Educating children with disabilities:
How pediatricians can help
By Peter J. Smith, MD, MA, Kusum S. Mathews, Thomas Hehir, EdD, and Judith
S. Palfrey, MD
Educational opportunities for children with disabilities were
greatly expanded by the Individuals with Disabilities Education Act. Your advocacy
can determine whether your patients who need special education services benefit
from those opportunities.
"Disability is a natural part of the human experience and in no way
PL 105-17 Individuals with Disabilities Education Act
Pediatricians often interact with local school systems and can play a number of critical roles for families in their practice whose children require special education services. A knowledgeable pediatrician can literally make the difference between a child's getting appropriate services and missing out on the help he (or she) needs. This year marks the 25th anniversary of the full implementation of PL 94-142, The education for All Handicapped Children's Act. The 1990 reauthorization of the Education of the Handicapped Act (EHA) renamed it the Individuals with Disabilities Education Act (IDEA). IDEA has transformed special education and developmental pediatrics by providing a legal foundation on which services for children with disabilities can be built. In this article, we discuss the implications of the special education process for child health providers as well as review the history of the special education laws, outline provisions of IDEA most relevant to pediatric practice, and detail accomplishments and challenges of special education legislation.
An IDEA ahead
of its time
During the 20th century, the United States saw slow, steady progress in legislation
acknowledging the citizenship and fundamental rights of persons with disabilities.
The time line lists events that have profoundly affected current
services for children with disabilities. In 1935, passage of Title V of the
Social Security Act created Crippled Children's Programs in each state to provide
services for children with disabling conditions such as infantile paralysis.
Ten years later, a Section for Exceptional Children was established within the
US Office of Education, again acknowledging the importance of a planned approach
to the needs of a special population of children.
In the 1960s, the first President's Panel on Mental Retardation proposed a new concept of mental retardation and developmental disabilities that focused on celebrating and responding to what children with disabilities can do rather than what they cannot do. The panel also addressed demands by parents and professional advocates for a more systematic response to the educational and functional needs of these children.1,2
In 1972, two critically important lawsuits paved the way for educational reform. Pennsylvania Association for Retarded Citizens (PARC) v Pennsylvania established the precedent that children with disabilities should not be excluded from public education. In Mills v the Board of Education of the District of Columbia, the court ruled that school systems that removed children with special needs from regular classrooms might be using "special education" as a process for de facto segregation. The court also ordered that schools provide adequate education to all children whether or not they had sufficient funds to do so. In response to these two cases and community pressure, states began to create new special education statutes and revise existing ones to encourage schools to include children and adolescents with disabilities in all school opportunities offered to children without disabilities rather than excluding them by applying special education designations.
The watershed event occurred in 1975, when the US Congress passed PL 94-142 by an overwhelming majority. Subsequent amendments and refinements have maintained the law's core tenets and extended its reach to infants, toddlers, and preschoolers with disabilities. States must provide a free appropriate public education (FAPE) to all children no matter what disabling condition the child has. Education should take place in the "least restrictive environment," which is achieved by:
- identifying all children with special needs
- evaluating each child and preparing a detailed plan
- implementing educational and related services
- maintaining the child's rights through due process.
In its current form, the Individuals with Disabilities Education Act contains the following provisions:
Identification and referral. Children can be identified and referred for early intervention services as early as birth. Once a child is diagnosed as having a functionally relevant health concern (such as a congenital anomaly, cerebral palsy, or hearing loss) or developmental delay, he (or she) is eligible for early intervention under IDEA. Parents, physicians, or child-care providers can refer children for a team evaluation and subsequent provision of services.3
It is important to note that "disability" is defined state by state. Moreover, the referral is directed to a specific agency in each statethe lead agency may be the Department of Public Health, the Department of Education, or some other agency. States can change this structure at any time.4 No federal mandate exists as to which should be the lead agency (for programs for children from birth to 3 years of age), and those who refer children and their families need to be aware of the
administrative details in their state.5
Identification of children who have passed their third birthday is handled by each state's Department of Education.6 All school systems are required to have formal preschool identification procedures to detect developmental concerns as they emerge. These include CHILD FIND programs, toll-free telephone numbers, and kindergarten screening programs.
The identification process does not end at the kindergarten door. Some children acquire health problems (trauma, infection) that place them in need of special education. Some educationally related problems do not manifest until a child is challenged by schoolwork. Subtle developmental difficulties may show up as difficult behaviors (hyperactivity, acting out, withdrawal, poor appetite, enuresis, encopresis, drug and alcohol use, truancy, delinquency). Children and adolescents can be identified as being in need of special education at any time during their education. In fact, older students occasionally refer themselves for services.
Evaluation. Every child involved in special education must have an individualized educational program (IEP) that includes information on the child's current performance, an outline of annual goals, and a description of planned services with objective criteria for measuring the child's progress at least once a year. A parent must be invited to contribute to the IEP, and the information in the IEP must be based on the assessment of a multidisciplinary team that has to include a specialist in education and can include a psychologist, a speech and language pathologist, a physical therapist, an occupational therapist, and a physician.
