beliefs, goals, and values, critical components to quality care. Lindsay, et al (2012) critique the cultural competence framework as seeing culture as a static state, hand in hand with race/ethnicity without recognizing the diversity within groups and disregarding the relationship of power. Providing culturally sensitive practices can be challenging, but is increasingly important, with immigrants coming from unfamiliar regions and with clients from ethnic minorities having poorer rehabilitation outcomes (Lindsay, King, Klassen, Esses, & Stachel, 2012). Immigrants experience disadvantages by way of being immigrants. They must face acculturation issues, language acquisition, poverty, lack of health insurance, and limited knowledge of what is available service and resource wise. Providers must find a way to overcome these challenges in order to provide the most effective services. In the Lindsay et al (2012) article, they laid out five areas that providers stated made things more difficult in their pursuit of providing good treatment to immigrant clients.

11

One is the lack of formal training in providing culturally sensitive care. While more attention is being given to this area, this training needs to be high quality. A second area is in language and communication (Lindsay, King, Klassen, Esses, & Stachel, 2012). Being able to communicate with families and with young clients is critical. It can be difficult working with interpreters, as there are many barriers with their use, such as how much time it takes, comfort of clients with the interpreter, and capability of the interpreter (Flores, 2005). If the clinician cannot communicate with the clients then the process is broken from the start. Many places are trying to provide interpreters, but finding interpreters with training in all the different languages that are coming to the United States is a daunting task. A third challenge reported by providers is that people from other cultures often define disabilities in a different manner than what we are accustomed to in this country (Lindsay, King, Klassen, Esses, & Stachel, 2012). This affects whether people come for help on their own or are forced by other entities such as educational institutions. It affects the trust people have with providers and their willingness or awareness to communicate what is going on. In addition, if a client holds a belief that what is going on with their child is caused, not by a medical condition that requires medical intervention, but by a spiritual imbalance that requires sacrifice and prayer, or is a gift from God that gives the child special importance in their family, they are going to be less likely to adhere to treatment protocols and work towards the goals of the provider. It is important to know what the family wants and where the family is coming from in order to make goals that are going to work for everyone (Welterlin & LaRue, 2007). A fourth and related barrier is in building rapport with immigrant families (Lindsay, King, Klassen, Esses, & Stachel, 2012). Providers are seen as authority and in many cultures people in authority are not to be questioned and are supposed to know all the answers, 12

therefore families may feel uncomfortable with the current practice of family centered care where the family makes many of the decisions collaboratively with the provider. Another issue with power is the relationship of power within the family. In many cultures the father makes the decisions and the mother goes along with them, but the mother is often in charge of the care of the child and knows what the child needs better than the father. The father may do all the communication, but he may not know all the pertinent information. This can certainly cause difficulties when trying to work with and build rapport with a family. It is difficult to know who and how to approach the different members of the family. The child’s place in the family is also different culture to culture. In some families the child is held in high esteem and placed in prominence. In other cultures they are seen as a source of income and work in the family. Knowing the place of the child is important in determining how to build a relationship with the family and to provide appropriate care (Lindsay, King, Klassen, Esses, & Stachel, 2012). The fifth challenge the providers noted was in encouraging and training the immigrant parents to advocate on behalf of their children (Lindsay, King, Klassen, Esses, & Stachel, 2012). Part of the issue is their unfamiliarity with the system and finding the resources that their children are provided. Many families come from resource poor countries and when they are provided with services they take them and do not know that they can look for more services. They do not understand that if there is a problem with the services they receive, they have the right to address the problem or seek services elsewhere. Providers need to know what the families want and need and if parents are unable to speak up for their child, then providers cannot provide the appropriate services or find a resource to help the family. Welterlin & LaRue (2007) looked primarily at autism in immigrant families. They reported that Black and Asian/Pacific children were disproportionately high in their 13

diagnostic labeling of autism and that Native American and Hispanic children were low. This has important implications, on diagnosis and treatment of children with characteristics that may represent autism. In many Asian communities it is considered rude to look people, especially adults by children, in the eye. In the medical model of autism diagnosis eye contact is a key feature. Each culture has its own appropriate social interaction rules and customs. Those need to be taken into account when working with immigrant children. They suggest using a sociocultural perspective that cautions the overuse of normalization principals and the dependence on the mainstream quality of life indicators that practitioners are used to using to indicate improvement towards goals. Those indicators may not be appropriate in a family that does not adhere to Western cultural values. They do encourage practitioners to have open conversations with immigrant families about what they want and need, their beliefs and social customs, and whether they intend to stay in the United States and whether teaching the child to adjust to the mainstream culture in some way might lead to more integration and less social isolation and rejection. Welterlin and LaRue also mention two other barriers to access to services. Finances are a big factor in receiving care. Low income individuals may not be able to afford the services needed for their child and may not know about the low cost or free services available. Transportation and getting time off work are expensive and become barriers. According to Welterlin & LaRue, the biggest barrier for many immigrants is their immigration status. This clearly affects the ability and willingness of parents to seek the help that their child needs and deserves. Recommendations for Providers Welterlin & LaRue (2007) provide recommendations to service providers. They suggest using the ecocultural approach that incorporates the social and cultural environment of the family to create what they call a “best fit” intervention. They encourage 14

providers to discuss views on diagnosis, etiology and treatment with the family. They also suggest using a strength-based approach when working with all families, especially immigrant families. This approach focuses on what positive attributes the family brings to the table and how to use those attributes to best assist the child with the disability. A final recommendation that Welterlin & LaRue (2007) give is for the practitioner to explore their personal beliefs and values, where they come from, and how they might interfere or improve on their relationship with immigrant children and their families. Lindsay et al. (2012) had recommendations for providers as well. The first recommendation came from providers’ request for more training on culturally sensitive practices. Second they suggest that immigrant families need help learning to advocate for themselves and their children, in part by increasing their awareness of available resources. They suggest better teamwork and coordinated care. The different providers working with a child and family need to communicate with one another and with the family unit. Some providers suggested that attempts to better match clinicians with families and to hire more diverse staff is important. Working with the same interpreter each time is a suggestion that providers had. That way some trust can develop. Providers stated that better collection of cultural background information would help them in working with their immigrant clients, and that more time is needed to work with this population in order to develop rapport and learn to communicate with the family (Lindsay et al., 2012). Communication is the key point that both Lindsay et al. (2012) and Welterlin & LaRue (2007) are trying to make. A shift from the medical model where the professional knows everything that is best for everyone needs to occur. Immigrant families with children with disabilities have different cultural expectations, practices and needs and those must be taken into account when working with these clients. 15

Collaboration is important when working with culturally and linguistically diverse families who have a child with a disability (Harry, 2008). Harry (2008) identified barriers to collaboration as being, deficit views of culturally and linguistically diverse (CLD) families where providers focus on the negatives of working with a diverse family rather than on the positives that the family brings to the situation, cross-cultural misunderstandings about disability, differing values surrounding goals for children with disabilities, and differences in views about what the role of caregivers should be in regards to care of their child. Harry (2008) suggests that more education needs to occur in the areas of multiculturalism and the historical treatment of minorities in our country. It is also suggested that providers examine their own values, preconceptions, and prejudices. Providers need to be aware of racial privilege and the importance of power relationships. In order to properly care for children of immigrants, it is important that we understand their situation and be aware of our judgements. Working with this population is different from working with the majority population. It is critical that providers be prepared to put in more work and to be flexible when working with the population. The next chapter will describe the method used in this study. Phenomenology and Grounded theory will be discussed, as well as an explanation of the process of the study and how I analyzed the data.

16

Chapter Three: Research Methods This study focuses on the perceptions of four immigrant parents who have children with disabilities as they seek access to services. The study also explores the perceptions of the parents on the quality of the services their child has received. This study is a qualitative study. This chapter describes the research method used to conduct the study. Phenomenology and grounded theory served as the basis for data analysis. The respondents are described and data collection, coding and analysis procedures are described. Prior to conducting the interviews the study protocol was examined by the university Institutional Review Board (IRB) in order to protect the study respondents, and I was given IRB approval to proceed. Rationale for Qualitative Method As a social worker, I am accustomed to interviewing people, and having conversations with them in order to understand their situation. Although, in my studies, I have had training in both quantitative and qualitative methods, I determined that for this study, and the limited population of potential participants, my background in interviewing, the limited knowledge on this subject, and my wish to truly understand the participants’ stories and experiences, a qualitative method was most appropriate. Interviews in the participants’ homes allowed me to observe the living situation of the participants and get a better understanding of how they lived their lives. I was able to meet some of the children and see their interaction with the caregivers. This gave me insight into the family values and how they view their child with a disability. Phenomenology Phenomenology is a theory that was born in the fields of philosophy and psychology from the minds of Husserl and Heidegger (Amedeo, 2009). Phenomenologic inquiry is concerned with the perceptions that a person has about an event, and their perspective and 17

understanding of a phenomenon. Investigators following a phenomenological method of inquiry are interested in understanding the lived experience of people with regards to a given situation. They are interested in how people construct meaning from the experiences. Phenomenology is conducted using in-depth conversations and observations while avoiding the use of previously developed theories (Amedeo, 2009). This study was conducted based on phenomenology and is concerned with the perceptions of the participants with regard to accessing services for their child with a disability. In order to understand the experiences of the participants and come to some conclusions about their perceptions I utilized the grounded theory method to analyze the data in the study. Grounded Theory As Glaser and Strauss explain in The Discovery of Grounded Theory (1967), grounded theory is an approach to social research in which theory is created out of, rather than tested, by the systematic exploration and analysis of data. Grounded theory emerges from the Constant Comparative Method (CCM) of qualitative analysis (Glaser & Strauss, 1967). CCM consists of four stages that allow the researcher to analyze the data and come up with a theory that is grounded in the data. First, the researcher examines the data and develops categories based on bits of the data or “incidents” in the data. Glaser & Strauss (1967) states that a defining aspect to this method involved the following: “While coding an incident for a category, compare it with the previous incidents in the same and different groups coded in the same category.” As the coding proceeds, the second stage develops where the categories are integrated. The properties of each category are compared with one another and become integrated. The theory begins to develop as the categories and properties are compared and sense is made from those comparisons, and the third stage of delimiting the theory begins. Major modifications to the theory, based on new information 18

and analysis, begin to fall off as the theory develops and modifications become limited to clarification of logic. Non-relevant properties are eliminated and similarities of categories are discovered, so that fewer categories are used to develop the theory. The fourth stage is the writing of the theory, where the categories and thoughts on the categories are written down into a theory that is grounded in the data. A grounded theory emerged in this study through the constant comparative method. I had grand tour questions to ask, but allowed the interview to flow with the participants’ responses. I delved into their answers with follow-up questions. After reviewing each interview I altered my approach with the next participant in order to make clarifications and to inquire about particular concepts that were new to me that had developed from the previous interviews; thus, I allowed the research to be flexible and to have emergent design. In coding the data, I used the constant comparative method. First, I read through the transcripts of the interviews, and based on categories I perceived in the reading and rereading of the transcripts, cut them up into small sections that were pasted to note cards. The cards were marked as to which respondent had made the statement. I subsequently read through each card and gave it a label describing the content. As the process continued, cards of similar content were piled together. It became clear that certain themes were repeating themselves. When all of the cards were coded, I started to look at the similarities and differences between the piles and to contemplate the themes that were developing. Piles were combined and altered until a theory began to develop. Context of this Study This study took place in a Midwestern county with a state university that included a large medical school and hospital complex. According to the United States Census Bureau, the county had a population of around 145,000 in 2014 and is racially comprised of approximately 80.5% White, 6% Black, 5.5% Hispanic/Latino, 6% Asian and 2% with two 19

or more races (U.S. Census Bureau, 2014). 9.3% of the population is foreign born, more than twice the state average, and 13.3% speak a language other than English at home. Of the foreign born individuals, 52.6% are from Asia, 15.7% are from Africa, and 18.8% are from Latin America, the remainder are of European decent (U.S. Census Bureau, 2014). This demographic breakdown is considerably different from the state’s overall numbers, where a significantly higher proportion are from Latin America (U.S. Census Bureau, 2014). This may be due to the fact that this is a university town and there is a significant Asian student body at the school. Overall, the county is more racially diverse than most of the state. 95% of the adults are high school graduates, and 51% have Bachelor’s degrees or higher. The average per capita income, between 2010 and 2014, was $31,131, with the median household income being $54,985, and 15.9% living below the poverty level (U.S. Census Bureau, 2014). All of those levels are more than the state averages. According to the census, approximately 3% of children in the county have a disability (U.S. Census Bureau, 2014). The community has a number of options for treatment of disabilities, including university settings and community organizations. Respondents were sought from these locations. One of the organizations has a support group for Latina mothers of children with disabilities. With the limitation of not speaking any language, other than German, well enough to fully engage in a qualitative research interview with respondents, I was limited to working with respondents who spoke English. The support group was able to produce two respondents who were willing to talk to me about their experiences. I was also able to locate two other respondents. It was a learning experience to realize how difficult it can be to locate respondents, especially when the study is not addressing an organization, but individual perceptions about treatment throughout the community.

