Portraits of Inclusion: Part Four

Part 4

THE AUTONOMY EXPERIENCED by educators and administrators of early childhood special education programs is restricted by fear of litigation from families and advocacy groups. Legislation spells out the rights of students with disabilities and indicates the due process procedures available to families who believe their children are not receiving appropriate services. Truly inclusive programs for young children demand that teachers, school administrators, families, and advocates alike shift their focus from contracts, rights, and due process to collaboration and communitywide solutions.

For some families and advocates, inclusive programs may appear to jeopardize hard-fought gains in rights and access to one-on-one education and therapy services for young children with disabilities.

When educators and administrators cannot resolve disputes with families about inclusion or special education services, these disputes may escalate quickly into costly legal conflicts. Some educators use mediation to resolve issues with families.

Teachers' unions often help shape special education policies at the classroom level. But providers of child care and early childhood teachers outside of public school settings are rarely union members, and they usually earn lower salaries than do public school teachers and the special educators who consult in their classrooms. Advocates are seeking a "worthy wage" for them.

The legal"standing" of inclusion -- especially in early childhood programs -- is unclear, and this makes for some confusion and concern among education policy makers and administrators. Inclusion is not explicitly mandated in federal special education law. Nor is there a standard definition used by all states for "least restrictive environment." But the principle of inclusion is implicit in the key piece of federal special education legislation,the 1990 Individuals with Disabilities Act (IDEA). And it has been affirmed in several court cases.

KIMBERLY MASON WALKED BRISKLY TO HER SON ADAM'S EARLY CHILDHOOD CLASSROOM and anticipated a friendly chat with Dennis, the classroom assistant. But Dennis did not greet her with his usual banter. Instead, he wordlessly pointed to a sofa in the reading area of the classroom. On the sofa, Adam sat quietly and held an ice pack against his ear. Blood-spotted paper towels lay scattered on the carpet around his feet. Dennis simply whispered, "Matthew."
Kimberly scooped Adam and his belongings into her arms and marched into the center director's office, but she found it empty. She and her husband later requested a meeting with the center director and the classroom teachers.
This was not the first time Matthew had acted aggressively toward Adam, and they assumed it wouldn't be the last. They had learned that Matthew had hurt other children in the class as well. They feared for their child's safety. They wanted Matthew removed from the classroom.
The situation could easily have led to contentious negotiations between parents and staff, and even to litigation. But the program's response reflected the way it has always honored the families it serves. The center operates long hours to accommodate working families. Each of its classrooms includes children with disabilities and the staff includes an adult with disabilities. A bulletin board highlights a different family of the center with stories and photographs. Hungry children may awaken from naps and groggily shuffle in their slippers to the kitchen for some fruit.
The program director arranged a meeting to include Adam's parents and his teachers. The substance of the meeting was not about Matthew, but about the Masons' concerns for Adam's safety. The school staff asked what they could do to help the Masons feel comfortable and confident. They assured the Masons that they would work with Matthew and his family to help the child learn to solve problems without violence. The message was clear: The behavior was not all right in their school, but the child was. The next day, Adam and Matthew played happily together.
In another preschool, parents organized to complain about a child with a disability who bites his classmates. After long and painful transactions between the school and families, the 4 year-old child with the disability was removed from his inclusive classroom in his neighborhood school. Many observers in inclusive classrooms have noted that conflicts between typically developing children are often accepted. But when a conflict arises between a child with disabilities and a typically developing child, it is considered aberrant.

SPECIAL EDUCATION PROGRAMS are exposed to several layers of federal and state regulation to ensure compliance with public policies and accountability for resources. When school districts do not adhere strictly to public mandates, they expose themselves to crippling fines and expensive changes in procedure. Regulation is a necessary burden that consumes staff time, generates paperwork, and requires strict adherence to mandated procedures and timeliness. But regulation that discourages creativity and flexibility in programs, and is unrelated to measures of program quality, serves as a barrier to preschool inclusion.

Local school districts invest time and staff resources to establishing a "paper trail" for auditors, who inspect budgets and spending and check to see that special education assessments are timely. The paperwork demonstrates strict adherence to rules, not true accountability.

Despite pressure to adhere to federal and state policies, early childhood special education assessment practices and classification often differ between states and even between districts.

Regulations governing transportation and apportionment may entail trade-offs for families seeking inclusive programs. These trade-offs include long bus rides instead of neighborhood schools, and half-day instead of full-day enrollment.

By what measures can states and school districts determine if they have met both the legal guidelines and the spirit of inclusive special education policies? The benefits of inclusion are fundamentally difficult to measure. In addition to educational outcomes, they include social and behavioral skills, personal adjustment, independence, satisfaction, and community membership.These are complex outcomes to discuss with parents, local communities, and especially policy makers.

