���1. Voices of Inclusion Literature Review Concept Map Draft 2

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���1. Voices of Inclusion Literature Review Concept Map Draft 2 作者: Mind Map: ���1. Voices of Inclusion  Literature Review Concept Map Draft 2

1. 2. People with Disabilities

1.1. 1. Disability Prevalence

1.1.1. 1. # in world

1.1.1.1. 1. “One billion people, or 15% of the world’s population, experience some form of disability, and disability prevalence is higher for developing countries”

1.1.2. 2. # of people in USA

1.1.2.1. 1. “26% of adults in the U.S. have a disability, or 1 in 4”

1.1.3. 3. # of in CA

1.1.3.1. 1. “10.6% of people in Ca have a disability”

2. 3. What is disability?

2.1. 1. “A disability is any condition of the body or mind (impairment) that makes it more difficult for the person with the condition to do certain activities (activity limitation) and interact with the world around them (participation restrictions).” (Centers for Disease Control and Prevention, 2019).

2.1.1. 1. World Health Organization:

2.1.1.1. 1. Disability has three qualities:

2.1.1.1.1. 1. Impairment in a person’s body structure or function, or mental functioning; examples of impairments include loss of a limb, loss of vision or memory loss.

2.1.1.1.2. 2. Activity limitation, such as difficulty seeing, hearing, walking, or problem solving.

2.1.1.1.3. 3. Participation restrictions in normal daily activities, such as working, engaging in social and recreational activities, and obtaining health care and preventive services.

2.1.1.2. 2. “Disability is a compounding factor”

2.1.1.2.1. 1. People with disability:

2.1.1.2.2. 2. Negative outcomes “can be caused by many factors”

2.1.1.2.3. 3. “Barriers that other people often take for granted in the”

2.2. 2. Spectrum of disabilities

2.2.1. 1. Range of abilities and degrees of impairments.

2.2.1.1. 1. terms “mild,” “moderate,” “severe,” and “profound”

2.3. 3. Three organizations have classification systems: (Brady, Bruce, Goldman, Erickson, Mineo, Ogletree, Wilkinson, 2016 )

2.3.1. 1. used in the process of defining, diagnosing, and characterizing intellectual disability:

2.3.1.1. 1. (a) American Association on Intellectual and Developmental Disabilities (AAIDD, formerly the American Association on Mental Retardation or AAMR);

2.3.1.2. 2. (b) American Psychiatric Association (APA), publishers of the Diagnostic and Statistical Manual of Mental Disorders (DSM); and

2.3.1.3. 3. (c) World Health Organization (WHO),

3. 4. People with significant/ profound disabilities

3.1. 1. Disabilities that interfere with living, self-care, employment, and or healthcare (Agran, Jackson, Kurth, Ryndak, Burnette, Jameson, Zagona, Fitzpatrick, & Wehmeyer, 2020; Taylor, & Balandin, 2020).

3.1.1. 1. (Cluley, 2016; Heffron, et. al., 2018).

3.1.2. 2. 2. People with profound disabilities in world

3.1.3. 1. “One-fifth of the estimated global total, or between 110 million and 190 million people, experience significant disabilities”.

3.1.4. 2. “2–4% experience significant difficulties in functioning”

3.2. 3. People with profound disabilities in the U.S# of people in USA

3.2.1. 1. “A 2018 report states that of the 40,675,305 individuals who are living with a disability, 15,378,144 (37.8%) live with a cognitive disability”

4. 5. Community Involvement significant indicator of quality of life (Lips, & Schrijver, 2020; Kunt, 2020)

4.1. 1. Both physical and social-emotional (Coussens, et.al., 2020; Hergenrather, 2009)

4.1.1. 1. “Integration”

4.1.2. 2. “Participation”

4.1.3. 3. “Social supports”

4.1.4. 4. “Access”

4.2. 2. Environmental, economic, and emotional barriers prevent inclusion (Benedict, 2019; Cho, Kim, & Kwon, 2019)

4.3. 3. “Recognition” key to community integration (Aamlid, & Brownfield, 2019; Hall, 2016, p. 859; Wang, & Stack, 2018)

5. 6. Disability Employment

5.1. 1. # in world

5.1.1. 1. “Only 18 percent of countries constitutionally protect the right to work for persons with disabilities.”

5.1.2. 2. “However, employment rights are becoming more common. Of the constitutions adopted in 2010 or later, 58 percent guarantee the right to work for persons with disabilities compared to only 11 percent of those constitutions adopted before 1990.”

