Hanah International Foundation

Hanah International Project Plan March 2011

 

EMFIO (Early Measures for Family Intervention Orientation)

Main project actors:

• Buzau special school  (Romania) and  local parents
• Cernivci special school (Ukraine) and local parents
• The International Hanah Foundation (registered in The Netherlands)
• The Romanian Hanah network
• The  Ukraine Hanah network

Affiliated participants:

• Local healthcare
• Local social services
• Local authorities

Project mission:

Creating facilities for families with children with special communication needs by professional support in initiating, developing and applying the best strategy and framework in which to create together, as family and professional, the best chances for the individual child and to prevent isolation

 

Introduction:

 

Summary of the project:

Young children with special communication needs and their families are the subject of the project

The schools of Buzau and Cernivci develop a pilot program on Early intervention that enables the families to develop with their child the individually best opportunities in:

• Communication skills
• Social-emotional skills
• Cognitive skills

For that purpose the project develop centers  with adequate assessment-, intervention- and monitor-instruments to support the families and the individual children in:

• Maintaining a natural parents-child interaction and communication-routines in the family
• Providing the best instruments for the families to meet their individual needs for an optimal, age-related development of the child
• Developing  knowledge and skills that enable them to take actively part in the early development process which is supported by  professional  expertise
• Developing parent- and professional networks that can realize a sound early intervention Service.

 

Purpose of the project:

Changing the awareness and mentality of the Romanian and Ukrainian Society upon the ultimate development possibilities of children with special needs and the essential importance of the role of the family in this process.

 

The project bridges professionals and parents in order to combine their knowledge, responsibilities and to develop beliefs in the family’s and children’s capacities.

That way the joint activities in a to develop Early Intervention Centre offer the best chances for the individual child with special needs.

 

 

Motivation and Relevance of the project:

 

Challenges and needs:

Reasons for intervening early with an exceptional child:

• to enhance the child’s development,
• to provide support and assistance to the family,
• to maximize the child’s and family’s benefit to society.

The rate of human learning and development is most rapid in the preschool years. Timing of intervention becomes particularly important when a child runs the risk of missing an opportunity to learn during the most effective period. If not, a child may have difficulty learning a particular skill at a later time.

 

Early intervention services also have a significant impact on the parents and siblings of an infant with special needs. The family often feels disappointment, social isolation, added stress, frustration, and helplessness. The compounded stress of the presence of a special needs child may affect the family’s well-being and interfere with the child’s development. Families of handicapped children are found to experience increased instances of divorce and suicide, and the handicapped child is more likely to be abused than is a non-handicapped child. Early intervention can result in parents having improved attitudes about themselves and their child, improved information and skills for teaching their child, and more release time for leisure and employment.

A third reason for intervening early is that society will reap maximum benefits. The child’s increased developmental and educational gains and decreased dependence upon social institutions, the family’s increased ability to cope with the presence of an exceptional child, and perhaps the child’s increased eligibility for employment, all provide economic as well as social benefits.

 

Acceptance:

The recognition of the power of the children with special needs and the families they are in is the base of a multidisciplinary co-operation.

This co-operation has a positive effect on the integration of the children and the families in society

The integration enables a more complete development of the individual child.

A child functioning on its own level makes a more successful contribution to society

The contributions of professional structures to these processes are of great value for the policy development and decision making of the sector authorities in order to develop better functioning care- and education-systems

Good functioning care- and education systems contribute to a healthy national social-economical climate.

 

Short term outcome

 

Children:

facilities and services given to very young children with special needs,

1.                    “Zero to 3.” Services included special therapies (speech-, occupational- and physical therapy) provided either in an office or in the child’s home.

2.                    Special education Kindergarten and Preschool services

a.       Therapy

b.      Education

c.       Health services,

d.      Inclusion support in early childhood services,

3.                    Formal and informal family support

Parents:

Knowledge:

Information and about general and special child development and about specific special needs by:

• Individual Service Center contact
• Parent training and information programs
• Parent-to-parent networks
• Special needs website www.hanah-international-communication.org

Skills:

• Acting  as individuals and partners in the family education
• Offering the child with special needs the individual best chances
• Leaving brothers and sisters their sibling role
• Involving the grandparents active in the family with the special needs child
• Being able to instruct and monitor babysitters and other temporary caregivers
• Working together wit Professionals
• Addressing Financial Concerns
• Future planning