20

Study Respondents I researched popular names in each of the respondent’s countries of origin in order to given each respondent an alias that was culturally appropriate. Respondent 1 is a 27 year old woman from Mexico who came to the United States in the early 2000s. The name that I used for Respondent 1 is Jazmin. Her seven year old son has cerebral palsy which was diagnosed at age 2. She has two other children, aged two years and three months. The family had previously lived in a mobile home park, but now lives in a modest home with a walk out basement. Those living in the home include the mother, father, three children, the respondent’s mother, and the respondent’s brother. Her son receives services through the states Brain Waiver program, Medicaid, and has a trust fund that was developed that pays for his medical equipment. He has received care from three different treatment providers and the university hospital is the source of his medical care when he has medical complications due to his disability. The grandmother receives payment from the state through the waiver program as a respite worker to care for the child when the mother needs a break. This brings in a small amount of income while allowing the mother to take care of her other children. Her husband works long hours in order to support the family, and often works nights in order to make more and to be available to help with the children during the day. Jazmin does not work, and this bothers her. She feels as if she is in her prime working years, and that she is missing out on important opportunities, but she needs to be home with her son to take care of his needs. The family’s living room was set up to take care of her son. His multiple devices were arranged around the room and there was a large space for him to practice walking with his walker, along with numerous holes in the walls and patches where he had run into the walls while practicing. In the kitchen were all sorts of specialized eating apparatuses along with different powders to be mixed for his intake. 21

Her son was home when I visited, because he was home sick with a fever, a common occurrence for him, according to Jazmin. I was able to observe his grandmother caring for him. Jazmin’s son usually goes to school in a special education classroom at an elementary school across town, because he finally became comfortable with a teacher and Jazmin did not want to move him to a new school when they moved. She would like him to ride the bus to school, which the school district is willing to do, but her husband is too scared to give up that control to someone else, therefore Jazmin must go across town twice a day to take him to school and pick him up. The family has moved from a small town in the vicinity, to a trailer court, and recently to the home they are in now. These moves have provided her with knowledge of resource availability in town and in surrounding communities. Respondent 2 is a 39 year old woman, originally from El Salvador, who has a six year old daughter with pervasive developmental disorder not otherwise specified, which is on the autism spectrum. I refer to respondent 2 as Elisa. Elisa is married, but her husband is in California most of the time for work. They will all be moving to California by the end of the year. At this point Elisa and her daughter are alone together without dad. They live in a modest two bedroom house that has a lived in feeling, but is not messy. There are children’s toys around and a behavior chart is prominent in the living room. Elisa’s daughter was at school at the time of the interview. She is in Kindergarten at a school that has services for children with autism. Elisa’s daughter has received services from three organizations and Elisa is on the planning committee for a Latina mother’s support group that is held at one of the organizations. Her daughter’s services are covered by her husband’s health insurance. He switched jobs last year and the insurance changed. She is not pleased with the change. Respondent 3 is a 38 year old man, originally from Syria. He is referred to as Mathu. He has a five year old son with cerebral palsy. Mathu’s son has received services from many 22

organizations, both locally and nationally. Mathu used to be a teacher, but had to stop working because of the needs of his son. Mathu’s wife is a pharmacist and the family has health insurance through her work, but their son also receives services through the Waiver Program, a state program through the Department of Human Services that provides services to people with disabilities. Their son goes to a local elementary school’s preschool program. He is in an integrated classroom where his classmates do not have disabilities. As a former teacher, Mathu has a lot to say about this. His son was home when I visited. Mathu set him up in one of his chairs and he kept himself busy, singing. The house was tidy, yet comfortable. The child’s needs were evidenced by the various pieces of equipment around the house. Respondent 4 is a 40 year old woman from Uganda. I refer to her as Aidah. She has a 12 year old son with pervasive developmental disorder, not otherwise specified. Aidah is a student at the university and her husband works there as a research librarian. Her son gets services through the Intellectual Waiver program. The family utilizes the consumer choice option through the waiver whereby they privately employ people to provide services for him. He, previously, had received services through one of the organizations in town, but they choose to employ their own workers now. They utilize a system at the university that allows them to post job announcements and they hire students in the fields that they need. Aidah’s son was at school during our interview and Aidah chose to have her interview at the university library, therefore I could not observe the home. Data Collection The strategies for recruiting respondents and the method used in the interviews is described below. The techniques used in the analysis of the data, and the resultant themes, categories, and subcategories are described in this section as well.

23

Respondent recruitment. In order to recruit participants for this study, I contacted local organizations that work with children with disabilities and explained the purpose of my research. I provided them with fliers to post and communicated with the coordinator of a support group for Latina mothers of children with disabilities that one of the organizations has. I was able to locate my four participants through these procedures. Interview methodology. The interviews were semi-structured, with grand tour questions pre-formulated based on background research, and then additional questions were asked in order to delve deeper into the responses of the participants. The interviews lasted approximately one hour each and were held at locations in which the participants felt comfortable. Three chose to have their interviews in their homes, while the fourth chose the library at the local university where she was a student. The grand tour questions included: 1.

How has your view of disabilities changed since you had a child with a disability?

2.

What has accessing services been like?

3.

How do you feel about the services your child receives?

4.

What are some stories about the services your child receives?

5.

Have you changed service providers? What was the cause?

6.

Do you think that being an immigrant has affected the services that your child receives? How?

7.

Have you connected with other parents with children who have disabilities?

8.

How has being a parent of a child with a disability changed you?

24

Data analysis. The interviews were transcribed and then read and reread many times. I then printed them out and cut them into segments according to themes that were emerging from reading them. I put the segments on notecards so they could be coded. The notecards were then sorted into categories. Upon initial review, twenty four categories revealed themselves, but upon reanalysis, categories were integrated and refined into nine categories from the interview. The nine categories were examined and out of them emerged three major themes. The first theme was Experience of accessing services. This theme introduced what it has been like for these parents to get their child the help that they needed. The second theme was Feelings about Services. The participants discussed why they had felt good about services and what they had found frustrating. The third theme that emerged was Factors shaping experience of received services. This theme addressed the mediating factors in why they feel the way they do about the services they have received. These emergent themes, their categories, and subcategories are shown below. 



Experience of Accessing Services o

Diagnosis

o

Receiving Services

o

Changing Services

Feelings about Services o

Positive Feelings

o

Complaints 

Communication problems



Provider unavailability



Provider inability



Organizational unwillingness 25





Money problems



Lack of collaboration



School problems

Factors Shaping Experience of Received Services o

Immigrant Issues 

Cultural effects



Racism



Language barrier

o

Home Country Situation

o

Community Support

o



Aspects of the community



Family support



Friend support



Support group



Additional support

Effect on Parents 

Parental changes



Work issues



Becoming advocates



Parental responsibility



Becoming researchers

Trustworthiness Criteria The criteria for trustworthiness in a qualitative study include credibility, transferability, dependability, and confirmability (Lincoln & Guba, 1985).

26

Credibility has to do with ensuring that the reader can have confidence that the findings are truthful. For credibility purposes, I carried out negative case analysis in order to incorporate all of the responses, even those that were different from initial theories. Transferability involves showing the applicability of the findings to other situations. Transferability was addressed by engaging in thick description. Thick description is a detailed account of what happened in the study, and makes clear the cultural and social relationships at work in the current study. I use thick description in chapter four’s analysis. Dependability refers to practices that show how the findings can be repeated and how they are consistent. Confirmability is a criterion having to do with neutrality. It aims to show that the findings reflect the respondents experience versus the researcher’s bias, motivation, or interest. Dependability and Confirmability have been addressed by the audit process that a university professor in the college of education provided during this research.

27

Chapter Four: An Analysis of the Data Upon analyzing the interview data, three themes emerged as the primary focus of the respondents. The initial theme that emerged was experience of accessing services. The categories that fit this theme were diagnosis, receiving services and changing services. The second theme was feelings about services. This theme revealed itself from the positive feelings and complaints categories and reflects the participants’ feelings about their access to and the quality of the services they receive for their child. The complaints category has the subcategories of communication problems, provider unavailability, provider inability, organizational unwillingness, money problems, lack of collaboration, and school problems. The third theme to emerge was factors shaping experience of received services. This theme addresses why the participants feel the way they do about the services they receive. The categories of immigrant issues, home country situation, community support, and parental effect were what this theme evolved from. The subcategories of immigrant issues were cultural effects, racism, and language barrier. The subcategories of community support included aspects of the community, family support, friend support, support group, and additional support. The category of effect on parents is composed of the subcategories of parental changes, work issues, becoming advocates, parental responsibility, and becoming researchers. This chapter discusses the results of the study using interview data to highlight the themes. Each theme will be addressed separately, and the connections between the categories will be discussed.