CHARLIE IS THE GREGARIOUS, MIDDLE-AGED FATHER OF TINA, a typically developing teenager, and Sydney, a young child with Down syndrome. Over the past year, he has become increasingly frustrated with his children's schools.
Charlie has worked hard the past five years garnering educational and therapeutic support for Sydney. He describes his 5 year-old daughter as "real adaptable" and says she "seems to fit no matter where she is." Sydney is an animated child who usually makes friends wherever she goes.
When Charlie and his family moved recently from one large West Coast city to another, they began the process of finding a preschool that would match Sydney's special education needs. They were no longer novices at securing services, but moving to a new city when one has a child with disabilities can be challenging no matter how experienced the family. Charlie describes the process of gathering support for Sydney in this way: "I was given a hundred different 'phone numbers, and no one could help me.... I was sent to so many places, and there was no central place .... " So Charlie learned that "you have to be your own advocate" in order for one's child to receive adequate services.
Charlie's search ended when he found a child care program to supplement Sydney's public school special education program. Sydney developed strong bonds with her teacher as well as with the other children in the program. Her parents recognized the quality care Sydney was receiving and were favorably impressed with services they believed were important to Sydney's development. One of the features they valued was the opportunity for Sydney to learn from typically developing children in a natural environment. This goal was stated by and strongly supported in Sydney's child care. Sydney and her child care program were a good match.
But because of the district's strict adherence to regulations, Sydney did not stay at the child care program that she and her parents liked so much. The public school that provided Sydney's transportation between school and child care informed Charlie that the child care was located outside its legal boundaries, and it would no longer transport Sydney. As a result, Charlie was forced to find another child care program located within the boundary of the public school transportation system. The only child care with space available served more than 40 children, and in Charlie's opinion, it didn't serve them well. "Sydney regressed drastically," Charlie reports. "It was a shock for us." Sydney has struggled in the program, despite her ability to fit in. Her adaptability -- like a school system's -- has limits.

INCLUSION POLICIES require long-term funding commitments to work. Although "new" money for special education enjoyed widespread political support during the 1970s and '80s, policy makers in the '90s have been seeking ways to control spending. About 56% of special education "excess costs"-costs over and above regular education-are covered by state funds; this share varies greatly from state to state. Less than 8% of excess costs are covered by the federal government. When mandates remain in place without aufficient public resources to support them, district management may become idiosyncratic and reactive.

In some districts, of ficials may configure inclusive classrooms to cut costs. In others, they may retain segregated programs to draw upon categorical program dollars. With either approach, long-term, preventive perspectives may be lost.

Spending on preschool special education services varies across states, from less than $700 a year per child, the amount allocated through federal Section 619 Preschool Grants, to more than $6,000 per child.

Faced with fiscal pressures, districts may become less aggressive in identifying children for preschool special education. Children with subtle problems may be served in other systems than special education, such as Head Start or child welfare. When pressures become particularly acute, they may not be identified or served at all.

Over the past decade, many states have pursued special education financing reform as they attempt to reconcile fiscal pressures with meeting the needs of students with disabilities. Although federal and most state laws define special education as an entitlement, several states have recently moved from a financing system based on the number of individuals who qualify for services to one based on a percentage of total school enrollment. For districts with high shares of special education students, this funding method may halt recent progress in identifying eligible young children for services.

CHRISTOPHER MATTHEWS IS A PUZZLING CHILD to his teachers and to his parents. He has never received a clear diagnosis for his developmental problems, but at 4 years old, he cannot use language. The frustration he feels in making others understand him is apparent in his tears, his unintelligible protests, and his inability to enter social situations with other children. Christopher's mother believed at one time that he would "outgrow" his problems. But as time goes on, it becomes evident to her, and to Christopher's teachers, that his problems may not go away. Christopher will probably never be like most other children in his ability to talk, to play, and to learn.
Christopher's teacher, Karen, has stood by Christopher and his parents as she has with innumerable families during two decades of teaching. Karen established one of the first inclusive early childhood programs in her state. She used volunteer labor and community donations of materials and equipment. Karen has held onto her clear philosophy that children with disabilities should be educated with typically developing children, and she has maintained a personal commitment to obtain the knowledge and skills she and her colleagues need to operate an inclusive preschool program.
Karen and her assistant teacher serve 16 children with disabilities during a five-hour session, four days a week. Their classroom is shared with two other early childhood educators and 16 more children who are typically developing. To assure the children get the individual attention they need, Karen has a small army of dedicated high school students working in the classroom. But those students need training, mentors, and support, so Karen's job is doubly hard, and she must answer to several different authorities.
Karen has been a creative, respected, and tenacious leader during administrative changes and building construction, according to her colleagues. But Karen believes that school funding reform in her state, which changed special education finance from a per-child allotment to a district block grant, has put program quality and availability at risk. "We are at maximum capacity," Karen says.
It is Karen and her colleagues in schools who must cope with the reality of the budget cuts and funding shifts demanded by policy makers and administrators. Karen worries that she will be forced to consider giving up the inclusive program in either the morning or afternoon. But though programs disappear, Christopher Matthews' developmental problems, and his need for education in the company of his peers, will not. Nor will his parents' need for information and support. Nor will Karen's desire to respond to those needs.