Networks:

• Support groups (such as Parent-to-Parent) for families of children with disabilities;
• Parent training and information programs organized by the Early Intervention Centers or Governmental Programs
• Parents Groups concerned with a specific needs, such as with Down Syndrome or Children with special needs in the Autistic Spectrum

Professionals:

Knowledge:

1.                    Theories of Early Intervention including specific basic knowledge about the young child development  area’s:

• Gross Motor Skills:
• Fine Motor Skills:
• Eating Skills:
• Communication Skills
• Speech- and Language skills:
• Cognitive Skills:
• Sensory skills:
• Social-Emotional Skills:
• Time-management skills:
• Self-autonomy skills:
• Learning skills

2.                    Aims of early intervention

3.                    Professional attitudes

Skills:

• Interpreting medical and psychological reporting
• Completing it to special development needs by using relevant test and observation models
• Developing individual education plans in a multidisciplinary setting
• Transferring  these processes and the results of it to parents / caregivers
• Monitoring and adapting the programs in practice

Instruments

• Tests, observation scales
• Individual Planning programs
• Monitoring programs
• Evaluation and reporting programs
• Standard routines on Parent participation
• Support inclusive institutions
• Professional networks

Resource Centers

Services

• Supporting early childhood intervention services work with childcare centers, preschools, family day care, occasional care centers and inclusive schools to support the inclusion of children with disabilities and/or developmental delays.
• Giving access to the professional support inclusive schools and services need to build their skills and do their job well
• Supporting child care services and mainstream schools to include all children including those with additional needs

Mainstream education

Knowledge and skills

• Theories of Early Intervention including specific basic knowledge about the young child development  area’s
• Developing individual education plans in a multidisciplinary setting
• Transfer these processes and the results of it to parents / caregivers
• Monitoring and adapting the programs in practice

Instruments

• Tests, observation scales
• Individual Planning programs
• Monitoring programs
• Evaluation and reporting programs
• Standard routines on
• Parent participation
• Support inclusive institutions
• Professional networks

Healthcare and social-care service centers

Structural consultation back and forth on

• assistive technology devices/services
• medical services, for diagnostic or evaluative purposes only
• audiology services
• nutrition counseling
• nursing
• physical therapy
• occupational therapy
• psychological services
• social work services
• speech-language pathology
• special instruction
• vision services
• health services necessary for a child to benefit from other early intervention services

Administration and authorities

• Pilot schools as source of knowledge and routines
• Parent networks as speaking partners

 

 

 

Long term outcome:

 

Civil Society

Target groups:

1. Children and Youth at risk

2. Families at risk

3. Care and educational services involved

Objectives:

Strengthened civil society

• development and enhanced contribution to social justice,
• democracy and sustainable development

Active citizenship

• Increased involvement of NGOs in policy and decision making processes with local, regional and national governments
• Cross-sectorial partnerships with government organizations at local, regional and / or national level

Democratic values, including  democratic and human rights

• Advocacy and watchdog role of parent organizations
• Networks and coalitions of NGOs
• Strengthened capacity of NGOs and an enabling environment for the involved coalitions as well for the entire sector
• Increased contribution to sustainable development
• Provision of welfare and basic services to the target groups
• Empowerment of vulnerable groups

Target groups:

1. Children and Youth at risk

2. Families at risk

3. Care and educational services involved

4. Schools for special education and schools with inclusive education.

Objectives:

Preventing isolation and improving  well-being of

a.       Children and young people at risk

b.      Families at risk

• Laws, policies and daily practice measures on children’s rights, as enshrined in relevant international instruments
• Improved quality of child welfare and education systems and protection measures  and a positive view of professional sectors  and society
• Effective and efficient measures addressing vulnerable groups of children and youth facing particular risks
• Measures to protect  children and youth  against violence, abuse and
• Policies and standards of intervention in the field early intervention, developed, implemented in view of  individual personal, social and educational development and protection and securing full rights and  opportunities for young children and their families
• Health and social care services provided to ensure equal access for children and youth

Target groups:

Regional and local authorities

Objectives:

1.       Improved inclusion of individual children

2.       Strengthened social and economic cohesion at national, regional and local levels

• Regional and local areas are cooperating in the fields of care and education services and innovation, to stimulate social and economic development of the risk groups
• Regional improvements in  job creation and  access to public services
• Local and regional authorities, as well as private and civil society networks, are developing initiatives to strengthen measures for groups vulnerable to social and economic exclusion
• Local and regional authorities are cooperating with private and civil society networks to strengthen participation in decision-making processes
• Local and regional authorities are developing and modernizing the public sector

 

The EMFIO  Early Intervention Project program

The definite results and effects expected

The practice of an Early, or childhood, Intervention offers support to infants and young children with developmental delays or disabilities, to their families and communities, in order to promote the child’s development and inclusion.

