International
Journal of Rehabilitation Research 16, 23-31 (1993)
Early
intervention for children with developmental disabilities: manifesto of the
Eurlyaid working party
J. M. H. DE
MOOR*, B. T. M. VAN WAESBERGHE,
J. B. L. HOSMAN, D. JAEKEN and S. MIEDEMA
Department of Special
Education, Catholic University, PO Box 9103, 6500 HD Nijmegen, The Netherlands
Eurlyaid is a working party
of the European Community (EC). It consists of experts and representatives of
parents' associations from the various member states involved in early
intervention for children who are disabled or at risk of developmental
disabilities. Starting from the growing recognition of the importance of early
identification and intervention Eurlyaid aims to contribute to the development
of a common EC policy and legislation. Here we describe a comprehensive
framework for early intervention, presented as a preliminary manifesto. First
of all the Manifesto gives a definition of key concepts, delineates the target
group and states the rationale behind, and the content, of early intervention.
Secondly, we present the conditions and demands necessary to attain the best
quality early intervention, and make a number of recommendations. With an EC
grant, Eurlyaid is able to continue its activities as part of ALEFPA-Europe, a
so-called non-governmental organization (NGO).
Frühe Intervention für Kinder mit
Entwicklungsbehinderungen
'Eurlyaid’
ist eine Arbeitsgruppe der Europäischen Gemeinschaft (EC). Sie besteht aus
Experten und Vertretern von Elternverbänden, die sich in den verschiedenen
Mitgliederstaaten mit der Früherziehung von Kindern, die behindert oder von
Behinderung bedroht sind, beschäftigen. Auf der Grundlage der zunehmenden
Anerkennung der Bedeutung früher Identifikation und Intervention setzt sich
`Eurlyaid' die Aufgabe, einen Beitrag zu leisten zur Entwicklung einer
gemeinsamen politischen Zielentwicklung und Gesetzgebung. Dieser Artikel
beschreibt einen umfassenden Rahmenplan für frühe Intervention, der als ein
vorläufiges Manifest zu verstehen ist. Als erstes gibt das Manifest eine
Definition von Schlüsselkonzepten, grenzt die Zielgruppe ein und beschreibt den
Begründungszusammenhang, durch den der Inhalt früher Intervention konstituiert
wird. Im weiteren zieht es daraus resultierende
Folgerungen, indem die Bedingungen und notwendigen Forderungen zur Erreichung
der besten Qualität der Früherziehung aufgezeigt und eine Reihe von
Empfehlungen gemacht werden. Mit der finanziellen Förderung durch die EC ist Eurlyaid in der Lage, seine Aktivitäten als ein
Teil von ALEFPA-Europa, eine sogenannte nicht von
Regierungen abhängigen Organisation (NGO), fortzuführen.
L'intervention précoce au profit d'enfants presentant des
handicaps du developpement.
‘Eurlyaid' travaille en association avec les Communautés
Européennes. Il est
constitué d'experts et de répresentants d'associations des diffčrents états membres préoccupés par l'intervention précoce au profit d'enfants présentant des
handicaps du développement ou
se trouvant dans des
situations de risque de les présenter.
Partant de la reconnaissance croissante
de l'importance du diagnositic
et de l'intervention précoes,
Eurlyaid a pour objectif de contribuer
au developpement d'une politique et d'une législation communes ŕ l'ensemble
des pays de la CE. L'articles décrit
un vaste cadre pour l'intervention précoce, base que se veut un manifeste préliminaire. Cette proclamation donne
tout d'abord la définition
des mots clés, détermine le groupe cible, décrit les base théoriques et le contenu de l'intervention precoce. Il conclue ensuite
par la présentation des conditions et des exigences necessaires ŕ l'obtention de la meilleure qualité d'intervention précoce en dégageant un grand nombre de recommandations. Avec l'aide de la CE, Eurlyaid pourra
continuer ses activités comme membre de L'ALEFPA-Europe, une
ONG ainsie dénommée.
* To whom correspondence should be addressed.
