Native Americans With Disabilities

1. Native Americans With Disabilities Alison Boyd-Ball, Ph.D. University of Oregon University Centers on Excellence

2. Goals and Objectives • Overview of laws affecting American Indians with disabilities and the over-representation in special education • Review Outcomes for Students With Problem Behaviors in School: Issues, Predictors, and Practices • Improve understanding of the needs of Indian families seeking disability services: access; Utilization; Quality of care; Cultural competence; Health beliefs, perspectives and traditional medicine; Health education, health promotion and prevention; Health status and social status • Identify and recommend tribal and educational strategies to overcome barriers to appropriate care for American Indians with disabilities, along with identifying strengths of Indian people in general Oregon Indian Education Association

3. What Is Developmental Disability? • Developmental disabilities is the term that covers a wide range conditions which affect an individual's mental and/or physical development. Autism, learning disabilities, dyslexia, epilepsy, cerebral palsy and mental retardation all fall under the category of developmental disabilities. Oregon Indian Education Association

4. IDEA: Education of Students With Disabilities The Individuals with Disabilities Education Act (IDEA) mandates that all children have available to them a free and appropriate education designed to meet their unique needs. Changes in the percentage of total public elementary and secondary enrollment and the distribution of students with disabilities affect the level of effort required of educators and policymakers to comply with the current law and help them to forecast the need for future resources. Oregon Indian Education Association

5. Early Identification (Idea cont..) Children eligible for early intervention services under Part H range in age from birth through age two and are (1) experiencing delays in one or more of the following developmental area: physical, cognitive, communication, social or emotional and adaptive development or (2) diagnosed with a physical or mental condition that is likely to result in developmental delay. States have the option to include infants and toddlers who are at risk for delay. The definition of at risk varies from state to state but could include infants and toddlers who are medically at risk (poverty, low birth weight, abused, neglected) Oregon Indian Education Association

6. Definition of Developmental Disabilities * As defined by the Developmental Disabilities Assistance and Bill of Rights Act of 1994. The term developmental disability means a severe, chronic disability of an individual 5 years of age or older that: • is attributable to a mental or physical impairment or combination of mental and physical impairments; • is manifested before the individual attains age 22; • islikely to continue indefinitely; Oregon Indian Education Association

7. Definition Cont. • results in substantial functional limitations in three or more of the following areas of major life activity: self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living, and economic self-sufficiency; and • reflects the individual's need for a combination and sequence of special, interdisciplinary, or generic services, supports, or other assistance that is of lifelong or extended duration and is individually planned and coordinated, except that such term, when applied to infants and young children means individuals from birth to age 5, inclusive, who have substantial developmental delay or specific congenital or acquired conditions with a high probability of resulting in developmental disabilities if services are not provided. Oregon Indian Education Association

8. No Child Left Behind Act of 2001January 3, 2001 SEC. 1001. STATEMENT OF PURPOSE. The purpose of this title is to ensure that all children have a fair, equal, and significant opportunity to obtain a high-quality education and reach, at a minimum, proficiency on challenging State academic achievement standards and state academic assessments. This purpose can be accomplished by — (1) ensuring that high-quality academic assessments, accountability systems, teacher preparation and training, curriculum, and instructional materials are aligned with challenging State academic standards so that students, teachers, parents, and administrators can measure progress against common expectations for student academic achievement; (2) meeting the educational needs of low-achieving children in our Nation's highest-poverty schools, limited English proficient children, migratory children, children with disabilities, Indian children, neglected or delinquent children, and young children in need of reading assistance; (3) closing the achievement gap between high- and low-performing children, especially the achievement gaps between minority and non-minority students, and between disadvantaged children and their more advantaged peers; Oregon Indian Education Association

9. No Child Left Behind Act of 2001 (cont.) (4) holding schools, local educational agencies, and States accountable for improving the academic achievement of all students, and identifying and turning around low-performing schools that have failed to provide a high-quality education to their students, while providing alternatives to students in such schools to enable the students to receive a high-quality education; (5) distributing and targeting resources sufficiently to make a difference to local educational agencies and schools where needs are greatest; (6) improving and strengthening accountability, teaching, and learning by using State assessment systems designed to ensure that students are meeting challenging State academic achievement and content standards and increasing achievement overall, but especially for the disadvantaged; (7) providing greater decision making authority and flexibility to schools and teachers in exchange for greater responsibility for student performance; (8) providing children an enriched and accelerated educational program, including the use of school-wide programs or additional services that increase the amount and quality of instructional time; Oregon Indian Education Association

