Congenital Deafblindness

Early Intervention

Early Intervention services for children who are deafblind maximises the potential for growth and development, and support families and carers. To do this, a partnership is developed between the child, the family and other support networks and professionals.

Early intervention services delivered to families and/or carers of children who are deafblind can:

  • Improve both developmental, social, and educational gains
  • Reduce feelings of isolation, stress and frustration that families may experience
  • Help alleviate and reduce behaviours of concern by using positive behaviour strategies and interventions
  • Help children with deafblindness disabilities grow up to become productive, independent individuals
  • Reduce the future costs of special education, rehabilitation and health care needs

(Reference: http://www.brighttots.com/early_intervention.html)

Early Intervention for a congenitally Deafblind child may include:-

  • Assistive technology devices and services – equipment and services that are used to improve or maintain the abilities of children living with deafblindness enable them to participate in such activities as playing, communication, eating or moving.
  • Audiology – identifies and provides services for children with hearing loss.
  • Deafblind Education Team – provides specialised and highly individualised communication and education support to students, their families and schools.
  • Family training – services provided by qualified personnel to assist the family in understanding the special needs of the child who is deafblind and in promoting the child’s development.
  • Medical services –are comprehensively provided separate to an Early Intervention Service, but may be also included as part of the service for diagnostic or evaluation purposes.
  • Nursing services – assessment of health status of the child for the purpose of providing nursing care, provision of nursing care to prevent health problems, restore and improve functioning, and promote optimal health and development. This may include administering medications, treatments, and other procedures prescribed by licensed physician.
  • Nutrition/Dietetics services – services that help address the nutritional needs of children that have feeding problems, improve food habits and preferences, recommend diets for specific medical conditions and prescribes tube feeding formulas when nutritional intake is not adequate or possible by mouth.
  • Occupational therapy – services help caregivers to develop the child’s highest attainable level of participation in all daily activities. OTs provide support to children who are deafblind and their families in the following areas: fine motor skills (hand function), activities of daily living (e.g. dressing, feeding), perceptual/cognitive skills (e.g., design copying and sequencing), sensory-motor skills (e.g., motor planning and tactile sensitivity), functional play skills, specialised equipment and environmental modifications (e.g., splinting, assistive devices, technology and home modifications), and posture control to support function.
  • l-awscntmlocbzfpkfPhysiotherapy – services that focus on the identification and promotion of optimal movement development. PTs provide support in the areas of neuromuscular, musculoskeletal, cardiovascular, respiratory functioning, and posture control. They also introduce active lifestyle techniques in order to promote the child’s highest attainable level of participation, provide and assist in the use of splints, braces, prosthetic devices, and other equipment to improve positioning, function and mobility.

Photo courtesy of: Maddie Garvue (http://www.caringbridge.org/visit/maddiegarvue)

  • Psychological services – administering and interpreting psychological tests and information about a child’s behaviour and child and family conditions related to learning, mental health and development as well as planning services including counselling, consultation, parent training, and education programs.
  • Social Work services – preparing an assessment of the social and emotional strengths and needs of a child and family, and providing individual or group services such as counselling or family training.
  • Speech pathology – services that focus on verbal and non-verbal communication skill development and the oral motor skills required for drinking and eating. They provide support in the areas of language understanding and use, social communication use (e.g. greeting people and playing with peers), speech clarity (ability to produce and combine speech sounds and use the voice), facial expression, body language and gestures, alternative or augmentative communication (e.g. sign language, picture symbols and verbal output devices), fluency, pre-literacy skills, and swallowing and feeding issues.
  • Vision services – identification of children with visual disorders or delays, and providing services and training to those children.

Best results from Early Intervention Services can be achieved through:-

  • Understanding the families who are deafblind
  • Performing functional needs assessment through a routines-based interview
  • Transdisciplinary service delivery through the use of a primary service provider(see below)
  • Support-based home visits through the parent consultation
  • Collaborative consultation to child care or family day care through individualised intervention within routines
  • Providing services in environments where the child spends his/her time

Robin McWilliam (McWilliam, R. A. Routines-based early intervention. Baltimore: Brookes Publishing Co. 2010;  McWilliam, R. A. “The primary-service-provider model for home- and community-based services”. Psicologia 17: 115–135. 2003)

A key feature of early childhood intervention is the transdisciplinary model, in which staff members discuss and work on goals even when they are outside their discipline: “In a transdisciplinary team the roles are not fixed. Decisions are made by professionals collaborating at a primary level.” (Pagliano, P.J. Multisensory Environment. David Fulton Publishers, London, 1999).

In accordance with the World Health Organisation International Classification of Functioning, Disability and Health (2001), therapy services strive to:

  • Emphasise children’s strengths by focusing on their participation in multiple environments
  • Assist children to participate in their communities by identifying and removing environmental and personal barriers, increasing facilitators in their environments, and enhancing their competence at the personal level
  • Focus on social inclusion and participation, which may assist in changing attitudes towards children who are deafblind. http://www.mcf.gov.bc.ca/spec_needs/pdf/ei_therapy_guidelines.pdf