DO INCLUSIVE EARLY CHILDHOOD special education programs save or cost money? Academic research as yet offers no real answers. Administrators' perspectives vary according to experiences in their own programs. School district and state education agency data collection efforts lack the long-term, detailed tracking necessary to compare costs of inclusive programs with those generated by other approaches. The variability with which funds are allocated, administered, and spent across categorical programs further complicates the picture. Advocates often refuse to discuss the cost issue, focusing instead on whether inclusion is the best policy to prepare all students for their place in a democratic society.

Districts may embark on inclusive policies expecting to reduce the costs of operating parallel systems. But inclusive approaches may bring added costs in transportation and staff support.

Additional costs of inclusion may occur in hiring more teachers, paying tuition of children with disabilities in private child care programs, providing continuing staff development opportunities, and in conducting more individual planning and problem solving.

A precise calculation of the costs of inclusion would require documentation across budget categories and would include costs of transportation and training.

Federal and state agencies during the 1990s have learned to save costs by shifting clients, when possible, to other programs for which they may be eligible. It has recently become common practice, for example, for children with disabilities to be enrolled in federal disability programs to reduce fiscal pressures on states. Inclusion contradicts this trend by bringing individuals, programs, and budgets together, by emphasizing collaboration, and by blurring boundaries of agencies and jurisdictions. This is one reason why the costs of inclusion are so difficult to quantify.

EDDIE IS A 5 YEAR-OLD WITH A RADIANT SMILE AND FRIENDLY COUNTENANCE who attends an urban Head Start program. She qualifies because she comes from a low income family, but her teacher worries about her development as well.
Eddie is in some ways one of the more mature children in class, acting as helper with younger or disabled classmates. But on some days, she arrives at school too tired to participate, choosing to go silently to the library and suck her thumb. Some days, rather than helping other children board the bus, she will cry and cling to her teacher's hand until she is carried to the bus. Her teacher has taken the first steps to referring Eddie to special education.
The rise in use of early childhood special education services is due only in part to liberal eligibility criteria. Another significant driver is the type of home environments children are experiencing today.
A school psychologist explains: "I think it's kind of a sign of the times. You know, we have more families with difficulties. And we've had an increasing number of children that have a history of drug exposure . . . and that seems to have an impact on social and emotional development. Families are splitting up . . . and there are social difficulties in families, difficulties with coping and parenting skills, so children are reported as having behavioral problems."
Many developmental disabilities, such as those that manifest as speech, language, or social skill differences, are subject to interpretation by individual families and professionals and are influenced by cultural standards and beliefs. Unlike academic skills, they are the most immune to change, even when children are enrolled in early child care and education programs. These types of disabilities have been referred to as "the new morbidity" because they are closely related to the social and economic changes in our nation that place children "at risk" for school failure and developmental problems. These are the types of disabilities that occur most frequently among children using special education services.
Children, families, and teachers all feel this bind. In the Spring, a rapidly growing suburban school district may open a temporary classroom to accommodate the children identified through "child find" developmental screening clinics. But a classroom that opens in mid-April may disappear less than two months later.
Some states are considering a "means test" for access to early childhood special education programs. Many children currently receiving services may not meet more stringent income or developmental requirements. Instead, they will wait to fail in kindergarten or first grade before they are identified as needing services.

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All the names of people, programs, and localities have been changed to protect the privacy of those involved. The photographs were taken at a variety of project sites and do not represent the children in the report.

This information is posted here with permission of
ECRII: The Early Childhood Institute for Research on Inclusion
and the project's previous principal investigator, Samuel Odom
slodom@unc.edu
by New Horizons for Learning
http://www.newhorizons.org
E-mail: info@newhorizons.org
This area of the website is made possible by a grant from the
Office of State Superintendent of Public Instruction
Special Education
P O Box 47200
Olympia, WA 98504-7200
(360) 725-6088
Fax (360)586-1631
E-mail: dgill@ospi.wednet.edu