10. No Child Left Behind Act of 2001 (Cont.) (9) promoting school-wide reform and ensuring the access of children to effective, scientifically based instructional strategies and challenging academic content (10) significantly elevating the quality of instruction by providing staff in participating schools with substantial opportunities for professional development (11) coordinating services under all parts of this title with each other, with other educational services, and, to the extent feasible, with other agencies providing services to youth, children, and families; and (12) affording parents substantial and meaningful opportunities to participate in the education of their children Oregon Indian Education Association

11. AI/AN Students Are Slightly Over-represented in the Special Education Population” (U.S. Department of Education, 2000). Oregon Indian Education Association

12. Oregon Public school student membership by racial/ethnic category Source: NCES Oregon Indian Education Association

13. Oregon Population 2000 Oregon Indian Education Association

14. Oregon Ethnic MinorityPopulation Trends Oregon Indian Education Association

15. Oregon Disabilities Population Oregon Indian Education Association

16. Types of Disability in Oregon Oregon Indian Education Association

17. Percentages of Types of Disabilities2000-01 School Year Ages 6-21 Source: Idea data Oregon Indian Education Association

18. Percentages of Students Ages 6-21 Served Under IDEA (2000-01) Oregon Indian Education Association

19. Outcomes for Students With Problem Behaviors in School: Issues, Predictors, and Practices • About 50 percent of students identified under IDEA as having emotional and behavioral disorders drop out of school. Once they leave school, these students lack the social skills necessary to be successfully employed; they consequently suffer from low employment levels and poor work histories • Poverty is the single greatest predictor of academic and social failure in America’s schools • Data on physical health indicate that many parents of children entering early intervention reported their child’s health to be very good or excellent; however, the proportions were smaller than those reported for the general child population under age 5 • Results Experienced by Children and Families Entering Early Intervention Oregon Indian Education Association

20. Outcomes cont. • Data on physical health indicate that many parents of children entering early intervention reported their child’s health to be very good or excellent; however, the proportions were smaller than those reported for the general child population under age 5. • Children who begin early intervention at less than 12 months of age are much more likely to have a diagnosed condition or a risk condition. • Recipients of early intervention are being examined, including the need for future services, physical health, developmental attainments, academic skills, memberships in groups such as being a member of a sports team, and benefits from alternative exam formats, additional time and tutors to assist with ongoing coursework. • Young people with disabilities drop out of high school at twice the rate of their peers. Oregon Indian Education Association

21. Outcomes cont. • Enrollment rates of students with disabilities in higher education are 50 percent lower than enrollment among the general population. • Most public school educators do not feel well prepared to work with children with disabilities. • Half of those who are in special education are identified as having specific learning disabilities, and many of those identified for special education are simply because they cannot read. • Over-representation of minority children in special education – they are more likely to be labeled and placed as emotionally disturbed. Oregon Indian Education Association

22. Preschoolers Served Under IDEA • States reported serving 588,300 preschool children with disabilities during the 1999-2000 school year, or 5 percent of all preschoolers who lived in the United States and Outlying Areas during the year. • State-reported data for 1999-2000 indicate that 67 percent of preschoolers who received services under IDEA were white, 16 percent were black, 14 percent were Hispanic, 2 percent were Asian/Pacific Islander, and 1 percent were American Indian/Alaska Native. • The racial distribution of preschool children served was generally comparable between 1998-99 and 1999-2000. From 1998-99 to 1999-2000, the proportion of Hispanic preschoolers served grew by 1.7 percent, while the proportion of white preschoolers served declined 1.6 percent. Oregon Indian Education Association

23. Students Ages 6 Through 21 Served Under IDEA • The number of students ages 6 through 21 with disabilities served under Part B of IDEA reached 5,683,707, a 2.6 percent increase over the 1998-99 school year. • Specific learning disabilities continued to be the most prevalent disability among this population, representing half of the students with disabilities served under IDEA. • Black students with disabilities exceeded their representation among the resident population. The most striking disparities were in the mental retardation and developmental delay categories. Oregon Indian Education Association

24. Problems, Issues & Barriers • Ignore needs of this population • Lack of understanding and knowledge of this population by educational providers • Few initiatives to address the specific training needs of professionals who serve ethnic minorities with disabilities - lack of preparation of professionals who serve minorities • Focus on Indian populations are usually negative - alcoholism, poverty, family violence, etc • Own cultural differences can affect interventions and often cause to interpret situations and behaviors wrongly Oregon Indian Education Association