0342-5282 ©1993 Chapman & Hall
Intervención temprana para nińos con discapacidades
`Eurlyaid es el nombre de un grupo de la Comunidad Europea (CE). Esté
compuesto por expertos y representantes de asociaciones de padres de los diferentes
Estados Miembros, involucrados en la interventión temprana con los nińos con discapacidad
Keywords: early intervention; developmental disability; EC working party
Introduction
Eurlyaid was founded an the
initiative of Professor J. J. Detraux (Free
University of Brussels) and Mr H. Heinen,
director of Handicap Services for the German-speaking Community of Belgium.
This happened during the international conference, `The First Years: Children
Suffering from Brain Damage', held in
Thanks to an EC subsidy, the
working party met four times: in Bütgenbach (
The first phase of
Eurlyaid's work was concluded with the presentation of the Manifesto to Mr Wehrens, the most Senior EC
official in the field of care for the disabled. The continued existence of the
working party is also guaranteed as Eurlyaid was able to link up with
ALEFPA-Europe, a non-governmental organization (NGO) recognized by the European
Community. The Manifesto gives a definition of key concepts, delineates the
target group and states the rationale behind and the content of early
intervention. It concludes by laying down the conditions and demands necessary
to attain the best quality of early intervention, and makes a number of
provisional recommendations.
Definition of the key
concepts
Early intervention is
intended for all children who are subject to a developmental risk or
developmental disability. The aid covers the period between the moment of
prenatal diagnosis and the moment that the child reaches the age at which
school is compulsory. It includes the entire process from the earliest possible
identification and detection up to the moment of training and guidance.
Although at present we do not, strictly speaking, regard prenatal diagnosis as
an integral part of early intervention, its psychosocial consequences for the
parents do fall into that domain. In this Manifesto, we do not go further into
this matter. Firstly, we intend to define the concepts of development, developmental
risk, developmental disability and early intervention. We then propose to deal
with the various phases of early intervention.
The concepts of development,
developmental risk, developmental disability and early intervention
Development is a dynamic
process in which both the child and its environment participate, in which both
select the influence of the other and through which both evolve in a particular
direction. The consequence or implication of this for assessment and
intervention is that attention must not be focused exclusively an the child. The interaction between the child and his
parents or caregivers must constantly be born in mind, as must factors of the
family and the extended family.
Developmental
risk implies that there is evidence of an increased probability that a
disability may occur. Three types of risk factors can be distinguished which
are not mutually exclusive: (1) established risk in specific medically
diagnosed conditions or syndromes, such as Duchenne's
muscular dystrophy and Down's syndrome; (2) environmental risk, such as in
children in deprived environments which limit their ability to profit from
important learning experiences; and (3) biological risk an grounds of prenatal,
perinatal and neonatal factors, such as in cases of prematurity and
dysmaturity.
Developmental
disability means a significant deviation from the normally expected pattern of
development, which is experienced by the person and/or by their environment as
alarming. Such a disability may express itself in forms of retardation and/or
dysfunction of a physical, cognitive and emotional-affective nature. As a
result of our starting from the transaction model of development, a
developmental disability must also be regarded as a dynamic process in which a
lot of factors can play a part. Among these are differences in norms between
people, genders and cultures. Retardation in development may thus occasionally
be spontaneously removed or compensated for.
Early
intervention can be defined as all forms of child-oriented training activities and
parent-oriented guidance activities which are implemented in direct and
immediate consequence of the identification of the developmental condition.
Early intervention pertains to the child as well as to the parents, the family
and the broader network.
Phases
in the early intervention process
Early intervention for
children at risk or with developmental disabilities constitutes a process and
entails several phases. These phases are identification, detection, diagnosis,
training and guidance. Although these phases are listed here in their logical
order, in practice they intersect and merge with each other and are not clearly
to be distinguished. We propose to elaborate an the
phases mentioned.
Identification is the
observation of the first signs or signals suggesting that the development of a
child may be at risk or may be progressing atypically.
Detection is the
systematic search for such signs and signals in an entire population. This
includes screening programs such as for phenylketonuria (PKU) and congenital
hypothyroidism (CHT), for hearing impairments (e.g. the Ewing-test) and for
developmental disorders (e.g. Denver Developmental Screening Test). The outcome
is not a diagnosis. The children selected are referred for further diagnostic
examination.
Diagnosis consists of
finding a developmental disability, together with the suspected causes. The
diagnosis takes place in consequence of the identification of signs or signals
which may be considered as deviant or as a risk to development.
