Disability Studies Quarterly
Spring 2005, Volume 25, No. 2
<www.dsq-sds.org>
Copyright 2005 by the Society
for Disability Studies


Empowering Indigenous Families who have Children with Disabilities:
An Innovative Outreach Model

SusanRae Banks, Ph.D.
Associate Professor of Special Education
Department of Teaching and Learning
Washington State University
Pullman, WA 99162-2132
E-mail: arapahorae@yahoo.com

Darcy Miller, Ph.D.
Associate Professor of Special Education
Department of Teaching and Learning
Washington State University
Pullman, WA 99162-2132
Email: darcymiller@wsu.edu


Abstract: Socially and legally it is acknowledged that families with children with disabilities are a critical component of any educational program or Individualized Education Plan (Yell, 2002). Indigenous families with children who have disabilities face unique additional challenges in working collaboratively with schools and education professionals. Parent Training and Information Centers started as a result of federally funded research on the needs of families of children with disabilities. The unique challenges faced by Indigenous families with children who have disabilities are discussed, with particular attention to the critical issues impacting social equity and post secondary education outcomes. An innovative outreach model is discussed for its potential in meeting the needs of Indigenous families with children who have disabilities. Components of the model are described as well as the continuing outreach challenges. The authors conclude with directions for future outreach strategies and research with Indigenous families and communities.

Keywords: Indigenous people, families of children with disabilities, Individualized Education Plan, post-secondary outcomes

Introduction

It is well-recognized that families with children with disabilities are a critical component of any educational program or Individualized Education Plan (Yell, 2002). This is equally true for Indigenous families with children who have disabilities, both on and off reservations. However, Indigenous families face unique additional challenges working collaboratively with schools and educational professionals (Cleary & Peacock, 1998; Deyhle & Swisher, 1997; National Council on Disability, 2003). Some of these unique challenges include difficulties in cross-cultural communication, historical and/or contemporary trauma experienced by families in schools, ongoing neglect of language, and a lack of culturally rich curriculum for their children. In fact, Indigenous families have been described as the most marginalized groups with respect to educational equity (United States Commission on Civil Rights, 2003). The survival of Indigenous peoples has been and continues to be dependent upon family and tribal support circling all aspects of life. (Indigenous families as defined for this manuscript are American Indian Tribes, Alaska Natives, and Native Hawaiians.) Elementary, secondary, and post-secondary education is but one thread of life's education; yet, that part of life is interconnected, as in a tapestry, to all other aspects of life including spiritual, physical, and mental. It is therefore essential that Indigenous families' involvement in the educational pathways of their children consist of involvement that is informed, valued, and encouraged.

Tribal sovereignty can also play a significant role in ensuring that the educational needs of tribal members are met (Charleston, 1994). Tribal sovereignty refers to the unique government-to-government relationship that individual federally recognized tribes have with the U.S. government, not unlike the U.S. government-to-government relationship with Canada, Mexico, and other nations. Appropriate educational services are mandated by treaties (i.e., government-to-government written agreements regarding each Nation's responsibilities to the other) that most tribes have with the U.S. government. Despite the mandates of Treaty Rights, special education laws, and anti-discrimination laws pertaining to individuals with disabilities, equity in education for AI/AN [Indigenous] peoples is dismal (Charleston, 1994; Deyhle & Swisher, 1997; U.S. Department of Education, 2001; United States Commission on Civil Rights, 2003) (Banks, 2004).

Currently, Indigenous families' involvement in education – in a general and specific sense – cannot be described as "optimal." For example, Indigenous students have the highest dropout rate from public schools, the lowest academic achievement levels, the lowest rate of school attendance, the lowest rate of participation in postsecondary education, and some of the highest suicide rates (Deyhle & Swisher, 1997; National Council on Disability, 2003; United States Commission on Civil Rights, 2003). The drop-out rate, or as some educators have termed it, the "force-out rate" (Reyhner, 1992) for these children and youth ranges from 25% to 98%, the highest of any group in the United States (Charleston, 1994; National Center for Educational Statistics, 1999; National Council on Disability, 2003). These estimates vary widely because of the lack disaggregated data on the drop/force out rate of Indigenous students at national, state, and local levels (Banks, 2004; National Council on Disability, 2000; 2003). The number of youth reflected in the force-out [dropout as it is commonly referred to] and suicide rates indicate a significant loss of gifts and talents that could be shared within and across tribal communities. These factors speak to the "secret war" that Charleston (1994) described as an ongoing attempt to assimilate and marginalize American Indians through the educational systems to which children are subjected. Charleston has indicated the urgency of addressing the educational plight of the "People" (Charleston, 1994).