Evaluation by child health professionals as part of the IEP is particularly relevant for children with a complex medical condition and children who are receiving nursing care at school, are on medication, or have substantial mental health concerns. The actual composition of the team should be tailored to the needs of each student.
School systems must use a variety of assessments to evaluate children, including appropriate standardized materials that are technically sound and address educational, behavioral, physical, and developmental concerns. The assessments must be free of racial and cultural bias and administered in the child's own language or mode of communication (signing, for example) by personnel who are appropriately trained and experienced in its use.
Each required evaluation for children from birth to 3 years results in an individualized family service plan (IFSP). Because family issues are often paramount during a child's early years, the IFSP explicitly calls for an assessment of the family's needs. It outlines the content of the service package, the quantity of services to be delivered, the venue (the child's home, a day-care setting, or a specialized facility), and the personnel who will be working with the child and family. Because children with disabilities often have multiple needs, the intervention plan may involve training family members or other professionals (such as day-care staff) to deliver services so that the number of providers interacting with the child is manageable.
Services (early intervention, special education, related services). Early intervention services are delivered to young children by a variety of personnel in a variety of venues as designated through the IFSP. Services include home- and center-based interventions by physical and occupational therapists as well as speech and language therapy, deaf and blind education, parent training, and social work services. Increasingly, early intervention programs provide services for children who have behavior problems either as a primary concern or secondary to another disorder (developmental delay, deafness).
Special education for preschoolers, school-age children, and adolescents encompasses activities that enhance individual development. For severely affected children, special education may include measures to improve daily living skills such as eating, ambulation, transfers, bathing, toileting, and communicating basic needs. For children with complex learning styles, it may involve noticing the subtleties of a nonverbal learning disability and providing the child with the appropriate strategies to deal with his or her inability
to understand simple spatial relationships.
To meet complex and varied learning needs, IDEA supports the development of
innovative practices through its discretionary programs of research and technical
assistance. Research-based innovations include communication systems for nonverbal
children, computers that read text for blind children, early behavioral interventions
for children with autism, and teaching strategies that support children with
mental retardation in inclusive settings. (A helpful Web site, www.ideapractices.org
, contains links to many research and development efforts in special education.)
As noted, services for children with a disability must take place in the least restrictive environment. School systems are required to assure such children full access to the regular curriculum. IDEA mandates that each public agency ensures that:
- "to the maximum extent appropriate, children with disabilities, including
children in public or private institutions or other care facilities, are educated
with children who are nondisabled"
- "special classes, separate schooling, or other removal of children with
disabilities from the regular educational environment occurs only if the nature
or severity of the disability is such that education in regular classes with
the use of supplementary aids and services cannot be achieved satisfactorily."6
For example, if a child can learn well in a regular classroom and all
that keeps the child out is the width of his or her wheelchair, the school
is obligated to make physical accommodations to allow the child into that
Although, in the majority of cases, the least restrictive environment for a child is the regular classroom, a different arrangement may well enhance learning for some children. A child with a severe emotional disorder, for instance, might be more appropriately educated in a separate environment with specially trained teachers rather than in an open classroom, with its substantial risks and challenges. Most important, the child must have access to the general education curriculum, as appropriate to
his or her needs, regardless of environment.
IDEA addresses barriers to educational access through the provision of special education and related services. The law defines special education as "specially designed instruction, at no cost to parents, to meet the unique needs of a child with a disability."6 Related services are defined as "transportation and such developmental, corrective, and other support services as may be required to assist a child with a disability to benefit from special education." Such services may include speech and audiology services, psychological services, physical and occupational therapy, recreation, social work, school health services, counseling, and medical services for diagnostic and evaluation purposes. They can be provided only if they are related to the child's educational needs.6 A child may get occupational therapy to help her use a pencil or pen correctly so that she has access to what is being taught in a classroom, for example. A blind child may receive orientation and mobility services to help him get to classes independently.
Due process. The IDEA legislation assures that parents must be involved in all decisions about education plans, placement, and services for the child with a disability.6 Under IDEA, the parents of a child with special needs have the right to dispute the plan that is developed for their child and request further evaluation or a different set of services.
Due process provisions are carefully delineated. Parents are full members of the IEP team and may have early, meaningful input into their child's program. Parents must approve the program offered to their child. Families sometimes choose to obtain independent assessments of the student before agreeing to an educational plan. Parents can dispute the school district's offer through an impartial due process hearing designed to determine the most appropriate placement for the child. Parents who disagree with the decisions of hearing officers can challenge them in court or use the services of a state-appointed mediator who seeks to reach a mutually acceptable agreement between the parent and the district. Throughout the process, the child generally stays in his or her existing placement.
Parents have the right to timely proceedings, open disclosure of all assessments that may influence the program recommendations, and proper education concerning the issues at hand. These due process rights have provided a level of educational assurance to children with disabilities that is actually above that accorded to children without disabilities. Many families have used these mechanisms to protect the rights of their children. A few have even fought their cases to the US Supreme Court.