28

Experience of Accessing Services The data show that the respondents indicated that there were three different aspects of accessing services. There was the initial diagnostic procedure, followed by receiving services once they had the diagnosis, and finally changing services. Diagnosis. According to the parents, the diagnostic procedure is a time of mixed emotions. There is fear of hearing the worst, relief in having some answers and hope in maybe having a plan. Jazmin exemplified this subcategory because she had a traumatic time after the birth of her son. She was told that he was going to be delayed, but she was not told his diagnosis or the complexity of his condition. It was not until her son was two years old that she approached his neurologist to get the official diagnosis. She was becoming aware of the severity of his condition and she wanted to know what she could do. To her, it was a shock at first, especially because in Mexico when you hear of Cerebral Palsy (CP), it means that the person is going to be bed ridden or in a wheelchair forever. When she did research into CP, she saw that there was hope and that there were things they could do to help him. Elisa described her frustration in getting her daughter diagnosed. She said that they made the appointment in May, but could not get in until March of the next year. This was really hard for her to deal with, because her daughter was really struggling in school, and there was nothing they could do for her until they had the diagnosis. The school could not get anyone to come in to observe her daughter without it, even though they were certain she had autism. That being said, Elisa was worried about the effect the label could have on her daughter. She did not want her to be stuck with a label that negatively affected her progress in life. She recognized that there is a stigma associated with that label. Yet, she also knew that it would open doors for her. She knew that she could get help in school, and that 29

insurance would require the label in order for her to get the therapy that she desperately needed. Therefore, she was happy once she got the diagnosis and they could finally get her help. Receiving services. There was a range of experiences in receiving services. Elisa and Jazmin were very overwhelmed in the beginning. Jazmin had a lot of people coming to her house. She did not even know who they all were and what they were there for. There was a lot of paperwork and her English was not very good at the time. Jazmin said she was sent to many different organizations. Accessing services has been not too easy, to tell you. And the first thing we got was early access and a bunch of stuff, like people came to our house and I didn’t have any idea what it was. It was a bit overwhelming, with like five or six different people coming and I didn’t know what they were doing. But they did get me appointments, and into school. It was something new and hard to understand. Elisa and Jazmin stated that once the initial period passed, things calmed down. They started making connections. Networking became an integral part of their lives. At one of the therapy centers in town, there is a Latina mother’s support group. This group became a life line for Elisa and Jazmin. It was a place where they could get support, but also where they could learn about services and find out what to do for their children. Aidah had a bad experience with accessing services. She was not happy with the agencies in the area, so she chose to go with the Consumer Choice option through the state waiver program. Through the Consumer Choice Option, the state pays for the services that the child receives and the parents have more control over the services that their child receives. With this option comes the added responsibility of hiring, budgeting, and payroll. She did say that this option is not for the disorganized, because if you do not get your 30

budget in on time each month, you are not going to be able to reimburse your staff. The state will not pay if you miss the deadline. Aidah has to hire her own providers, so she posts her job opening on a university job site. Her providers are usually speech pathology, music therapy and therapeutic recreation students. Hiring students like this would not be possible if she was not in a university town where there are academic programs in those fields. She wants to provide them with work experience in their fields as well as get services from them. To her, they can mutually benefit. Aidah has been happy with the services that she has received, once she has had more control over who is providing them, what services he gets, and making sure that the providers are compensated appropriately. She expressed a need to have more say in how her child is treated. She wants her knowledge of her child recognized as important and valid. Changing services. Sometimes, when the parents feel like they are not being listened to, or their child is not being helped by the provider, the parent decides that a change in provider is necessary. As stated above, Aidah had this experience: “We parted ways, just not on very good terms. Unfortunately sometimes it has to happen. When I do, you are not meeting my needs. “ Mathu explained that he would have a goal and they would work with a provider really hard to reach. Sometimes they would reach the goal and have to switch providers because they did not think any more progress could be made. Sometimes a plateau would be achieved and they would need to change providers because they needed to find a different approach to reaching the goal. It was about results for him. If he was not seeing results, then they needed to try someone new.

31

Elisa also spoke about reaching a plateau. She said that they are not making any more improvements with the current therapist, so she is reevaluating what they need and trying to decide if they need to make a switch. Eliza said: “Unfortunately, at the clinic, they are great, but there are certain things they can’t provide, so we’re sort of trying to figure out what do we need to put her in.“ Jazmin talked about the different needs that her son has and how that has led to her changing service providers from time to time. She said that different agencies were better for different things. She also said that he would get attached to a provider, then they would leave, and he would not connect well with the new one, so they would change agencies trying to find a better fit. This happened over and over for them. Jazmin’s complaint about provider turnover was a common complaint with Elisa also talking about losing her favorite provider for her daughter. Having a good fit between the provider, the child, and the parent seemed to be very important for the progress of the child, and the contentment of the parent. Accessing services was not the easiest task for these parents. Even accessing diagnosis was challenging for some of them. While seeking services became easier over time, with practice, knowledge, and resources, it was a constant struggle of wondering if their child was receiving the services they needed or whether they needed to change providers in order to get better results. The parents showed how important it is for the parent to be involved with the whole process and to make their needs known. Having access to multiple agencies and to the university resources was important for these parents, because it provided flexibility when things were not working. That flexibility is not always available in other communities.

32

Feelings about Services The parents had mixed feelings about the services that their child received. Positive feelings were expressed, but more complaints were made about the services. The initial categories to emerge in this theme included positive feelings and complaints. The complaints category is made up of the subcategories of communication problems, provider unavailability, provider inability, organizational unwillingness, money problems, lack of collaboration, and school problems. Positive feelings. The parents had positive feelings about the services that they have received. Even Aidah was happy with the case managers that she has had, and their willingness to go to bat for her. She has also been happy with the students that she has hired. Elisa excitedly told me about a speech therapist that she had for a while. Her speech therapist, she was awesome. She would make all sorts of things. I’m sure they all do it, but this girl went the extra mile…she made a lot of stuff. She would be like, try this, try this, and all those little things. Elisa also spoke about how the speech therapist made her feel important and listened to. She said that the therapist would let her cry and she felt accepted by her. She told me how important making that connection with the therapist was, not only for her daughter, but also for her. Mathu had done a great deal of research about services, both in the United States, and abroad. He was happy with the services they he got for his son. He recognized that the services that we have in this community are better than what is available in many places around the world, even many places within the United States. He compared the services to what he had seen on a recent trip to China, and to what he knew about Michigan. He said that he has it good and he hopes that it continues that way. 33

Jazmin also felt positively about a lot of the services that she has received for her son. She was happy with the social workers she has had and with providers at both agencies that she has worked with. The participants often had positive experiences with people within the disability system, whether they were case managers, clinicians, or teachers. The participants were not always as glowing in their reports of the services that they receive for their children. The parents did have complaints about the system. Complaints. The parents had many complaints about their access to services and the quality of services that their child received. The complaints fit into seven sub-categories; communication problems, provider unavailability, provider inability, organizational unwillingness, money problems, lack of coordination, and school issues. A discussion of each is below. Communication problems. Jazmin has had some difficulties with nurses when she has had to take her son to the hospital due to his disability. She explained one situation like this, At the hospital, sometimes I get in fight with the nurses. Like sometimes they don’t want to give me the services. One time he need a surgery and because he wasn’t eating they were gonna put in a tube in his stomach. That was one of the time I was really mad because she didn’t want to give me the service. ‘Like, oh no, we cannot see him. He doesn’t need the tube’… He wasn’t eating for a week, so that was a time we got really, really mad, until my husband called some person in charge of the nurse and the doctor actually talked to us and said ‘sorry, she didn’t know what was happening and everything.

34

She was not sure if communication was an issue or if her status as an immigrant was related to the nurse’s response in this situation, she assumed that it was both. She was just very angry that her son was not getting the help that he needed. Provider unavailability. Another issue that came up was of adequate service provider availability. Aidah complained about the length of time she had to wait to get providers to come to her home, and the quality of the providers that came. When she worked with the agencies, she said that sometimes she could go months without people coming to help. The agencies would say it was because they didn’t have anyone trained to do it. She was frustrated that even when she would find someone for the agency to train, they would not train them. She had this to say: “I have done some of your work, brought you somebody, all you need to do is train them to your standards. So, that is a frustrating thing with agencies.” When the agencies did send someone to work with her son, she was not pleased with the limited amount of time that the provider was able to come. She said that it was not enough time for a relationship to develop and that there was too much time in between the appointments. She explained that her son needs to have a connection with a person in order for any real work to take place. Since he wasn’t given enough time with the providers, he couldn’t develop that relationship, and thus, could not get any therapeutic work done. Provider inability. Aidah also had problems with some of the providers the agencies sent her. One time the agency sent her a young girl who left a novel in her son’s backpack. She was aghast with the idea that someone would read while taking care of her son. She said that he was very wild at that time, and that the provider should never have been taking her eyes off of him. She also complained when they sent her a woman who was 300 pounds. She told me about how he would just take off, sometimes into traffic, if you

35

were not quick enough. She had asked the agency to send her someone who was fit, and they sent her this woman, a woman who could not protect her son. Organizational unwillingness. Another problem that arose was when a child plateaued, when they were no longer progressing in therapy. Agencies are in a bind. Insurance companies want to see progress in order to pay for services. They deny coverage if a child does not seem to be moving forward. In cases like that, agencies tell parents that they cannot provide services. This angered Aidah. Her son had been with an agency for years, then when he was 10, they said he was no longer improving towards their goals, so they could not work with him any longer. She did not agree with them. She thought he was still learning. They were working on speaking. She thought that if he could not verbalize, then they should be working on some other form of language. Aidah felt like the agency only wanted to work with kids who were less severe, kids who had Asperger’s. She said that the agency denied this, but she thought it was true. This is what she had to say about this: “Maybe it is your fault he plateaued, because you didn’t do what you needed to do to get him to the next level. So that was my disgruntled me dealing with them.” Aidah did not think that it was her immigrant status that made a difference in this situation. She thought that they were like that with Caucasian parents, too. She said that she had talked to other parents about it. Some of the issues that the parents talked about were regarding money. Some talked about inadequate insurance coverage. Money problems. Money was an issue that all of the respondents reported. Elisa explained her situation. She said that at her husband previous job, they had excellent coverage. They never had any problems, but since he changed companies last year, it has been a disaster. They are severely limited on the number of therapy sessions they get a year. Last year was not so bad, because he switched employers near the end of the year, but 36

despite that, they ran out of sessions and had to spend $90 dollars a session for a number of sessions. This year they had to drastically cut back on therapy, especially because they will be moving to California because of her husband’s work. She knew that the move would be stressful for her daughter and that she would need sessions once they got to California. She was certain that therapy will cost more there, so she did not want to run out. Elisa knew that she could request more sessions, but she was aware that the sensitive period for autism goes up to six years, and her daughter was six years. Insurance does not like to give extra sessions after that age. She was very worried about what was going to happen as the year would end up. Another complaint that Elisa had about insurance was that it did not cover social skills training or respite. She reported that you can only get those services if you have the waiver program or are on Medicaid. Elisa did not think that it was fair that because they could afford insurance her daughter was forced to go without needed services. Her daughter needed the social skills training, and she and her daughter desperately needed respite services. She and her daughter are always around one another and that can become overwhelming for both of them. Sometimes she needs a break, and with her husband in California, she does not get that break. Other’s had issues with government funding, such as the waiver program and SSI. Jazmin spoke about an issue that she ran into with SSI. Her son had been receiving SSI, but he received a trust fund that made him ineligible to receive SSI any longer. The family started getting billed for money they were given in the month that he received the trust fund. They did not have the money to pay it back. The family is not allowed to use the trust fund for anything other than equipment like walkers and wheelchairs. They cannot use it for any other services or needs. Therefore, they had used the money, not knowing that they

