Developmental
and Educational Resources
For far too many decades, society
treated developmental delays as an inevitable – and untreatable – part
of the disorder known as Down syndrome. Today we know that early, and persistent,
targeted interventions can make significant differences in the development of
youngsters with Down syndrome.
Millions of children in the United States are classified as disabled under the
Individuals with Disabilities Education Act (IDEA), a federal law that outlines
special services designed to meet the unique needs of children with disabilities.
These services are provided in two very different systems. The early intervention
system is responsible for services from the time the child is born until the
child’s third birthday. From age 3 through 22 years, the school system
is responsible for providing special education and related services. In order
to obtain needed resources for children with Down syndrome, nurses need a working
knowledge of these two systems.
Early intervention
system: Up until their third birthday, children are eligible for the
early intervention system if they are experiencing significant developmental
delays in one or more of the following domains:
- cognitive
- physical, including vision
and hearing
- communication
- social or emotional
- adaptive, including limitations
in self-help and leisure skills
Regardless of their developmental
status, babies and toddlers with Down syndrome qualify for the early intervention
system because they have a diagnosed disorder that puts them at high risk for
developmental delay. Each child’s services in the early intervention system
are outlined in a formal document known as the Individual Family Service Plan
(IFSP), developed jointly between the early intervention team members and the
child’s parents.
Instant
Feedback:
Infants with Down syndrome are
not eligible for the early intervention system until they demonstrate significant
delays in one or more domains.
Within the early intervention
system, infants and toddlers with Down syndrome can benefit from a wide variety
of services to address impairments in speech and language, oral motor function
and feeding, fine motor function, gross motor abilities, cognitive skills, and
social interactions. Many early intervention programs that serve babies with Down
syndrome provide a small, family-centered group setting for social interaction,
supplemented by individual therapy and a home visit component.
Typical personnel at an
early intervention program include:
- nurses, who provide an
overall health assessment of the youngster and coordinate health-related issues
for the developmental team
- infant development specialists,
who coordinate team efforts to meet the overall needs of the child and family
- occupational therapists,
who address such issues as oral-motor problems, feeding and nutrition, sensory
processing problems, and fine motor skills
- physical therapists,
who generally focus on gross motor skills as precursors to ambulation
- speech and language pathologists,
who may address oral-motor skills in addition to traditional expressive and
receptive language delays
Parent education and role
modeling are very important components of the early intervention system, since
most of the youngster’s development will take place in the home.
Instant
Feedback:
Because
babies with Down syndrome follow the same developmental sequence as typically-developing
infants, early intervention services are a waste of public funds.
School system:
When a child with Down syndrome turns three years old, he or she transitions from
the early intervention system to the school system. In theory, children must demonstrate
disabilities that affect their educational performance in order to qualify for
special education services. In practice, a diagnosis of Down syndrome virtually
ensures access to special education programs.
Under IDEA 97, children
with Down syndrome are entitled to the special education services that are needed
to allow them to benefit from the educational program. For example, occupational
therapy to improve the child’s grasp, may be provided because it will allow
the child to learn to write and therefore participate in educational activities
within the classroom. While there are a wide variety of special education services
available to children with Down syndrome, some of the more common ones include:
- resource teachers, who
are specially-certified to identify special needs of the child with Down syndrome
and make appropriate adjustments to the curriculum
- occupational therapists,
who often focus on handwriting skills and other classroom-centered fine motor
activities such as cutting
- speech and language pathologists,
who work with both expressive and receptive language functions
- adaptive physical education
teachers, who break down complicated PE activities into discrete steps that
can be learned one at a time by a child with motor disorders
Instant
Feedback:
Children
with Down syndrome are entitled to receive any special education services
that are beneficial to them.
State Services:
Over the past several decades, families of children with disabilities, including
Down syndrome, have advocated for family support policies and programs that go
beyond the basic services covered by IDEA. More than half of the states
currently provide additional family resources, in the form of cash, vouchers,
and/or service delivery models. The services typically developed through state
governments include the following:
- case management and service
coordination
- respite care, day care,
and other care services such as homemakers
- medically-related services
including therapy, nursing, medical care, and dental care
- assistive technology
- vehicle and home modifications
and other related services
- parent education, counseling,
crisis intervention, estate planning, transition planning
- personal services to
the child, including attendants, nutritional supplements, communication and
self-advocacy programs
Because state-funded services
vary greatly from state to state (and even from community to community within
any given state), nurses should take the time to familiarize themselves with
the state-funded services in their area, as well as the agencies responsible
for delivering these services.
Instant
Feedback:
Each
state is mandated by Federal law to provide a complete set of services
and
programs designed to meet the needs of children with Down syndrome.