25. At-risk Population Educational attainment, residence, employment history, marital status, and income influence health throughout life and may compound problems • Influence on the onset of disabilities: income and educational attainment does not provide equivalent advantages to American Indians as it does for white, important differences by race do persist • resources to cope with disabilities • assessment and diagnosis - sociocultural background factors interact with mental disorders to produce dissimilar behavioral expressions of the same disorder among members of different ethnic groups • erratic employment patterns, work in hazardous and physically demanding occupations, and inadequate fringe benefits, such as health insurance, are among the involuntary social risk factors that have disproportionate impact on Indians. • Due to negative life expectancies, disadvantaged Indians may “age sooner” than whites, thus require earlier and long-term health and social interventions. Oregon Indian Education Association

26. Ideas/solutions (Faircloth & Tippeconnic III, 2000) Preparation and Recruitment of Special Educators and Related Service Providers • Training SE to work with AI/AN students • Educating AI/AN to be special education teachers (I.e. NAU, Pennsylvania State University, Dull Knife Memorial College, Ft. Peck Community College, Little Big Horn College, Sinte Gleska College and Sitting Bull College) The Rights and Responsibilities of Parents • Get to know your rights & the laws (Parents and Indian Educational staff) • Collaborative Effort between parents, educators, & students) interact and encourage family activities Oregon Indian Education Association

27. Ideas Cont. • Be non-judgmental, acknowledge, affirm and encourage parents’ efforts • Be responsive to parents’ needs and concerns • Be flexible when scheduling meetings • Establish parent support groups or networks Culturally and Linguistically Appropriate Assessments • Use a combination of formal and informal assessments • Involve parents in the interpretation of results, use caution • Be aware of and responsive to cultural and linguistic differences Oregon Indian Education Association

28. Ideas Cont. Education in the Least Restrictive Environment • Parents, Indian Educators or other support facilitators help general education teachers write IEP goals and objectives • Review and, if needed, modify the general education curriculum • Provide information and resources to general educators • Provide individual and small-group assistance • Coordinate related services Oregon Indian Education Association

29. Ideas Cont. Good practice is to understand the culture and ethnicity (silence, approach individuals, eye contact, use examples of that culture, etc.) Recognize strengths such as: deeply felt spiritual beliefs, generosity, courage, etc. (Which requires therapist to become familiar with those beliefs) Employ workers (or consultants) to help guide, interpret in work (grief, death and dying) Message - it’s possible to have a degree, hold a job, and hear a coyote speak to you while out on a walk Oregon Indian Education Association

30. Ideas Cont. • States are establishing parent-training centers to prepare parent to use the service system, including training in service coordination • Family-centered care is based on respect for and acceptance of each family’s culture, structure, roles, values, beliefs, and coping styles • Family-professional collaboration Oregon Indian Education Association

31. Mainstream society: A message regarding developmental disabilities is that the individual is the problem, in that something within them is undeveloped, defective, or diseased, and that the something should be developed, fixed, or treated by “us”. View family as the problem. Many Indian Communities: Traditional communities respond in different ways than mainstream Health characteristics that might be defined as disabilities become framed as special strengths rather than human deficiencies Indian societies have an uncanny gift for for tolerance How Do We View Disabilities? Oregon Indian Education Association

32. ACCESS • Physical limitations - location of services, transportation • Awareness of services - do the individual with disabilities & family know what or where the available services are • Cultural Availability - To provide culturally competent services, must assess areas in which culture and ethnicity may affect the families and child’s access to and use of educational services Oregon Indian Education Association

33. Utilization • Apt to lack usual sources of routine and acute care as well as continuity between sources of care • Double jeopardy - the effects of racism, personal care services may mean involving other agencies like CPS, police, etc. • issues of communication & understanding • economics • access • attitudinal factors • problems with referrals • transportation • family problems (multifaceted) Oregon Indian Education Association

34. Quality of Care Changes in teacher-parent interactions rather than addition of new services • sensitivity & real awareness of student & family circumstances is the first step • eventually will lead to mutual trust Involve the youth with the disabilities with IEP planning Oregon Indian Education Association

35. Assessment/Diagnosis How do we define success for our Indian children? How do we define this same success for our Indian children who have disabilities? The diagnosis of a disability is not the cure. When parents hear experts describe their child’s problem without a solution they can feel helpless, frustrated, and inadequate. How will parents respond: withdraw, ignore, deny . . . Oregon Indian Education Association

36. Assessment/Diagnosis Cont. • How do we maintain dignity and respect? How do we even define dignity and respect? • Child with a disability is truly a test of unconditional love by the parents, the family and the community. • You can just Love them, not just for what they do. • High placement of Indian children in Special Education programs - most for discipline problems. Culturally-biased testing, a possible genetic hearing problem, and an assorted collection of other educational and social issues (mislabeled, misdiagnosed) • Early identification is the best way - misdiagnosis - prison, jail, substance abuse, etc. Oregon Indian Education Association