Family involvement in education that extends to community, tribal, and government-to-government relations is critical for the survival of Indigenous peoples' education, language, and culture and is essential for thriving in the global future. To accomplish this, outreach efforts to address Indigenous families' educational needs in schools on and off reservation are important. Outreach efforts that focus on providing information and training to families and involving families in the design, as well as the evaluation of services and program are critical. Families should be actively involved in designing educational programs that focus on language and culture, that provide culturally responsive teaching, and that offer unbiased assessment methods within special and general education. This involvement is becoming particularly important in light of federal laws that have been passed in the United States, such as the No Child Left Behind Act of 2001, because of the potential impact of the curriculum and assessment mandates recent legal actions. In addition, it is critical that families know their rights and responsibilities under the laws that govern services for families of children with disabilities (Faircloth & Tippeconnic, 2000; National Council on Disability, 2003). Parent Training and Information Centers (PTICs) as well as schools share the responsibility of ensuring that Indigenous families have the knowledge and skills to actively participate in their children's educational services.

Parent Training and Information Centers started as a result of federal recognition of a growing need for education and involvement of families of children with disabilities. The first PTIC started in 1975 when the Federation for Children with Special Needs was funded to conduct a pilot project of parent-to-parent assistance and training (Federation for Children with Special Needs, 2005). Numerous studies were conducted in the 1970s on the importance of parent involvement in the education of children with special needs (Biro, 1979; Flint & Deloach, 1975; Levitt & Cohen, 1974; Marion, 1979; Rudberg, 1979). These studies also emphasized the need for parent training given the various roles (i.e., teacher, IEP team member, advocate, etc.) that parents were expected to assume. With the passage of the federal Early Childhood Service Provision Act in 1986, the need for parents to have training and up-to-date information increased (Heward, 2003). Parents with young children with disabilities needed support and information on how to participate in their child's Individualized Family Service Plan (IFSP), such as acting as case manager, understanding typical and atypical child development, and addressing the child's therapy needs (Sandall, McLean, & Smith, 2000). This led to addition federal support for PTICs; thus, the number of PTICs slowly increased.

Families needed and continue to need information on disabilities (i.e., specific information on their children's disability and the impact on learning academic, social, and functional life skills, effective teaching methods for their children, types of services that their children might benefit from, etc.), legal rights and responsibilities as defined by the Individuals with Disabilities Education Act and the Americans with Disabilities Act, These families also continued to need training in how to advocate for their children (i.e., standing up for your child and family, voicing needs, and ensuing needs are met according to the laws and "best practices" identified in the research), as well as resource/networking support (e.g., providing mentors, linking parents together to assist each other, providing access to other service agencies, etc.). Such information and training is critical to ensure that the educational experiences are comprehensive (e.g., meet all the needs of children), equitable to those with and without disabilities (e.g., all students get their needs met and have curriculum that is appropriate), and lead to successful post-secondary education (e.g., college or technical training opportunities), and/or meaningful employment (e.g., sustainable and interesting jobs that result in the person being able to contribute to the community in which they live and earn wages equivalent to those without disabilities who have similar positions) (Heward, 2003; National Council on Disability, 2003).

PTICs are federally funded on a competitive five-year cycle with yearly accountability reports. PTICs may or may not be housed within other existing nonprofit organizations serving individuals with disabilities and their families. The number of PTICs has grown such that each state has at least one center, and several states (California, New York, Illinois, Arkansas, Kentucky, Michigan, Ohio, Texas, and Wisconsin) have multiple centers, totaling 73 PTICs across the United States and Territories (i.e., Puerto Rico, Virgin Islands, American Samoa). In addition to state PTICs, there are two national PTICs; one responsible for serving military families (Specialized Training of Military Parents - STOMP), and another that serves American Indian/Alaska Native families (National Native Americans Families Together Parent Training and Information Center - NNAFT).

