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Promising Practices Connecting Schools to Families of Children with Special Needs


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Diana Hiatt-Michael, Pepperdine University
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RELATED TITLES
Promising Practices for Family Involvement in Schooling Across the Continents. Edited by Diana Hiatt-Michael, Pepperdine University

Promising Practices for Family Involvement in Schools. Edited by Diana Hiatt-Michael, Pepperdine University

Promising Practices to Connect Schools with the Community. Edited by Diana Hiatt-Michael, Pepperdine University

Pages 1-14. Copyright 2004 by Information Age Publishing
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CHAPTER ONE
CONNECTING SCHOOLS TO FAMILIES OF
CHILDRENWITH SPECIAL NEEDS

Diana B. Hiatt-Michael

A CHANGING LANDSCAPE

Special education has been a rapidly changing field during the past 50 years. Families of children with special needs played a critical advocacy role in this change. The story has been one of passionate commitment from parents and special education leaders to promote change from segregated living to segregated education and ultimately to inclusion in mainstream education. Initially, these changes were fueled by increasing social consciousness that the U.S. Constitution calls for the equality of all citizens. This change in social consciousness led to legal action, first in courts and then in the federal legislature. Prior to the passage of the Education for All Handicapped Children Act in 1975, one million children with disabilities were not in public schools, and 90 percent of children with diagnosed developmental disabilities were maintained in state-operated institutions (Tollestrup, 2003, p. 16). In response to the strong and continued advocacy of equal opportunity for individuals with disabilities, President George W. Bush (2001) remarked at the New Freedom Initiative that "Old misconceptions about physical and mental disability are being discredited. . . . We must speed up the day when the last barrier has been removed to full and independent lives for every American with or without a disability" (para. 7).

The slogan "Who says I can't?" rallies families and children with special needs to strive for equality and independent action (Hales, 2003). Parents of children with special needs continue to be at the forefront of legal battles to provide appropriate educational services, support, and opportunities. In addition to legal action, parents and schools have joined together to utilize technological advances in equipment, computer devices, instructional strategies, and medicine. The chapters of this monograph highlight the role of parents of children with special needs and the role of the school. Parents act as the primary source of knowledge and home support for their children, and the school provides the educational expertise, support, and resources for these children and their families.

SNAPSHOT OF A CLASSROOM PRIOR TO FEDERAL LEGISLATION

When I began teaching in 1960, the concept of special education classes located within public school sites was voluntarily being implemented by forward-looking school districts. For that era, public-supported special education was an innovation. Prior to the late 1950s, moderately and severely disabled children were not in public schools but kept at home, in private settings, or in state institutions. At my newly opened elementary school in West Hartford, Connecticut, the school district established two classes for developmentally delayed children of primary school age, one termed mentally retarded and the other emotionally disturbed, and a third class for children with physically handicapping conditions. Teachers with or without special certification instructed these classes. These teachers taught the children on a whole group basis because an Individualized Educational Program (IEP) as mandated after the 1975 law was not required. At this time, children who would now be diagnosed with learning disabilities-and who presently number half of the children with special needs-were not diagnosed. These children did not receive special services and were included in all general education classrooms.

The mainstreaming of children in these segregated special education classrooms only occurred as an informal arrangement between the special education teacher and a general education classroom teacher. Another teacher and I, the only 2 among the 25 faculty members at the school, opened our doors for these disabled students to participate in class activities. Special education teachers cautiously brought selected children to visit for short periods. Initial activities included music, art, literature, and science. These children could watch or participate as they chose. However, like most teacher-based innovations, this rudimentary degree of mainstreaming ended when we left the school. Thus, it was imperative that to further connect families of children with special needs to the school, parents continue to advocate for legislation to mainstream their children.