5.1.3. 3. “According to preliminary findings for the 25 most populous countries focused on legislative protections against workplace discrimination, 14 broadly protect persons with disabilities from discrimination at work, and eight protect workers with disabilities from indirect discrimination.”

5.2. 2. # in USA

5.2.1. 1. “The Bureau of Labor Statistics reported on Feb. 26 an unemployment rate of 7.3% among people with disabilities in 2019”

5.2.2. 2. “In 2019, 19.3 percent of persons with a disability were employed, the U.S. Bureau of Labor Statistics reported today. In contrast, the employment-population ratio for persons without a disability was 66.3 percent. The unemployment rates for both persons with and without a disability declined from the previous year to 7.3 percent and 3.5 percent, respectively.”

5.2.3. 3. “Persons who are neither employed nor unemployed are considered not in the labor force. A large proportion of persons with a disability--about 8 in 10--were not in the labor force in 2019”

5.3. 3. # in CA

5.3.1. 1. “The most recently available survey results for California students indicate that about half of all students with disabilities are enrolled in higher education one year after high school. By comparison, we estimate about 60 percent of all California students are enrolled in higher education one year after graduation.”

5.3.2. 2. “About a quarter of students with disabilities are competitively employed, and slightly less than 10 percent are in other types of employment or training programs (typically subsidized). We do not have good data on student outcomes beyond the first year out of high school.”

6. 7. Significantly disabled Incidence of poverty

6.1. 1. # in world

6.1.1. 1. “The World Bank estimates that 20 percent of the world's poorest people have some kind of disability, and tend to be regarded in their own communities as the most disadvantaged

6.2. 2. # in USA

6.2.1. 1. “$23,006 Median earnings in the past 12 months (in 2017 inflation adjusted dollars) of the civilian noninstitutionalized population age 16 and over with earnings and a disability.”

6.2.2. 2. “Around 26% of disabled people in America live in poverty.”

6.2.3. 3. “The lowest earnings are measured for people with cognitive disabilities, who make $35,400.”

6.2.4. 4. “The relevant social security disability statistics show that around $144 billion is spent on annual benefits from Social Security Disability Insurance.”

6.2.5. 5. “Social Security Disability Insurance, which makes up around 4% of the federal budget. Roughly 10 million people use this money”.

7. 8. Historical look at treatment of people with disabilities

7.1. 1. Mentally ill unchained from a wall in Paris (1793) (National Consortium on Leadership and Disability for Youth, p. 3).

7.2. 2. Victor of Aveyron: (1801) Jean-Marc Gaspard Itard developed methods for teaching people with mental disabilities (National Consortium on Leadership and Disability for Youth, p. 4).

7.3. 3. Nazi Aktion T4 (1939)

7.3.1. 1. Adolph Hitler orders “mercy killing” of the sick and disabled.

7.3.1.1. 1. euthanasia program is instituted to eliminate “life unworthy of life.”

7.3.1.2. 2. Between 75,000 to 250,000 people with intellectual or physical disabilities were systematically killed from 1939 to 1941 (National Consortium on Leadership and Disability for Youth, p. 11).

7.4. 4. UN Encourages Global Equality and Participation for the Disabled (1982)

7.5. 5. United Nations Convention on the Rights of Persons with Disabilities (2006)

7.5.1. 1. “Persons with disabilities include those who have long-term physical, mental, intellectual or sensory impairments which in interaction with various barriers may hinder their full and effective participation in society on an equal basis with others” (United Nations, 2006).

7.5.1.1. 1. “In most parts of the world there are deep and persistent negative stereotypes and prejudices against persons with certain conditions and differences.”

7.5.1.2. 2. “These attitudes themselves also shape who is considered to be a person with a disability in each society

7.5.1.3. 3. “have contributed to a negative image of persons with disabilities”.

7.5.1.3.1. 1. “The language used to refer to persons with disabilities has played a significant role in the persistence of negative stereotypes”.

7.5.1.3.2. 2. “Terms like individuals with intellectual disability have replaced the older terms of mentally retarded persons or the mentally retarded, and definitions of ID have changed from being strictly intelligence quotient (IQ)–based to including strengths in adaptive behavior” (ASHA.Org).