The 1975 Education for All Handicapped Children Act and subsequent legislation
have resulted in real progress on a number of fronts for children and adolescents
with disabilities. Nevertheless, significant challenges persist in educating
these youngsters. For a summary of achievements and challenges, see "Major
accomplishments of IDEA and continuing challenges".
Twenty-five years ago, pediatricians had a limited role with regard to special
education. They might be asked to write a note to keep a child with a disability
out of school or to help find an institutional placement for an infant with
mental retardation. They were rarely called upon to participate in a team assessing
a child's potential. Now, there are clear roles for and expectations of pediatricians
to serve as active members in the special education process. Four cases illustrate
a number of these activities.
Why isn't Sarah talking?
Sarah's parents bring her to her pediatrician's office for her 18-month well-child check-up with a long list of questions. Screening inquiries reveal that Sarah does not use any words yet; she has become especially adept at making her needs known through a combination of gestures, crying, and occasional bursts of verbal output (all vowel sounds). When the pediatrician asks her parents about her hearing, they reply that they have not had any concerns. In response to an inquiry about family history, they report that they know of no one in the family with a hearing problem.
Early detection of functional disability is a key role for pediatricians. From the very first encounter with a child, the physician has chances to discover developmentally relevant conditions such as sensory deficits, metabolic abnormalities, and acute and chronic infectious diseases.
This case illustrates the value of a systematic approach to screening for developmentally relevant concerns. Sarah's parents have questions about her, but it is through the formal screening questions that a worrisome pattern emerges. Increasingly, pediatricians are finding the value of such approaches to developmental screening and monitoring.7 At each office visit, it is important to probe for underlying conditions that may put the child at risk for later developmental delay and educational risk. Bright Futures: National Guidelines for Health Promotion outlines such an approach in detail.8 Many screening devices are now available to pediatricians.9,10 A number of Web-based and electronic encounter forms also can facilitate screening and compiling of developmental information.
Developmental monitoring should begin at birth. Risk of developmental delay is associated with premature birth, prenatal exposure to infectious agents, toxins and drugs, birth trauma, and congenital anomalies. Special attention to the developmental trajectories of children in these risk categories and prompt referral to early intervention programs can be facilitated by maintaining risk registries or by providing additional early visits for children who meet these criteria.
A growing number of state departments of public health are improving early detection of developmental disability through newborn screening mechanisms. Currently, all states screen newborns for phenylketonuria and hyperthyroidism. Many states have increased their panel of metabolic tests (47 states screen for galactosemia, 22 for biotinidase, 19 for maple sugar urine disease, and
13 for homocystinuria), so that it is now possible to detect a variety of amino acid and organic acid disorders. An increasing number of states are passing legislation to promote universal newborn hearing screening. As a result, families can learn of a child's deafness at birth, and the pediatrician may be able to set early intervention in motion almost directly from the newborn nursery.
Sarah's case points to the need for repetitive probing about developmentally relevant concerns. Newborn screening misses the 10% of acquired and progressive sensorineural hearing loss in children that cannot be detected at birth.11 Conductive hearing loss also can be a serious concern for young children. Because such hearing loss can appear at any time and then fluctuate, it is a good practice for pediatric offices to maintain monitoring programs for hearing. Familial concern about hearing loss at any time warrants careful follow-up and assessment by an audiologist skilled in pediatric hearing testing.
If Sarah does turn out to have a hearing loss, her pediatrician, in addition to medical management, will be responsible for directing her family to appropriate audiologic and speech and language treatment for the child through the state's early intervention program. Recent data on the effectiveness of early intervention for children with hearing problems strongly indicate that prompt detection can significantly improve a child's ultimate language, academic, and life performance.12,13
Sarah's case has other implications. The pediatrician may have Sarah's hearing tested and be reassured that her auditory acuity is fine. At the next visit, developmental monitoring will be essential to determine whether her language is progressing.7 If it is not, Sarah may have a significant expressive or receptive language problem that deserves in-depth investigation by a speech and language pathologist. Children with early language disability can be helped enormously by such early intervention.
Why can't TJ pay attention?
TJ is a 7-year-old boy who has been in his pediatrician's care since birth. He has been healthy throughout his life and met all milestones. He is now in second grade, and his parents have brought him to the pediatrician because they have received several reports from his teachers that he is "hyper."
Pediatricians often become involved with special education through the assessment and treatment of children for attention deficit hyperactivity disorder (ADHD). An extensive literature exists about this diagnosis and the treatments offered for it, both conventional and alternative.1416
The first task of the pediatrician confronted with the case of TJ would be to take a careful history, specifically highlighting aspects that are included in the criteria for diagnosis of ADHD in the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV). In addition, the physician must rule out other medical causes for difficult behavior, including hypo- or hyperthyroidism, lead intoxication, anemia, hearing or vision impairment, and other treatable conditions.
