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the Lifespan
Dilip R. Patel, MD, FAAP, FAACPDM, FSAM, FACSM,
Donald E. Greydanus, MD, FSAM, FAAP, FIAP,
Joseph L. Calles Jr, MD, and Helen D. Pratt, PhD
Introduction
Developmental disabilities (DD) or neurodevelopmental disabilities (in-
cludes intellectual disability (ID)) are a diverse group of chronic disorders
(Table 1) that begin at any time during the development process
(including conception, birth, and growth) up to 22 years of age and last
throughout an individuals lifetime.1 The underlying basis for these
disorders lies in fundamental deficits in the developing brain due to
genetic, prenatal, perinatal, metabolic, and other factors.2 DD affect 17%
of individuals younger than 18 years of age in the USA.1 Prevention along
with early recognition and intervention are critically important to mitigate
the enormous personal and socioeconomic impact of these disorders. It is
estimated that the lifetime cost for those born in 2000 with ID will be $50
billion, $11 billion for cerebral palsy (CP), $2 billion for hearing loss, and
$2.5 billion for vision impairment.1
Historically, the field of neurodevelopmental disabilities has evolved
based on a firm foundation of basic and clinical neurosciences.3 Much of
the credit for the recognition of neurodevelopmental disabilities as a
specialty in the USA goes to the father of developmental pediatrics, Dr.
Arnold J Capute (1923-2003), and his fellows from the Kennedy Krieger
Institute at Johns Hopkins University.4,5 Neurodevelopmental disabilities
was recognized as a specialty by the American Board of Medical
Subspecialties in 1999. As a true reflection of its interdisciplinary nature
and its foundation in neuroscience, the 4-year training curriculum is an
integrated training program in adult neurology with a focus on adults with
DD (12 months), child neurology plus neurodevelopmetal disablities (18
months), and related clinical as well as basic neurosciences (18 months).
Intellectual Disability
Definition
According to the American Association of Intellectual and Develop-
mental Disabilities, ID is a disability characterized by significant
limitations both in intellectual functioning and in adaptive behavior as
expressed in conceptual, social, and practical adaptive skills.25,26 The
assessment of intellectual functioning and adaptive behavior must con-
sider the expectations based on individuals age and culture.26 The
influence on cognitive assessment of sensory, motor, communication, or
behavioral factors should also be appropriately considered in administra-
tion of assessment instruments, and interpretation of their results.26
In the USA a widely used definition is the 1 from the IDEA that defines
ID as significantly sub-average general intellectual functioning, existing
concurrently with deficits in adaptive behavior and manifested during the
developmental period that adversely affects a childs educational perfor-
mance.13
According to the Diagnostic and Statistical Manual of Mental Disor-
ders, 4th ed, text revision (DSM-IV TR), ID (or mental retardation) is
defined as an IQ of approximately 70 or below on an individually
administered standardized test of intelligence concurrent with deficits in
adaptive functioning in 2 of the following areas: communication, self-
care, home living, social or interpersonal skills, use of community
resources, self-direction, functional academic skills, work, leisure, health,
and safety. All definitions stipulate that the onset of disability must occur
before the age of 18 years.27
It is generally agreed that, although not perfect, appropriately measured
IQ provides the best objective estimate of intellectual functioning.27-29
Based on the mean value for IQ of 100, the upper limit of 70 as the cutoff
represents the value that is 2 standard deviations below the mean. Because
there is a 5-point standard error of measurement, it is argued that a range
of 70-75 should be considered as the upper limit of IQ as the cutoff value
for ID. Based on the typical bell-shaped curve of distribution of IQ scores,
raising the IQ score from 70 to 75 as the upper limit of cutoff will double
the number of individuals with ID from 2.27% to 4.85% of the
population.25,26,28 An individual with an IQ score of 75 with significant
adaptive disability will be considered to have an ID, whereas an
DM, June 2010 311
TABLE 5. Classification of intellectual disability severity
Severity Level
Intelligence Supports Needed in Daily Living Activities
(Percentage of
Quotient Range Such As School, Work, or Home
Individuals with ID)
Mild (85%) From 50-55 to 70 Intermittent Support on as needed basis,
episodic or short-term
Moderate (10%) From 35-49 to 50-55 Limited Consistent over time, but time
limited
Severe (4%) From 20-25 to 35-40 Extensive Regular, consistent, lifetime
support. Regular support in
at least one aspect such as
school, work or home
Profound (1%) Less than 20-25 Pervasive High intensity, across all
environments, lifetime, and
potentially life-sustaining
(Based on American Psychiatric Association. DSM-IV TR, 2000; American Association of
Intellectual and Developmental Disabilities, 2002.)
Outcome
The adult outcomes and functioning of individuals with ID are sum-
marized in Table 10.6,7,8,26,27,29,30 Although ID is initially identified in
infancy and early childhood years, it has lifelong implications for growth
and development, education, ability to live independently, health care,
ability to find employment, and need for community-based supports.
Communication difficulties can have a major impact in the lives of
persons who have ID. Other issues that have relevance to provision of
medical care to adults who have ID include their ability to consent for
care and procedures, financial independence, community living condi-
tions (Table 11), ability to obtain employment (Table 12), and end-of-life
care issues.6-8,26,28-30 These issues affect individuals with all types of DD.
Advancing age is a risk factor for the development of dementia, and this
is especially true in DS, and, to a lesser extent, in other IDs.47 The
presence of dementia exacerbates the baseline cognitive impairments of
people with IDs and greatly increases the amount of time and effort needed
to provide their care and to ensure safety. Given that the dementia associated
318 DM, June 2010
TABLE 11. Community living options for persons with DD
Family Home. Young adult individuals who have developmental disabilities live at home
with family who provide most support and assistance as needed.
Supported Living. Individuals who have developmental disabilities live independently in the
community setting with appropriate support (such as aide at home, transportation, and
assistive technology) provided by different agencies in the community.