8. 9. U.S. Approaches to People with Disabilities

8.1. 1. Landmark policies

8.1.1. 1. Late 1700’s 1st Military Disability Law (National Consortium on Leadership and Disability for Youth, p. 4).

8.1.2. 2. “Eugenic Sterilization Law 1907

8.1.2.1. 1. For ”confirmed idiots, imbeciles and rapists”—in state institutions.

8.1.2.2. 2. The law is enacted in 24 other states.” (National Consortium on Leadership and Disability for Youth, p. 8).

8.1.3. 3. Compulsory Sterilization Ruled Constitutional 1927

8.1.3.1. 1. “The Supreme Court rules in Buck v. Bell that the compulsory sterilization of mental defectives such as Carrie S. Buck, a young Virginia woman, is constitutional under “careful” state safeguards.” (National Consortium on Leadership and Disability for Youth, p. 9).

8.1.4. 4. FDR Elected President

8.1.4.1. 1. Social Security Act 1935

8.1.4.1.1. 1. Federal assistance for people with disabilities (National Consortium on Leadership and Disability for Youth, p. 10).

8.1.4.2. 2. Established the organization that becomes the March of Dimes to combat infantile paralysis.

8.1.4.2.1. 1. Featured on dime as a commemoration of his effectors (National Consortium on Leadership and Disability for Youth, p. 10).

8.1.5. 5. Beginning of National Barrier-Free Standards (1950)

8.1.5.1. 1. “The Veterans Administration, The President’s Committee on

8.1.5.1.1. 1. Employment of the Handicapped, and the National Easter

8.1.5.1.2. 2. Seals Society, among others, results in the development of

8.1.5.1.3. 3. national standards for “barrier-free” buildings.” (National Consortium on Leadership and Disability for Youth, p. 12).

8.1.6. 6. Association for Retarded Citizens (ARC).(1950)

8.1.7. 7. Last of “Ugly Laws” Repealed (1974)

8.1.7.1. 1. “Ugly Law” was repealed in Chicago, Illinois, in 1974.

8.1.7.1.1. 1. laws allowed police to arrest and jail people with “apparent” disabilities for no reason other than being disfigured or demonstrating some type of disability. (National Consortium on Leadership and Disability for Youth, p. 16).

8.1.8. 8. Americans with Disabilities Act Becomes Law (1990)

8.2. 2. Educational policies

8.2.1. 1. Gallaudet School for Deaf (1815) opened

8.2.2. 2. Braille Invented (1829)

8.2.3. 3. The Education for Handicapped Children Act of 1975—now called the Individuals with Disabilities Education Act (IDEA)

8.2.3.1. 1. It guarantees a free, appropriate,

8.2.3.2. 2. public education for all children with disabilities in the least restrictive environment. (National Consortium on Leadership and Disability for Youth, p. 16).

8.2.4. 4. National Council on Disability Established (1978)

8.2.4.1. 1. “advisory board within the Department of Education.

8.2.4.2. 2. Its purpose is to promote policies, programs, practices, and procedures that guarantee equal opportunity for all people with disabilities, regardless of the nature or severity of the disability, and to empower them to achieve economic self-sufficiency, independent living, and inclusion and integration into all aspects of society.” (National Consortium on Leadership and Disability for Youth, p. 17).

8.2.5. 5. Right to Appropriately Ambitious Education

8.2.5.1. 1. No Child Left Behind Act (NCLB, 2002) and IDEA (2004) require highly qualified teachers in general education classrooms (Kurth, et. al., 2019)

8.2.5.2. 2. “Research finds this can significantly increase student performance (Darling-Hammond & Youngs, 2002; Sanders & Horn, 1998; Wilson, Ferrini-Mundy, & Floden, 2002)”( (Agran, et. al., 2020, Demartino, & Specht, 2018 p. 266; Kurth, et. al., 2019).

8.2.5.2.1. 1. “teaching only within certification= special education teachers= content teachers, must demonstrate the same competencies and certifications for all core academic subjects that they may teach (IDEA, 2004)” (Demartino, & Specht, 2018 p. 266).