STOMP and NNAFT were funded to address the unique needs of families that remained underserved by other PTICs. The state PTICs have been successful in reaching out to many families; yet, families from culturally/linguistically diverse backgrounds are grossly underserved (Harry, 1992; National Council on Disability, 2000; 2003). For example, Indigenous families have frequently indicated during training sessions conducted by NNAFT, that they were not aware that there were PTICs within their states or communities. One mother's comments illustrates the lack of services she experienced: "By the time I even found out about service coordination, I had already gone through most of the hoops and fought with everybody and built my own list of resources. I had to go through the autism society in Utah and find out about services here in ... I mean seriously, I have gone through 50 organizations, doctors, including here on the reservation and at the hospital trying to find help for my son and nobody knew anything" (Banks, 2004). Thus, the need for a national PTIC to address the unique needs of Indigenous families, facilitate linking families with their local PTICs and other support resources, and provide state PTICs with information and training on culturally responsive outreach and service provision was warranted.

With the emphasis on family involvement in such legal mandates as the Individuals with Disabilities Education Act (IDEA) and the Americans with Disabilities Act (ADA), there is a need to institutionalize PTICs and other advocacy efforts if equity in education is to become a reality for children and young adults with disabilities, particularly those from underserved populations. The very fact that funds are discretionary and competitive, undermines the importance placed on society's most marginalized people, as competitive funding is very likely be out of reach of those in need. Civil rights, at the core in the United States, rests on how "all the people" are treated regardless of race, religion, gender, etc. (National Council on Disability, 2000). The Americans with Disabilities Act was built on the same tenants of the Civil Rights laws - to achieve equity for persons with disabilities. To achieve equity, family involvement in education must be supported through continuous funding at the tribal, federal, state, and local levels, not through competitive and often uncertain funding.

Unfortunately right now Indigenous families face the realities of an educational system in which their children are over-represented in special education and underrepresented in programs for the gifted and talented (Banks, 1997; Council for Exceptional Children and the National Alliance of Black School Educators, 2002; Faircloth & Tippeconnic, 2000; Garcia & Pearson, 1994; Reshley, 1988; Samuda, Kong, Cummins, Lewis, & Pascual-Leone, 1989). In addition, of those who are properly identified as having special needs, many are either underserved or not served at all (National Council on Disability, 2000; 2003). The lack of appropriate cultural and language curriculum and culturally responsive pedagogy further compound the pursuit of equity in education (Deyhle & Swisher, 1997; Harry, 1992; Harry, Kalyanpur, & Day, 1999; National Council on Disability, 2000).

Families are the foundation of tribes and their voices need to be heard. However, being heard is just the first step - action must follow. In order to ensure action, families must get involved (in as much as they can) in system change efforts (i.e., participate in tribal, community, state, and national forums to advocate policies and practices that match the family and tribal priorities and needs) to improve the success of their children, and their children's children. Increasing family involvement in the very system that has been and continues to be oppressive is indeed challenging. Ironically, one of the most powerful keys to increasing family involvement is education; thus, the educational system presents a double-edged sword effect that cannot be overlooked. In the "spirit" of fulfilling future visions, the purpose of this paper is to (a) discuss critical issues facing Indigenous families who have children with disabilities, (b) provide an overview of the outreach model of the National Native American Families Together Parent Training and Information Center (NNAFT), and (c) discuss future directions for practice and research in Indian Education inclusive of special education.

Critical Issues Facing Indigenous Families who have Children with Disabilities

There are numerous issues facing Indigenous families that must be addressed to ensure children receive an equitable education that leads to post-secondary education and/or employment opportunities, community/independent living opportunities, and future leadership opportunities. In a report to Congress by the National Council on Disability (2003), family/tribal involvement in general and special education, culturally responsive service delivery, reading and standard English performance, family/professional communication (cross-cultural communication) and collaboration, parent/caregiver information, and resource dissemination, among other issues, were identified as needing improvement. The Council's recommendations for improvement included establishing effective research-based interventions, developing and implementing culturally responsive curriculum, implementing language and cultural programs, developing Tribal policies regarding special education and disability services, developing inter/intra-agency collaboration/partnerships to effectively build seamless responsive services (driven by child, family, and tribal needs and priorities), cross-tribal advocacy for disability issues at the state and national levels (use sovereignty to effect educational change for all Indigenous people), and incorporate Tribal consensus regarding accountability of any and all service delivery systems. In other research studies, Indigenous families who have children with disabilities have echoed these critical concerns (e.g., Banks, 2004).