Assisted Living. Typically 5-7 individuals who have developmental disabilities live in a
group home setting. Needed support or assistance is provided based on individual needs
and abilities in all areas of daily living.
Intermediate Care Facilities. Individuals with developmental disabilities who need
extensive and complex care may live in intermediate care facilities. Typically fewer than
25 individuals are housed in such facilities. Care is provided in an integrated setting.
(Used with permission from Burdo-Hartman WA, Patel DR. Medical home and transition
planning for children and youth with special health care needs. Pediatr Clin North Am
2008;55(6):1294, Table 2.)
Adolescents who have LDs have increased rate (up to 40%) of dropping
out of school, low self-esteem, and social skills deficits.49,50,53 The risk
for developing a psychiatric disorder is also much higher in adolescents
who have LDs.
There are no good data on the natural course and long-term prognosis
of WLD.60 It seems reasonable to assume that academic programs or
occupations that emphasize writing (eg, journalism) might exclude
individuals with writing disorders, or at least make it more difficult for
them to succeed at them. However, EIs to maximize skills in other modes
of expression, such as speaking, might afford an otherwise qualified
person the opportunity to pursue his or her career of choice.
Communication Disorders
Definition
Language is a system of symbolic knowledge represented in the brain
used for meaningful communication.65 The English language has 44
phonemes. A phoneme is a unit of sound in speech.65,66 A morpheme
(word) refers to the smallest meaningful unit of language.67 The basic
components of the language are defined in Table 14.65-67 Speech is the
324 DM, June 2010
TABLE 15. Major categories of communication disordersa
Expressive Language Disorder. Scores obtained from standardized individually
administered measures of expressive language development are substantially below
those obtained from similar measures of both IQ and receptive language development
Mixed Receptive-Expressive Language Disorder. Scores obtained from a standardized
individually administered measure of both receptive and expressive language
development are substantially below those obtained from similar measures of nonverbal
intellectual capacity
Phonologic Disorder. Failure to use developmentally expected speech sounds that are
appropriate for age and dialect
Stuttering. Disturbance in normal fluency and time patterning of speech (inappropriate for
the age of the individual)
Communication Disorder Not Otherwise Specified. Does not meet criteria for any other
communication disorder
a
For all the disorders there must be interference with individuals academic, occupational
achievement, and social functioning. Based on DSM-IV TR, 2000.
Management Principles
Deficits and abnormalities in speech and language can be symptoms of
some underlying genetic, neurologic, or psychiatric disorder and the physi-
cian plays an important role in the medical diagnostic workup to diagnose
these conditions and provide medical management when identified. Children
who have abnormalities of speech and language should be referred to a
speech-language pathologist for evaluation and long term treatment.
Outcome
When children (ages 7-8 years) with developmental receptive language
disorders (DRLDs) were compared with same-age children with autism,
the latter group were clearly differentiated from the former by poorer
communication skills and poorer socialization.70,71 By age 23-24 years
the autism group subjects were still more impaired; however, the
distinctions were less clear, and there was more overlap in communica-
tion and social skills between those with DRLDs and those with autism.
In other words, by early adulthood, some individuals with DRLDs may be
functionally similar to some individuals with autism.
Most persons who have expressive language disorder acquire typical
language abilities by adolescence, although mild deficits may persist in
adults.65,67 The prognosis in those who have mixed receptive-expressive
language disorder acquisition of normal language skills is relatively worse
than in those who have expressive language disorder.66 Most children who
have mild to moderate phonologic disorder have normal language by 6 years
of age.27 Stuttering has a waxing and waning course. Some children who
have stuttering may recover spontaneously by late adolescence; however,
subtle dysfluencies may persist in 20%-80% of adults.27,66
Cerebral Palsy
Definition
According to American Academy of Cerebral Palsy and Developmental
Medicine, CP describes a group of permanent disorders of development
of movement and posture, causing activity limitation, that are attributed to
nonprogressive disturbances that occurred in the developing fetal or
infant brain.94,95 The motor disorders of CP are often accompanied by
disturbances of sensation, perception, cognition, communication, and
behavior, by epilepsy, and by secondary musculoskeletal problems.95 CP
is classified as spastic (hemiplegia, diplegia, quadriplegia), dyskinetic
(choreoathetoid, dystonia), hypotonic, or mixed.94-96
Epidemiology
The worldwide incidence of CP is estimated to be 2-3 per 1000 live
births.94,97-99 Each year about 10,000 babies born in the USA develop
CP.3,100 Because initial symptoms and signs suggestive of CP may
resolve during first few years of life, the prevalence of CP is generally
higher in infancy. Despite a tremendous improvement in obstetric and
neonatal care, the overall prevalence of CP has remained the same since
332 DM, June 2010
TABLE 16. Risk factors for developing cerebral palsy
Maternal conditions before conception
Advanced paternal age
History of menstrual disorders
Maternal epilepsy
Maternal intellectual disability
Maternal thyroid disease
Pregnancy-related
Bleeding in the third trimester
Congenital malformations
Exposure to teratogens
In utero stroke
Incompetent cervix
