Growing Step by Step: Multisensory Early Intervention for Deaf-blind Children

Project location: ITALY, Rome
Project start date: September 2014 - Project end date: September 2015
Project number: 2014-032
Beneficiary: Centro Assistenza per Bambini Sordi e Sordociechi Onlus (CABSS)

This project will provide specialized services and professionals that can meet the needs of families with children who are deaf-blind. Children who are deaf-blind  who attend early intervention programs at CABSS will acquire the information, skills, experiences, and language needed  during the first years of life to overcome social hardship of  isolation, not being able to obtain the information needed in the preferred learning channels,  the inability to attain valuable skills and concepts and not having the communication tools needed to  express their wants and needs.

Investing in the Early Intervention Programs at CABSS will ensure that each child  who is deaf-blind will receive the proper education and intervention required from the very first days of life.

Target group: Children who are Deaf-blind, 0-6 years of age.
Definition of Congenital Deaf-blindness: a child who is identified as congenitally deaf-blind and has a combined loss of vision and hearing (total or partial). This loss affects the child’s ability to access information, develop communication skills, interact with his/her environment and with others. Deaf-blindness also greatly affects the child’s ability to acquire skills, develop concepts and attain independence.
Statistics: Numerically speaking, it is estimated that at least 150,000 individuals in the European Community are Deaf-blind and 11,000 children deaf-blind in Italy.
Italian Law: The difficulties that are experienced by Italian deaf-blind children has been compounded and amplified by the lack of legislative recognition of deaf-blindness as a unique and specific disability.  In April, 2004, the Commissione Affari Sociali della Camera approved the bill on the "Written Declaration on the rights of deaf-blind people of the European Parliament” and on May 27, 2010, the Italian government recognized deaf-blindness as a unique disability. 
Problems:
Children:  Even though a law was passed recognizing Deaf-blindness as a unique disability, children, today, aged 0-6 do not attend early intervention programs. Moreover they are still considered either deaf or blind and not recognized as having different and unique needs.  Children who are deaf-blind in fact require specialized services and professionals who are able to acknowledge address to the issue of deaf-blindness. It has been shown that when a child is inserted into an intervention program early on in life, it positively affects his/her growth in all developmental areas such as cognition, emotions, social awareness, living skills, motor skills, communication and orientation and mobility. (McInness & Treffry,  1993; Watkins, S., Clark, T., Strong, C., Barringer, D., 1994).
There are no early intervention services for children who are deaf-blind from 0-6 years of age in Italy, CABSS is the first and the only organization to provide support and programs to this target age and population group.
Family: Families often lack support and are unprepared to address the complex needs of their child.  In fact, a child who is deaf blind communicates and may make contact with parents through body movements, gestures and vocalizations that can often be subtle and difficult to understand. This situation can produce feelings of helplessness in parents. (Janssen, M., Rødbroe, I., 2007).  Parents also needed assistance in accessing medical and educational resources and obtaining child care.
Attending an early intervention program specific to deaf blindness is crucial for parents. They are able to receive the necessary support, information and specialized strategies needed in order to understand and meet their child’s needs.  Parents are able to improve  their ability to identify, interpret, communicate and respond to their child which often  acts to solidify the parent-child bond. 

Method: The early intervention programs at CABSS are based on an innovative method, which was inspired by the Canadian Intervention model, Principles of Multisensory Therapy and stresses the importance of active parental involvement.
The method includes: visual, auditory, tactile, olfactory stimulation;  proprioceptive and vestibular stimulation; working on fine and gross motor skills; techniques that maximize the cognitive potential of each child; activities that favor the understanding of self, others and the environment; activities that promote the affective-emotional and relational skills in children. 
A huge emphasis is placed on communication and linguistic development.
CABSS encourages parents to be active participants in their child’s individualized program. Parents receive psycho-pedagogic support in order to learn and understand how their child communicates and acquires information. They gain a better understanding of what their child’s strengths are. They also learn specific techniques and communication methods that act to reinforce the parent-child bond.
For each child, the individualized program lasts for 3 years.
Activity 1: Family Questionnaire
Procedures and methodology: The first phase of the early intervention program at CABSS requires parents to fill out a questionnaire. The questionnaire created by the professionals at CABSS is aimed to gather information about the child’s medical history, development in various areas, and daily routine.
Activity 2: Interview with the family
Procedures and methodology: Once the questionnaire is completed and reviewed by the team at CABSS, an interview is done with the family. The staff at CABSS communicates to the family whether the child has been accepted and tells them more about the program and what is hoped to be achieved.
Activity 3: Assessment
Procedures and methodology: A functional assessment is done on the child who is deaf-blind when they first arrive. These assessments are completed within a month.