NNAFT's mission is to address culturally responsive service delivery within special education through working with families on increasing their knowledge of legal rights and responsibilities (e.g., in IDEA and ADA), "best practices" in Indigenous education (inclusive of special and general education), family/professional communication (cross-cultural communication) and collaboration, parent/caregiver information, resource dissemination, and advocacy. In addition, NNAFT addresses specific training needs that Indigenous tribes/communities request for their families (e.g., transition information, culturally responsive services and assessment, positive behavior support, etc.). There are also ethnic and cultural issues, in addition to disability issues, that impact Indigenous families as they attempt to secure appropriate educational programs for their children with disabilities.

Ethnic/Cultural Issues

The research literature clearly illuminates the pressing need to stop the practice of referring and/or placing children, Indigenous and non-Indigenous, in special education as a result of cultural and/or language differences (National Council on Disability, 2000; Banks, 1997; Cleary & Peacock, 1998; Deyhle & Swisher, 1997; Harry, Kalyanpur, & Day, 1999). It is also clear that those responsible for the education of children need to pay particular attention to the diverse worldviews of families that effect child rearing practices, child behavior and development, communication styles, learning preferences, and the relationship to free appropriate education (Banks, 1999; Benner, 1992; Swisher, & Tippeconnic, 1999; Tafoya, 1989).

Additionally, the development of culturally responsive assessment tools and processes that identify strengths and needs in a multidimensional fashion, as well as accountability for implementation must be actualized for both non-Indigenous and Indigenous families with children who have disabilities. In a study of parent perspectives, one parent shared, "He was 18 months old when we started noticing that he was different. He didn't try and talk... He didn't play. He would sit and rock and fidget with his hands all the time. He wouldn't look at anybody. You couldn't get his attention and at first we thought he was deaf. So we started going to doctors trying to get them to test him. They kept saying let's wait, let's wait. Nobody wants to test a 3-year-old child for autism around here, not if they're an Indian Kid. They told me to wait until he's been in school a couple years and to see how he does... I started fighting and going to different agencies and I don't know how many different pediatricians... to see if we could get him tested " (Banks, 2004). The impact that assessment has on effective teaching for all children in respect to referrals, placement, and related services in special education cannot continue to be overlooked. It is critical to work as a coalition (i.e., Indigenous families, tribes, communities, multicultural task forces, etc.) to demand continuous accountability for the entire educational process including the effects of general school policies on children with disabilities and their families (Gay, 2000).

Another issue that must be addressed is the need for ongoing professional development. Caucasian and Indigenous administrators, teachers, paraprofessionals, related service providers, higher education faculty in pre-service teacher education programs, and local education agencies need more training with respect to culturally appropriate assessment, cross-cultural communication, working respectfully with diverse families, special education legal and ethical issues, authentic multicultural curriculum development, and developing partnerships with local communities. These realities will require aggressive pursuit of systemic issues that result in educational equity barriers (King, Hollins, & Hayman, 1997).

These challenges impact Indigenous children with disabilities in complex historical and contemporary ways. For example, one parent shared, "You know I have been working almost 3 years to prepare our school system here, to prepare my son to go to school here. I've taken special trainings, and that's so that I can work with the schools, and they don't want him here. Legally, they can't keep him out. They cannot keep him out of school... they want me to send him... (a school) for children with special needs. I don't know if you have ever seen it, I call it just a holding place." Another parent in the same study shared, "Coming from a Native village into a town was a real struggle for him because it is a culture thing...I have been in the Native culture, in the ways of trying to deal with using him, going out and doing stuff with him...the school system didn't they didn't see that, they didn't work with him...it was a slow path for him because he needed to see where, how he could trust these teachers...I start from the bottom and if I can't get anything done on the bottom then I go to the next level and on up like that. And that is my biggest challenge with the school district...you know the Indian kids, I can see them being pushed aside. And I still see it" (Banks, 2004).