Low birth weight (less than 2500 g)
Maternal-fetal infections
Multiple pregnancies
Placental insufficiency
Prematurity (gestational age less than 36 weeks)
Tobacco, alcohol, illicit drug use
Trauma while pregnant
Labor and delivery related
Emergency caesarean delivery
Fetal bradycardia
Intrapartum hypoxia
Premature rupture of membranes
Presentation anomalies
Prolapsed cord
Prolonged and difficult labor
Traumatic delivery
Vaginal bleeding at the time of admission for labor
After delivery--neonatal
Acute respiratory distress
Coagulopathies
Hypoxia
Meningitis
Neonatal hyperbilirubinemia
Neonatal seizures
Septicemia
Traumatic brain injury
the 1950s.95,96 This trend is partly explained by the fact that most low
birth weight and premature babies now survive. Although prematurity and
low birth weight are significant risk factors for developing CP, multiple
other risk factors have been identified (Table 16).94-101
Diagnosis and Clinical Features
The most significant cause of motor delay in infancy is CP, which
consists of motor delay, abnormal tone, and posture.100 Generally,
DM, June 2010 333
delayed or atypical motor development manifests earlier than other
domains of development. Because there is a range of periods during
which infants achieve typical milestones, the most common cause of
apparent motor delay is a normal variation or maturational lag.94-96
Clinical presentation and features of infants and children with CP may
vary depending on its type and severity. Early warning signs of CP are
delayed motor milestones, toe walking, persistent fisting, increased rate of
growth of head circumference, seizures, irritability, poor suck, handed-
ness before age 2, and scissoring.94
A child over 2 months of age with CP may have poor head control, stiff
legs, and scissoring.94,99 A child over 6 months of age may still not have
head control, may not sit unsupported, and might preferentially use only
1 extremity.94 A child over 10 months of age might crawl by pushing off
with 1 hand and leg while dragging the opposite hand and leg and may not
sit without support. A child over 12 months of age might not be crawling
and may not stand even with support. A child over 24 months of age may
not yet be walking or able to push a toy with wheels. Other causes of
predominant motor delay include traumatic insults to the central nervous
system damage (kernicterus, birth injury, stroke), metabolic insults,
congenital infections; spinal cord disorders (myelomeningocele, Werd-
nigHoffmann syndrome); myopathies; muscular dystrophies; and benign
congenital hypotonia.96,99-101
Diagnosis of CP is descriptive, based on findings of history and physical
examination.95 Because early signs and symptoms suggestive of CP may
resolve in many cases by 2-3 years of age, a definitive diagnosis of CP
during infancy is not reliable.95,96 Ongoing clinical observation is
therefore essential during the first few years of life to monitor resolution,
persistence, or evolution of signs and symptoms. Because CP is nonpro-
gressive, regression of developmental milestones or progression of signs
and symptoms should be carefully evaluated to exclude other disorders.
Persistence of primitive reflexes, typically present in the first few
months of life, is also a sign of CP.96 Primitive reflexes, which are
mediated subcortically in the brain stem, are integrated into more
complex reactions by 6-8 months of life because of further development
of cortical connections.17,18 With the integration of primitive reflexes, the
righting, protection, and equilibrium postural reactions emerge, which are
necessary for continued sequential acquisition of motor skills (sitting,
standing, walking).16-18 Persistence of primitive reflexesa characteristic
sign of CPtherefore prevents or delays age-appropriate typical progres-
sion of motor development.96
The neurologic impairment of motor system in children who have CP is
334 DM, June 2010
characterized, in order of frequency, by spasticity, dyskinesia, hypotonia,
and ataxia.95 Mixed presentations are not uncommon. Hypotonia, with or
without associated spasticity generally truncal hypotonia and spasticity
of extremities, are also seen.95,96
In most cases of CP, no cause is identified. However, it can be argued
that an etiologic evaluation may have a role in some cases to identify
other disorders that may be treatablefor example, dopa-responsive
dystonia, which responds dramatically to dopamine supplementation.101
In addition to motor impairment and abnormal tone, loss of motor skills
or the presence of associated symptoms such as unexplained hypoglyce-
mia, recurrent vomiting, or progressively worsening seizures suggests
inborn errors of metabolism.99,101 In the presence of a family history of
unexplained neurologic symptoms or infant deaths, the child should be
investigated for a possible metabolic disorder. Magnetic resonance
imaging (MRI), which shows an abnormality in approximately 90% of
cases of CP, is the neurologic study of choice in the evaluation of
CP.100,101 The reported abnormalities on MRI in children with CP include
major and minor malformations of the brain, in utero strokes, and white
matter loss.100,101 A finding of periventricular leukomalacia has been
strongly correlated with development of CP in very low birth weight
infants.95-98
Management Principles
Management of children and adults who have CP requires participation
of multiple disciplines in a long-term, coordinated manner.102 The PCP
plays the most critical role in early diagnosis and facilitating and
coordinating such care. In addition the PCP plays a role in health
maintenance, preventive care, psychosocial care, and management of
associated medical conditions (Table 17).96,101-105 Most associated med-
ical conditions in persons who have CP are treated similarly to persons
without CP; however, challenges include communication, a need for high
index of suspicion to recognize problems early, and often atypical clinical
presentations.