37

were going to be forced to pay it back. They tried to explain their situation, but they were not listened to. They eventually had to get a lawyer involved. Mathu had complaints about the distribution of funds. He does not like that he is not in control of how and where to spend the money. He would like to be able to pay himself for some of the services that he provides. He cannot work because of his child’s needs, but he cannot be compensated for that. He told me about how, in Sweden, parents are given a check every month, and they get to decide how that money is used. They can pay someone else to provide services for their child, or they can pay themselves. Mathu also complained about the limitations he has on the equipment he can purchase for his son. With the severity of his son’s disability, he needs multiple devices. He is only afforded one device every two years. He has had to buy the expensive equipment out-of-pocket. That means that he spent $3000 on a walker, and $3000 on a stroller. His son has now grown out of his walker, and needs a replacement that will cost $5000. He is lucky enough that his wife is a pharmacist and makes enough money that they can purchase what his son needs, but there are many expenses that make it hard. Money seemed to be a huge barrier for these parents. They wanted to provide the best services for their kids, and to make sure that they can have the best life possible, but they were not always able to provide that due to money constraints. Lack of collaboration. A lack of collaboration was a big issue to Elisa. She felt like the providers were not working together and that they were not communicating with her. She was disappointed with the choices available to her and the communication with and between the providers. She would have liked a meeting at the beginning of services that told her what her rights were and what was going to happen. She wished that she knew that she could speak up about the therapist that she wasn’t pleased with, and that she could have had a meeting with her and the other therapists working with her daughter. She felt 38

that if they could all meet, they could discuss where her daughter was struggling and where she was succeeding, and that would have helped her progress. Involving the parent in a group with the providers would allow the team to determine what was best for the child. This was an area where she thought some improvement could be made in order to improve access to services. She was not sure if her reluctance to speak up was due to her culture and the way she was brought up, or whether that was just a trait of hers. She leaned toward it being part of her culture. Regardless, she was certain that this was an important aspect of treatment that was lacking. School issues. Accessing services in the school district was another area that came up for some of the participants. Some had positive feelings, but others had complaints. Jazmin had glowing praise for the school where her son was. They drove across town to take him to school, because they were so pleased with his teacher and aides. They had moved since he started going to school there, and they did not want to sever the ties they had built. Mathu also had some good things to say about the school district. His son went to a new school in the district, and he had to work really hard with the teachers and administration to figure out what his son needed to succeed in school. Mathu was not sure what his son needed and the teachers were not either, therefore there was a great deal of trial and error until they figured out a system that worked. Mathu had some suggestions for the school district. He did not like having to take his son out of school to get the therapy that he needs. He did not like how that took his son away from school, his peers, and his learning. He wished that his son could get those services in the school. He spoke about wishing that his son could go to a school designed for kids with disabilities, with only kids with disabilities. He felt that the pressure put on kids with disabilities, in integrated situations, was too much. He stated that kids with disabilities 39

have a lot of pressure, and trying to compete with kids without disabilities is not fair to them and is detrimental. He wanted a school designed to help kids with disabilities succeed. Mathu spoke of another struggle he had with having his son integrated in a class with kids without disabilities. He said that the other kids did not fully accept his son. He witnessed the kids looking at and interacting in a weird way with his son. He said that his son complained about this, and it frustrated him. He did not entirely blame the teacher, as he recognized that there were 20 kids with one teacher and she had two kids with disabilities. It was chaotic sometimes. He did wish that there could be fewer kids, or more teachers, so the teachers could intervene more and try to work with the kids to be more accepting. Aidah also had some problems with the staffing at the schools, and felt like she has had to be aggressive in asking for what she wants for her son with the school district in order for him to get the services he deserves. I used to make surprise visits just to see the kid, and see if he was getting one on one. Sometimes they are telling me he is getting one on one, but they are bunched up. Sometimes you go in and you find out they don’t have enough adults. She told me about a rating system that determines what kind of money the district gets for your child, and the services that the child qualifies for. She said that if parents don’t know about this, the district tries to take advantage of it. She also said that parents who do not get involved, do not go observe, they cannot know what is going on with their child and they cannot ensure that their child is getting what they deserve. She told me that she had to be very vocal, going to the district offices and making sure that she was not backing down until her son got what he rightly deserved. She said that once the school district realized that she wasn’t going away, and that she was going to 40

make a lot of noise, her son started getting what he needed. She said that the district even started fixing issues before she knew they were there. She said that if you start talking about suing, the district will get right to fixing the problems. She did acknowledge that her accent sometimes made it hard for them to understand what she was wanting, especially when she got excited, but she made an effort to slow down, go syllable by syllable, to make herself understood. In order to increase accessibility of services for kids with disabilities, the issues of inadequate communication between providers, limited numbers and quality of training of providers, and funding problems need to be improved. It is clear that there are positive feelings and negative feelings that these parents have about the services that their children are receiving, and that the same parent can have both positive and negative feelings. The parents are not certain that their immigrant status has been the reason for their complaints, but Jazmin and Aidah both recognize that aspects of their culture have some effect on how they have to approach getting their concerns met. The parents make it clear that they have to be actively involved in order for their children to get what they need. Increasing the number of adults in the classroom and making therapy more available at schools are two suggestions that the parents had for making services better and more accessible. Factors Shaping Experience of Received Services The myriad of feelings experienced by the parents in this study have been mediated by a number of factors. My research found four factors that were present in the lives of the parents. immigrant issues, home country situation, community support, and effect on parents were the categories that emerged. The category of immigrant issues is composed of the subcategories of cultural effect, racism, and language barrier. The category of community support comprises the subcategories of aspects of the community, family 41

support, friend support, support group, and additional supports. The category of effect on parents is made up of the subcategories of parental changes, work issues, becoming advocates, parental responsibility, and becoming researchers. This section of the chapter addresses these four categories of factors, with their respective subcategories. Immigrant issues. This section addresses the uniqueness that these parents felt due to their immigrant status and their race. While none of them thought that there was a large effect because of their status, nor that anyone had intentionally discriminated against them due to their status, it became clear that there were some aspects of their coming from a different culture that had affected the experience they had with services. Cultural effect. When asked about whether her status as an immigrant had affected her access to services, Jazmin stated that sometimes she had to do more than parents who were not immigrants. She mentioned that she did not know how to use a computer or the internet, so she had to learn in order to do research to help her son. It was hard when she had to learn about how things in the United States worked. She did not know about the resources that were available to her or where to go to get help. Mathu did not think that his status as an immigrant had affected his access. His English was impeccable and he was well versed in knowledge about disability services here and abroad. He did not feel like he was treated differently. This may be a situation where culture has had an effect. He comes from an outspoken culture, where men are dominant and they learn to ask for what they need. He is also highly educated with a Master’s degree from a European university, whereas Jazmin is undereducated and according to her, comes from a culture where you do not speak up. Elisa had this to say about Hispanic cultural affect:

42

Hispanic people are embarrassed or what have you, they don’t speak up. I don’t know what it is, I know for me, I get stepped on, but after the fact I’m like ‘why didn’t I say anything?’ I beat myself up. I think it’s a learning process. I think I’m still trying to stick up for myself and my daughter’s helped me to do that, because I have to for her. Racism. Elisa spoke about experiencing racism. She told me about an experience with the school. A class had been started to teach children English. Without her knowledge, her child was to be included in this class. They had determined that she needed to be in the class, because she was Latina, and because she was having some speech difficulties. They had not approached Jazmin about this. She was really angry. Her daughter’s problem was not a problem of second language acquisition, they spoke English at home. He daughter’s problem was disability based. She felt like it was assumed that because her daughter was Latina, it meant she was having trouble learning English, so she needed to be in this class. She did not appreciate the assumption. She was told that even if her daughter was not to attend the class, she would have to go through unnecessary assessment, assessment that she felt would be anxiety producing to her daughter, and would in no way help her. Some racism Elisa actually found amusing, because she could catch people in their racism and make them feel uncomfortable about it. She said that providers think that they can take advantage of people who do not speak English, or do not speak it well. They think you are stupid if you don’t know English, which is just not true. She said that when she walks in the room, people think that she won’t know English. She looks Filipino, which confuses them. They will say things that they don’t think she understands, and then she will talk to them, in her clear English, and they will be aghast. She told me how much she enjoys that, but that it disturbs her that they act that way, and that she feels bad for the people who cannot understand what they are saying. 43

It is disturbing to think that this is happening. How many people are not getting the services that they need because they do not understand what is being said and providers are taking advantage of that fact in order to not spend the money to help those individuals. Language barriers. Jazmin said that her English was not very good when she started getting services. She said that it is hard if you do not speak the language. She reported that finding case managers and providers who speak English is hard. She acknowledged the availability of interpreters, but said that the experience is not the same when working with an interpreter, especially someone you do not know and have not previously worked with. She now goes with her friends from the group to their appointments if they don’t speak English, so that she can translate for them. At least they know her and have had her translate for them before, so the experience is better than if they worked with a stranger each time. Immigrant status did have some effect on the service provisions that their children received. , Even if overt discrimination may not have been the cause of difficulties that may sometimes be the case. Be it because of cultural differences, racism, or language difficulties, being an immigrant did cause difficulties at least for some of the participants. For some of them, it effected their feelings about the services they were being provided. How things are in their home country probably had more of an effect on how they feel about the services they are receiving. Home country situation. Two of the mother’s spoke about what the services are like back home for children with disabilities like their sons. Their experiences going home to their countries of origin since their children with disabilities were born have shown them how different their children’s lives would be if they were still home. Jazmin spoke about people pointing and staring at her son in Mexico, and about the use of terminology that is like “retard”. She even 44

had family members use the word and had to teach them that that was not an appropriate word. Jazmin talked about not seeing kids with disabilities in Mexico. She would have mother’s come up to her when she was walking with her son. The mothers would tell her about their children with disabilities back in their homes. In her old neighborhood, she said that around 10 or 12 parents would approach her to talk about their children, but she would never see the kids. When I asked her why she thought they did not bring them out in public she said that she thought that they were ashamed. She explained that there is a lot of stigma in having a child with a disability. Jazmin also thought that it had to do with access to appropriate equipment. The mothers would ask her questions about her son’s wheelchair. They wanted to know where they could get one. One mother told her that her 10 year old son had an adult wheelchair that did not have any chest supports to hold him upright. They could not go out and about with a wheelchair like that. She said that if you are not rich in Mexico, then you cannot get the services or equipment that you need. Jazmin told me about her experience accessing services down in Mexico. She did not recommend accessing services there. Even I tried to take him to therapy. It was a mess. Over there, the way they treat the kids is not the same. They grab the kids like they’re a little dog. And they say ‘you have to move him like this, and that, and boom’ kinda rough, so I went just one day and I said, they see a lot of people there, but no. Not my son. Jazmin was not pleased with the experience and truly realized how good they have it in the United States. Although she missed Mexico, and the nice weather, she did not want to live there where her son would not be treated well, and would not have the opportunities

45

that he has here. This was a big reason why she was pleased with the services that she receives here, even though it was difficult at first with the language barrier. Mathu spoke a little bit about Syria. He said that Syria is a developing nation with all the problems of a developing nation. He hadn’t been to Syria in quite a long time, but did remember them having some institutions for people with disabilities, but did not think that they had the money and access to all of what they needed. Since I interviewed Mathu, the war in Syria has escalated. There are now so many children with acquired disabilities, and the services are just not there. I wonder what he would have to say now. He did recognize that his son was better off here than back in Syria. Aidah spoke extensively about disability in Uganda. She informed me about the lack of programing for disabilities in Uganda. She reported that they do have a school for blind students and a school for deaf students. She thought that she remembered there being a school for kids with intellectual disabilities, but did not know where her son would go. None of those schools were really appropriate. Aidah indicated that people are beginning to learn about autism, but she thinks that they are run by people trying to take advantage of parents. She talked to parents who had sent their kids to schools that had been erected to work with kids with autism. These schools are out of reach for most parents, because they can cost $500 for three months. Way more than most can afford, but rich people can afford it, and if the school can get 20 kids at that price, they are doing well. She said that the schools are little more than daycare. They feed the kids and give them crafts to do. Academics are ignored, and there are no individual plans created to help each child. Aidah noted the huge need for services in Uganda. She said that the government does not seem to care. They care if you are in a wheelchair, but your mind still works well.

46

They can put you to work, but if your mind does not quite work right, then you are of no use to them. For many kids like her son, they are tied up in the house because the neighbors would talk if they knew. Aidah said that there is a huge stigma. She said that when she went out with her son, people would look. Some would ask questions. She preferred if they asked questions rather than just stare. She could inform them about his disability and they could learn. The stigma would decrease. That is what happened in her parent’s neighborhood when they visited, people stopped being so judgmental. Aidah spoke about her experience as a child in Uganda. She remembered a woman in the area. Back then, she thought the woman was crazy, but looking back, she thinks the woman had autism. The woman’s nephew still lives in the area, and he agrees. Aidah talked extensively with this man. He was great with her son, and her son loved him. This man was so comfortable with her son and was never bothered by any of his behaviors. She figured that since he had grown up around his aunt, he was comfortable with people who behaved differently. Aidah had one last topic she wanted to mention about Uganda before we went on to a different subject. Aidah revealed details about African witchcraft. She explained that a lot of people thought that disability was caused by witchcraft, especially if the disabled child was a boy. Boys are more valued in Uganda, and if, in a family, one wife has a boy and he has a disability, the co-wife would be accused of doing witchcraft to harm the boy. The cowife will have done nothing, but it will be believed. She said that many people would come to pray for her son, to get rid of the witchcraft. She never felt like she could object, even though she did not believe in it. They would also tell her about traditional medical healers whom they thought could cure him of his ails.