Disability Issues

Disability equity barriers persist across multiple areas from accessibility and services to implementation of Individualized Education Programs and Individualized Transition Plans (Banks, 2004; National Council on Disability, 2003). For example, persons with disabilities face issues with transportation, mobility, and living arrangements. These issues pose an even greater challenge for Indigenous people with disabilities on and off reservations, many of whom that live in poverty, lack adequate transportation and housing, and struggle to find employment opportunities (United States Commission on Civil Rights, 2003). Consider this example: A parent of a child with Down Syndrome and health impairments living on a rural reservation, was told by the local public school that they did not have the staff to provide educational services for her son, so she would have to take him over 70 miles to the city for school. This parent did not have a vehicle, and had several other children in the local school (Banks, 2004). Another in the parent study shared, "talking about lack of being connected with other families that had children with Down Syndrome...Gosh they probably think, she lives way out here. I live 50 miles from any services. I have to travel. Maybe that is why, nobody wanted to tell me?...It was so terrible for me...I only got one sheet of paper that told me what Down syndrome was" (Banks, 2004).

The disability rights movement has affected major changes in U.S. society (laws governing accessibility, non-discrimination, the right to a free appropriate public education, vocational rehabilitation services, etc.), yet equity is far from being a reality, especially for Indigenous families who's language, culture, geographical distribution, multiple educational systems (i.e., public schools, Tribal schools, Bureau of Indian Affairs Schools, etc.), and economic disparities, etc. pose unique ongoing challenges.

Educational opportunities such as effective team-based decision-making, with families actively involved in all aspects of the special education process and decisions, as well as quality and consistent follow-through on educational interventions by school personnel are needed. In addition, appropriate referrals and subsequent service provision, effective transition services for post-secondary education (e.g., universities, colleges, trade/technical schools), and school-to-work must be implemented. Adults with disabilities are underemployed, under-educated, and struggle with participating in leisure and life activities at much higher rates than those without disabilities (Gajar, Goodman, & McAfee, 2002; Greene & Kochhar-Bryant, 2003). Indigenous adults with disabilities experience these challenges at even higher rates than non-Indigenous adults with disabilities (National Council on Disability, 2000, 2003).

Additionally, individuals with disabilities are over-represented in the population that drops out of school, in the ranks of incarcerated juveniles, and within the adult penal system.

A large portion of in-school and out-of-school youth with disabilities who are at risk for delinquency or are already involved with the juvenile justice system need specialized educational services to return to their community schools and prepare for transition to adulthood (Leone & Drakeford, 1999; Leone & Meisel, 1997; Leone, Rutherford, and Nelson, 1991; Meisel, Henderson, Cohen, & Leone, 1998). The chances of having delinquent behavior and being adjudicated were 220 percent greater for youth with learning disabilities and emotional and behavior disorders than for adolescents with no disabilities (Dunivant, 1986; McDaniel, 1992; Zionts, 1997) (Greene & Kochhar-Bryant, 2003, p. 11).

Indigenous peoples without disabilities experience these phenomena at greater rates than the dominant population (Indian Nations at Risk Task Force, 1991; Reyhner, 1994; Ryan, 1981; St. Germaine, 1995; Swisher & Tippeconnic, 1999), thus compounding the risk for those with disabilities. These multifaceted challenges must be addressed comprehensively, through each system in society (i.e., schools, health, human services, legal, etc.) (Gay, 2000; National Council on Disabilities, 2003; United States Commission on Civil Rights, 2003). A partial change or improvement in one system will not affect the type of systemic change and improvement that is needed. All children and families warrant no less.

An Innovative Outreach Model

Empowering Indigenous families of children with disabilities with knowledge of disabilities/equity issues and providing them with the self-determination and advocacy skills is an endeavor being pursued at local, tribal, state, and national levels. NNAFT (The National Native American Families Together Parent Training and Information Center) has been designed to empower Indigenous families who have children with disabilities. NNAFT has reached more than 34 federally recognized tribes, approximately, 2,290 families and numerous professionals across 35 states (C. Curry, personal communication, October 8, 2004) with local face-to-face training, support, and information dissemination as well as establishing a "community friends" network across the tribes. NNAFT has recently started outreach to Alaska and Oklahoma, with the goal of providing services to rural and urban Indigenous families, northeastern and southeastern tribes, and Native Hawaiians, as well as conduct follow-up sessions (Governing Board, 2005). The model for outreach implemented by NNAFT, including the establishing community friends, information dissemination and ongoing support, is anything but traditional.