Also, it is important to recognize that many age-related changes and
diseases occur early in persons with CP. Management of orthopedic
conditions and secondary deformities (Table 18) is important.106-109
Assistive technology plays an important role in the management of
persons who have CP and other DD.110-112 Physicians play an essential
role in the determination of the need for and ordering assistive technol-
ogy, some of which are expensive. According to the IDEA, the term
assistive technology device means any item, piece of equipment, or
DM, June 2010 335
TABLE 17. Conditions associated with cerebral palsy
Neurologic Seizures (30%-50%)
Pulmonary Restrictive lung disease (secondary to scoliosis)
Chronic lung disease of infancy
Dysphagia (40%)
Obstructive sleep apnea
Excessive drooling
Recurrent aspiration
Gastrointestinal Oral motor dysfunction and feeding difficulties (80%-90%)
Poor nutritional status and growth
Gastroesophageal reflux disease (25%-80%)
Constipation (80%)
Bowel incontinence
Genitourinary Bladder incontinence
Recurrent urinary tract infections
Skin Decubitus ulcers
Vision (40%) Refractive errors; myopia (75%)
Strabismus, amblyopia, cataract, nystagmus, optic
atrophy, cortical visual impairment
Hearing Hearing impairment (5%-15%)
Dental Malocclusions
Communication Speech and language impairment (40%); dysarthria
Pain from multiple causes Migraine, corneal abrasions, temporomandibular joint
dysfunction, gastroesophageal reflux disease,
constipation, hip dislocation, muscle spasms,
progressive scoliosis
Sleep Sleep disturbances (25%)
Endocrine Delayed or precocious puberty
Psychosocial and behavioral ADHD, self-injurious behaviors, depression (20%)
Intellectual disability Intellectual disability (30%-65%)
Learning disabilities Learning disabilities
Musculoskeletal Scoliosis, hip dislocation, Patella alta, multiple joint
contractures
children who have CP with mild ID and 65% of children with severe ID
survive until the age of 38 years.102 Overall survival of all children with
CP until the age of 20 years is 90%.102,104
In addition to psychosocial care and the management of associated general
medical conditions (Table 15), secondary musculoskeletal conditions (Table
21) are major aspects of management in adults.96,101,102,106,108-115
Myelomeningocele
Definition
Neural tube defects (NTDs) result from failure of the neurulation, that
is, failure of the closure of the neural tube during development of central
nervous system as expected between the third and fourth week of in utero
development.116,117 Although any segment of spinal level can be affected,
75% of cases involve the lumbosacral level.118 Myelomeningocele is the
most severe type of NTD in which there is a defect in the vertebral
column through which the meninges and the spinal cord protrude at the
level of the defect.117
Epidemiology
The prevalence of NTDs varies in different regions of the world.118 In
the USA, the incidence of NTDs is 1 in 4000 live births.116,118 In Wales
and Ireland, the prevalence is 3-4 times higher, whereas in Africa it is
much lower.118 The variability in prevalence rates of NTDs in different
regions of the world is believed to be due to a combination of genetic and
environmental factors. Lumbar myelomeningocele, which is 3-7 times
338 DM, June 2010
TABLE 22. Risk factors for neural tube defects
Risk Factor Evidence of Risk
Nutritional Incidence of neural tube defects peaks after famine
Seasonal variations
Preventive effect of acid in case-controlled and randomized studies
Environmental East-to-west trend in USA
Decreased risk among Irish who migrate to USA
Seasonal variations
Genetic Familial risk
2%-4% recurrence after 1 affected child
11%-15% recurrence after 2 affected children
Ethnic differences
Prevalence in US populations: Hispanic white African American
Great Britain: highest risk in Celtic population
India: highest risk in Sikh population
Chromosomal abnormalities
Genetic disorders (Waardenburg syndrome; 22p11 microdeletion)
Variant form of methylenetetrahydrofolate dehydrogenase (677C-T)
Physical Association with maternal fever during pregnancy
Association with maternal use of hot tubs or sauna during pregnancy
Maternal Obesity
Diabetes mellitus
Teratogenic High vitamin A intake
Valproic acid
Alcohol
(Used with permission from: Wolraich M et al, editors. Developmental and Behavioral
Pediatrics; Evidence and Practice. Philadelphia: Elsevier Saunders, 2008. p. 496, Table
14-10.)
Psychotic Disorders
Background. An extensive review of the medical literature found 62
congenital/genetic disorders that are associated with psychosis.163 Of that
DM, June 2010 349
group, 17 disorders (27%) are also associated with intellectual impair-
ment, with the most commonly encountered diagnoses being autistic
disorder, DS, fragile X syndrome, phenylketonuria, and velocardiofacial
syndrome. Unfortunately, the presence of autistic symptoms complicates
the identification of psychotic symptoms, as there are similarities between
the 2 symptom clusters.164 The diagnosis of psychosis can also be
difficult in individuals with IDs, even in the absence of autistic symptoms.
For example, a study of 21 individuals with comorbid IDs and psychotic
disorders (diagnosed before age 18 years) found at 2-year follow-up that
13 (62%) no longer had psychotic symptoms.165 A 2-year follow-up study
of 1023 adults with IDs found a point prevalence for psychosis of
2.6%-4.4% and a 2-year incidence of 1.4%, of which one third were
first-time episodes.166 The expected incidence of new-onset psychosis in
those with IDs was calculated to be 10 times greater than in the general
population.
Psychopharmacology. Investigations of the AAs in DD and ASDs have
almost exclusively focused on their use for behavioral disturbances. The
consensus guidelines for the treatment of psychiatric disorders in indi-
viduals with IDs do recommend, for psychosis, either risperidone or
olanzapine as first-line agents, followed by quetiapine as a second-line
agent.157 Risperidone was rated a first-line treatment by over 90% of the
experts surveyed, based in large part on the RCTs of its use in the DD and
ASDs. One concern related to the use of AAs in the DD population is the
promotion of weight gain, hyperglycemia, and hyperlipidemia. A study in
adults with DD found that the metabolic changes associated with the AAs
are not inevitable, provided that patients are closely monitored, their diets
are controlled, and exercise regimens are initiated.167
Sexuality and Gynecologic Care
Sexuality is a complex phenomenon that involves intricate interactions
between the individuals biological sex, core identity (sense of maleness
or femaleness), and gender role behavior (nonsexual as well as sexual).168
Sexuality continues to be a core and profound component of humanity in
which human beings need other humans. This capacity for giving and
receiving love remains throughout life. The success or failure encountered
by children, adolescents, and adults with regard to their sexual system
development significantly contributes to the potential success or failure of
their appropriate success in living across the lifespan.
A common myth among parents and society in general about persons
with disabilities or chronic illness is that these individuals are or should
be asexual, that they suppress their sexual needs because of their
350 DM, June 2010
disability, are not subject to sexual abuse, and do not require comprehen-
sive sexuality education.168-172 Patients of all ages, parents of pediatric
patients, and clinicians must be educated that such concepts are not true
and that all human beings, whether healthy or not, are sexual human
beings and need comprehensive sexuality education and sexuality man-
agement.171-178 For example, parents and clinicians must understand that
normal development of adolescence implies that youth must learn to
emancipate from parents and develop a normal sense of self-identify
within the reality of their cognitive abilities. Youth must learn to
understand who they are as functional and sexual human beings.