Children with ADHD should be assessed with behavior rating scales, which are best completed by different observers in different settings.14,17 TJ's pediatrician will therefore need to communicate with the school system. The differences between the cultures of health care and education can prove rewarding or frustratingor both. It can be critical to establish an effective parent-clinician-educator partnership to ensure that relevant information is obtained in a timely and efficient manner.
If the assessments lead to a diagnosis of ADHD, the next task for the pediatrician
is to help the family understand the diagnosis and its implications: medical,
social, and academic.18 Finally, the physician becomes involved in
the formulation and implementation of appropriate therapies for the child, including
behavioral modification strategies (often including appropriate recreational
activities), educational supports, and medications. Each of these requires that
TJ's parents be involved with the school to ensure that the therapies are carried
out appropriately; the support of the pediatrician can prove crucial. As with
other disabilities, not all children with ADHD qualify for IDEA services. A
significant number simply receive accommodations under Section 504 of the Rehabilitation
Act of 1973 (see time line).
Fortunately, straightforward systems of involvement can be set up and the
process does not need to be laborious or complicated. Also, few educators are
ignorant of the need for support for children with this condition, and systems
for both communication with doctors and dispensing medications often are already
in place. If a pediatrician develops a good relationship with the local school
district through management of children with ADHD, the care of children with
more complicated medical and educational needs will likely be easier.
How can we prevent Jamie from failing?
Jamie is a 13-year-old girl who has been in her pediatrician's practice since birth. She has been healthy throughout her life, and this is the first urgent care appointment that her family has made since her last ear infection 10 years ago. Her mother explains (with Jamie in the room) that Jamie's grades have been falling from Bs and Cs to Ds and Fs since she advanced to middle school. Her parents have just met with the staff of the school, who expressed concern that Jamie will not be able to make the transition to high school and recommended that she be retained in eighth grade for a second year. Jamie is strongly against this option, and her family has come to the pediatrician for advice.
Physicians who assess academic problems in children who had previously been "doing OK" are confronted with a broad and diverse differential diagnosis list similar to the seemingly endless options that accompany a presentation of abdominal pain or fever of unknown origin. A theoretical framework is necessary to approach the work-up and treatment systematically. School problems stem from a variety of causes (and may have more than one cause): primary learning disabilities, depression or other mental health problems, family strife (including, in extreme cases, physical or sexual abuse), abuse of alcohol or other illicit substances, acute and chronic medical conditions, and disruption of relationships. Each possible cause must be considered in assessing a child like Jamie.
Although most children with a primary learning disorder are identified earlier than middle school, all too often a student's difficulties are ignored or ascribed to "laziness" for many years. The delay in diagnosis can be extremely damaging and lead to secondary problems such as frustration with school, diminished self-esteem, and even depression. Determining the specific academic difficulties that Jamie is having will be crucial to the assessment process. A first step would be to take a detailed history from both Jamie and her parents. Usually this is best done in separate interviews. In addition, school records can be invaluable resources. In this case, an IEP evaluation by the school district should be requested, if it has not yet been done.
Because there are many different phenotypes of learning disability, it is important to assure that Jamie undergoes detailed assessment of the many facets of learning. An examination of her learning styles and general competencies can be performed in the office by a child psychologist, educational specialist, or developmental pediatrician. These direct observations give the clinician a first-hand look at Jamie's academic skills,19 which can be particularly important when the school and family disagree about the student's abilities, a not uncommon
During the assessment of Jamie's learning problems, the medical team must not overlook potential physiologic causes for her poor performance. These causes include new diagnoses as well as old ones that have resurfaced. It is also important, of course, to consider sex, drugs, abuse, and family disruption (divorce, frequent relocation, financial distress). Although these are not the usual causes of school problems, academic difficulties may be the first sign of a problem that is otherwise hidden.
Finally, the idea that a child should simply repeat a grade, usually with
the same teacher and materials, is rarely a good one. If this child failed on
the first try, she is unlikely to improve the second time, especially now that
she has been removed from her cohort of classmates and likely suffers humiliation.
A better course by far is to determine the reasons for her failures and address
them. It is easy for schools to suggest that they are "getting tough" and "raising
standards," but it is much more important that they address the real needs of
the real children who are struggling to succeed.
What are Jeffrey's rights?
Jeffrey is a 12-year-old boy who sustained a transection of his spinal cord at C1-C2 as the result of a diving accident. After 18 months of intensive rehabilitation, he is able to direct his wheelchair and use a specially modified computer, but he is still completely ventilator-
dependent and requires constant nursing care. Before the accident, he was an honor roll student and a top athlete on several teams. Now, his family is attempting to re-enroll him in the local public school. His parents have asked for his pediatrician's support in arranging his transition back to school.
As a result of IDEA, children with a physical disability and nursing needs
cannot be excluded from school. Two US Supreme Court cases have upheld the right
of children with complex health needs to receive special education and related
services (see Irving Independent School District v Tatro and Cedar
Rapids Community School District, Petitioner v Garret F in the time
line). It is incumbent on health-care providers to ensure that the nursing
services these children receive are of high quality and that the persons providing
the services are adequately trained and monitored.