The mission of NNAFT is "to empower families by: (a) increasing their knowledge of the special education process and laws utilizing culturally responsive materials and methods, (b) providing resource support and networking, and (c) maintaining ongoing communication and assistance as needed in each community" (Advisory Council, 2000). The underlying beliefs of NNAFT, evident to families, tribes, and service agencies (local, state, national) include:

1. Each sovereign Nation has the right and responsibility for the education of all their members, as they deem appropriate. Respect for tribal, family, and individual wants and needs is essential. For example, NNAFT staff facilitate learning by encouraging families to share their stories, thereby honoring their realities, hopes, dreams, and visions for their future. This helps to establish an atmosphere of mutual respect where questions can be responded to within the contexts of the local culture. The materials that staff use during their sessions also include Indigenous families' stories and examples that relate to their culture. NNAFT staff also seeks to have local respected elders from the community or their designees as liaisons to provide guidance and access to the families.

2. Cultural differences among and within Nations are honored. For example, when sessions are scheduled with families from a number of different tribes, introductions of all are conducted. In addition, time is given to all to share their stories, cultural contexts, and that which they feel needs to be said and/or done. Sessions are facilitated by Indigenous people and/or Indigenous people facilitate along with their non-Indigenous colleagues.

3. Equity in education for all people is advocated at the national, state, and local levels through networking with various Indian education, health, and social service organizations (i.e., NNAFT staff and consultants work with staff from the state PTICs, National Council on Disability, the National Indian Education Association, National Dissemination Center for Children with Disabilities, Bureau of Indian Affairs, Indian Health Services, etc.) to extend their outreach and share the successes and struggles of the families that they serve.

4. "Learning is living; if you stop learning, you stop living" (personal quote, Banks grandfather). NNAFT's personnel are "living" and are open to feedback from tribes, families, and individuals. For example, NNAFT collects feedback from families at the end of each training session and then periodically through monthly and quarterly follow-up with "community friends." Changes have been made, for example, in how data is gathered from community friends after feedback that the previous form was too time and labor intensive; postcards were then mailed with return postage paid, that provide a series of activities for the community friends to check off as having done that month (i.e., attended IEPs with ______ families, distributed _____ newsletters to families, etc.).

5. Culturally responsive service provision and support is provided (Advisory Council, 2000). For example, NNAFT shares information regarding "best practices" in Indian education as well as executive orders pertaining to families rights for educational services that meet their culture/linguistic needs. In addition, the training sessions as noted above, are provided in a culturally responsive manner utilizing appropriate materials and ways of conducting the sessions.

Outreach Components of the Model

There are several key components of NNAFT that have resulted in successful outreach to tribes, families, and individuals. The first key component is that the ongoing support and information sharing is community-based and face-to-face. Indigenous regional coordinators and consultants provide face-to-face training on special education laws, procedures, and other disability issues through curriculum that highlights parents'/family members' personal stories. The stories provide a basis for discussion of a variety of issues as well as set the context for participants to share their own stories, which in turn leads to further in-depth discussion of legal and ethical issues, "best practices", specific disabilities, interventions, and technological support. For example, one parent shared the following story:

We asked for evaluation and the first IEP meeting the speech, the physical, and the occupational (an OT evaluation had not been done yet at the time of this interview).... So we let it go more than 90 days and we let them have more time than they really needed. Still nothing was done, so we filed a complaint with the state... they were found in non-compliance... I learned that before she turned three, that it was supposed to be in place, the IEP. They were supposed to have everything written up... There was no IEP done her first year of school. She had no services and she is severely delayed in her language. And so what we did this year is wrote a letter to the school because they wouldn't write to me and tell me anything. So we wrote, we asked for an IEP meeting and it took a long time to get this done, but we finally got this done. After the first IEP was established, while the first IEP we didn't get no commitment. There was no speech therapist, or physical or occupational therapist, it was just awful (Paulette) (child attended Indian Head Start Program) (Banks, 2004).