Psychologic Effects of Disability on Sexuality
Sexual adequacy and sexual activity are often altered by disability and
physical illness.168-179 The timing of pubertal changes can normally vary
considerably and such timing can impact youth considerably in their
developing a sense of sexual intimacy.173 Some problems can also cause
a delay in maturation, whether from a disorder (as in the PraderWilli
syndrome with development of a small penis and cryptorchidism in males
or delayed puberty in females) or medications (as corticosteroids) used in
treatment of medical conditions. The development of hypogonadism (as
noted in some with DS or PraderWilli syndrome) has major effects on
these specific youth and adults as well. On the other hand, puberty may
be early in many conditionsCP, hydrocephalus, obesity, Williams
syndrome, meningomyelocele.168,173 Early puberty that is a variant of
normal or due to disability or disorder may thrust the precocious child
into issues of middle adolescence and beyond before s/he and parents are
prepared. For example, sexuality issues become more developed in
middle adolescence often with sexual experimentation taking place.
Sexual adequacy for adolescent girls may be measured in physical
attractiveness.168 Unattractive physical features caused by a disease
process or required medical treatment often pose a severe threat to
self-esteem, sometimes resulting in promiscuous attempts to prove ones
femininity and normalcy, leading to unwanted pregnancy and sexually
transmitted infections (STIs). To reduce undesirable physical manifesta-
tions of the disease process or treatment sequelae, the physician may need
to schedule additional appointments to control medication, and when
possible, explore alternative means of treatment. Cosmetic surgery may
be a viable and important option in this regard for adolescents or adults
with orthopedic and other defects.
In adolescent or adult females, serious chronic illness or disability can
predispose her to a greater risk of pregnancy than others with less serious
DM, June 2010 351
TABLE 24. Data for sexual behavior of persons, 10-24 years of age in the United States, 2002-
200719
745,000 Pregnancies in 2004 in females under age 20
16,000 Females aged 10-14 years became pregnancy in 2004
Nearly 18,000 females and males 10-14 years of age had reported STDs in 2006
22,000 persons aged 10-24 years in 33 states with HIV/AIDS in 2006
One million persons aged 10-24 years with chlamydia, gonorrhea, or syphilis
25% of females aged 15-19 years and 45% of females aged 20-24 years had HPV in 2003-
2004
105,000 Females aged 10-24 years had hospital emergency department visit for nonfatal
sexual assault injury during 2004-2006
Sexuality Education
Comprehensive sexuality education is the key, as noted, that is directed
at the specific patient of all ages.168,199 For example, discussion of
masturbation can be directed by the clinician to the parents of young
children, children, and youth. It can be taught that masturbation is a very
common aspect of normal human sexuality and genital self-stimulation
for pleasure is practiced by most adults in some manner. Thus, parents
DM, June 2010 353
TABLE 25. Consequences of sexual assault
Chronic drug abuse
Chronic syncope
Depression and other mental health disorders
Eating disorders
Enuresis
Excessive masturbation
Juvenile delinquency and other youth violence
Juvenile prostitution
Psychosomatic disturbances (chronic headaches or abdominal pain)
Persistent hyperventilation syndrome
Pregnancy
Refractory seizure disorders
Runaway behavior
Severe parentchild/youth conflicts
School failure and dropout behavior
Sexually transmitted diseases
Sexual dysfunction
Sleep disturbances
Suicide attempts and completions
Medical Home
The medical home is an approach to providing comprehensive primary
care to all children and adults, especially children and youth with special
health care needs.272 Children and youth with special health care needs
are defined as children and youth birth to 21 years of age and have long
term, chronic physical, developmental, behavioral or emotional illness or
condition. The illness or condition is severe enough to restrict growth,
development or ability to engage in usual activities; has been or is likely
to be present or persist for 12 months to lifelong; and is of sufficient
complexity to require specialized health care, psychologic or educational
services of a type or amount beyond that required generally by children
(US Maternal and Child Health Bureau, 1998). The essential partners in
the medical home are the patient, the parents or legal guardians, the
physician, and the care coordinator. They work together to achieve the
maximum potential for the individual.
Transition Planning
According to the Society for Adolescent Medicine, transition is the
purposeful planned movement of adolescents and young adults with
chronic conditions from child-centered to adult-centered care.274 Transi-
tion services, as defined in the IDEA, are a coordinated set of activities
for a child with a disability that (a) is designed to be within a
results-oriented process, that is focused on improving the academic and
functional achievement of the child with a disability to facilitate the
childs movement from school to post-school activities, including post
secondary education, vocational education, integrated employment (in-
cluding supported employment), continuing and adult education, adult
services, independent living or community participation, (b) is based on
the individual childs needs, taking into account the childs strengths,
preferences and interests, and (c) includes instruction, related services,
community experiences, the development of employment and other
362 DM, June 2010
post-school adult living objectives, and, when appropriate, acquisition of
daily living skills and functional vocational evaluation.13
The Consensus Statement on Health Care Transitions for Young Adults
with Special Health Care Needs (supported by the American Academy of
Pediatrics, American Academy of Family Physicians, American College
of Physicians, and American Society of Internal Medicine) recommends
having a transition plan in place by the time the adolescent is 14 years old
and to update this annually.276 Some young adults may be ready to begin
transition when they are 13 years old, whereas others may not be ready
until they are 16 or 17 years old. Thus, the transition plan must be
individualized.