The adoption and  the general use of the following definitions

A developmental delay means: when a child does not achieve new skills within the expected age range.

A disability is a physical, sensory, intellectual or behavioral impairment which affects development.

The availability of Early Intervention services to children from birth to school entry and to their families. Early childhood intervention can include:

• therapy,
• education,
• health services,
• inclusion support in early childhood services,
• formal and informal family support,
• the provision of information and support for transition into school systems.

The practice of an Early intervention service performed by a multidisciplinary range of professionals –and trained volunteers-  including :

• special education teachers,
• physiotherapists,
• occupational therapists,
• speech pathologists,
• psychologists,
• social workers,
• doctors,
• nurses,
• orthoptists,
• audiologists,
• others, depending on the needs of the child and family.

Early intervention practitioners acknowledge the family as the most important influence in a child’s life. Any service to children can only be realized in the context of the family and is determined by the concerns and priorities of the family: family-centered practice.

Early intervention services may be delivered in a variety of places including: the family’s home, early childhood intervention centers, preschools, long day care centers or hospitals.

Early childhood intervention services work with childcare centers, preschools, family day care and occasional care centers to support the inclusion of children with disabilities and/or developmental delays.

In developing an IFSP (Individualized Family Service Plan), families, early childhood intervention services and mainstream children’s services work together to meet the child and family needs.  This may include consultation and/or visits to the child care setting by early childhood intervention specialists to provide information and ideas for including the child. Some children may require extra support to maximize their inclusion in the child care setting.

 

Structures

 

Relevant legislation and governmental demands

• The Salamanca statement and framework for action on Special Needs Education, 1994
• The HELIOS report on Rehabilitation and functional adaptation (1996)
• The HELIOS II report on Early Intervention (1996)
• White-book on Early Intervention (2000)
• Handbook on Early Intervention – FEAPS (2000)
• Handbook on Earlz Intervention of children with Blindness or Visual Deficiencies –ONCE (2001)
• Târgu-Mures Declaration (2005)
• Report of the UN Commission for Social Development (2011)

Program strategy

• Written information, instruction and learning materials.
• Instruction and training sessions
• Multinational lectures and presentations
• Discussion meetings
• Multimedia presentations via video, and web-based training opportunities
• Online information and contacts and distant learning sub-projects
• Video interaction training
• Refection and evaluation sessions.
• Presentations and conferences

 

Program objectives, activities  and indicators

Establishing Early Intervention Principles and Objectives

• Thinking of the child as the active subject of early intervention
• Developing active involvement of families
• Improving quality of life by :
• Equal opportunities
• Preventing risk factors
• Early detection and immediate referral
• Preventing secondary effects
• Helping child and family to find out new ways of adaptation
• Holistic approach

Promoting and encouraging development

• Giving support to the whole group
• Facilitating developmental progress, autonomy and socialization in overall contexts of life
• Providing the aids needed to facilitate accessibility or adaptive skills
• Facilitating smooth transitions to pre-primary and primary school

Good practice towards the Family

• Open-door policies that invite parents to talk  to administrators and service managers;
• Ongoing program evaluations, using multiple methods of information gathering (e.g.,
• Written evaluations, interviews, focus groups, exit interviews,
• A policy that acknowledges the importance of a good match between a service provider and each family and that allows for parent choice in assignments;
• A suggestion box or other avenues for submitting comments anonymously;
• Parent-to-parent support and/or parent group opportunities;
• Parent advisory board members;
• Ongoing availability of interpreter or translator services when needed;
• A designated contact person in the state-level system for parents to call when they are concerned about services or procedures; and
• Mediation services offered before a formal complaint is filed.