8.2.6. 6. IDEA (2004) (Kurth, et. al., 2019; Zirkel, 2020)

8.2.6.1. 1. “U.S. Supreme Court in the 2018 Endrew F. v. Douglas County School District (2017) ruling,

8.2.6.1.1. 1. “interpreted an appropriate education as implying that each student receiving IDEA services has a right to an appropriately ambitious educational program, that every child should have the chance to meet challenging objectives, and that education programs for children with disabilities must take into account each student’s potential for growth (Wehmeyer, 2019)”.(Agran, et. al., 2020, p. 6; Zirkel, 2020)

8.2.6.1.2. 2. “negative consequences of teaching students with ESN in restrictive settings (i.e.,, settings with less access to the general education curriculum, activities, and discourse than general education settings; Sauer & Jorgensen, 2016).” (Kurth, et. al., 2019, p. 4).

8.2.6.1.3. 3. “Students taught in more restrictive settings may experience less rigorous standards-based instruction (Bacon, Rood, & Ferri, 2016) (Kurth, et. al., 2019, p. 4).

8.2.6.1.4. 4. “Have less rigorous individualized education program (IEP) goals (Kurth & Mastergeorge, 2010) (Kurth, et. al., 2019, p. 4).

9. 10. Inclusive education

9.1. 1. UNESCO (1994), the term special educational needs (SEN) “refers to all those children and youth whose needs arise from disabilities or learning difficulties” (Alzahrani, 2020 p. 68; Gregory, 2018).

9.1.1. 1. “Inclusive education means that those students with disabilities have the right to be educated with their typically developing peers of the same age (UNESCO, 2005)” (Alzahrani, 2020 p. 68; Gregory, 2018).

9.1.2. 2. Framework for Action on Special Needs Education (Convention, 1994).

9.1.2.1. 1. “Every child has a

9.1.2.1.1. 1. “fundamental right to education”

9.1.2.1.2. 2. “unique characteristics, interests, abilities and learning needs”

9.1.2.1.3. 3. education systems should be designed and educational programmes implemented to take into account the wide diversity of these characteristics and need

9.1.2.1.4. 4. those with special educational needs must have access to regular schools which should accommodate them within a child centred pedagogy capable of meeting these needs,

9.1.2.1.5. 5. “regular schools with this inclusive orientation are the most effective means of combating discriminatory attitudes, creating welcoming communities, building an inclusive society and achieving education for all; moreover, they provide an effective education to the majority of children and improve the efficiency and ultimately the cost-effectiveness of the entire education system’ (p. ix).

9.1.3. 3. Inclusive education is able to provide students with significant disabilities and non disabled peers and educators opportunities to grow in education in authentic, generalizable situations that sheltered or separate educational opportunities cannot (Benstead, 2019; Gregory, 2018; Kurth, et. al., 2019).

9.1.3.1. 1. SWD in general education classrooms learned better when assisted by special ed teaching in the gen ed environment (Agran, et. al., 2020 Bottge, Cohen, & Choi, 2017).

9.1.3.2. 2. All students learn better in inclusive environments (Agran, et. al., 2020, p. 4)

9.1.3.3. 3. “When compared with self-contained special education classrooms, the general education classroom has been shown to provide: (Agran, et. al., 2020, p. 5)

9.1.3.3.1. 1. greater opportunities to access the general education curriculum (Soukup, Wehmeyer, Bashinski, & Bovaird, 2007),

9.1.3.3.2. 2. enhanced access to content area expertise and age-appropriate instructional materials (Kleinert et al., 2015),

9.1.3.3.3. 3. increased naturalistic peer supports (Carter & Hughes, 2006).

9.1.3.3.4. 4. More rigorous and higher quality Individualized Education Program (IEP) goals (Kurth & Mastergeorge, 2010)

9.1.3.3.5. 5. greater engagement in curricular activities (Kurth & Mastergeorge, 2012),

9.1.3.3.6. 6. higher levels of social engagement (Lyons, Cappadocia, & Weiss,2011).”

9.2. 2. Education Environment

9.2.1. 1. # in the world

9.2.1.1. 1. “12 percent of countries only meet their needs in separate schools, some limited to specific types of disability.”

9.2.1.2. 2. “In developing countries, over 90% of disabled children don’t go to school.”

9.2.2. 2. # in U.S.

9.2.2.1. 1. “About 95 percent of students ages 6–21 served under IDEA in fall 2018 were enrolled in regular schools.”

9.2.2.2. 2. “Three percent of students served under IDEA were enrolled in separate schools (public or private) for students with disabilities;

9.2.2.2.1. 1. “1 percent were placed by their parents in regular private schools”;

9.2.2.2.2. 2. “3 and less than 1 percent each were homebound or in hospitals, in separate residential facilities (public or private), or in correctional facilities.”