The assessment tools used at CABSS include the:
 
-         The Communication Matrix: An assessment tool created to identify how an individual is communicating and to provide a framework for determining communication goals.
-         The Van Dijk Approach to Assessment for Understanding Children and Youth with Sensory Impairments and Multiple Disabilities: A non-standardized and individualized approach to assess children with severe and multiple disabilities including combined vision and hearing loss.
Activity 4: Program Planning
Procedures and methodology: Programs are planned based on the results of the assessment but are individualized and specific to the child. The staff at CABSS modifies and adapts the program as needed.  Monthly individualized education plans outline  specific goals and are divided into separate developmental areas. 
Activity 5: Program Activation
Procedures and methodology: Once the monthly plan is completed, activities are then carried out in the multisensory laboratory. Children and parents attend sessions 2 to 3 times a week.  All sessions lasts for one hour: 50 minutes is dedicated to children and 10 minutes is dedicated to parents if they have to update staff on their child’s physical and medical condition or if they have any additional concerns or questions. At this time parents can also ask to book an appointment with the psychologist at CABSS to receive psycho-educational support.
Activity 6: Collaboration with professionals
Procedures and methodology: Once a month CABSS will meet with all professionals who work with the children who are deaf-blind  in other contexts (ie; rehabilitation centers, home) with the objective of teaching them specialized techniques, communication modalities and strategies they can utilize in the work they do with the child. This is important to ensure that what the child learns at CABSS is transferred and reinforced in all contexts outside the multisensory laboratory providing a holistic approach to intervention.
Activity 7: Monitoring
Procedures and methodology: Children will be assessed every 6 months. Parents and caregivers will be monitored on a continual basis to capture real-life competencies in everyday routines, develop their ability to reflect on their actions, evaluate the success of all intervention outcomes and develop effective strategies to be utilized in the future. Instruments that will be utilized to monitor include video recordings of the activities carried out with children and parents in the multisensory laboratory and completion of daily reports documented by the professionals at CABSS. 

This project received a grant from the Nando Peretti Foundation. The following people will benefit:
Deaf-blind Children
Children that are engaged in sensory experiences consistently over a span of 3 years at CABSS are able to utilize their residual senses, improve their ability to interact with others and their environment. They are able to communicate using their preferred communication form, improve their orientation and mobility skills. They show significant progress in their ability to attend and focus on stimuli. Progress is also made in the area of skill, conceptual and psychological development.
All of these skills and abilities are attained gradually over time, through the use of communication and multisensory tools, repetition, and the provision of activities that stimulate their motivation to explore, interact and communicate.
Family
As for parents, they usually have no previous experience in the area of deaf-blindness and when they receive the diagnosis of their child’s deaf-blindness they experience symptoms, similar to those found in the situations mourning. Our task is to use the appropriate coping strategies to support parents in reaching the “constructive action” stage where they are able to focus of the needs and strengths of their child, despite the emotions that deaf-blindness arouses in them.
We expect an increase in their feelings of competency in communicating, understanding and responding to child’s needs as a result of learning specialized communication methods and strategies. Moreover, parents will transfer the knowledge they gained at CABSS to their home environment and to others in the community. 
Professionals who work with the child in other contexts
CABSS expects that all professionals who work with children who are deaf-blind in other contexts will gain the ability to understand the needs and wants of each child who is deaf-blind and be able to interpret and respond to those needs.
CABSS will create a network of support for each child and his/her family by bringing together different professionals and significant figures in the child’s life.