AN ERA OF PARENT ADVOCATED FEDERAL LEGAL CHANGES

Various court decisions during the 1950s and 1960s, described in Chapter 2 led to ground-breaking federal legislation, first the Handicapped Children's Early Education Assistance Act, P.L. 90-538 in 1968, and later the Education for All Handicapped Children Act, P.L. 94-142 in 1975. These acts supported the integration of children with special needs living outside the mainstream of the school community into the public schools, namely children living in their family's home or in a full-care institution. P.L. 94-142 mandated financial support within the public school system for all types of children with special needs. This act was the basis for a subsequent fervor of educational activities, including teacher preparation programs for special education, development of classrooms for special education, and provisions for services within each school district. The National Center of Educational Statistics (2001) reports sizeable growth for education funding between 1965 and 1975. Individualized instruction, an innovative concept in the 1950s and 1960s, but one that almost disappeared in general education classrooms during the 1980s, served as the basis for the IEP that continues in special education today (Hiatt, 1971, pp.28-29).

In spite of this earlier progress, NCES (2001) reveals a "substantial" decrease in educational funding during the 1980s. This decade marked a return to the core curriculum with a new focus on standards and testing. Special education programs received less public education attention, and special education funds often served to meet general school needs. Parents became concerned that these hard-won monies for children with special needs were stretched to serve normal children. They also noted any school policies that altered their conception of P.L. 94-142. Parent advocate groups lobbied for additional legislation to protect their children's rights. The Association for Retarded Citizens and the Association for Children and Adults with Disabilities coordinated efforts with the various associations serving differing types of disabilities in this drive for enforcement of P. L. 94-142. They received encouragement from the federal government through the passage of the Handicapped Children's Protective Act of 1986, P.L. 99-372. This act permitted parents of children with special needs to collect attorneys' fees in cases brought under the Education for All Handicapped Children Act. P.L. 99-372 served as the foundation for parents' financial capability to advocate for appropriate changes in education policy and procedures.

Parents' insistent and persistent pressures, coupled with support of special education leaders, led to passage of various acts and the current Individuals with Disabilities Education Amendments Act (IDEA) of 1997. IDEA describes the Least Restrictive Environment:
    IN GENERAL-To the extent appropriate, children with disabilities, including children in public and private institutions or other care facilities, are educated with children who are not disabled, and special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only when the nature or severity of the disability of the child is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily. Section 612.5, Office of Special Education and Rehabilitative Services, 2003, p.30)
In conjunction with each change, the use of language to describe these children was revised.

THE CURRENT LEGISLATIVE BASIS OF FAMILY INVOLVEMENT IN SCHOOLS

IDEA 1997 extends parental involvement and provides the vision of seamless interagency services for families of children with special needs. Section 614 of IDEA states that parents are to be part and parcel of the design, evaluation, and where appropriate implementation of school-based improvement plans. In addition, the act provides for parent training, information centers and activities, and timely technical assistance (Section 681). The act provides for funds that "shall be used to pay the excess costs of providing special education and related services to children with disabilities" (Section 613.2; Office of Special Education and Rehabilitative Services, 2003, p. 42). This act expressly prohibits the commingling of federal funds paid to a state for children with special needs and related services with other state funds.

Children with special needs aged 3 through 21 number over 6,500,000 in the U.S. and account for about 10 percent of K-12 public school children (National Center for Education Statistics, 2001; Paige, 2003). Although states are the primary source of general education funds, the federal government serves a major role in funding programs for persons with disabilities. The Department of Education is the source for about 40 percent of federal funding in special education, but many other departments such as the Department of Health and Human Services, Department of Labor, Department of the Interior, National Science Foundation, and other federal agencies fund educational services for families of children with special needs (National Center for Educational Statistics, 2001).