Training includes all
goal-directed activities affecting the child and his/her environment intended
to create more favorable conditions for development. It includes activities
like developmental stimulation, educational practices and adjunctive services
from professionals in medicine, occupational therapy, physical therapy, speech
therapy and audiology, and nutrition.
Guidance consists of all
specific forms of training and counseling offered to the parents, the family and
the extended family. Among other things it includes: (1) help in the
recognition and acceptance process and in the assistance concerning appropriate
responses to the child's behavior (parent-child interaction) (2) instruction
and advice relating to developmental activities, child-rearing practices and
therapy, and (3) the provision of information in general.
Target
group
The target group consists of
children below the age of compulsory education who are disabled or at risk for
developmental disabilities. A child is disabled when we can speak of a degree
of retardation and/or dysfunction in one or more of the following fields: (1)
gross motor development; (2) fine motor development; (3) sensory perception;
(4) cognition; (5) communication; and (6) adaptive behavior (social and
self-care skills). A development at risk occurs in:
(a) children
with specific physical disorders of an orthopedic or neurological nature;
(b) children
suffering from a chronic illness such as heart disease, CARA, epilepsy, cystic
fibrosis and rheumatism;
(c) high-risk
groups such as premature and dysmature children.
In these three categories
early intervention is only necessary if the physical condition really has
negative consequences for the children's development.
The
rationale behind early intervention
The arguments for early
intervention can relate to the child, the parents, the family and extended
family, and the society. We will now discuss these aspects.
Arguments
relating to the child
(1) Early intervention can
prevent risk factors in the child and/or his background from leading to
developmental delay and/or dysfunctions. This can be achieved by offering the
child the correct stimulation and interaction with his surroundings at an early
stage in his development. Empirical
research has demonstrated that this form of prevention is effective.
(2) Early intervention also
fulfils a remedial function. This is the case with children who already have a
degree of retardation. They can be enabled to catch up with a more normal rate
of development, or the degree of retardation can be prevented from increasing.
(3) Early intervention
reduces the side effects of chronic illnesses and permanent functional
impairments. An increased developmental delay as well as additional handicaps
can be prevented. What can also be obviated is undesirable behavior caused by
the handicap itself which can cause the handicapped child to become the cause
of serious disturbances within the family.
Arguments
relating to the parents
(1) Early intervention is an
effective way of helping parents to deal with their handicapped children. This
comes about by actively involving the parents in the intervention process so
that they can discover their own possibilities and capacities. Parent involvement
can be aimed at the needs of parents to become competent as quickly as possible
in caring routines, in skills for positioning, handling and treatment, and in
child rearing. Early intervention saves parents from the necessity of coping
with the emotional problems an their own, and it makes
a valuable contribution to the acceptance process. Early intervention reduces
or eliminates the incapacity of many parents to manage the child's problems,
improves the parent-child interaction, creates a more balanced emotional
relationship, and prevents undesirable child-rearing practices.
(2) Early intervention
prevents the parents from being deprived of information. This information can
relate to: (a) the diagnosis, the cause of the handicap, and the prognosis; (b)
knowledge about normal development and about how a retarded and/or disturbed
development needs to be stimulated; and (c) the social system of provisions
that are available to them.
Arguments
relating to family and extended family
(1) Early intervention can
prevent brothers and sisters from acquiring an unfavorable or disadvantageous
position within the family as a result of which their own development may be
hindered and behavioral problems may arise.
(2) Early intervention can
ensure that the family as a system and the family as a network (grandparents,
uncles and aunts) learn to adjust themselves to the situation of coping with a
handicapped child.
(3) Alleviation of the
burden to the family, among other things by offering family assistance, day care
and other facilities (for instance material support, adaptive equipment and
improvement of the housing conditions).
Arguments
relating to society
(1) Early intervention makes
society aware of the fact that there are also young children with developmental
disabilities who are part of the community and have a right to support. (2)
Early intervention enhances the opportunities of the children, since they go
through school more successfully. They are also less likely to draw an public funds because of delinquency, unemployment or
dependence an welfare. As the child grows older, the parents will seek less
guidance because they have learned early an that ways
exist for them to deal with their problems.