Good practice towards the community

• Early detection and intervention in neonatal services
• Special attention to the impact of diagnosis
• Promoting early detection at paediatric centres, pre-primary and primary schools, social services
• Promoting early detection and immediate referral of developmental disorders and risk
• situations
• Improving primary and specialised services collaborative work
• Coordination with health services
• Coordination with educational system
• Supporting school and individualised curriculum
• Coordination with social services
• Promoting community awareness and non-discriminatory social attitudes
• Promoting early detection at paediatric centres, pre-primary and primary schools, social services
• Promoting early detection and immediate referral of developmental disorders and risk
• situations
• Improving primary and specialised services collaborative work
• Coordination with health services
• Coordination with educational system
• Supporting school and individualised curriculum
• Coordination with social services
• Promoting community awareness and non-discriminatory social attitudes
• Ongoing training and supervision

Good practice with regard to the family

• Family involvement
• Attaching special importance to diagnostic information
• Protecting transition phases
• Giving support to mourning and bereavement processes
• Giving support to the process of taking on children
• Giving support to the process of personal adaptation
• Providing stability for upbringing practices
• Providing accurate information
• Being respectful with parents as primary decision-makers
• Working in partnership
• Encouraging self-esteem and sense of competence
• Delivering services in normalised, natural settings
• Delivering services nearby family dwelling
• Facilitating resources for the reorganisation of family routines
• Providing help in everyday situations by:
• Self-help groups
• Parents’ groups
• Parents’ schools
• Building up social relationships
• Cost-free services
• Providing resources, information and orientation on request

Good practice with regard to the child

• Spending life in normalised, natural settings
• Encouraging self-initiative
• Encouraging self-esteem
• Developing a language (verbal, non-verbal) to facilitate social relations
• Developmentally-appropriated intervention
• Providing stimulation in all areas of development
• Encouraging adaptive, functional skills
• Empowerment practices
• Supplying technical and educational aids
• Eliminating barriers
• Providing learning and autonomy-oriented experiences
• Integration into mainstream schools
• Providing therapeutical aids in natural settings
• Taking part in peer’s activities
• Protecting transitions phases
• Ensuring health condition and safe surroundings
• Living at dwelling
• Providing play and leisure opportunities
• “Case by case” work methodology
• Collecting and gathering information
• Joining assessment and intervention
• Dialogue parents-professionals
• Dialogue children-professionals
• Evaluating abilities and possibilities, not just deficits
• Inter and transdiciplinary assessment
• Interdisciplinary assessment of the child and his/her context of life
• Functional, syndromic, etiologic diagnosis
• Ongoing assessment
• Dealing with personal and family dynamics
• Drawing up individualised programmes
• Key worker or case coordinator
• Flexibility
• Setting targets and monitoring outcomes
• Unifying case records

Good practice with regard to the programme itself

• Guaranteeing confidentiality, privacy
• Systematisation, planning
• Evaluating teamwork performances
• Assessing teamwork dynamics
• Transferring knowledge among stakeholders
• Evaluating families’ satisfaction
• Self-evaluation practices
• Promoting EI training, in-service training, with particular attention to wide-ranging topics
• Encouraging cultural sensitivity
• Deep-rooting into contextual knowledge
• Staff stability
• Highly qualified staff with postgraduate training
• Preventing burn-out
• Encouraging “second generation” research Studying diagnostic effects, group dynamics …
• Evaluating early intervention outcomes
• Evaluating criterion-referenced tools
• Local, regional, national and international cooperation
• Cooperation between parents associations and expert groups
• Facilitating information regarding summative evaluation
• Elaborating indicators

 

Good practice in delivering services

• Creating Child Development and Early Intervention Centres (CDEIC)
• Developing Child Development and Early Intervention Centres networks
• Decentralising functions Improving collaborative work among local services
• Sectoring
• Cost-free services

 

Risks

Social instability makes that rules and regulations change, together with authorities that are appointed. Also some organizational structures might either disappear, or change. That triggers:

• Difficult communication with decision makers and other institutions and mainstream schools
• Discontinuity (replacement of substitute teachers or other people involved in EI center)
• Change of interests of parents/families
• Parent organization stops activity once the project ends
• Not enough monitoring of children who took part in EI program
• Situation (mainly legislative frameworks ) in the two schools differ too much, they do not have that much in common
• Expertise obtained stay too much inside the center, not spread elsewhere