Transition is a process that takes place over time, not as an event, such
as transferring medical care from 1 physician to another. Some authors
have proposed that transition should begin on the day of diagnosis. The
young adult and the family must be involved in the decision process, and
physicians and parents should be prepared to let go.277
As with other pediatric chronic disease populations, there are few
research studies to support 1 model of care over another for young adults
with DD as they transition from pediatric-oriented care to adult-oriented
care. Should there be a specific interdisciplinary transition program to
facilitate this process or should this process take place in the medical
home? With the momentum that is gaining with regard to the patient-
centered medical home, this may serve as the initial framework. There is
a role for interdisciplinary teams to assist the medical home team in this
process, but acquiring funding for such programs is difficult. Because
there are so many different disease entities that fall under the category of
DD, the medical home will need to start with the general framework for
transition and then individualize to meet the needs of the patient. In some
cases the medical home team will be treading on new territory and will
need to use consensus to develop the care plan that will most likely need
to be modified many times. Specific components of transition are outlined
in Table 30.
Challenges to Transition
Several barriers to successful transition have been identified (Table
31).276-283 Low expectations of individuals who have DD and their social
isolation may be the most important barrier. Low expectations could be
on the part of the family, the physicians, society, and finally, the patient.
By not developing a life plan (not illness) the individual is set up for a
life of dependency and not 1 for achieving their fullest potential.283
Specific areas that are a challenge to successful transition for individuals
DM, June 2010 363
TABLE 30. Main components of transition planning
Transfer of care from pediatricians/pediatric nurse practitioners/pediatric specialty
physicians to adult specialty and primary care physicians and midlevel providers
Access to continuous and uninterrupted health insurance coverage for primary and
specialty care needs once pediatric coverage terminates
Acquisition by the young individual of knowledge and skills necessary to independently
manage his or her daily treatment regimen
Learning to identify and advocate for accommodations needed to function more effectively
in the work or school environment
Referral to transition and adult community agencies and resources based on individual
needs for services
Table 33. Coordinator of the team or the clinic plays a critical role in the
overall implementation and smooth operation of the entire program
(Table 34).
The effectiveness of teams is largely dependent on how the profession-
als work with each other to meet the needs of their patients. Depending
on the setting, service delivery may occur in a shared place (a clinic) or
separate places but is coordinated. Team members are asked to conduct
diagnostic assessment, deliver medical care, or evaluate functional needs
of the patient (impact of illness or disorder on general health, vision,
DM, June 2010 367
hearing, mobility, cognition, mental health, social function, academic
function). The patients (or responsible caregivers) ability to access and
pay for health care services is also assessed. Each team member puts forth
his or her assessment data, with recommendations for interventions.
Clinicians who provide therapy generally deliver treatment and report
outcomes to the patient, the patients pertinent family members, and the
team. Members who evaluate functional impact are usually the members
who served on the assessment team. Some teams have members who can
provide all aspects of care and others have interchangeable members.
Three types of teams, namely multidisciplinary, interdisciplinary, and
transdisciplinary, are most frequently described in the literature.302-322
Conceptualization of Multiple Discipline Teams
Discipline. In standard English language dictionaries a discipline is
variously defined as a branch of knowledge, instruction, learning or
education, or a field of study or activity.323
Multiple Disciplinary. Choi and Pak suggest that the term multiple
disciplines (multiple disciplinary) should be used for a more general
situation when the level or nature of involvement and interaction of
multiple disciplines in a team are not clearly delineated.285
Unidisciplinary or Intradisciplinary. Satin refers to a unidisciplinary
team as team that comprises 2 or more professionals in the same
discipline with common skills, training, and language working toget-
her.324 Tremendous expansion of knowledge base in different disciplines
may necessitate professionals from the same discipline to share their
individual expertise within the discipline with others in the same field to
accomplish common goals. In that sense unidisciplinary teams are also
referred to as intradisciplinary teams.
Multidisciplinary. In a multidisciplinary team, each team member
completes his or her training-specific assessment, intervention, and
evaluation of the patient. Each team member draws on the skills and
knowledge from different disciplines but functions within the boundaries
of his or her discipline.285,305 The process is thus described as addi-
tive.285,305 Choi and Pak give 2 2 4 as a mathematical example, and
a salad bowl as a food example to illustrate the concept of multidiscipli-
narity.285 A multidisciplinary team is typically led by a physician who makes
the final decision about the patients care. In that sense it is hierarchical. The
term multiprofessional team is used more widely in some European countries
and Canada to describe a multidisciplinary team.
Interdisciplinary. Members in an interdisciplinary team share the
responsibility for making the ultimate decision about patients care. The
368 DM, June 2010
care plan is developed by the whole team and it is the entire teams
responsibility to follow-through on it. The assessment and care plan
reflect the integration of expertise from individual disciplines. It is more
of a group process. Each member of the team shares his or her expertise
with others and the team process is described as highly interactive. The
process allows the team to analyze, synthesize, and harmonize links
between disciplines into a coordinated whole.285,306 Choi and Pak
explain interdisciplinarity in mathematical example as 2 2 5, and in
food example, a melting pot.285
However, truly interdisciplinary teams are probably few and far
between, especially in a traditional medical facility. Interdisciplinary
teams probably seem ideal to most members because they may not feel
that their expertise is being undermined by 1 discipline. In some
Childrens Multiple Specialty Clinics the team is headed by a physician
with a specialty in the disorder treated by that clinic. These teams
typically coordinate their assessments and treatment. Sometimes the
professionals who actually provide the care also participate in the
assessment.
Transdisciplinary. Soskolne has defined transdisciplinary approaches to
human health as approaches that integrate the natural, social and health
sciences in a humanistic context, and in so doing transcend each of their
traditional boundaries.313 Members of a transdisciplinary team think
beyond their individual disciplines and work toward formulating a novel
solution or perspective to a given problem. Transdisciplinary approaches
often lead to the development of entirely new fields of study or
knowledge. Choi and Pak view the transdisciplinary approach as holistic
and illustrate the concept with a mathematical example of 2 2
yellow, and a food example of a cake.285 In a transdisciplinary team,
members share skills. There is an acceptance by the individual team
member that another team member can do a better job in an area of his or
her own expertise (role release).285,310 Team members also acquire new
skills and function beyond their discipline (role expansion).285,310 Appli-
cation of transdisciplinary team approach to delivering health care to
children and adolescents who have DD has not been reported.