Few cases are as complex as Jeffrey's. Nevertheless, most pediatricians in a busy practice care for patients who are receiving some level of assistance by medical technology (gastrostomy, tracheotomy, indwelling IV catheter, bladder catheterization). When the time comes for these children to attend school, the role of the pediatrician is central in ensuring that the plan set out to meet the child's medical and nursing needs is thoughtful and practical.
Entrance to school and transitions from one type of school setting to another
present important opportunities for physicians to ensure that children with
a special health-care need are adequately supported. School administrators need
to know the child's condition. They want information about any safety concerns
affecting the child and others around him. Communication with the school most
often reassures school personnel and reduces their anxiety. Many children with
special health-care needs require accommodation in school. Physician input into
discussions with the school can be very helpful in procuring the proper renovations
or equipment. If a child has a rare condition or needs the school to provide
a particular procedure such as clean intermittent catheterization, tube feeding,
or respiratory care, the school may need to hire or train new staff. School
officials turn to pediatric providers for help with this process.20
The flow chart outlines the steps by which children with special
health-care needs enter the educational system.
Beyond school entrance and transitions, pediatricians who are caring for children with complex medical needs, particularly those who are assisted by medical technology, should devote at least one visit a year to discussing with the child's parents what is happening in school. If the child is receiving special education services and has an educational program in place (an IEP), it is very valuable for the child's health-care provider to participate in preparing a companion document or individualized health plan (IHP). Such a document should include information on:
- the child's diagnosis
- names and contact information of persons important to the child's care
- the child's special health-care needs, baseline status, medications, diet,
transportation needs, procedures and equipment, and child-specific techniques
and helpful hints
- special considerations and precautions, emergency information, and an emergency
The health-care plan should be agreed to and signed by the child's parents or guardian, the child (if appropriate), a school administrative representative, and the physician.
A physician's order sheet and parent authorization for specialized health care should accompany the IHP. This systematic approach has been developed through Project School Care and used in many communities across the United States. Published guidelines for the care of children with complex medical needs are available.21
Through IDEA, pediatricians can advocate for their patients by:
- acting on behalf of individual children or families (a frequent avenue)
- acting in a local region (on the school board or town council)
- acting at the state and national level (by writing letters or giving testimony,
When children enter early intervention, the full extent of their health and developmental profile may not be thoroughly delineated or understood.22 Additional components of disability are often discovered or elucidated during the early intervention period. Physicians can both contribute to and benefit from this process.
For school-age children, the pediatrician can often make or break a child's chances of getting appropriate special education services. The pediatrician who takes the time to learn the specific language of the special education eligibility determinations can be extremely helpful. Failure to use the appropriate terminology, on the other hand, may result in poor communication with the school and lack of services for the child.
Pediatricians who keep abreast of special education developments are in an excellent position to alert parents to their entitlements and help them navigate the complex and lengthy process. Specifically, the pediatrician can:
- ensure that the family contacts the local special education office in writing
as soon as a difficulty is suspected
- request a copy of the reports generated by each assessment (both to maintain
a complete copy in the child's medical record and encourage timely reporting)
- review the final IEP with the family before the family signs it.
Too often, parents feel intimidated during large meetings with school personnel. Occasionally, it may be important for the physician to send a letter to the assessment team or even attend the meeting with the parents. Most school districts are very interested in having the child's physician involved, and this type of advocacy can have a significant impact on the ultimate substance of the IEP.
In the 25 years since federal special education legislation was implemented, localities and states have struggled with how to fund special education services. Almost every state has seen periods of retrenchment as the expense of providing services has increased. A major challenge comes from the unfulfilled promise of federal sharing in the funding formula, which has led to a growing disparity between funds authorized and those actually appropriated. The funding issue emerges
periodically as a congressional debate.
Whenever a reauthorization of legislation as far reaching as IDEA occurs, it is critical that professionals join with parents in advocating to maintain the successful portions of the laws and improve weak areas. IDEA is scheduled for reauthorization during the 107th Congress.23 Pediatricians must speak up both individually and collectively to ensure that no ground is lost for children with disabilities and new gains are made for children with mental health problems and those who suffer the double disadvantage of living in poverty and having a disabling condition.
A duty to move forward
"Wisdom, and knowledge, as well as virtue, diffused generally among the
body of the people, being necessary for the preservation of their rights and
liberties; and as these depend on spreading the opportunities and advantages
of education in the various parts of the country, and among the different
orders of the people, it shall be the duty of legislators and magistrates,
in all future periods of this Commonwealth, to cherish the interests of literature
and the sciences, and all seminaries of them; . . . to countenance and inculcate
the principles of humanity and general benevolence, public and private charity,
industry and frugality, honesty and punctuality in their dealings; sincerity,
good humour, and all social affections, and generous sentiments among the
A constitution or frame of government, Agreed upon by the Delegates of the
People of the State of Massachusetts Bay, March 1780, Chapter V, Section II.
"The Encouragement of Literature, etc."
