Medical Information
on Neurodevelopmental Disorders (M.I.N.D.)
"Medical Information
on Neurodevelopmental Disorders"
was created in order to provide to physicians, and other interested parties,
information regarding medical problems which are known to occur frequently
in adults with severe "medically-complex" developmental disabilities.
The site is produced and maintained by the medical staff of the Hunterdon
Developmental Center, in Clinton NJ
The Concepts of "Neurodevelopmental
Disorder" vs. "Developmental Disability"
It is important to distinquish
the concept of developmental disability
from that of neurodevelopmental disorder.
"Developmental disability"
refers to "childhood-onset" (i.e. before the age of 22 years
in NJ) "disabilty" ( i.e. persistant/permanent substantial
functional limitation) secondary to dysfunction/disease of the central
nervous system. This disability is often associated with mental retardation,
seizures, cerebral palsy, or abnormal behaviors, either singly or in combination.
The person with a developmental disability, because of the persistant substantial
functional limitation, becomes eligible for a variety of government services
which provide education, vocational support, recreational programs, and
residential opportunities. Forty years ago these services were centralized
in large state run facilities; however, today most people with developmental
disabilities receive them from various community-based provider agencies.
On the other hand there has been difficulty "mainstreaming" medical
services as effectively as has been the case with the other services. Difficulty
mainstreaming medical care appears to be in part related to the fact that
physicians are not well-trained or experienced when it comes to the health
conditions frequently encountered in adults with severe developmental disabilities
(see below). It also appears to be related to the fact that, for the most
part, physicians play only a small role in designing service policy, since
policy tends to emphasize educational, vocational, recreational and residential
services and supports, rather than medical concerns. This "social"
paradigm is certainly appropriate for those individuals who have milder
forms of developmental disabilities. Unfortunately, individuals with developmental
disabilities who are medically fragile or complex and who therefore require
a greater emphasis on medical services, often find that community-based
medical professionals lack critical experience regarding their specific
health needs. Some states (e.g. NJ and California) have recently undertaken
initiatives designed to correct this problem. These initiatives include
the creation of collaborations between Medical Schools (where research
is generated and physician training occurs) with Human Services agencies
(where responsibility for service resides).
"Neurodevelopmental disorder" refers
to the specific medical disease or condition that causes the developmental
disability in the first place (e.g. Down Syndrome, PKU, William's Syndrome,
Perinatal hypoxia/ischemia). Neurodevelopmental disorders can be either
"genetic" or "acquired"(see below). It is important
for the physician to establish the precise etiology/syndrome of the neurodevelopmental
disorder because knowing the exact cause then directs the physician towards
syndrome-associated conditions that will need to be evaluated and monitored
(e.g. thyroid dysfunction in Down Syndrome). Regardless of the exact cause,
most people with neurodevelopmental disorders will have one or more of
four "general" complications, namely: cognitive disability, neuromotor
dysfunction, seizures, or abnormal behaviors. The purpose of this site
is education regarding neurodevelopmental disorders, their precise diagnosis,
and management of their complications. The issue of "disability"
(i.e. the functional limitation) that results from the neurodevelopmental
disorder, its social ramifications and its multidisciplinary management,
while not being the primary focus of this site should nonetheless always
be considered by the health care professional who is charged with the responsibility
of providing services to an individual with a neurodevelopmental disorder.
A classification of neurodevelopmental
disorders (click
here )
Evaluation and Management of the Frequently Occuring
Medical Conditions (click
here )
Developmental Medicine Reviews & Reports: Special
Topics ( click
here )