The content of early
intervention
Assessment
Assessment is a logical
consequence of the recognition of signs and signals regarded as deviant or at
risk in development. It is an in depth study of the child's development by one
or more experts and of his/her immediate surroundings (parents and family) made
an the basis of objective criteria. This implies that
there must also be an analysis of the social and pedagogical situation of the
child, and of the needs and strengths of the family. The assessment of the
child is not made according to the medical model but according to the
psychopedagogical model, in which the child's range of developmental skills and
deficiencies across multiple behavioral areas are described and analyzed, in
addition to the relevant factors in the family and the extended family. The
aims of assessment are: (1) to arrive at a broader evaluation of the child's
functioning; (2) the provision of information about the examination results and
a statement of expectations for the future, if possible; (3) to provide advice
an the nature and form of the intervention program, and (4) to draw up an
individualized service plan.
In its most extensive form,
assessment can entail the following examinations: (1) an inventory of the
family situation;
(2) a
general medical examination and if necessary an examination by specialists,
e.g. pediatrician, child neurologist, and specialists in genetics and/or
rehabilitation medicine; (3) a paramedical examination by one or more of the
following disciplines: physiotherapy, occupational therapy and speech therapy;
(4) a psychopedagogical
examination such as an investigation of the behavioral functions and the
personality development of the child, observation of behavior in free and
structured situations, an analysis of the pedagogical situation, and an
evaluation of the process of recognition and working through process of the
parents.
Training
/ guidance
The purpose of the training
of the child is the prevention and remediation of developmental delays and/or
dysfunctions, recognition of risk factors in the immediate environment of the
child, and the limiting of the consequences of illness and handicap. Treatment
consists of the following.
(1) Developmental training
activities. Programs in this field can vary in intensity, the degree of
structuring and the mode of execution (individually or in groups). Certain
programs restrict themselves to providing additional learning experiences
(developmental enrichment programs), while others aim at the training of
selected skills (e.g. cognitive-developmental programs and programs for
behavioral training). The setting of the program can range from the home
situation to regular or specialized day care. In addition to day care group
programs, it may be necessary for the child to receive individual therapy, for instance
play therapy.
(2) Medical, paramedical and
perimedical help. The medical assistance can be of a general or specialized
nature. By `paramedical help' we mean the assistance of the physiotherapist,
occupational therapist and speech therapist. Perimedical help, finally, is
provided by the dietician, the patient care worker or the nurse.
Guidance for parents is
geared to providing information relevant to the child's problems, coming to
terms with the child's disability emotionally (counseling), the
Guidance for families is
aimed at the aggravating circumstances. These can be of both a material and an
immaterial nature. Material assistance may consist of such matters as
improvement of the housing conditions and the securing of adaptive equipment
and providing for additional special needs. By immaterial assistance we mean,
for example, general or specialized social work and all forms of home help.
Conditions
and demands
Effective and efficient
early intervention should fulfill a number of requirements. We will discuss
these requirements based an the phases in the
intervention process. A distinction is made between (1) conditions relating to
identification and detection and (2) conditions relating to the process of
diagnosis, training and guidance.
CONDITIONS
RELATING TO IDENTIFICATION AND DETECTION
General
A program to
improve the identification attitude. This program must target
the improvement of professional skills and the enhancement of public awareness,
especially that of parents and care-givers. Improvement of professional skills
can be effected at the legislative and regulatory level, for instance the
stipulation of appointment requirements or training requirements, and at the
level of additional (in-service) training.
An adequate
system of detection. The detection system must be grounded an a national policy plan. The national policy plan must be
designed to enhance collaboration of the existing facilities, institutions and
professional groups an a regional level and form a
network for early detection of disabilities. Any gaps in the network must be
filled.
Workable
screening instruments like tests and observation methods. The tests need
to be reliable and valid and standardized both for the native and non-native
populations. The observation methods aimed at the behavior of the child should
include several strategies, such as event recording, time sampling, checklists
and rating scales.
Specific
The specific conditions,
aimed at the individual child and the parents, are that a conclusive and
watertight system must be available for the longitudinal examination of all
young children in the period before school is compulsory. This includes
periodic medical examination, the execution of screening programs and the
follow up of children at risk. The medical examination involves anamnesis
(aimed at, among other things, risk factors), observation and general check-up,
evaluation of growth curves, an examination of congenital malformations and of
psychomotor development, advising and registration. Examples of screening are
PKU and CHT examination, an auditory examination along the lines of
In addition, there must be
procedures for swift referral. This involves close cooperation between
institutions and professional groups engaged in identification and detection
and the groups conducting diagnosis and treatment.