At present, when budgets are tight and it seems that, too often, education is not a priority for state governments, it is good to remember the history of our country. The framers of democracy in America realized that, for democracy to work, the population must be well educated because to preserve their "rights and liberties" the citizens needed "wisdom, and knowledge, as well as virtue." They also foresaw the need to "[spread] the opportunities and advantages of education . . . among the different orders of the people." In other words, one of the bedrock foundations of the American experience is the universality of quality education.
It is in this light that the movement for quality special education must be seen. It is not a recently discovered right that sprang from the idealism of the 1960s, but rather a basic right that has not yet been fully realized. Special education is part of the enlightened understanding of our culture, which realizes that the group benefits if all its members are empowered by a full education. This insight stems from the simple fact that if all are educated, there is no "wasted talent."
With this in mind, we must continue to move toward appropriate inclusion in
the community of all our patients, no matter their condition or disability.
It is the duty of all those who interact with children to gain some knowledge
of these issues, especially their impact on the children we serve. This will
not be easy, of course, and will require creativity, hard work, and persistence.
1. Tjossem T (ed): Intervention Strategies
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2. National Academy of Sciences: Placing Children
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3. National Early Childhood Technical Assistance
System. Early Intervention Program for Infants and Toddlers with Disabilities
(Part C of IDEA). www.nectas.unc.edu/partc/partc.asp
4. Hebbeler K, Spiker D, Wagner M, et al: National
Early Intervention Longitudinal Study (NEILS): State-to-State Variations in
Early Intervention Systems. Menlo Park, Ca., SRI International, 1999 www.sri.com/neils/variations.pdf
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Early Childhood Intervention. New York: Cambridge University Press, 2000
6. Individuals with Disabilities Education Act
1997 Final Regulations. 34 CFR Part 300, Assistance to states for the education
of children with disabilities (Part B of the Individuals with Disabilities Education
7. American Academy of Pediatrics, Committee on
Children with Disabilities: AAP Policy Statement: Development surveillance and
screening of infants and young children (RE0062). Pediatrics 2001;108:192
8. Green M, Palfrey JS (eds): Bright Futures:
Guidelines for Health Supervision of Infants, Children, and Adolescents, ed
2. Arlington, Va., National Center for Education in Maternal and Child Health,
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(15 months6 years). Minneapolis, Minn., Behavior Science Systems,
10. Glascoe FP: Parents' concerns about children's
development: Prescreening technique or screening test? Pediatrics 1997;99:522
11. Utah State University: National Center for
Hearing Assessment & Management (NCHAM). www.infanthearing.org
12. National Research Council and Institute of
Medicine, Shonkoff JP, Phillips DA (eds): From Neurons to Neighborhoods:
The Science of Early Childhood Development. Washington, D.C., National Academy
Press, 2000, pp 142161
13. Yoshinaga-Itano C, Sedey A, Coulter DK, et
al: Language of early and later identified children with hearing loss. Pediatrics
14. American Academy of Pediatrics, Committee on
Quality Improvement: Clinical practice guideline: Diagnosis and evaluation of
the child with attention-deficit/hyperactivity disorder. Pediatrics 2000;105:1158
15. American Academy of Pediatrics: Committee on
Quality Improvement: Clinical practice guideline: Treatment of the school-aged
child with attention-deficit/hyperactivity disorder. Pediatrics 2001;108:1033
16. Chan E, Gardiner P, Kemper K: "At least it's
natural....": Herbs and dietary supplements in ADHD. Contemporary Pediatrics
17. Conners CK: Connors' Rating ScalesRevised
(CRS-R). Toronto, Canada, Multi-Health Systems, Inc, 1997
18. Levine MD: Attention and dysfunctions of attention,
in Levine MD, Carey WB, Crocker AC (eds): Developmental-Behavioral Pediatrics.
Philadelphia, WB Saunders Co, 1999, pp 499519
19. Levine MD: Educational Care: A System for
Understanding and Helping Children with Learning Problems at Home and in School.
Cambridge, Mass., Educators Publishing Service, Inc, 1994
20. Palfrey JS: Tool 6.7, in Community Child
Health. Westport, Conn., Praeger Publishing, 1994, p 129
21. Porter S, Haynie M, Bierle R, et al: Children
and Youth Assisted by Medical Technology in Educational Settings: Guidelines
for Care. Baltimore, Paul H. Brooks Publishing Co, 1997
22. Palfrey JS, Frazer C: Determining the etiology
of developmental delay: What if we had a common internationally accepted protocol?!!!
(editorial). J Pediatr 2000;136:569
23. US Department of Education: Education Department
hosts seven forums around the country on special education (press release).
Washington, DC, October 10, 2001. www.ed.gov/PressReleases/10-2001/10102001b.html
DR. SMITH, formerly a Dyson Advocacy Fellow and chief fellow in the division
of general pediatrics at Children's Hospital, Boston, and an instructor in pediatrics
at Harvard Medical School, is assistant professor of clinical pediatrics at
the University of Chicago Pritzker School of Medicine.