Virtual or Electronic Teams. Widespread use of electronic communi-
cation has led to the development of virtual team processes.285,294,325-327
The individual team members can be geographically dispersed, but can
work as a team in an interactive, integrated manner toward a common
goal. Application and utility of such teamwork in the setting of health care
delivery to children and adolescents with DD remains to be established.
DM, June 2010 369
TABLE 35. Essential factors for developing and maintaining effective teams
Open and frequent communication between team members
Clearly defined team philosophy
A high degree of commitment to team process by its members
Autonomy for team members to function within the scope of their expertise
Ability of team members to effectively cope with the issues related to service delivery to their
patients (especially death and dying)
Mutual respect and trust between team members and for the team process itself
Effective coordination of workflow
Evolution of Teams
Teams may evolve naturally over time when many professionals from
different disciplines are involved in delivering health care to the same
patient, and begin sharing information. These types of teams are less
common and take a long time to establish. More commonly, a team
begins with a team leader who then carefully chooses members based on
their expertise, discipline, and ability to work in a team setting. The
evolution of multiple disciplinary approaches can also be viewed on a
continuum; however, more research is needed to explore the concept of
continuum of multiple disciplinarity.285,290,291,294
Developing Effective Teams
Research on multiple discipline teams confirms the overwhelming
importance of clarity, commitment, and close, positive exchanges be-
tween team members to promoting successful teamwork.284,296-301 Sev-
eral factors essential for developing and maintaining effective teams have
been described (Table 35).298,328-332 Teams that do not have clear goals,
tasks, role delegation, or strong commitment to the team process will be
ineffective. One set of researchers offers that the team leadership should
not be discipline-specific but should be dependent on the patients
presenting complaint as well as the ongoing management objectives.
Strategies to enhance multiple disciplinary teamwork and barriers to
effective team development are summarized in Table 36.328,333
Team Process Within the Context of a Medical Home
In March 2007, the American Academy of Family Physicians, Ameri-
can Academy of Pediatrics, American College of Physicians, and Amer-
ican Osteopathic Association formulated and issued a statement on Joint
Principles of the Patient-Centered Medical Home, further expanding the
original concept of medical home.334
The Joint Principles statement recommends that each patient have a
370 DM, June 2010
TABLE 36. Strategies to enhance multiple disciplinary teamwork, summarized in an acronym
TEAMWORK
Promoting the The 14 Cs of
Strategy Barring the Barriers
Promoters Teamwork
T Team Good selection of team Avoid poor selection of Coordination of
members the disciplines and efforts
Good team leaders team members Conflict
Maturity and flexibility of Avoid poor process of management
team members team functioning
E Enthusiasm Personal commitment of Avoid lack of proper Commitment
team members measures to
evaluate success of
interdisciplinary work
Avoid lack of
guidelines for
multiple authorship
in research
publications
A Accessibility Physical proximity of Avoid language Cohesiveness (team
team members The problems sticks together)
Internet and e-mail as Collaboration
a supporting platform
M Motivation Incentives Avoid insufficient time Contribution (feeling
for the project this is being
Avoid insufficient made)
funding for the
project
W Workplace Institutional support and Avoid institutional Corporate support
changes in the constraints
workplace
O Objectives A common goal and Avoid discipline Confronts problems
shared vision conflicts directly
R Role Clarity and rotation of Avoid team conflicts Cooperation
roles Consensus decision
making
Consistency
K Kinship Communication among Avoid lack of Communication
team members communication Caring
Constructive comments between disciplines Chemistry
among team Avoid unequal power (personality,
members among disciplines good fit)
(Adapted with permission from Choi BCK, Pak AWP. Multidisciplarity, interdisciplinarity, and
transdiciplinarity in health research, services, education and policy: 2. Promoters, barriers,
and strategies of enhancement. Clin Invest Med 2007;30(6):E224-32, Table 1, p. E230.)
Psychosocial Considerations
Youth with DD are subject to all the same developmental issues as
typically developing youth.345-352 However, the factors that cause them
distress may start earlier, last longer, or recycle more often than youth
without DD. Youth who have DD may experience more frequent
disruptions to their lives in multiple ways. Problems with parents,
siblings, guilt over using so many family resources, constant or recurrent
pain, frustration with a lack of independence or privacy, physical
exhaustion, or peer rejection can all contribute to making the adolescents
transition to adulthood and community resources very difficult.345-347
Youth who have visible disabilities may have to face teasing, stares, and
avoidance from others. Those with invisible disabilities may find that
their needs are not met or are minimized because others have to
constantly be reminded that the youth needs extra resources.348
Typical growth and development may be slowed or accelerated because
of the impact of his or her DD. Children and adolescents who are ill
expend a great deal of energy just surviving day to day and may not have
the opportunity to mature cognitively, socially, or emotionally. Youth
who develop DD during their maturation through infancy, childhood, or
adolescence may experience fear about the illness and not understand
why this is happening to them.
Emotions such as distress, anxiety, anger, and depression are often
experienced by youth as a part of the maturation process. Those emotions
may exacerbate with the onset, intensity, frequency, and duration of one
or more DD. It is important that physicians recognize the presence of
these emotions in youth who have DD and help them access appropriate
supports and services. It is important that youth understand they are not
alone and can learn techniques for coping with their problems.
DM, June 2010 373
Issues for Parents
Parents reactions to their DD youths problems are, of course, very
important to the overall psychologic health of the parents and their
youth.168,179,353 The birth of a baby can give parents considerable joy and
start them off on a journey of fantasy about the wonderful things their
child may do that will make the parents very proud and happy. It is a
normal desire on the part of parents to want to produce a perfect child1
that is the best at some or all the qualities these parents desire. Some
parents even live their lives and dreams through their children. Unfortu-
nately, children may not live up to such often unrealistic expectations.