9.2.2.3. 3. “Among all students ages 6–21 served under IDEA, the percentage who spent most of the school day (i.e., 80 percent or more of their time) inside general classes in regular schools increased from 47 percent in fall 2000 to 64 percent in fall 2018.”

9.2.2.4. 4. “A majority of special education students—63.4 percent of those aged 6-21—spend 80 percent or more of their time in regular education classes, according to 2017 data.”

9.2.2.5. 5. “Inclusion Increasing up from 31.7 percent in 1989.”

9.2.2.6. 6. “In contrast, during the same period, the percentage of students who spent 40 to 79 percent of the school day inside general classes decreased from 30 to 18 percent”

9.2.2.7. 7. “the percentage of students who spent less than 40 percent of their time inside general classes decreased from 20 to 13 percent.”

9.2.2.8. 8. “In contrast, 17 percent of students with intellectual disabilities and 14 percent of students with multiple disabilities spent most of the school day inside general classes.”

9.2.2.9. 9. “In 1989, 6.1%- in 2017 5%: the "other" category includes students who attend a separate school for students with disabilities or separate residential facilities or who have been parentally placed in a regular private school, are home-bound or in a hospital or in a correctional facility. The 1989 numbers don't add up to 100 due to rounding.”

9.2.3. 3. # in CA:

9.2.3.1. 1. “About 20 percent of all students with disabilities are taught primarily in special day classrooms alongside other students with disabilities”

9.2.3.2. 2. “about 3 percent of students with disabilities are educated in separate schools exclusively serving students with disabilities. Typically, these students attend nonpublic schools or state special schools.”

9.3. 3. Least Restrictive Environment (Zirkel, 2020)

9.3.1. 1. The Individuals with Disabilities Education Act of 2004 (IDEA, 2004) (Kurth, et. al., 2019; Zirkel, 2020).

9.3.2. 2. LRE

9.3.2.1. 1. “excluding these children from regular education classrooms should occur only in highly scrutinized exceptions (IDEA, 2004)” (Demartino, & Specht, 2018, p. 266).

9.3.2.2. 2. “LRE, Section 612(5)(a) of IDEA states students should only be removed from the “regular educational environment” when a student’s needs cannot be met in that setting, even with the use of supplementary aids and services” (Kurth, et. al., 2019; p.4; Zirkel, 2020)

9.3.2.2.1. 1. “These may include supports for physical

9.4. 4. Challenges to LRE

9.4.1. 1. “Legal expectations that inclusive services be offered to students with disabilities is not a guarantee that such services will be provided nor is it a guarantee that the services provided are successful (Waddington & Toepeke, 2014)” (Gregory, 2018; Kurth, et. al., 2019) .

9.4.2. 3. “U.S. Department of Education (2018) 40th Annual Report to Congress on the Implementation of IDEA (The Individuals with Disabilities Education Improvement Act), approximately one half of students with intellectual or multiple disabilities spend less than 40% of their time in regular classrooms per day” (Agran, et. al., 2020, p. 4; Kurth, et. al., 2019)

9.5. 5. Insufficient Information

9.5.1. 1. “The fact is, we have no data on the number of students in schools with severe cognitive disabilities and complex health care needs, never mind, the number educated in general education classes” (Lehr, 2019, p. 39).

9.5.1.1. 1. no federal reporting category for severe disabilities nor for students with complex health care needs

9.5.2. 2. SWD 14 percent of total public school enrollment.(NCES.Ed.Gov)

9.5.2.1. 1. 15 percent had other health impairments (including having limited strength, vitality, or alertness due to chronic or acute health problems such as a heart condition, tuberculosis, rheumatic fever, nephritis, asthma, sickle cell anemia, hemophilia, epilepsy, lead poisoning, leukemia, or diabetes).

9.5.2.2. 2. Students with autism, developmental delays, intellectual disabilities, and emotional disturbances each accounted for between 5 and 11 percent of students served under IDEA

9.5.2.3. 3. Students with multiple disabilities, hearing impairments, orthopedic impairments, visual impairments, traumatic brain injuries, and deaf-blindness each accounted for 2 percent or less of those served under IDEA.

10. 11. Issues of Inclusive Education Systems

10.1. 1. “focused on the location of children with special needs, rather than on the quality of education and care that those children receive” (Agran, et. al., 2020, Alzahrani, 2020 p. 72; Gregory, 2018; Lehr, 2019; Kurth, et. al., 2019).