47

From their experiences visiting home, both Jazmin and Aidah were certain that their children were much better off in the United States than they would have been back in their countries of origin. Mathu was sure that his son was better off, even though he had not been there in a while. Elisa did not know enough about home to be able to answer, but she expected that it was better here. The parents’ beliefs about services in their countries of origin and their comparison to the services they receive here is a big reason why these parents have positive feelings about the services they receive here. Community support. The parents indicated that community support was integral to their wellbeing and their ability to access services and help their child. That community support took a number of forms; community they live in, family support, friend support, support group, and additional support. Those five sub-categories are discussed below. Community they live in. One of the major factors effecting how the parents felt about the services they were receiving was community support. There were community factors, specific things about this particular community that effected how they felt, and the support they were able to find and develop around them had great effect on them. Jazmin used to live in a small, nearby town. She said that there were no resources there. She had to drive to the university town in order to get any services. There were a lot of Hispanic people, but not a lot of people with kids with disabilities. She likes that she can meet more people in this community and that she can get the resources she needs. Elisa spoke about the availability of resources, especially the lending libraries at two of the agencies. She is able to get books that are just not available are public libraries. She does not have to buy a book without looking at it to see if it is actually going to be helpful. She said that in other communities, that is what you would have to do.

48

Mathu thought that his community was great. He felt like there were many immigrants here to talk to and that they were accepted. He also felt that this community was really good for people with disabilities. He said that in other places, especially where the economy was not as good, the services were not as good. He compared our area to struggles he knew about in Michigan. To him, this community was much better. The parents realized that living in our community had made it easier to get things for their children than if they lived in other parts of the state and even in other parts of the country. They also acknowledged that a major part of their experience had to do with support. They found different sources of support. Family was important for some of them, and friends and teachers. Some found support at one of the agencies through their support group and a list of other parents who were willing to talk. Family support. Jazmin and Aidah spoke about the importance of family support. Jazmin had her mother and brother living at the house along with her husband and her and their three children. Her mother was a big source of support, as she really did a lot of the hands on work with her son. Her mother was compensated by the waiver program that her son was a part of. That was a real help to the family. Aidah said that she is naturally a strong person, and that being a child of a civil war in Uganda had strengthened her even more, but that having her sister living about 4 hours away was a great comfort. She said that they talked every day. Her mother was also able to stay with them on a regular basis, so she was able to get help from her. Having that family support really helped her deal with the stress of having a child with a disability. Friend support. The two Latina mothers talked about the importance of friends. Jazmin said that she gets a lot of help from friends. Being a parent of a child with disabilities can be very isolating, but if you have friends to support you, it can be easier. Elisa said that her friends have given her recommendations and that she has one friend with whom she 49

texts frequently or call. They encourage each other to speak up for their children and their needs. They let each other know about what services they can ask for and how to go about getting them. Right now her son is having trouble transitioning from preschool to kindergarten. She’s where I was last year, so I’m like, ‘do this, I did this. Tell her this and that. Make sure you just keep repeating like a broken record’. I try to defuse and let her relax. And then she’ll do the same for me. So, I think having a parent with kids going through the same things is huge. We can support each other. Support group. One way that the Latina mother have found support and made friends is through a support group that one of the agencies has for Latina mothers of children with disabilities. Jazmin found a lot of her friends through the group. The group provides her with the opportunity to talk about what is going on in the family and she feels relieved for a while. Elisa told me about the structure of the group. Part of the group is educational. The leader brings in someone from the community to talk about services that are available. Another part of the group is social. They eat, listen to music, and talk with their friends, all while their children are being taken care of. Elisa also talked about being able to vent, and how in her regular life she is not able to do that because she is always with her daughter. She likes that it is an opportunity to talk about the important things, but also about things that are not important. Because her husband is gone so much of the time, the group offers her an opportunity to be with adults. She gets dressed up and has fun. She appreciates the outlet. In fact, Elisa is very anxious about her move to California, in part because she will be leaving the group and her friends. She will be losing the support that she has become accustomed to. She does not know if anything like that will be available where she is going. Her husband does not understand. 50

My husband says it’ll be fine. It’s great. But if you’re a woman, you know that your girlfriends are everything. I’m glad that he’s my friend and my husband, but he’s not a girl. No, he won’t know, and I won’t be able to tell him like I speak to my friends. It’s gonna be a little tough in the beginning without that group. Aidah is jealous of the Latina mothers. She would like to sneak into their group, but she does not speak Spanish and she would be lost. There is another support group for other parents that she used to attend, but she said it was much shorter and the social connections just weren’t developed like her friends in the Latina group have developed. Additional supports. Mathu told me about another way he was able to find support through one of the agencies. The agency keeps a list of parents who are willing to talk to other parents about what they have gone through and how they have successfully navigated the system. He said that talking to other parents who had been there was really helpful. He learned that his son could have a bright future like any other kids, they gave him hope. He felt a sense of relief after talking to these parents. He learned that life was not coming to an end. He was so appreciative of the help that he got from those parents that he put his name on the list in order to help other families that may need it. Elisa also told me how a teacher had been her first support. The teacher had a child that had a disability, not the same as her daughter, but she was able to point her in the right direction, and calm some of her initial fears. It is clear that the support that these parents have received has effected how they have survived their child having a disability. That support has helped them access the services that they need and to navigate the disability system. That has helped them feel more positive about the services they receive and their ability to access them. The Latina mother’s group has become a big asset in this community and the mothers have come to 51

depend on it for help getting the services they need, but also for the emotional support that they need in order to help their kids as best they can. That is evidenced by the fears that Elisa is having about moving and leaving behind that support network, and by the jealousy that Aidah has in not being able to be a part of that group. Effect on parents. In this section I discuss how the experience of accessing services for their child with a disability has changed the parents and what they have seen develop in themselves that has helped them navigate the system and affected the perceptions that they have about the services that their children receive. Effect on parents is split into the sub-categories of; parental changes, work issues, becoming advocates, parental responsibility, and becoming researchers. Parental changes. The parents noted some personal changes that had occurred for them because they had their child with a disability. Aidah and Jazmin both noticed that they were much more patient. They became less judgmental because of their experience and more understanding. They had more compassion and were more sensitive towards what other people were experiencing. Elisa recounted an experience she had with her daughter at the mall and how she reflects on that when she sees other children acting up. I’ve gone to the mall with her, when I didn’t know what she had, and she had an incident. She had a meltdown that lasted almost an hour, and people were staring. She had dropped some popcorn and it sent her into such a meltdown, and there was nothing I could do to get her to stop. So, when I go out I think I am not so judgmental anymore. It’s actually made me more of a better person, I think. Elisa genuinely thought that she was a better person because of this experience. She said that she can feel good about her life and be appreciative of the things it has brought 52

her. This was something I was not all together prepared to hear. The genuineness of her appreciation was surprising. Jazmin spoke about some troubles they had in the beginning. They almost got divorced because of the stress they were under. She would cry whenever people asked her about what was wrong with her son. Her husband was working all the time. He was trying to help, but it was really hard. So they went to counseling. She never thought she would be the type of person to get counseling, but it saved her relationship and they are doing well now. She also noted that over time she saw more people with kids with disabilities and she realized she was not the only one. She feels like she is a stronger person than she ever was before. Jazmin said that she can see the positives now. She can see the blessings that her son has brought to her life. She watches her younger son have so much compassion for his older brother. He is only two, but he tries to help his brother eat and play. She enjoys watching the interaction and knows that the younger one will be a better person because of this experience. She said that her family would not be the same if her son did not have his disability. She’s not sure that that would be a good thing. In having a child with disability, Jazmin thinks she has become more prepared to take care of her other children. She is able to recognize what is ailing them, because their brother has been sick with everything. She knows where to go to get them help. The two year old is very hyper, and she is trying to get him into Head Start. She knows where to turn to get that to happen. Without her experience with her older son, she would not be prepared to get her younger son the services that he needs. Elisa is also able to take joy in the little achievements she sees in her son, even if it means having holes in her walls. Before he could not sit, now he’s sitting by himself on the floor. And he walks with his gait trainer. He cracks the walls with it, you see the bunch of patches in 53

the wall. Before he didn’t do anything. Every progress you are like, ‘oh my God, that’s amazing’. The parents have had to sacrifice a great deal for their child with a disability. Jazmin always thought that she was going to live the rest of her life in Mexico, but she says that he is better off here. She kept emphasizing that she loved her kids, but she did want me to know that her life is not what she thought it was going to be like. She doesn’t have time for herself. She doesn’t go out. She and her husband get out maybe once a month to go to a movie. Work issues. Even though he had been exposed to disability before through work, the experience of having a child of his own with a disability has changed Mathu. He has had to sacrifice a lot, especially work. Mathu had been a teacher. He had to stop being a teacher in order to care for his son. His goals changed a lot too. At the time of his son’s diagnosis, he had a big project before him. He was going to do a big music composition that he had been dreaming about for much of his life. He had to set that aside so that he could take care of his responsibilities at home. His goals now revolve around his son and what is best for him. He wants his son to have a better future. Jazmin also spoke about work sacrifice. She spoke about being 27 and not able to work. She had to be prepared to take him to the hospital when he got sick, which was frequent. She had to take him to therapy and drive him back and forth to school. She said that it changed how she saw herself, because these were her prime working years, and she was not doing that like her friends who did not have a child with a disability. Her life revolved around her son and making the best decision for him. Becoming advocates. Part of making the best decisions for their children was that the parents learned that they had to become fierce advocates for their children. Aidah spoke about having to be very vocal for her son. 54

If you don’t, they will just give you whatever little they give you. From an immigrant perspective, if you are coming from a country where there is zero, and you get a little, you are happy to get that, but is that the absolute most that you could get? No. You just are grateful that you are getting something anyway, but you have to speak up in order to get the best for your child. Aidah stated that she knew that she was right when she demanded that her son get what he needs. She was not going to keep quiet. She has friends with language difficulties who are not always able to express themselves fully, and people will even tell her that they cannot understand her because of her accent, but she will make herself understood. She tells them to listen really hard. She will list the most important points. Elisa and Jazmin also said that they had to advocate for their children. Elisa spoke about a speech therapist that she was not pleased with. She had not spoken up about her discontent. She felt that that was because she was Hispanic, because they take what they get, even if they don’t like it. They don’t speak up. She learned that she must speak up. It was crucial for her daughter that she did. She eventually said something about the speech therapist, but wished that she had done it much earlier. She thought that her daughter would have been speaking sooner had she spoken up sooner. Now she makes sure to tell the other mom’s in the Latina mother’s group that they must speak up for their children. If they are not happy with something that is going on, then they must make that known. That is the only way people are going to know that something needs to change. This has been a big shift in her life, and now that she knows that she must speak up, she does, and she is much happier with the services that her daughter receives. Parental responsibility. Mathu had something to say about parental responsibility that went beyond just advocacy, when it comes to helping your child with a disability. He said that it is a parent’s duty to speak up. He said that no one will help you if you don’t ask 55

for help. He told me that the system offers everything that you need, but you have to ask for it. He believed this about the language area, too. He told me about interpreters being available to help people with language barriers. Becoming researchers. The parents all told me that an important part of their ability to take care of their child’s needs, and to find the services they required, was research. Jazmin told me about the importance of using the internet to search for information on her son’s disability, to search for services, and to search for equipment that he may need. She told me about how she has become proficient in getting what she needs from the university now, because of all her practice on the internet. This was not easy for her in the beginning. When she started getting services for her son, she did not know how to use a computer, let alone the internet, but she learned, and she knows how to use it as a resource. Aidah also uses the internet to find information, although she said that she often looks to her husband to do the research, because that is what he does for a living. She said that they try to split their responsibilities based on their strengths, so that neither of them is doing all the work, and each task is being done by the one who is good at it and enjoys it. Her husband reads the new information and then relays to her what he thinks she should read as well. Their system works well for them. Elisa does a great deal of reading as well. Her friends will recommend books, or she will find them online and she reads and reads. She wants to stay up to date on any new information that comes out that may possibly help her daughter. The changes that the parents have gone through, including the loss of work, becoming advocates for their children, realizing what new responsibilities they have, and becoming researchers in order to help their children all have played a part in how they feel about the services that their child receives. 56

The question as to what had affected the parents’ feelings about the services that their children receive was answered in this section of the chapter. It was shown that immigrant status did have a small effect on their experience. A large affect came from their experience in their home countries. They were able to see how different their child’s life would be if they were living in their country of origin. They could see that they were much better off here. Community support had a big impact on how they felt. The parents felt that the support they got from friends and family was crucial. And finally, the parents changed a great deal after they had their children with disabilities. Those changes affected how they felt about their services.

