Judith S Palfrey

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         diminishes the right of individuals to participate in or contribute to         society. Improving educational results for children with disabilities         is an essential element of our national policy of ensuring equality of         opportunity, full participation, independent living, and economic self-sufficiency         for individuals with disabilities."

 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.

 During the 20th century, the United States saw slow, steady progress in legislation   acknowledging the citizenship and fundamental rights of persons with disabilities.   The 

 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.

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:

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.

It is important to note that "disability" is defined state by state. Moreover, the referral is directed to a specific agency in each statethe 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.

 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.

Identification of children who have passed their third birthday is handled by each state's Department of Education.

 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. 

 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, 

   , contains links to many research and development efforts in special education.) 

As noted, services for children with a disability 

. 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."

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     classroom. 

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."

 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.

 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.

 The IDEA legislation assures that parents must be involved in all decisions about education plans, placement, and services for the child with a disability.

 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. 

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.

 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

 Many screening devices are now available to pediatricians.

 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.

 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.

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.

 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. 

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.

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.

 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 frustratingor 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.

 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 

 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. 

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,

 which can be particularly important when the school and family disagree about the student's abilities, a not uncommon occurrence.  

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. 

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

Cedar   Rapids Community School District, Petitioner v Garret F 

). 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.

 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:

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     plan. 

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.

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) 

Articles

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.

Judith S Palfrey

Articles

Educating children with disabilities: How pediatricians can help