In training, the NNAFT staff would facilitate a discussion on the legal responsibilities of the school to conduct an evaluation within 90 days of a request. The staff would also highlight the rights of parents under the "due process laws" that were used by Paulette to write a letter of complaint to her state Office of Special Education. Further, a discussion would be facilitated about the accountability of the school for the implementation of services agreed to in the IEP, as well as what choices Paulette has in respect to the school's failure to provide such services. These face-to-face training sessions are often held in a community and are tribal specific, are conducted in an inter-tribal setting, or held in conjunction with a tribal conference/event. Families such as the one in this story have been empowered to act, as Paulette did, after attending one of NNAFT's sessions. Another parent had this to share after a training, "My daughter went two years without services; she even had an IEP ... if I knew then, what I know now ... I would sue" (Banks, 2004).

The second key component of the outreach model involves training, which includes providing an in-depth overview of what NNAFT personnel have called "community friends." This component addresses the need for community friends, the various roles that community friends may fulfill, and the need for participants to mentor others within their communities should they no longer be able to fulfill their roles as community friends. A community friend is a person who has received NNAFT training on the laws, the special education process, etc., as well as how to be a community friend. In addition, a community friend should have the desire to share with the community what he/she learned and to provide ongoing resource support for families in their communities. The roles of a community friend vary depending on the roles that an individual desires to take on. For example, some community friends have attended Individualized Education Plan/Individualized Family Service Plan (IEPs/IFSPs) meetings upon request of families in their communities, shared information on the laws and special education procedures, and provided NNAFT information as requested. Others have chosen to share information and connect families with local resources. In addition, some community friends have chosen to become activists (i.e., participating on task forces and/or providing testimony to affect systemic educational needs, policy needs, and family support needs, etc.) at their local tribal and state levels, as well as at the national level. Whatever role a person chooses, the community benefits from the sharing of knowledge and provision of support. NNAFT currently serves more than 400 active community friends across 35 states (C. Curry, personal communication, October 8, 2004).

The third critical component of the outreach model is ongoing communication with community friends. NNAFT sends out information monthly on legal issues, disability specific issues, cultural factors in education, as well as other pertinent and timely briefs. NNAFT calls community friends periodically to assess their needs and outreach efforts. Example of needs that have been identified include information on the laws guiding transition of students with disabilities to the adult system of vocational rehabilitation services, early childhood service provision, and programs that support Indigenous families, etc. Finally, NNAFT has a web page with current information, resource networks, links, and a list of community friends nationwide (www.nativefamilynetwork.com).

The strengths of this outreach model and its continued development are a direct result of ongoing improvements made as a result of feedback from training participants, individuals from other agencies that serve Indigenous families who have children/adults with disabilities, the advisory council, and the governing board. The model used by NNAFT goes beyond the traditional PTICs model of training sessions in that NNAFT provides specific training on a variety of topics, including IDEA , ADA, and the special education process for families to assist other families within their communities. NNAFT also helps community friends build family-school partnerships and provides ongoing personal contact through mailings, phone contact, e-mail, and face-to-face follow-up and sessions. Specifically, NNAFT provides culturally responsive training, including culturally appropriate materials and teaching methods.

These outreach services are critical for effective ongoing training and support that is responsive to families' needs, wants, and desires. Future equitable opportunities of Indigenous children with special needs are at stake. Families, once empowered with knowledge and skills, are able to seek appropriate services for their children, advocate for systemic changes in education that benefits all Indigenous families, and assist their respective tribal education commissions or tribal councils in meeting the needs of Indigenous people with disabilities. The success of NNAFT's outreach is dependent upon the families, communities, and tribes collaborating and working together to fulfill a shared vision of opportunity for children.

Challenges of the Outreach Model

There are always challenges for those who are working toward equity in education for all children. One of the major challenges that NNAFT and others face is developing the necessary resources to fulfill its mission. The funding for the national outreach program is equivalent to that of a regional state parent training institutes. Therefore, the effective national outreach of this center requires that the governing board and others work together to extend their efforts by networking with existing agencies (e.g., Indian Health Services, Indian Head Start, Bureau if Indian Affairs, National Information Center for Children and Youth with Disabilities, etc.), as well as seek additional funding through targeted foundations and other grant opportunities.