37. Cultural Competence • Shared attitudes/values, awareness of one’s values, attitudes and biases; knowledge of the client’s culture, and use of appropriate counselor roles Oregon Indian Education Association

38. Cultural Competence Cont. • Five elements of cultural competence are: (defined by Bross, Bazron, Dennis, and Isaacs, 1989) • Acknowledging and valuing diversity (Does improve the quality of service delivery) • conducting a cultural self-assessment (Being aware of one’s own culture and how it shapes beliefs and behavior, both personal and professional, is critical) Oregon Indian Education Association

39. Cultural Competence Cont. • recognizing and understanding the dynamics of difference (collective orientation vs.. individual, different histories affect the interaction and establishment of rapport between racially and ethnically different clients and practitioners) • acquiring cultural knowledge (Need to have in-depth understanding of the cultural background of their clients/families; needs to be ongoing; effects of soioeconomis status, education, family history, identity with affiliations) • and adapting to diversity (interventions need to be adapted to respond to the family’s culture; example - short-term intervention vs.. developing rapport/trust) Oregon Indian Education Association

40. Culturally Competent and Family-centered • Defining family - will need to assist workers to define and describe their family in terms of its composition, structure, roles, and relationships • Recognizing family strengths and individuality - style of coping with the demands of caring for a family member with a disability • Most service providers are committed to serving those who are oppressed, under-served, or excluded from receiving services • Level of family participation needs to be defined by family in a cultural view so providers do not interpret as lack of caring Oregon Indian Education Association

41. Health Beliefs, Perspective and Traditional Medicine • Individuals of diverse ethnic background often have beliefs about health, disease, and treatment, which vary significantly from American scientific medical practice. Age, generational influence, disability, religion, social status/economic status, sexual orientation/gender, heritage, and mainstream/experience may influence differences within cultural/tribal groups. • Body, Mind, and Spirit practice model • Health care for traditional American Indians must operate from an Indian value orientation - view illness as a symptom, etc. Oregon Indian Education Association

42. Education, Health Promotion and Prevention Improving care for American Indian children with chronic conditions: • Educational Providers • learn about traditional Indian ways and how this relates to the care of the individual and the impact on the family • respect native practices, language, and ways of communicating • understand the role of extended family in caring for children • provide unbiased educational service • be willing to combine traditional and western educational practices and services Oregon Indian Education Association

43. To improve communication between families and providers: • listen to families • communicate respectfully with families • be sensitive to family concerns • learn about the child’s family and how the chronic condition impacts them • value what families have to say • understand variations in communication patterns • improve communication between families and providers in school and community settings Oregon Indian Education Association

44. To Improve the Availability of Information and Resources: • inform families about available educational services and resources • provide clear information to families about the child’s condition and education • provide more culturally appropriate and culturally specific educational materials • make information more accessible - schools, etc. • keep families informed about their child’s condition and available resources • provide more information about childhood chronic conditions to schools, child care settings and the community at large Oregon Indian Education Association

45. To Improve Access to Services • coordination services with families • provide enough time to work with children and families • reduce access barriers - transportation, financial, waiting times for appointments, lack of information about resources and paperwork • offer more services in the school & community Oregon Indian Education Association

46. To Improve Support Systems for Families • Provide support and education to families at time of assessment & diagnosis • help families negotiate educational systems • provide coordination services when needed • provide more support groups for children and families • provide more resources for children with special needs in the school & community Oregon Indian Education Association

47. Education Status and Social Status • No one overriding issue exists, nor does an overall solution • Complicate issue - staff shortages, lack of Indian educational professionals, inadequate financial resources, poverty, racism, lifestyle, alcoholism, cultural change, child abuse and neglect, spiritual loss, suicide, unemployment . . . Oregon Indian Education Association

48. Tribal Responsibilities • Policies and resources to support ongoing professional development and inservice training (at all levels) for Indian educators and supportive staff in the field of education and disabilities; • Educational policies to assure that families are provided with educational supports/staff necessary to work within culturally and linguistically diverse communities • Encourage and monitor improvement of cultural competence at the school board, various schools, special education program and staff levels • Policies for and procedures to review periodically the current and emergent demographic trends for this special population • Policies and allocated resources for the provision of special need services • Requirements for all programs to include culturally and linguistically competent services for this population Oregon Indian Education Association

49. How has political policies affected Indian families, thus affecting how we deal with Indians with disabilities? Historical Western attitudes have caused cultural disruptions and contributed to the alienation of American Indians from the mainstream of U.S. society. How does this affect family and school relationships? Oregon Indian Education Association

50. Summary To better serve an Indian family with a member who has a disability, what would you propose as an information dissemination tool and what would it look like? Oregon Indian Education Association