10.2. 2. Teacher attitudes

10.2.1. 1. Gen ed teachers must do more, and do not have specialized settings, equipment, and expertise needed to instruct (Alzahrani, 2020 p. 76; Gregory, 2018; Lehr, 2019).

10.2.2. 2. Could insult or humiliate students (Agran, et. al., 2020)

10.2.3. 3. Expectations beyond ability of students (Agran, et. al., 2020; Kurth, et. al., 2019)

10.3. 3. Economic and demographic disparities, (Agran, et. al., 2020)

10.3.1. 1. more affluent students in specific regions of USA more included

10.4. 4. Parent attitudes

10.4.1. 1. Concerns with quality of education, meeting their child’s specific needs, and safety result in parents keeping students in separate settings (Alzahrani, 2020 p. 77)

10.4.2. 2. Parents endorsed the ideal of inclusion, but declined inclusive opportunities in practice (Alzahrani, 2020 p. 77).

11. 12. Disability research to date

11.1. 1. Emancipatory Research (Byrne, & Mclaughlin, 2006; Oliver, 1992)

11.1.1. 1. Reaction to historic research approaches

11.1.2. 2. People with disability “failed by research in 3 ways” (Oliver, 1992, p.2; Zilli, Parsons, & Kovshoff, 2019).

11.1.2.1. 1. “Individual problem” (p3) People with disability not directly studied, “it has failed to accurately capture and reflect the experience of disability from the perspective of disabled people themselves”

11.1.2.1.1. 1. “limited research into the lived experience of people with CCN who use AAC devices” (Collier, Blackstone, & Taylor 2012; Howe, Worrall, & Hickson 2008; Taylor, Balandin, Wilson, & Murfitt 2019) (Taylor, & Balandin, 2020).

11.1.2.2. 2. “Social Problem” (p3) People with disabilities are not benefited or their lives improved through research, “it has failed to provide information that has been useful to the policy making process and has contributed little to improving the material conditions under which disabled people live.

11.1.2.3. 3. “Political Problem” (p3) Issues, institutionalized policies ignored, “it has failed to acknowledge the struggles of disabled people themselves and to recognise that disability is not simply a medical or welfare issue, but a political one as well.

12. 13. Research involving people with significant/ profound disabilities limited due to:

12.1. 1. Small % of the general Population are profoundly disabled (Horner-Johnson, & Bailey, 2013; Hergenrather, 2009; Lehr, 2019; Taylor, & Balandin, 2020).

12.1.1. 1. Students in Special education are around 13% (Demartino, & Specht, 2018 p. 266).

12.2. 2. Lack of social capital (Hergenrather, 2009; Horner-Johnson, & Bailey, 2013).

12.3. 3. High potential to be exploited by research (Horner-Johnson, & Bailey, 2013).

12.3.1. 1. Strict protections to keep vulnerable populations from being harmed/ exploited (Horner-Johnson, & Bailey, 2013).

13. 14. Ways People with SIgnificant disabilities are excluded from research

13.1. 1. Nature of research (Mietola, Miettinen, & Vehmas, 2017, Taylor, & Balandin, 2020).

13.1.1. 1. Materialist/Marxist tradition (Oliver, 1990)

13.1.1.1. 1. Economic focus that marginalizes (Mietola, Miettinen, & Vehmas, 2017, p ).

13.1.2. 2. Social Constructionist and Poststructuralist (Goodley, 2014)

13.1.2.1. 1. Documented the development and establishment of social, philosophical, and physical limits imposed on people with profound disabilities (Mietola, Miettinen, & Vehmas, 2017, p ).

13.1.3. 3. Sociological focus has disenfranchised people with profound disabilities (Mietola, Miettinen, & Vehmas, 2017, p ).

13.1.3.1. 1. First person experiences or impacts on quality of life ignored (Mietola, Miettinen, & Vehmas, 2017, p ).

13.1.3.2. 2. “Disability studies have traditionally concentrated on examining various social, structural and cultural practices and mechanisms that exclude disabled people from social participation” (Mietola, Miettinen, & Vehmas, 2017, Taylor, & Balandin, 2020).

13.2. 2. Perceived inability to provide informed consent (Horner-Johnson, & Bailey, 2013; Taylor, & Balandin, 2020).