Networking is critical for addressing the funding issue as well as other challenges. The needs of Indigenous people are immense, especially, when one considers the complexity of education (i.e., traversing various systems including Bureau of Indian Affairs' schools, tribally-controlled schools, grant schools, contract schools, public schools, private schools, and hospital/in-home educational services) and support service needs (i.e., physical therapy, speech and language therapy, occupational therapy, social security, Medicaid, Indian Health Services, transition services, etc.) of children with special needs and their families. The need to assist families in connecting with local, regional, state, and national support agencies further extends the outreach responsibilities of centers like NNAFT. Finally, the challenge that all service organizations must continue to address is acting as agents of change to impact local, tribal, state, and national policies and procedures to help ensure equity service provision for Indigenous peoples.

Future Directions for Outreach Efforts with Indigenous Communities

The fulfillment of NNAFT's mission requires ongoing spiritual guidance, tribal community support, partnering with schools, local and regional Indian and non-Indian education agencies, as well as other networking and outreach efforts. NNAFT is completing its sixth year of operation in 2005. The excitement of the successes and strategic developments has provided the momentum for action towards the fulfillment of future visions. These visions include securing at least two community friends in every tribal and village community (i.e., urban and rural) served by NNAFT, improving family/professional communication and collaboration (e.g., partnerships among Native families and the professionals who serve them), improving and maintaining educational and other service provision information, extending networking efforts, and maintaining a national advocacy presence to effect change that reflects families' needs based on grassroots research efforts. In addition, NNAFT staff are seeking support for conducting research (quantitative and qualitative) on the impact of its model, beyond the current research data collected. In addition, NNAFT staff plan to collect data on specific unmet needs of families and obtain their input on tribal, community, state, and national policies that affect the lives of their families and tribes. The importance of collaboration among Native organizations serving children with disabilities and their families cannot be overlooked. In order to effect positive change, unity in "spirit" and vision must be pursued.

Research and Implementation with Indigenous Families

One of the fundamental aspects that must be woven throughout any and all research endeavors is respect for the people involved and attention to the relevance for the people (participants). Historically, research conducted on Indigenous people and their needs has been a source of pain, because it was conducted in disrespectful ways without input from the very people studied (Charleston, 1994). Hence, in order to ensure utility of the insights and knowledge gained from research activities, such efforts must be guided by "The People."

Studies inspired by "grassroots" involvement in the research processes and shared interest in improving the quality of Indian Education will provide a strong foundation for qualitative and quantitative studies. Researchers with knowledge of working with Indigenous people are needed, as well as a commitment of resources to conduct research and revise policy priorities will provide a starting point for systemic change. Future research and outreach efforts should be guided by the following questions:

1. Why do Indigenous parents/families get involved or not in educational change and equity efforts?

2. What are the specific barriers to Indigenous parents'/families' involvement and how do we eliminate them?

3. What are local Parent Training and Information Centers doing to outreach to their local Native communities?

4. What barriers are local Parent Training and Information Centers experiencing and how can they be eliminated?

5. What are schools and other service agencies doing to enhance and secure Indigenous parent/family involvement?

6. What barriers do community members see with respect to insuring equity in education for all their members?

7. What do elders wish to share regarding education and disability issues (children/adults) within their communities?

The need for information from elders, community members, and families is critical. The future of Indigenous peoples is their children. Time is not a luxury that Indigenous peoples have in relationship to the educational crisis their children face. Research in education and active systemic change efforts lead by Indigenous peoples and tribal members are critically needed.

Equity in general education has been elusive for Indigenous peoples, even more so, education and support services for Indigenous peoples with disabilities (Banks, 1999; Charleston, 1994; Deyhle & Swisher, 1997; Harry, et al., 1999; National Council on Disability, 2003; United States Commission on Civil Rights, 2003). Although the critical issues are numerous, to accept the status quo flies in the face sovereignty and of all the previous civil rights work that has been done by grassroots efforts. Outreach efforts such as NNAFT and state PTICs working directly with families and communities will empower families, tribes, and communities. Once empowered, these groups can work together to affect change for current and future generations. By listening to Indigenous peoples' experiences and valuing their voice, NNAFT hopes to work collaboratively with all those involved in improving lives and providing future generations with equitable educational opportunities. Listen to the stories of those who lived through the Indian boarding school experience, the institutionalization period, and in today's schools (Child, 1998; Tsianina Lomawaima, 1995). Those stories will lead us to ask: "What will the stories of future generations of Indigenous peoples with and without disabilities tell us about ourselves and our society today?"

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