When an infant or
young child is diagnosed with a disability, the family's lives are
changed forever. Confronting and living with the challenges brought
about by disability requires families to draw upon strengths within
themselves that they often did not think existed. Parents and
families have to adjust to a life different than they imagined. The
ability of the family to meet these challenges is determined, in
large part, by the support that is available from other immediate
family members, grandparents, relatives, friends and co-workers.
Equally important are the supports and services that the family and
child receive from the educational and other social service
agencies.
Disability is often apparent at birth. An infant is diagnosed,
usually by a physician, at the hospital. Some children are diagnosed
later after they fail to meet certain developmental milestones. For
example, during the first eight months of life, an infant should be
able to shake a rattle, make sounds, and kick a mobile. Failure to
meet these milestones
should alert a physician and parent to the need to investigate the
reasons why these milestones have not been met. Thanks to advances
in technology and greater understanding of disability, children with
disabilities are being identified during their very early years and
are able to get services much earlier in life.
Services for children with disabilities are now mandated from
birth to 21 under the Individuals with Disabilities Education Act
(IDEA). IDEA requires that families be involved with the planning,
development and implementation of services throughout a child's
life.
For infants and toddlers, IDEA requires that a state-designated
agency (varying from state to state, e.g., Department of Health,
Department of Education). This agency is responsible, along with the
family and other relevant professionals, for the development of an
Individualized Family Services Plan (IFSP). The services specified in this
plan most be provided in the child's natural environment. A
natural environment is defined as the home and community setting in
which children without disabilities participate. This would include
childcare centers.
A fact of life in the 21st century is the need for childcare for
children of all ages. The Americans with Disabilities Act gives the
opportunity to children with disabilities to be included in regular
childcare settings. Generally, children can no longer be excluded
from a childcare center solely on the basis of disability. Childcare
centers are required to make certain accommodations for children
with disabilities. Childcare
needs should be addressed on the child's IFSP.
Starting at age three, Individualized Education Programs (IEP)
are developed for children who previously had an IFSP. The
transition from the IFSP (infants and toddlers) to the IEP should
involve all individuals who were and will be involved in the child's
new program.
The IEP focuses on long term goals and objectives for educating
the child. Children with disabilities (including infants and
toddlers) are entitled to receive special education and related
services based on their individual needs, which are determined by an
assessment and evaluation. A multidisciplinary team that includes
the parents develops the IEP. If a child needs a related service
(e.g., occupational therapy, language therapy) to receive a free
appropriate public education, it must be provided at no cost to the
parents. Each state has at least one federally funded Parent Training and
Information Center (PTI). These centers are designed to provide
information and training to parents concerning their child's right
to a free appropriate public education. For more information on the
law, check the FAPE Web
site.
Because the goal of education is to prepare a child for a
productive adult life, IDEA requires that, at age 14, parents and
school personnel begin considering and implementing a course of
study that focuses on life after high school. At age 16, a school is
required, with parent and student input, to develop a
Individualized Transition Plan as part of the IEP. All state
agencies who will be providing services to the student after high
school are required by IDEA to be involved in the planning
process.
IDEA is a great law and offers opportunities for children with
disabilities to become productive members of society. However, it
involves a great deal of work by all parties (e.g., parents,
teachers, related services providers, administrators). Parents must
be committed to becoming educated about the law and how to make it
work. The resources are available to do that.