57

Chapter Five: Discussion and Recommendations In response to the four research questions proposed in Chapter One, this chapter sums up what my analysis found. I discuss how my findings support the barriers to care that the World Health Organization has presented, and UNICEF is concerned with. I discuss the theories that emerged from the data, make recommendations based on the data, and propose future avenues of research. What is the experience of accessing services for an immigrant parent with a child with a disability? The first question pertained to the experience of accessing services. The parents had both positive and negative experiences of accessing services. They related positive feelings about some of the providers that they have worked with, and negative experiences with diagnosis and dealing with agency bureaucracy, such as having inadequate staffing and training of staff, as well as organizations only wanting to treat people who are less severely affected by their disability. Other complaints that they had about accessing services included lack of collaboration and communication between parents and providers. They also reported having problems with school. Some of the parents had initial difficulty accessing services, but find that they are generally pleased now. What has mediated the experience of receiving services? The mediating factors in the experience of accessing services included, on the negative side, racism that they experienced, language barriers, and cultural factors that kept them from speaking up about their needs or discontent. Mediating factors on the positive side included reflecting on what their experience would be like if they were living in their countries of origin, and having strong support systems, especially the Latina support group. These two factors seemed to have the strongest impact on why they were pleased with the

58

services that they received. The support group was integral in the survival of the Latina mothers. This group is a gem in the community. A factor that had both negative and positive effects was the parental change factor. The parents felt like they had to make many sacrifices because of their child, including personal goals and work, but some of them felt that the changes had made them better people and they were appreciative of the experience. They were able to see the blessing they had in their child, despite the struggles they had been through. In what way does the experience in their home country mediate their experience in the United States? When they compared the situation in this community to the situation they would face back home, they recognized that their children were far better here. Two of them had returned to their countries of origin with their child and were able to see the lack of resources and the inhumane treatment that their children would receive. They felt blessed because of the services that they were able to receive, even if it was not always smooth and they had complaints. It put everything in perspective for them. What could make the experience of getting services for their child more accessible and more helpful for both the parents and their child? For the final question of improvements to the system, the parents spoke of having more bilingual providers, having better collaboration between parents and providers, and having better staffing in the agencies and schools. They also spoke to the difficulties of getting their children diagnosed. Faster diagnosis is important for getting children the services that they need. The longer a parent has to wait in order to get the diagnosis, the longer the child has to wait to get the help they desperately need. The beginning time in the process of getting services, as it stands right now, is chaotic. This is a stressful time for the parents and the child. The parents felt overwhelmed and under-informed. They 59

recommended having a meeting that would lay out what to expect, what their responsibilities and rights are, and what their options are. The parents wanted to be respected more. They felt that they knew their child and that they should have more say and control over what happened with their child. They wanted to be listened to. When they were listened to, they felt better about the services that they were receiving. Some of them felt that their culture was not being taken into account, and that cultural traits were keeping them from speaking up. They wished that providers would have recognized this. Emergent Theory

Figure 2. Perceptions of the Experience of Accessing Services. Describes the factors leading to positive and negative perceptions of accessing services.

60

Figure 2 shows the parallel theories that emerged from the data. The theories are that parents had both positive and negative experiences accessing services. One theory is that certain factors led to parents having positive experiences accessing services. Factors leading to positive experiences were positive feelings that stemmed from having good provider experiences, community support that included family support, friend support, the support group, additional supports, and the unique aspects of the community where the study took place. The fact that it is a university town, where many disability agencies are located, and where there is a great deal more diversity than the rest of the state, is a major component in the experiences of the respondents. The parents compared their situation in the United States to the situation their child would have back in their country of origin. They recognized that their child was better off here, receiving services that would not be available back home. A final factor that led to positive experiences was effect on parents which was composed of parental changes that the parents felt had improved them as people, and becoming advocates and researchers for their children. A second theory developed addressing the factors that led to the parents having a negative experience accessing services. The factors that led to negative experiences were accessing services which included negative experiences with diagnosis and receiving services, and having the need to change service providers. Another factor was immigrant issues which stemmed from the racism they experienced, how their cultural background had negatively affected the process, and language barriers that caused difficulty in communication. The effect on parents that led to negative feelings was that the parents were not able to work because of their child’s status and that affected their perceptions of themselves. Finally, the parents had numerous complaints about accessing services that included having communication problems, providers not being available to provide services, providers being unable to provide appropriate services, and organizations not 61

being willing to treat children who are slower to make improvements. Additionally, the parents were frustrated by money problems that included insurance, the waiver system, and accessing equipment. Parents felt that there was a lack of collaboration between the parents and the providers. They wanted more input and more respect in the treatment setting. They also wanted the providers to collaborate with one another better. Lastly, there were a great deal of complaints with the school district and its treatment of their child and them as parents. Most of the parents did not feel as though they were overtly discriminated against because of their status as immigrants, but some of them could see that their culture had an impact on how they went about accessing services or speaking up for their rights, and some did feel as though they had experienced some racism. Global Barriers to Care There are barriers to accessing health care for people with disabilities world-wide. The question is whether those barriers are relevant in the United States, and more specifically in the community in which this study took place. The 2014 World Health Organization report on disability and health describes four barriers that lead to unmet health care needs for people with disabilities (World Health Organization, 2014). The results of this study support the findings in the 2014 World Health Organization report and show that three of the barriers are present in the community in which this study took place. The first barrier discussed in the report was cost (World Health Organization, 2014). The parents emphasized this barrier in this study. The parents were frustrated with organizations’ unwillingness to treat because of reimbursement issues, insurance companies not covering needed services and providing inadequate numbers of sessions, social security money issues, and the waiver system with regards to cost.

62

A second barrier includes having limited availability of services for people with disabilities (World Health Organization, 2014). If the services are not available, then it is impossible to access them. In this study it was evident that there are a number of organizations providing services, but that they have difficulty staffing their positions, be it because of staff turnover or limited job applicants. Sometimes the services are available, but the providers do not have the training, skills and knowledge to provide the services in an appropriate manner. This is a third barrier. Aidah discussed this factor. She was frustrated with an organization and the providers they were sending her. She thought that they lacked skills and were inappropriate for the needs of her son. Lastly, there are physical barriers to accessing services (Gray, Gould, & Bickenbach, 2003). In some places hospitals and clinics may be inaccessible, such as having steps and narrow doorways. The parents did not mention this barrier as an issue that they faced during the interviews for this study. Rationale for Concern over Barriers in Early Childhood Many childhood disabilities can be identified or predicted during Early Childhood. Early identification of developmental delay is important for determining if the child needs intervention and whether they may have a disability (UNICEF, 2012). Early Childhood Intervention supports children who are at risk for developmental delay and works with children who have developmental delay or disabilities in order to encourage appropriate development for the child (UNICEF, 2012). In my study the respondents noted that it took a long time to get the diagnosis for their child. Because it took so long to get their diagnosis it delayed their entry into services and intervention. There are four rationale which the World Health Organization & UNICEF lay out for concerning ourselves with early childhood development (UNICEF, 2012). The first is a 63

human rights rationale. The Convention on the Rights of the Child and the CRPD both state that children with disabilities must be given the right to develop as much as possible. They recognize that the environment plays an important role in underdevelopment and exclusion and early childhood interventions work to make the environment as conducive to the development of the child. In the United States, the ADA and IDEA both serve to protect the rights of children with disabilities. The parents had complaints about having access to appropriate services that would allow their child to develop as much as possible. One such complaint was about appropriate staffing at school. The parents felt that the lack of adequate staffing had a negative effect on their child’s ability to learn and develop. Second, early childhood development affects the child’s ability to become productive during adulthood. This creates an economic rationale for intervening during early childhood. Future costs will be decreased if the appropriate interventions occur during early childhood (UNICEF, 2012). Third, there is a scientific rationale for intervening in the early years. Evidence shows that the critical first three years of life are a time with rapid development which lays the groundwork for future development and growth (UNICEF, 2012). A focused energy during this time period will increase the ability of a child with disabilities to survive and flourish in society (UNICEF, 2012). Elisa reported that the critical period for the autism spectrum is between one and six years old. After six it is thought that the child will make far fewer improvements. Because it takes so long to get a diagnosis, it is possible that children may not be diagnosed until after that critical period, thus decreasing the likelihood of improvements. Fourth is a programmatic rationale. Early childhood development programs increase survival, growth and development (UNICEF, 2012). Effective programs can include

64

providing parent interventions, early detection of delays, improvement of development, prevention of abuse and neglect and making the child ready for school (UNICEF, 2012). These rationale for providing early childhood development programs for children around the world show that these programs can work to decrease the negative effects of developmental delay on children and increase their participation in society lifelong. It is a problem if families have to wait an extensive period of time to get their children diagnosed. This hinders the progress of the children, and the ability to get the children into therapy. It delays the support that family members can get, thus increasing the likelihood for abuse and neglect. Recommendations I developed recommendations, based on the analysis of the data and the literature search, for service providers, the state Department of Human Services, school systems, and disability advocates. These recommendations would serve to improve the experience of accessing services for immigrant parents. Service providers. The people who provide services to children with disabilities, and the organizations for which they work, strive to provide the best services that they can for their clients. That is often complicated when they are serving people who are immigrants. Although cultural sensitivity is becoming more of a focus in the education of new providers, it is important to note that providers continue to struggle in this area (Harry, 2008). An important area to focus on in cultural sensitivity training is the examination of personal beliefs, values, preconceptions, and prejudice (Harry, 2008; Welterlin & LaRue, 2007). It is upon this examination that the other recommendations can be based. It is critical to be aware of prejudice before racism can be prevented. Harry (2008) also suggests that an introduction to racial privilege and the importance of power relationships 65

would go a long way in improving the services provided to immigrant clients. In order to do that, she suggests that an exploration of multiculturalism and the historical treatment of minorities in the United States take place. These recommendations are mirrored in the suggestions for improved services that the respondents in this study had. Some of the respondents felt that their culture was not being taken into account, and that providers did not recognize when cultural traits were interfering with communication. These cross-cultural misunderstandings are a barrier to collaborating with immigrant clients (Harry, 2008). That being said, the Latina mothers appreciated that they had the support group that is provided by one of the organizations, and the Ugandan mother was jealous of it. Having culturally based support groups are an important step in supporting immigrants and minorities. This was reflected in the literature as well, in the study of a Chinese support group (Tam & Poon, 2008). That study found the support group to be very helpful for the participants and their access to services. Organizations and providers would be better served if they developed support groups, similar to the Latina one, that were intended for other cultural groups. In addition, organizations should provide better training to staff on cultural sensitivity. Providers need the opportunity to examine their values and prejudices in order to prevent culturally misinformed actions and racist actions. Getting this training in school is important, but being able to discuss real life situations they have dealt with provides more depth and reality to the training. If this training went on in organizations, it would allow providers to reflect on current and past experiences and allow them to grow from the analysis. It is important for providers to realize that they may have different expectations, practices, and needs than their immigrant clients (Lindsay, King, Klassen, Esses, & Stachel, 2012).