Many parents learn to accept such a reality and learn to love their children
in a realistic manner, usually understanding that their children are simply
reflections of themselves, thus negating the potential of perfection.
Children with disabilities can be in this category as well, whether dealing
with a child with DS, mental retardation, chronic illness, or other.
Parents may mourn the loss of their perfect child when confronted
with a child with a DD. The sense of loss may be complicated as the child
spends more time away from home in school or other facilities and as they
enter into the adult world. Many adolescents with or without DD can
become moody and irritable with wide mood swings while developing
transient school problems, and even suicidal thoughts as they proceed
through adolescence. Youth may begin to question previously taught
moral, ethical, and religious views of parents as these youth seek to
understand concepts and perform tasks their way consistent with their
abilities. Much of this is normal adolescent behavior and parents can be
counseled what is normal and what is abnormal in these areas.
Some parents develop guilt over producing a disabled child and seek to
protect their child from lifes many potential difficulties and impasses.
Such overprotection can force these youth to become too dependent on
parents and not go through normal adolescent stages of emancipation and
identity formation.179 DD with or without chronic illness or physical
handicaps can limit the emancipation process in these youth and over-
protective parents can worsen this negative trend. It is especially difficult
for these parents to allow youth who do not adhere to treatment
recommendations normal or even any autonomy. The parent can be torn
between fears of injury and even death for their adolescent or even adult
child and the need to allow freedom and personal choice in various
matters. Parents may interpret their adolescents nonadherence with
medical recommendations as being irresponsible; convincing these par-
ents that autonomy is not a wise choice for their youth. Parents can even
374 DM, June 2010
consciously or unconsciously seek to prevent their youth from appropri-
ately growing up, especially if this is the last child in the home and the
parents have no other interests.
Psychologic Effects of Disability on Youth
Disability may constitute a major block to adolescent growth and
development by limiting the youths developing self-image and removing
or impacting a normal emancipation process into and throughout adult-
hood.168,170,354-357 The presence of DD or chronic illness may induce
major life changes that may impact sexuality development. Successful
maturation may be made more difficult by disability, impacting the
development of normal sexuality, and healthy sexual functioning.
Stresses produced by the youths attempts to negotiate sexual develop-
ment successfully may in turn exacerbate effects of the disability or
worsen the chronic illness that is present.
Rejection by peers because of being different can pose major hurdles
for some youth and even adults, especially those with DD.168 The youth
or adult with disability who has a poor self-image becomes easy prey for
peers seeking to criticize and taunt others to deflect damaging criticism on
them. Few if any can happily receive constant rejection or harsh criticism
from their peers. We are all in various groups as children, adolescents, or
adults. General acceptance by our own peers is vital to our own inner
stability. The adolescent or adult with DD may conclude that s/he does
not have access to this general acceptance.
As growth patterns begin to accelerate rapidly in adolescents, and as
body contours change dramatically with the development of secondary
sex characteristics, adolescents become preoccupied with body image
issues; they worry and wonder over the adequacy of this new body.
Adolescents with DD have the added burden of attempting to tolerate real
abnormalities and deviations from their idealized body image. Specific
problems encountered with youth who have DD involve lowered self-
esteem, unsatisfactory body image, and doubts involving future self-
sufficiency as well as the ability to reproduce and parent. Even adoles-
cents who have mild DD may have significant problems with identifying
consolidation, particularly if periodic or prolonged hospitalization and
medical care become necessary. Such paralysis of development can
continue over ones lifespan.
Effective Communication
Finally, speech, language, and cognitive limitations present special
challenges communicating with persons who have DD. It is important to
DM, June 2010 375
know how a person who has DD usually communicates his or her needs.
Questioning should always be directed to the patient at a developmentally
appropriate level. This should be done even for persons you consider
incapable of understanding or responding. Appropriate pause for re-
sponses should be allowed and then the questions redirected to the parents
or other caregivers. Such action may take a little more time but is worth
the rapport it may support with the patient and his or her family. The use
of open-ended questions and insistence (gently) that parents or caregivers
allow the patient to respond first to questions is good advice. Again this
is more time-consuming but begins the process of teaching health care
self-management skills.
Acknowledgments
The authors thank Kim Douglas for superb assistance in the preparation of this
manuscript and Sandra Howe and Marge Kars, Bronson Methodist Hospital Health
Sciences Library, for assistance with search and retrieval of articles and books. Some parts
of this monograph are based on the authors own previous work as follows: the section on
Sexuality and Gynecologic Care is adapted and revised with permission from: Greydanus
DE, Omar H. Sexuality and gynecologic care of adolescents with developmental
disabilities. Pediatr Clin North Am 2008;55(6):1315-35. The section on Concepts of
Multiple Discipline Team Care is partly adapted with permission from Patel DR, Pratt
HD, Patel ND. Team care and team processes. Pediatr Clin North Am 2008;55:1375-90.
Portions of the section on Medical Home and Transition Planning are extracted from
Burdo-Hartman, WA, Patel DR. Medical home and transition planning for children and
youth with special health care needs. Pediatr Clin North Am 2008;55:1287-98. Some
portions of Basic Concepts of Developmental Diagnosis are extracted from Patel DR. The
principles of developmental diagnosis. In: Greydanus DE, Feinberg AN, Patel DR,
Homnick D, editors. Pediatric Diagnostic Examination. New York: McGraw Hill, 2008.
p. 629. Portions of the section on Intellectual Disability are extracted from Patel DR,
Merrick J. Intellectual disability. In: Greydanus DE, Patel DR, Pratt HD, Calles JL Jr,
editors. Behavioral Pediatrics, 3rd ed. New York: Nova Press, 2009. p. 39-50.
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