IDEA 1997 rests on 20 years of research and encourages utilization of this research. IDEA recommends for effective education of children with disabilities the following:
  • having high expectations for such children and ensuring their access in the general curriculum to the maximum extent possible;
  • strengthening the role of parents and ensuring that families of such children have meaningful opportunities to participate in the education of their children at school and at home;
  • coordinating this act with other local, educational service agency, state, and federal school improvement efforts in order to ensure that such children benefit from such efforts and that special education can become a service for such children rather than a place where they are sent;
  • providing appropriate special education and related services and aids and supports in the regular classroom to such children, whenever appropriate;
  • supporting high-quality, intensive professional development for all personnel who work with such children in order to ensure that they have the skills and knowledge necessary to enable them-
    1. to meet developmental goals and, to the maximum extent possible, those challenging expectations that have been established for all children; and
    2. to be prepared to lead productive, independent, adult lives, to the maximum extent possible (Office of Special Education and Rehabilitative Services, 2003, pp.5-6).
IDEA strengthens the basic rights of children with special needs both through:
  • the right to a free appropriate public education . . . for all children with disabilities, including children suspended or expelled from school; and
  • the procedural safeguards for these children and their parents (Office of Special Education and Rehabilitative Services, 2003, p. 8).
IDEA emphasizes that children with disabilities "have meaningful access to the general education through improvement to the IEP, and are included in general education reform efforts related to accountability and high expectations, and that focus on improved teaching and learning" (Office of Special Education Programs, 1999).

When P.L. 94-142 opened the school doors to all children with disabilities in 1975, parents and teachers of general education students expressed reservations about the effect some of these children, especially those with emotional disorders, might have upon academic achievement of other children. Public school administrators and teachers are responsible for the care of all children, not just focusing on the unique needs of children with disabilities. In response to such concerns, IDEA has developed a large section in the procedures on discipline for children with disabilities (Office of Special Education and Rehabilitative Services, 2003). The regulations do not permit suspension simply because the teachers cannot work with the child, but there are safeguards for appropriate suspension, expulsion, and behavior assessment to protect the rights of all children and school personnel. Children with disabilities must adhere to regulations regarding weapons at school and use of illegal drugs. School personnel must also balance the educational needs of the total class with the special needs of a given child.

THE ISSUES OF INCLUSION

The appropriate degree of mainstreaming and inclusion is a source of continuing debate. The authors in this monograph support the concept of the inclusion of children with special needs into general education classes but only as appropriate for each individual and their families. As noted by Simmons in Chapter 2 and every other author in this monograph, inclusion does not mean an elimination of full-day or resource-type special education classes. The type and amount of time spent in various educational settings will be determined by the IEP developed among families, school staff, and various support personnel (Section 614). Parents assume the prominent role in the development of the IEP. An IEP reflects available services and personnel as well as parental preferences for any given child with special needs. Charter schools and private schools that educate children with special needs may receive funds if they adhere to the policies in IDEA.

Inclusion in general education benefits both special education and general education students (J. Coleman-Merritt, J. Fabrocini, B. Karge, H. Lee, & L. Simmons, personal communications, July 2003). The general education students become tolerant and accepting of children with special needs; they become aware of the limitations and gifts of each person. The children with special needs acquire knowledge and skills to live in the community, understand various types of children, and become more independent. Byrnes (2003), parent of a child with multiple disabilities, asserts that"his placement in a general education classroom with additional supports and services has given him a gateway into the broader community (p. 7)." General education teachers benefit from the added assistance of other adults who are assigned as aides to the classroom. Student/adult ratio is lowered in a cost-effective manner (Hiatt & Keesling, 1980). A special bonus is that there are increased support specialists such as family counselors, speech pathologists, occupational therapists, physical therapists, and psychologists available to general education school sites. An itinerant inclusion facilitator for Los Angeles Unified School District remarked that some IEP teams may include up to 26 service providers (M. Docter, personal communication, July 30, 2003).

Interviews by the author with special education facilitators emphasized the importance that all parties agree on and accept the given provisions of any IEP. The federally-funded national study reported in Chapter 3 reveals a high degree of parent involvement in IEP team meetings. The degree and kind of inclusion is unique to each situation. For example, if the parents feel that more time in a special day-class will benefit their child, but the teachers and support specialists suggest more time within the general education classroom, the child will hear disparate messages. The degree of satisfaction with IEP implementation is based upon a consensus that is within the tolerance level of all parties. Comments and examples by various authors in this monograph expand upon the importance of this consensus.