Conditions
relating to diagnosis, training and guidance
General
Provisions must be available
for early diagnosis and corresponding treatment. These provisions need to be
within easy geographical reach, need to comply with the various demands made
upon them, and need to have access to teams of sufficient professional
expertise. Since the requirements of child and parents may differ greatly, a
degree of variation in the mode of intervention is necessary: home help,
ambulant help, all sorts of day Gare
and intramural care, including admission to a general hospital or a specialized
institute.
The financing of assessment,
training and guidance must be regulated by law, so that financial
considerations can never be an obstacle to securing adequate assistance. Trained staff. The demands made of staff include the
following: (1) they must have knowledge in normal and atypical development and
understand how developmental processes in young children proceed and can be
accounted for; (2) they must have experience in carrying out specific training
programs (like educational and therapeutic programs); (3) they must be prepared
to work with other professionals in teams; and (4) they must possess expertise
in the guidance of parents (giving advice and instruction and counseling).
Curricula for the various
target groups must be available. A curriculum functions in the first place as a
guide for the person directly engaged in the treatment. It contains a
systematic whole of objectives and concrete activities. Depending an the vision an how children learn and develop, a
curriculum can be based an the milestones of normal development, the cognitive
development theory and the applied behavioral analysis.
Parent
participation. Parents should be involved as partners in decision-making
concerning their child. For this it is essential that they receive the
necessary information and skills.
Specific
For each child the
intervention activities must always consist of three stages: the assessment of
the child and the family, the construction of an individual plan of action, and
the evaluation of the plan of action after a certain period of time:
Assessment is directed
towards both the child and the family. The assessment of the child is a total
evaluation of the unique developmental needs and strengths. The assessment of
the family involves mapping out (1) the needs and the concerns of the parents,
(2) the emotional strengths of the family, (3) family characteristics, and (4)
critical events;
An
individual plan of action for the child and the family must be drawn up
as soon as possible and carried out following the results of the assessment;
Evaluation is carried out
after a predetermined period of training the effects of the individual plan of
action must be assessed. The data provided by this assessment constitute the
necessary feedback for the revision of the individualized service plan.
General
(1) It is essential that
children with developmental disabilities receive help at an early stage. This
has an important preventive value for the child himself, for the parents and
for Early intervention the family. At all
times parents have the right to decide whether or not they will accept the help
that is offered.
(2) It is therefore of great
importance that in consequence to this preliminary EC Manifesto a more
definitive Manifesto be drawn up for all Member States which lays down the
minimum conditions to be satisfied by early intervention. This definitive
Manifesto must also be based an the Convention of the
Rights of the Child which was decreed in the General Assembly of the United
Nations an 20 November 1989 and in which the rights of the parents are also
stipulated.
Per
member state
(3) It is desirable that the
government of each
(4) It is therefore also
that each
(5) Early recognition of developmental
disabilities requires an adequate system of detection.
(6) This system can only
function efficiently if the facilities, professional organizations and
individual practitioners cooperate and form a network at regional or local
levels.
(7) Specific conditions for
early recognition are: a program aimed at stimulating and improving the
attitude to early identification, adequate assessment strategies and
techniques, procedures for swift referral and consultation possibilities.
(8) The diagnostic assessment
must be aimed at the entire child in all his aspects, including his family and
extended family.
(9) A plan of action must be
set up for each child individually and subsequently evaluated at fixed times.
This plan of action is also geared to the parents, the family and the broader
network.
(10) Parents must be
actively involved in all phases of the intervention process.
(11) The authorities must
provide the financial resources needed for scientific research for the
advancement and development of early intervention.
(12) It is advisable to make
a study of the ethical aspects of early intervention in relation to the rights
of the child, the parents and those who are professionally involved.
(13) There should be one
single information and documentation centre for all EC countries so that
knowledge, expertise and experience can be collected in and disseminated from
one central point.
(14) A commission of experts
must be appointed to further promote the interest of early intervention in all
the Member States. This commission may also serve as think tank for the
authorities.
(15) The harmonization
throughout the EC of training requirements for those engaged in early
intervention is necessary.
(16) Possibilities must be
created within an EC framework for the exchange of professional expertise.