13.2.1. 1. “Individuals with ID have cognitive and adaptive impairments that may affect their ability to make informed choices about both routine and significant decisions, such as informed consent” (Ellery, 2019; Kurth, et. al., 2019; Mccormack, et. al., 2019; Zilli, Parsons, & Kovshoff, 2019)

13.2.2. 2. “Consent Capacity” (Appelbaum, 2007).

13.2.2.1. 1. “understand relevant information”;

13.2.2.2. 2. “appreciate the consequences of the information for one’s own situations;”

13.2.2.3. 3. “reason about the available options;” “communicate a choice”

13.2.2.4. 4. Comprehension of what is asked, what is expected, and potential for harm or benefit (Horner-Johnson, & Bailey, 2013).

13.2.3. 3. Inability to give consent in a traditional manner does not mean it is not able to be obtained (Horner-Johnson, & Bailey, 2013).

13.2.3.1. 1. “limited research into the lived experience of people with CCN who use AAC devices” (Collier, Blackstone, & Taylor 2012; Howe, Worrall, & Hickson 2008; Taylor, Balandin, Wilson, & Murfitt 2019) (Taylor, & Balandin, 2020).

13.3. 4. Inclusive research only includes the most capable. (Cluley, 2016; Lehr, 2019; Zilli, Parsons, & Kovshoff, 2019).

13.3.1. 1. Epistemological parameters of research methods are exclusionary (Taylor, & Balandin, 2020)

13.3.1.1. 1. Functional level of cognitive capabilities required for (Cluley, 2016, p. 45):

13.3.1.1.1. 1. Focus groups

13.3.1.1.2. 2. Interviews

13.3.1.1.3. 3. Life history

13.3.1.1.4. 4. Oral history

13.3.1.1.5. 5. Autobiographies

13.3.2. 2. Research is unrepresentative of all people with disabilities (Cluley, 2016, p. 46; Coussens, et.al., 2020; Hergenrather, 2009).

13.3.2.1. 1. Focusing on Mild/ Moderate; or Autistic, or Vision Inapired only; but attempt to generalize to all people with disabilities (Cluley, 2016, p. 46; Coussens, et.al., 2020; Mietola, Miettinen, & Vehmas, 2017, p ).

13.3.2.2. 2. Paul Atkinson’s (2015, p. 172)

13.3.2.2.1. 1. ‘(w)ith a very small number of egregious exceptions, ethnography is among the most ethical forms of research.’(emphasis in the original).

13.4. 5. Qualitative studies are more common than quantitative studies; few mix methods (Ciolan, & Manasia, 2017; Hergenrather, 2009)

13.4.1. 1. Phenomenology

13.4.2. 2. case studies

13.4.3. 3. Mixed Methods:

13.4.3.1. 1. (Ciolan, & Manasia, 2017)

13.5. 6. Hearing authentic and unique voices of people with profound disabilities is still limited (Cairns et al. 2014; Brown et al. 2016; Coussens, et.al., 2020; Ryan 2019; Taylor, & Balandin, 2020)

13.5.1. 1. “limited research into the lived experience of people with CCN who use AAC devices” (Collier, Blackstone, & Taylor 2012; Coussens, et.al., 2020 Howe, Worrall, & Hickson 2008; Taylor, Balandin, Wilson, & Murfitt 2019) (Taylor, & Balandin, 2020).

14. 15. Cooperative research models have attempted to increase inclusion (Kunt, 2020; Taylor, & Balandin, 2020)

14.1. 1. Co-researchers equalize power in research (Cluley, 2016, p. 45; Hergenrather, 2009; Kunt, 2020; Wang, & Stack, 2018).

14.1.1. 1. Researchers are working with rather than “speaking for” (Cluley, 2016, p. 45; Hergenrather, 2009; Kunt, 2020; Wang, & Stack, 2018).

14.2. 2. Cognitive / physical ability still required to participate (Cluley, 2016, p. 45; Taylor, & Balandin, 2020).:

14.2.1. 1. Verbalize

14.2.2. 2. Indicate preferences, attitudes (Cluley, 2016, p. 45).

14.3. 3. Inclusive research can “marginalize” people with profound disabilities due to participation requirements (Cluley, 2016, p. 45; Mietola, Miettinen, & Vehmas, 2017; Wang, & Stack, 2018 ).

15. 16. Criticisms of cooperative research involving people with significant disabilities (Oliver 1998; Oliver, 2009; Coussens, et.al., 2020; Mietola, Miettinen, & Vehmas, 2017, p ).