TECHNOLOGY AND MEDICAL ADVANCES SUPPORT FAMILY-SCHOOL CONNECTIONS

Technology has provided the tools to assist children with special needs to be more independent at school and home and to more easily enter the mainstream action of the school and community. Such advances encourage independence. Wheelchairs are adapted to support the mobility of each physically handicapped child. Computerized technology assist disabled children in mobility, speech, hearing, and adaptive learning. Speech synthesizers coupled with text-to-speech systems, touch screen devices, and voice output communication aids are a few of the many technological aides that support independence of children with handicapping conditions in the general education classroom. For children with visual impairments, voice recognition systems and refreshable Braille displays offer the capability to read independently. Educators can create CDs and videos to encourage vocabulary building and language use for children with delayed language development, pervasive developmental disorders, and autism. Switches are an increasingly popular device to adapt educational materials and popular toys for children with mobility limitations (Adaptive Technology Resource Centre, n.d.).

In addition to electronic technology, instructional techniques and strategies have been developed to equip families and their children with special needs with better learning tools. Classroom techniques such as those described in chapters 4, 5, 6, and 8 are powerful methods for families and teachers to join hands and educate children with special needs. For example, in some schools parents, teachers, and other members of the IEP team are encouraged to utilize a Student Environment Test Tool (SETT) to analyze the school environment (Zabala, 1996). Based upon this assessment, parents work with teachers to provide appropriate accommodations and adaptations for the child. The open classroom approach reintroduced peer teaching and cross-age teaching, opportunities to bring together general education students with those with special needs. Johnson, Johnson, and Holubec's (1994) cooperative learning approaches provide an instructional strategy so that children with special needs collaborative with general education students at the same work table in the classroom.

New knowledge has altered public conceptions of learning methods of all children as well as those classified with disabilities. Education concepts such as Armstrong's (1994) application of Gardner's multiple intelligences for the general classroom and Tomlinson's (1999) differentiated instruction, have influenced parents' and teachers' conception of the uniqueness of each child. In addition, Levine (2002), a professor of pediatrics, promotes the uniqueness of every person's mind and the way it operates. He connects emerging knowledge of the brain's physiology with children's learning capabilities. He encourages parents and teachers to analyze content to be acquired and determine the most effective way to instruct a given child. He discourages teaching as "one size fits all."

Throughout the country various centers have developed structured approaches to education and provided training for parents and classroom teachers. IDEA supports training of school personnel and parents. In California, the Department of Education's Diagnostic Center sponsored statewide training to address school-wide behavior supports, discipline, behavior support plans, and classroom strategies (California Department of Education, n.d.). Across the nation, every state has one to several parent intervention centers. These centers provide information, serve as networks of interagency services, and offer ways that families can connect to the school and effectively parent their child with special needs. For example, a California center provides "Homework Support Through Technology." This program is free and utilizes help with and without computers. In addition, the program offers technology solutions, such as screen readers, talking word processors, and adapted keyboards. Medical centers, such as the Neuropsychiatric Institute at UCLA, offer instructional programs to connect parents and teachers with advances in educational techniques for children with mental and emotional disabilities. Brunstrom, a pediatrician specializing in neurology who has cerebral palsy, adapted martial arts for children with cerebral palsy (Hales, 2003). At the school site, the development of resource rooms for support personnel or pull-out programs offer a place where parents, teachers, students, and specialized staff may join together to work with children with similar problems. For example, resource rooms may be utilized for children with attention deficit disorder and those with emotional disorders who focus more effectively with fewer distractions. These special spaces or classrooms with fewer children can provide the most appropriate environment for learning.

Medical and genetic research has dramatically opened a range of options for children with special needs. New drugs, methods of injection and doses, and surgeries to redesign the physical abnormalities provide ways to help children with disabilities. These children have options to control their behavior and assume a greater independence from the underlying disability. Children with cerebral palsy may select injections to temporarily relax muscles or another medicine that can be administered by a pump into the spinal fluid to relax stiff muscles. The Mayo Clinic website on Attention Deficit Hyperactive Disorder (ADHD) describes a child who takes "his thinking pill"(Mayo Foundation for Medical Education and Research, 2003). Chapter 5 focuses on the debate regarding the use of pharmaceutical interventions for children with learning disabilities. Chapters 6, 7, and 9 infer that pharmaceutical remedies are an important intervention to emotionally disturbed children and youth.