66

In putting multiculturalism into place in practice, an ecocultural approach is recommended where the social and cultural environment is taken into account in order to provide the “best fit” treatment of each client (Welterlin & LaRue, 2007). A strength-based approach, where the emphasis is placed on the positives that a client brings to the situation, is important for the treatment of all clients, but even more so for immigrant clients (Welterlin & LaRue, 2007). A barrier to collaboration with immigrants is the practice of viewing immigrants from a deficit view (Harry, 2008). When providers can only see the negatives in a client, it is difficult to work with them. Therefore a strength-based approach could work to overcome the tendency to think in a deficit manner. Another area that would improve services would be in hiring practices. Having more diversity in hiring would help. If clients could work with someone with similar cultural values and attitudes they would be helped. It would also help if they spoke the same language. In the community in which this study took place, the Latina mothers complained about the lack of Spanish speaking providers. Jazmin discussed her difficulties when she first started receiving services. Her English was not as good, and that caused problems. The Latina mothers now serve as interpreters for their friends who do not speak English. They said that it is still difficult when working with interpreters. Similarly, the parents indicated a problem with staff turnover. While this cannot be entirely prevented, this is an area that can be improved by providers. Aidah reported that the staff that the organization she worked with were not adequately paid. She felt that this led to much of the turnover that she experienced. She also felt that the providers were not respected by the organizations for which they worked. Aidah, with the help of the Consumer Choice Option was able to pay her providers better and treated them with respect. She indicated that she had better staff turnover rates than she ever had when she was dealing with the organization. She realized that work with children like her son was 67

difficult, stressful work, and that in order to receive the best treatment, respect and gratitude were needed in regards to her providers. The organizations would be better served if they paid their staff better and respected them more. With that technique, there would be less turnover and less training expense that comes with having to hire new staff so frequently. Collaboration between providers and with clients is a big area that the parents discussed. They felt like the providers were not communicating with one another well enough, and that communication with them was lacking. Elisa went as far as to recommend that meetings be scheduled where the providers and the parents could discuss the progress of the child and what the current goals of each of the providers and parents had for treatment. Elisa mentioned how this happens in the school district, but that it does not occur with the treatment team. Harry (2008) believes that collaboration is a critical element in the treatment of immigrant clients. This collaboration is important for all clients, but it is even more important with immigrants because of the cultural differences and the power relationships. Department of human services. The Department of Human Services in the state in which this study took place could also make some improvements. Of important note, the cultural competency, diverse hiring, and staff turnover recommendations for providers are also of importance with the Department of Human Services. Some of the money problems that the parents suggested are related to the Department of Human Services. There were complaints about the waiver system and parents not having enough control or say over what their child received. Also, the case managers need to be trained on how to help parents access services and equipment for

68

their child. If the case managers knew how to find programs to cut down on expenses, they could decrease the money problems for their clients. For the sake of families who have insurance, which lacks coverage of social skills training and respite services, a program should be put in place that could help those families get the services they need, that they are not able to afford over and above their insurance costs. School system. The parents spoke about their responsibility to become strong advocates for their child in order to get their child the services he or she may deserve in the school district. The ability to become advocates came easier to some parents who were from cultures where that is the norm, whereas for the Latina mothers, this was a much more difficult process for them. It would be helpful if the school district made advocating for their children easier. Even the outspoken parent that she is, Aidah had difficulty making her son’s needs known and getting the school district to follow through on their responsibilities. She even had to resort to threatening to sue the school district if they did not provide her son with the services he is due according to IDEA. It would be difficult for someone who is not used to speaking up for their child to insist of their child getting what they need, and even going as far as threatening to sue. The school district needs to become more accessible to parents of all cultures and overall, more inviting to parent comment and suggestion. The school district needs to ensure that staffing numbers are appropriate. Some of the parents commented on how their child was not appropriately staffed and how that was detrimental to their education and development. It is critical that they adhere to IDEA and what is best for the child, rather than reducing costs.

69

Disability advocates. Disability advocates work toward system change. They focus on assisting people in accessing services within the current system, but also in working to make the system more attuned to the needs of the people and in protecting the rights of the people. Advocates work in many ways in order to encourage system change, such as letter writing, direct legislative lobbying, blog writing, and legal protection. Advocates work to get knowledge out to the people needing to learn it. Disability advocates need to be aware of what adds to the burden of immigrant parents of children with disabilities, and what helps them. That way they will be able to advocate for those parents and the children who need the services. Immigrants are an often overlooked field in disability advocacy. It was not even until the 1990s that minority needs were even beginning to be looked at (Wright & Leung, 1993). At this point in time, it remains difficult for individuals to immigrate to the United States if they have a disability (Weber, 2015). The rules about entry have been liberalized to some extent, but it remains difficult for certain disabilities, including mental disability (Weber, 2015). With the liberalization of the rules, come more immigrants in need of services. Those needs have only recently been realized. It is the task, now, for disability advocates to start doing work on the unique needs of immigrants. Advocating for the needs of immigrant parents of a child with a disability also brings with it unique needs. This study can educate advocates on some of those unique needs and inform their advocacy techniques and topics. Advocates need to work to change some of the burdensome practices that have affected the parents in this study. First, for the sake of not only immigrants, but all parents trying to get services for their child, advocates need to focus on how long it takes to get children diagnosed. The delays in diagnosis mean delays in the needed services that will 70

allow the children to develop and become members of society. Advocates need to become aware that parents are feeling overwhelmed and under-informed when it comes to accessing services. Advocates need to make sure that information on accessing services and the rights and responsibilities of parents and children need to be made clear. This information will make accessing services easier and improve the outcomes of the child. Advocates must address some of the reasons why parents feel the need to change service providers, including addressing reasons for staff turnover and the complaints that parents have about their providers. Communication problems are one of those complaints. Advocates need to insist that better cultural competence training take place for providers and organizations. They must address that fact that organizations are inadequately staffed, and therefore clients are going without treatment that they need. They must also address training standards of providers to ensure that clients are receiving services in an appropriate manner. Another issue with communication is the lack of collaboration between providers and parents. It is critical that the relationship between providers and parents be improved and that parents are able to contribute the conversation regarding what happens with their child. It is important that advocates address the issue of organizations only wanting to serve clients that are not severe, because they are only reimbursed when improvements are being made. This advocacy may need to take place with organizations, but also with insurance companies. Another area that advocates need to address with insurance companies is the restriction of services and equipment coverage. People who can afford to get insurance coverage should not be punished with fewer services than people who rely on getting services through the state. This inequality must be addressed. All children must be provided with the services that they need.

71

Disability advocates need to learn about the impact that cultural differences in values and communication, along with racism and language barriers have on accessing services. They need to devise ways to get this information disseminated. Advocates need to continue their work with school districts. They must continue their pressure to ensure that schools are following through with the requirements of IDEA and that the unique needs of immigrants are considered as well. Advocates also need to pay attention to what has helped the parents in this study, so that they can put those practices into place for other parents. One area in which advocates could work would be on developing templates for how to develop an active and effective support group for parents of different cultural groups. One of the biggest supports that the Latina mothers had was the support group that was specifically for them and addressed their cultural needs. The study that looked at a Chinese support group for parents also had positive results (Tam & Poon, 2008). These support groups served as informational and emotional support, but also created a community for the participants in the group. They became friends and provided support to each other outside of the group. The parents indicated that support was critical for them to access services for their child and improved their relationship with providers. Another support area found in this research was that of having a list of parents willing to talk about their experience. This kind of support could be improved by advocates by developing a service that matched willing parents with parents seeking support. Advocates could recruit parents to be involved and then advertise the service. Educational programs need to be developed that will teach parents how to advocate for their children. The programs could also teach parents to become researchers, showing them how to use the internet to search for resources and information. Advocates could develop these educational programs. 72

The recommendations in this section relate to immigrant parents and their children. Increasing accessibility for this population is critical in ensuring that their rights are protected and their children have the ability to develop and become active members of society. Future Research Avenues Addressing the limitation of this study, a study that has participants who do not speak English would add to the complexity of the issue and be enlightening into their experiences. It would also be interesting to conduct comparative studies between immigrants who do and do not speak English to see if their experiences differ. Other comparative studies would include addressing whether there is a difference between the experiences of accessing services for immigrants of different backgrounds. In addition, looking at the comparison of immigrant parents to United States born parents would add to the debate. The parents felt good about the services they received here, in part, because they compared the experience here in the United States to what they thought they would experience in their country of origin. An intriguing study would be an actual comparative study between services here in the United States and the countries from which these parents came. Studies on the impact of culturally specific support groups vs. parents who do not participate in them would add to the discussion of the importance of support groups. In this study I realized that the parents go through enormous changes when they have a child with a disability. They really wanted to discuss these changes. A study that addresses these changes in the parents would be a nice follow-up to this study.

73

Conclusion This study has explored the perceptions of four immigrant parents of their access to services for their child with a disability and the quality of those services. The parents had mixed feelings about the process of accessing services and the quality of services that they have received. The parents thought that accessing services has been a struggle for them. At the time of the interview they felt like they knew what they were doing and had learned to navigate the system and advocate for their child’s needs. For some of them it had taken years to get to the place of feeling like they knew what they were doing. This chapter provided a discussion of what needs to be done to improve access to services and parental feelings about the services they receive. Recommendations were provided for groups that could improve the situation for parents, including providers, the state Department of Human Services, the school district, and disability advocates. Suggestions were also made on future directions for research.

74

Appendix A Glossary 

American’s with Disabilities Act (ADA) o A civil rights law enacted in 1990 intended to protect the rights of persons with disabilities in all areas of public life. An Amendments Act was passed in 2008 that went on to further protect individuals with disabilities and clarify the definition of disability. The United States’ civil rights legislation for people with disabilities.



Autism o Also known as autism spectrum disorder (ASD), autism is a term for a group of disorders with varying degrees of difficulties in social interaction, communication, both verbal and nonverbal, and repetitive behaviors. Other characteristics often seen include motor coordination disturbance, intellectual disability, attention difficulties, sleep disturbance and gastrointestinal disturbances. Some individuals with autism excel in math, music, visual skills and art. Sensory processing issues are often seen in conjunction with this disorder.



Cerebral Palsy (CP) o A group of disorders that affect movement in different ways, such as with muscle control, muscle coordination, muscle tone, reflex, posture and balancing. Results from damage to the brain during pregnancy or just after. A life-long condition with possible improvement or worsening over time and with work. Additionally, persons with CP can have intellectual impairments, epilepsy, sensory impairments, and speech and learning impairments.



Confirmability o A Trustworthiness criterion that ensures that the results and findings in a study come from the respondents’ experiences and ideas, instead of the researcher’s biases. While bias cannot be completely removed from either qualitative or quantitative research, a detailed description of the methodology used in the study is helpful in informing the reader of what happened and including an audit of theoretical processes by an outside researcher can provide support for confirmability.



Constant Comparative Method o A method of analyzing qualitative data, used in grounded theory, that involves coding the data and analyzing the data simultaneously and throughout the research process. As data is produced it is coded and compared to previously coded data. Analysis and theorizing occurs throughout, allowing for emergent design.