15.1. 1. Experiential research used to assume an accurate narration was a sufficient substitute for individual voices (p4).

15.2. 2. Methodological: Studying a group is harder than individual research (p4) (Hergenrather, 2009)

15.3. 3. Approach Objectives of study not clear, and clear connection to social change not made (p5)

15.4. 4. Participation is limited to small steps or parts rather than entire project (p5)

16. 17. Effective Cooperative Research with Students with Profound Disabilities

16.1. 1. Key studies

16.1.1. 1. My Education: Students with Disabilities Describe High School in Pictures and Words. Whitney (2006)

16.1.1.1. 1. “This article describes a process called “Photovoice,” originally developed by Carolyn Wang and Mary Ann Burris (1997) in the field of public health, and illustrates how thirteen students with disabilities in three high schools used cameras and text to show and tell how they engage or fail to engage in their education.”

16.1.2. 2. Using photovoice to include people with profound and multiple learning disabilities in inclusive research. Cluley (2016)

16.1.2.1. 1. “This article talks about how a research method called photovoice can be used to include people with profound and multiple learning disabilities.”

16.1.3. 3. Keys to engagement: A case study exploring the participation of autistic pupils in educational decision‐making at school. Zilli, Parsons, Kovshoff, 2019)

16.1.3.1. 1. “These insights provide a tool for reflection by educators and educational psychologists for considering how they might promote the participation of autistic pupils in different educational contexts.”

16.1.4. 4. A Qualitative Photo Elicitation Research Study to elicit the perception of young children with Developmental Disabilities such as ADHD and/or DCD and/or ASD on their participation. (Coussens ,Destoop, De Baets,Desoete,Oostra,Vanderstraeten,Van Waelvelde,Van de Velde, 2020)

16.1.4.1. 1. “However, little is known about the level of participation of young children with Developmental Disabilities. The aim of this study was to capture their subjective experiences of participation.”

16.1.4.2. 2. “This method generated rich data, confirming that young children with Developmental Disabilities were able to inform us accurately on their experiences of participation.”

17. 18. Theoretical Framework

17.1. 1. Youth Participatory Action Research (YPAR) method (Aamlid, & Brownfield, 2019; Zilli, Parsons, & Kovshoff, 2019).

17.1.1. 1. Student Participant Researchers under age 18 (Harper, et. al. 2017; Mackenzie, & Talbott, 2018)

17.1.1.1. 1. Participant driven data collection that captures and deepens concerns or attitudes about environmental, economic, or social issues (Abma, Lips, & Schrijver, 2020; Budig, Diez, Conde, Sastre, Hernán, & Franco, 2018).

17.2. 2. Paulo Freire’s Empowerment Education Theory (Abma, Lips, & Schrijver, 2020; Kunt, 2020)

17.2.1. 1. Saw education as a means of social change through personal empowerment (Abma, Lips, & Schrijver, 2020; Kunt, 2020).

17.2.1.1. 1. Education awakens a “critical consciousness” (Kunt, 2020; Torre, et. al, 2017).

17.2.1.2. 2. Realization of institutionalized injustices and one’s capacity to enact change (Aamlid, & Brownfield, 2019; Kunt, 2020);

17.2.2. 2. "banking concept of education" (Torre, et. al, 2017)

17.2.2.1. 1. Reverses the deficit view of educational power and instruction (Aamlid, & Brownfield, 2019; Abma, Lips, & Schrijver, 2020)

17.2.2.2. 2. Practices make the individual center of the learning process (Benedict, 2019; Kunt, 2020; Wang, & Stack, 2018).

17.2.2.3. 3. Others facilitate learning rather than mete out knowledge.

17.3. 3. Critical Disability Theory

17.3.1. 1. Empowers through research/ reflection experience (Abma, Lips, & Schrijver, 2020; Wang, & Stack, 2018).

17.4. 4. Social model uses PAR method to include disabled people in all aspects of the creation and development and analysis of the study as possible so it is :co-designed and co-produced” (Abma, Lips, & Schrijver, 2020; Kunt, 2020; Raymond, 2019, p8;).

17.4.1. 1. “United Nations CRPD, and the moral imperative for skill and knowledge transfer within the research community to include people with disability” (Raymond, 2019, p8).

17.4.2. 2. People “with and without disability” co researchers (Raymond, 2019; Taylor, & Balandin, 2020).