New diagnoses and treatments seem to pop up on a regular basis, providing families and teachers with hope for a better answer. eSchool News (2003) describes the development of the human physical basis for a tool to diagnose ADHD. The physical differences between ADHD diagnosed and non-ADHD persons were observed through accidental findings by an Eastman Kodak Research team. Rather than rely on extensive observations over time by teachers and parents, this tool would assess the presence or absence of ADHD with a 10-20 minute test.

CHANGING PERCEPTIONS OF CHILDREN WITH SPECIAL NEEDS

These medical discoveries have enhanced the lives of many children. In addition, medical discoveries have kept alive more premature children and children inflicted with childhood ailments. These medical interventions may be adding to the increasing number of children identified with special needs (Premature Baby-Premature Child, 2002).

Another possible explanation for the rise of children with special needs may be better diagnoses. However, the significant increase in autism during the past 12 years does not seem to be attributed to either reason (M.I.N.D. Institute, 2002). The number of children diagnosed with autism is the second largest group of children with special needs, children with learning disabilities being the largest group.

As researchers and medical practitioners acquire more knowledge of a disability, the practice is to develop new categories and subcategories of disabilities. Currently, IDEA cites 13 categories. In 1960, learning disabled children were not categorized as having a disability and not counted among those with disabilities. This category now accounts for half of the children with special needs (National Center for Education Statistics, 2001). According to the Types of Learning Disabilities chart in chapter 5, there are now three major categories and eight subcategories of learning disabilities. In the category of major emotional illnesses, in 1960 bipolar disorder was described as one category of mental illness. Currently, Diagnostic and Statistical Manual of Mental Disorders (American Psychiatric Association, 1994) mentions several types of bipolar disorders. As a result of this differentiation, medical doctors are faced with increasing difficulties assigning a specific diagnosis or treatment. Medical diagnoses are made with tentativeness, and initial care is viewed as a trial treatment, not cure. Medical doctors often describe children as having multiple handicaps.

Therefore, educators and parents, noting so many different labels and multiple sub-categories, are beginning to recognize the uniqueness of each child. Based upon this recognition of differences rather than labels or categories, teachers and parents should consider an IEP for every child with or without a disability. As children with special needs are mainstreamed into the general classrooms, teachers and parents will focus less upon the "average" or "normal" type of child. The vision is that all children have special needs and instruction should be tailored to each child.

THE VISION OF FAMILY-SCHOOL CONNECTIONS IN THE 21ST CENTURY

The vision of family-school connections in the 21st Century portrays a collaborative working relationship between families and the school. This relationship rests upon mutual respect between members of both groups-the family members and the school's faculty.

This vision is reality at CHIME Charter School located in the San Fernando Valley north of Los Angeles, California. This charter school was founded in 2001 by a group of parents. The parents had children that attended a university preschool in which children with special needs were included within general education classrooms. All of these parents wanted their children to continue in this manner during elementary school.

The parents linked with a faculty member at the nearby state university, who ultimately served as the new school's champion. The parents and the university faculty designed the curriculum and basic policies. They then secured their charter from the local school district and state. The parents collaborated with a select group of teachers to design a school that fully included children with special needs into general education classrooms. The school has opened its doors to all children, including children with special needs from mild speech and language disorders to severe multiple disabilities. The required ratio is 20 percent children diagnosed with special needs and 80 percent general education students. The waiting list for this school exceeds the number of children in the school so the school is required by California law to select new children on the basis of a lottery for each group-the general education and special education. K-3 class size is limited to 20 children; grade 4 through 5 class size is limited to 25. Each class has a general education teacher, a special education teacher and two paraprofessionals. In addition, the classroom activities are supported by trained parent volunteers, community volunteers, student teachers, and specialists from service agencies such as a speech pathologist, sign language interpreter, and Spanish language interpreter.