75



Convention on the Rights of the Child (CRC) o



A human rights treaty protecting the civil, political, economic, social, health, and cultural rights of children. All states have signed the treaty. The United States is the only state that has declined to ratify this treaty, making it unenforceable in this country.

Convention on the Rights of Persons with Disabilities (CRPD) o A human rights treaty protecting the rights and dignity of persons with disabilities. Persons with disabilities are to be ensured full equality under the law. The United States has signed, but not ratified this treaty, making it unenforceable in this country.



Credibility o



Cultural Competence o



A Trustworthiness criterion for qualitative research that addresses the question of whether the findings are congruent with reality. In order to ensure credibility, a researcher can engage in a number of practices having an audit of the research completed, engaging in negative case analysis, and becoming familiar with the culture in which the research is being conducted. A practice where a provider is aware of cultural differences and values when interacting with people from different cultures. Does not always recognize individualities and variation within groups, as well as power differentials within families and within groups.

Cultural Sensitivity o When a provider perceives, comprehends, and respects the client’s beliefs, goals, and values and relates them to how they interact with the client in order to provide appropriate services. Involves and exploration of power and diversity within groups.



Department of Human Services (DHS) o A state department which is responsible for health and welfare in the state in which this research took place. Services include child welfare, Medicaid, and mental health and disability services.



Dependability o

A Trustworthiness criterion for qualitative research that focuses on the consistency and stability of the research process used in the study. The dependability audit is the most common technique used to ensure dependability. The researcher maintains an audit trail of the process of the study and an outside researcher examines the audit trail to explore whether credibility and transferability standards have been met.

76



Disability o According to the WHO, disability is composed of three aspects that occur individually and in combination. These three aspects include impairment, activity limitations, and participation restrictions. Impairment relates to problems of body function or structure; activity limitations occur when a person has difficulty completing a task or action; participation restrictions occur when a person has difficulty with involvement in life circumstances. This definition indicates that disability is a combination of individual impairment and societal barriers.



Emergent Design o Research design that allows for evolution and changes resulting from what has been learned in previous parts of a study. It involves having a flexible approach to data collection and analysis procedures that are open to change, thus allowing for the generation of theories and hypotheses in an inductive manner.



Grand Tour Questions o Questions that a researcher uses to understand the general situation that a respondent is experiencing. Questions from which the responses of the respondents lead to further questioning and deeper understanding.



Grounded Theory o An inductive research methodology concerned with the systematic generation of theory using rigorous research procedures. Theory emerges from the analysis of the research data.



Individuals with Disabilities Education Act (IDEA) o A federal law passed in 1975 (At the time called the Education of All Handicapped Children Act) that requires schools to serve the educational needs of students with disabilities.



Institutional Review Board (IRB) o A committee tasked with evaluating research protocols that involve human subjects to ensure that the research is conducted in a manner following the guidelines set forth to protect the research participants.



International Classification of Functioning, Disability, and Health (ICF) o



The WHO document that provides standardized language and structure by which health and health related states are described. A multidimensional document that addresses the body, the individual, and society. Includes a list of body functions and structure, as well as a list of domains of participation and activity.

Medical Model o A model that defines disability or illness as intrinsic to the person. The difficulties that a person with a disability may have are caused by the individual’s physical condition. Disputed by advocates of the social model. 77



Negative Case Analysis o A procedure used in analysis that refines a theory until it can explain or account for a majority of cases. Involves incorporating cases that seem counter to a developing theory in order to fully explain a situation. Utilized in order to have a more inclusive theory and to increase trustworthiness of the study.



Normalization Principles o The practice of providing people with disabilities access to conditions and a way of life as similar to regular circumstances as possible.



Phenomenology o A philosophical perspective and a qualitative method of research. A method that explores people’s lived experience, delving into their perceptions of the world around them.



Qualitative Research Method o Exploratory research used to delve deep into a problem in order to better understand the situation, the reasons for it and the opinions of people involved. Utilizes techniques such as interviews and participation/observation.



Social Model o Disability is the result of barriers in society that restrict a person’s ability to function, rather than disability being caused by a person’s physical impairment. This definition resulted as a backlash to the medical model by disability activists.



Sociocultural Perspective o A theory that involves an awareness of social and cultural factors in individual’s lives and how this affects their behavior.



Supplemental Security Income (SSI) o A Federal income supplement program for low-income people who are 65 or older, blind, or disabled.



Thick Description o A detailed account of the sociocultural context in which a research study took place, as well as a thorough description of the research process. Allows the reader enough detail in order to determine whether the results can be transferred to another situation. Used as a measure to increase trustworthiness.

78



Transferability o A Trustworthiness criterion that is concerned with ensuring that enough details and descriptions of the situation that is being researched are provided in order for the reader to determine if the results of the study could be related to the situation that they are concerned with. In place of the generalizability criterion for quantitative research. Qualitative researchers are more concerned with contextual factors and the individualistic experience due to the context in which the research was done. Transferability can be protected by engaging in thick description.



Trustworthiness Criteria o Methods used to demonstrate that the research results are sound and the evidence for the arguments is strong. The criteria include credibility, transferability, confirmability, and dependability. Each criterion has its own methods. Transferability’s counterparts in quantitative research are validity and reliability.



The United Nations Children Emergency Fund (UNICEF) o



A United Nations program tasked with providing developmental services to children and their mothers, as well as long-term humanitarian aid. Involved in direct service provision and research and dissemination on topics important for the health of children and mothers.

Waiver Program o Home and community based services that support the maintenance of participants in their own homes or communities rather than placement in medical institutions. In the state where the research was conducted, there are seven waiver programs including the Health and Disability Waiver, the AIDS/HIV Waiver, the Elderly Waiver, the Intellectual Disability Waiver, the Brain Injury Waiver, the Physical Disability Waiver, and the Children’s Mental Health Waiver. Administered by the state Department of Human Services. Includes a Consumer Choice Option that allows members more control over service provision choices.



World Health Organization (WHO) o The directing and coordinating authority on international health within the United Nations’ system. WHO experts conduct research in order to produce standards and guidelines for public health issues

79

References Al-Hassan, S., & Gardner III, R. (2002). Involving immigrant parents of students with disabilities in the educational process. Teaching Exceptional Children, May/June, 52-58. Amedeo, G. (2009). The descriptive phenomenological method in psychology. Pittsburg, PA: Duquesne University Press. Balcazar, F. E., Suarez-Balcazar, Y., Adames, S. B., Keys, C. B., Garcia-Ramirez, M., & Paloma, V. (2012). A case study of liberation among Latino immigrant families who have children with disabilities. American Journal of Community Psychology, 49, 283-293. Baynton, D. (2013). Disability and the justification of inequality in American history. In L. J. Davis, Disability Studies Reader, Fourth Edition (pp. 31-47). New York: Routledge. Center for Parent Information and Resources. (2014, May). IDEA-The Individuals with Disabilities Education Act. Retrieved 2016, from Center for Parent Information and Resources: http://www.parentcenterhub.org/repository/idea/ Disabled World. (2014). Disability statistics: Facts & statistics on disabilities & disability issues. Retrieved 2015, from Disabled World: http://www.disabledworld.com/disability/statistics/ Factsheet on Persons with Disabilities. (n.d.). Retrieved October 1, 2014, from United Nations Enable: http://www.un.org/disabilities/default.asp?id=18 Flores, G. (2005). The impact of medical interpreter services on the quality of health care: A systematic review. Medical Care Research and Review, 62(3), 255-299. Glaser, B. G., & Strauss, A. L. (1967). The discovery of grounded theory: Strategies for qualitative research. New Brunswick, USA: Aldine Transaction. Gray, D. B., Gould, M., & Bickenbach, J. E. (2003). Environmental barriers and disability. Journal of Architectural and Planning Research, 20(1), 29-37.

80

Harry, B. (2008). Collaboration with culturally and liguistically diverse families: Ideal versus reality. Exceptional Children, 74(3), 372-388. Hibel, J., & Jasper, A. D. (2012). Delayed special education placement for learning disabilities among children of immigrants. Social Forces, 91(2), 503-530. Jegatheesan, B. (2009). Cross-cultural issues in parent-professional interactions: a qualitative study of perceptions of Asian American mothers of children with developmental disabilities. Research & Practice for Persons with Severe Disabilities, 34(3-4), 123-136. Kaplan, D. (2000). The Definition of Disability. Retrieved October 1, 2014, from The Center For An Accessible Society: http://www.accessiblesociety.org/topics/demographicsidentity/dkaplanpaper.htm King, G., Linsday, S., Klassen, A., Esses, V., & Mesterman, R. (2011). Barriers to health service utilization by immigrant families raising a disabled child: Unmet needs and the role of discrimination. Toronto: Citizenship and Immigration Canada. Lincoln, Y. S., & Guba, E. G. (1985). Naturalistic inquiry. Newbury Park, CA: Sage Publications. Lindsay, S., King, G., Klassen, A. F., Esses, V., & Stachel, M. (2012). Working with immigrant families raising a child with a disability: Challenges and recommendations for healthcare and community service providers. Disability Rehabilition, 34(23), 2007-2017. Mpofu, E. (2015). Community-oriented services: Practices across disciplines. New York, New York: Springer Publishing Company, LLC. Nwosu, C., Batalova, J., & Auclair, G. (2014, April 28). Frequently requested statistics on immigrants and immigration in the united states. Retrieved October 1, 2014, from Migration Policy Institute: http://www.migrationpolicy.org/article/frequently-requestedstatistics-immigrants-and-immigration-united-states#1

81

Pfeiffer, D. (1993). Overview of the disability movement: History, legislative record and political implications. Policy Studies Journal, 21(4), 724-734. Shapiro, J. P. (1993). No pity: People with disabilities forging a new civil rights movement. New York: Three Rivers Press. Simon, M. (2001). Beyond broken promises: Reflections on eliminating barriers to the success of minority youth with disabilities. Journal of the Association for Persons with Severe Handicaps, 26(3), 200-203. Tam, C., & Poon, V. (2008). Developing a support group for families with children with disabilities in a Canadian Chinese church community. Journal of Pastoral Care & Counseling, 62(4), 343-351. U.S. Census Bureau. (2014). QuickFacts: Johnson County, IA. U.S. Census Bureau. Retrieved from http://www.census.gov/quickfacts/table/PST045215/19103,00 U.S. Department of Education. (2014). Building the legacy: IDEA 2004. Retrieved 2015, from U.S. Department of Education: http://idea.ed.gov/ U.S. Department of Education. (2015). 37th Annual report to congress on the implementation of the individuals with disabilities education act. Alexandria, Virginia: U.S. Department of Education. Retrieved from U.S. Department of Education. UNICEF. (2012). The state of the world's children 2013: Children with disabilities. New York, New York: UNICEF. Weber, M. C. (2015). Immigration and disability in the united states and canada. Windsor Yearbook of Access to Justice, 1-22. Welterlin, A., & LaRue, R. H. (2007). Serving the needs of immigrant families of children with autism. Disability & Society, 22(7), 747-760. World Health Organization. (2002). Towards a common language for functioning, disability and health. Geneva, Switzerland: World Health Organization. 82

World Health Organization. (2011). World report on disability. Geneva, Switzerland: World Health Organization. World Health Organization. (2014). Disability and health. Geneva, Switzerland: World Health Organization. WorldfFacts and statistics on disabilities and disability issues. (2014). Retrieved October 1, 2014, from Disabled World: http://www.disabledworld.com/disability/statistics/ Wright, T. J., & Leung, P. (1993). Meeting the unique needs of minorities with disabilities. Washinton, D.C.: National Council on Disability. Yu, S. M., Huang, Z. J., & Singh, G. H. (2004). Health status and health services utilization among U.S. Chinese, Asian India, Filipino, and other Asian/Pacific Islander children. Pediatrics, 113(1), 101-107.

83