MS. MATHEWS is the project manager for the technical assistance team for
the Anne E. Dyson Community Pediatrics Training Initiative in the division of
general pediatrics at Children's Hospital, Boston.
DR. HEHIR is a lecturer on education and director of the School Leadership
Program at the Harvard Graduate School of Education and former director of the
office of special education programs, US Department of Education.
DR. PALFREY is chief of the division of general pediatrics at Children's
Hospital, Boston, and T. Berry Brazelton Professor of Pediatrics at Harvard
A scorecard of special education acronyms
|IDEA||Individuals with Disabilities Education Act|
|FAPE||Free appropriate public education|
|IEP||Individualized educational program|
|IFSP||Individualized family service plan|
|IHP||Individualized health plan|
Legislation starting with the 1975 special education law and culminating in the 1997 Amendments to the Individuals with Disabilities Education Act has led to
the following achievements on behalf of children and adolescents with disabilities:
Increase in the numbers of children receiving special education services. In 1966, an estimated 1.2 to 1.8 million children were enrolled in special educational programs
for exceptional children.1 As of November 1999, over
5.5 million children between 6 and 21 years of age were enrolled.2 In addition, nearly 600,000 children between
3 and 5 years of age were being served through a variety
of home- and center-based early intervention programs.2
Federal expenditures for special education increased from less than $252 million in 1977 to almost $5 billion in 2000. Unfortunately, actual federal appropriations have lagged far behind the projected supports that the original framers of the program intended.3
Greater precision in diagnosing children's disabilities. Disability designations have changed appreciably. The diagnosis of "learning disability" has increased threefold, in large part because families, teachers, and physicians are now more aware of children's varied learning styles.4 The diagnosis of "mental retardation" declined from 820,290 children in 1977 to 611,076 in 1999.2,5 Some of the decline has resulted from the availability of prenatal diagnosis and screening programs for early detection of disorders such
as phenylketonuria and hypothyroidism. Most observers believe, however, that children with environmentally induced delays were previously seriously overidentified.6 Their "retardation" was perpetuated and even exacerbated by the poor schooling they received in segregated,
Curricular innovation for children with different learning styles. Intensive educational strategies for elementary school students experiencing difficulty learning to read have been developed, based on research on dyslexia conducted by the National Institutes of Health. Various technologies have been developed to assist students with disabilities in school, ranging from computers that can read print to simplified spell checks.
In addition, many simple changes that can be implemented in the school environment and structure have proved to be beneficial to children with special learning needs8for example, installing inexpensive FM amplification devices in classrooms for children with hearing impairments or language-based learning disabilities.
Access for children with physical and sensory impairments. In the 197778 school year, only 41% of children with an orthopedic disability were being educated in a regular classroom.5 In 1997-98, 68% of such children were in a regular classroom.2 Gains in access for children with hearing and vision impairments have also been dramatic: In the period from 1977 to 1978, only 48%
of children with sensory impairments were in regular classrooms; by 1998, the percentage had risen to 60%.2,5 Architectural modifications (as required by the Americans with Disabilities Act), advances in hearing aides and FM transmitters, better use of new visual technologies, and partnership between educational and health professionals account for much of the improved access.
A major decrease in the institutional placement of children with mental retardation. In 1970, nearly 90,000 children were institutionalized, often in overcrowded, poorly staffed facilities. Some of these children never saw their families and did not have any access to educational opportunities.9 By 1995, all but 3,500 children had made the transition out of such settings. This is one of the shining achievements within special education; its impact on children, their families, and larger society cannot be overstated. Community resources have been developed
to assist families and allow them to care for their children at home and in their own neighborhoods. Moreover, real changes have occurred in the facilities that continue to operate, including improvements in staff (and staff training), physical plants, and especially, family and community involvement and oversight.
Because of these shifts in the care of those with a cognitive disability (and increasing technological supports), the children who remain in long-term care facilities have more complicated medical conditions than in the past. The ongoing task of helping these children make the transition to their family and community has therefore become increasingly difficult.
Accomplishments of IDEA notwithstanding, significant challenges remain in educating children and adolescents with disabilities.10 Despite growth in knowledge about how children with disabilities can learn, many children with a learning problem have not benefited from new special education techniques, and the long-term outcome for such children has been mixed. A recent study by the National Council on Disability found significant noncompliance with IDEA in most states, and substantial socioeconomic and racial disparities in access to high quality special education services persist.11 Although children with mental retardation are now living in communities and going to school with their brothers and sisters, they are rarely accommodated in regular classrooms. Only 12.6% of children classified with mental retardation were receiving their education in regular classrooms full-time during the 19971998 school year. Even though this is double the figure of 5.9% during the 19881989 school year, it is still a small minority.2
Schools are experiencing ever-increasing difficulty handling children with emotional or behavioral disorders, including attention deficit hyperactivity disorder (ADHD). The number of students identified as having an emotional disorder has doubled since 1976. Moreover,
in 1999, the special education regulations were modified to allow services for children with ADHD under the classification "other health impaired." Unfortunately,
the response to children with emotional and behavioral needs has been constrained by the lack of adequate resources to address many of their serious problems. In some states, the situation has reached crisis proportions. On October 25, 1994, for example, the state of Hawaii acknowledged to the federal district court that it had failed to provide necessary services to children who were entitled to special education and related mental health services.12
A particular difficulty that has surfaced over the last 10 or so years has been "discipline," especially for children with emotional and behavioral problems. Such children are obviously a challenge for those who care for them,
and important clinical questions remain about the best approaches to their management. The amendments of 1997 included substantial new language about the rights
of children with emotional and behavioral issues with regard to prompt re-entry into the school setting after an episode of discipline (such as suspension from school).