Julie Fabrocini, the school's vibrant director, asserts, "The home-school connection is crucial to each child in our school. Parents are the experts on their own child and are the lasting relationship in the child's life. We teachers are transient in these children's lives" (J. Fabrocini, personal communication, August 1, 2003).

An interview with this principal provides a rich tapestry of parent involvement activities. The best practices that are included in the first monograph in this series, namely Promising Practices for Family Involvement in Schools (Hiatt-Michael, 2001), were utilized. In preparation to work in this school, all teachers are provided training and exhibit a willingness to be collaborative with parents and the community. The school has institutionalized several family involvement processes and problem-solving techniques to maintain a high level of collaboration.

First, there are daily morning and after-school meetings. All staff regularly meet for 30 minutes every morning to focus on academic planning. At this time the general and special education teachers work together on the curriculum. Second, after school, everyone who has worked in the classroom during the day-teachers, parent volunteers, paraprofessionals, and service providers-meet to debrief. There is a formal protocol to assure parity of roles and positive feelings. Everyone speaks around the table and shares one success or challenge during the day. They must describe when the success belonged to the child and when the success belonged to the adult. These debriefing sessions each day are the basis for revision and curricular planning for the following morning's faculty meeting. Third, the school supports frequent IEP team meetings. The average number of IEP team meetings is one per month for each child. At these IEP team meetings, a discussion protocol is followed. First, the parent describes the successes of the child and program. Then the teacher and staff share their positive comments. Next the parents offer their present concerns. Finally, the teachers and staff voice their concerns. This sharing of information provides a rich foundation to discuss and collaborate on future revision of the IEP.

In addition, there are three regular and structured ways to communicate on a daily basis between home and school, assuring the realization of the IEP. Each student carries a student planning book home every night. That book contains teacher's comments to the parents and parent's comments to the teacher. During each day, the aide completes a standardized 4×6-inch activity-organized form on which she writes what the child did during the day. One copy of this form goes home with the student planning book and the other is placed in the child's IEP classroom log. Parents report that they use these forms to stay aware of child's day at school and to dialogue with the child about those experiences. For the teachers, these forms in the IEP log supply necessary information to assess the child's progress toward the goals written at the last IEP meeting. Also, children maintain a portfolio of their classroom projects and participate in student-led conferences with their parents. The special education teacher assists the children with special needs to make work choices and adapt the presentation format for the student-led conference.

The school door and the classroom doors are open to parent participation. Many parents serve as volunteers in the classroom. However, these parents and other classroom volunteers must participate in a two-hour inservice before working in any classroom. There are additional training sessions available to these parent volunteers on topics such as student learning styles, adaptive techniques, or behavior management. The teachers and principal encourage parents to share their talents, such as music or art, and work experiences within the classroom.

CHIME Charter has a parent resource room and a volunteer parent liaison. School newsletters and posters around the office depict regular and varied parent offerings. There are monthly parent education meetings featuring noted speakers. Each parent has prepared a video on their child, sharing valued information so that any member of the faculty or support staff may have access to that information. A parent volunteer staffs the library and coordinates its growing collection of these videos, books, and other resources.

Parents on the Board of Directors are on a par with university faculty and other community members. In addition, parents serve on the Administration, Curriculum, and Parent Partnership committees. The latter is the fund-raising group for the school.

The director sums up this model connection of school-to-home in this way, "CHIME Charter looks to the parents for understanding of our children and serving as school leaders. These parents have hopes and dreams for their children. We believe that the school is responsible in realizing these hopes and dreams" (J. Fabrocini, personal communication, August 1, 2003).

CONCLUDING REMARKS

IDEA is under re-authorization by the federal government at the time of publication of this monograph. There will be minor changes but there will be even stronger commitment to parent involvement, interagency support, and inclusion. The three volumes in the Family School Partnership series, namely Promising Practices for Family Involvement in Schools (Hiatt-Michael, 2001), Promising Practices To Connect Schools With The Community (Hiatt-Michael, 2003), and this monograph are available to serve as resources for parents and educators to meet these three critical components of IDEA.


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