1. Martin EW: Statement, in Oversight of Public Law 94-142:
The Education for All Handicapped Children Act, Part 1Hearings Before
the Subcommittee on Select Education of the Committee on Education and Labor,
House of Representatives. Washington, D.C., US Government Printing Office,
1980, p 299
2. US Department of Education: To Assure the Free Appropriate
Public Education of All Children with Disabilities (IDEA Section 618): Twenty-second
Annual Report to Congress on the Implementation of the Individuals with Disabilities
Education Act. Washington, D.C., US Government Printing Office, 2000
3. US Department of Education, Budget Office: Personal communication.
4. National Research Council and Institute of Medicine, Shonkoff
JP, Phillips DA (eds): From Neurons to Neighborhoods: The Science of Early
Childhood Development. Washington, D.C., National Academy Press, 2000, pp
5. US Department of Health, Education, and Welfare, Office
of Education: Progress Toward a Free Appropriate EducationA Report
to Congress on the Implementation of Public Law 94-142: The Education for All
Handicapped Children Act. Washington, D.C., US Government Printing Office,
6. Shonkoff JP, Meisels SJ: Early childhood intervention:
The evolution of a concept, in Shonkoff JP, Meisels SJ (eds): Handbook of
Early Childhood Intervention. New York: Cambridge University Press, 2000
7. Hehir T, Gamm S: Special education: From legalism to collaboration,
in Heubert JP (ed): Law & School Reform: Six Strategies for Promoting
Educational Equity. New Haven, Conn., Yale University Press, 1999, pp 228232
8. Citro TA (ed): The experts speak: Parenting the child with
learning disabilities. Waltham, Mass., Learning Disabilities Association of
Massachusetts, 2001. www.ldam.org
9. Smith J, Prouty B, Polister B, et al: Trends and milestones:
Large state residential facilities: Status and trends in population characteristics
as of June 30, 2000. Ment Retard 2001;39:334
10. Finn Jr CE, Rotherham AJ, Hokanson Jr CR (eds): Rethinking
special education for a new century. Washington, D.C., The Thomas B. Fordham
Foundation, 2001. www.edexcellence.net
11. National Council on Disability: Back to School on Civil
Rights. Washington DC, 2000, http://www.ncd.gov/newsroom/publications/backtoschool_1.html
12. Jennifer Felix et. al. v. Benjamin Cayetano, et. al.,
Civil No. 93-00367 DAE (D. Haw. Oct. 25, 1994) (Order Granting Approval of Consent
Web resources relating to special education
IDEA Practices Home: This site answers questions about the Individuals with
Disabilities Education Act and supports efforts to help all children learn,
progress, and realize their dreams. Site design by Education Development Center,
Inc., Newton, Mass.
The Office of Special Education Programs (OSEP) is dedicated to improving results
for infants, toddlers, children, and youth with a disability from birth through
21 years of age by providing leadership and financial support to assist states
and local districts. The site maintained by OSEP, Office of Special Education
and Rehabilitative Services (OSERS), US Department of Education.
Rethinking Special Education for a New Century is a volume of papers examining
the past, present, and future of special education. It is intended to help lay
the groundwork for the 2002 IDEA reauthorization debate. The entire volume is
available as a single PDF document. The site is maintained by the Thomas B.
Fordham Foundation, Washington, D.C.
The Web site of the American Academy of Pediatrics contains a link to an advocacy
section regarding children with special health-care needs.
Information on this site is based on published guidelines for health supervision
of infants, children, and adolescents. One goal of the Bright Futures project
is to establish a partnership between health professionals and families. This
site is designed to be used by both health professionals and families and to
help users to better understand the diagnostic process and what to expect during
health supervision visits. Issues, concerns, and questions are also addressed.
Since its inception in 1990, Bright Futures has been funded by the US Department
of Health and Human Services under the direction of the Maternal and Child Health
Formed in 1982, the Society for Developmental and Behavioral Pediatrics (SDBP)
is a national, interdisciplinary organization with about 640 members. The goal
of the site is to improve the health care of infants, children, and adolescents
by promoting research and teaching in developmental and behavioral pediatrics.
Peter Smith, Kusum Mathews, Thomas Hehir, Judith Palfrey. Educating children with disabilities: How pediatricians can help. Contemporary Pediatrics 2002;9:102.