The Facts

Who are the DeafBlind?

Some people are DeafBlind from birth. Others may be born deaf or hard- of- hearing and be come blind or visually impaired later in life; or the opposite may be the case. Still others may experience a prolonged deaf- blind—that is, they are born with both sight and hearing but lose some or all of these senses because of an accident or illness. DeafBlindness is often accompanied by additional disabilities. Causes such as maternal rubella can also affect the heart and the brain. There are also some genetic syndromes or brain injuries that can cause DeafBlindness which may also cause intellectual disabilities and/or physical disabilities.

"Legally, individuals are called “DeafBlind” if they have “such severe communication and other developmental and learning needs that the persons cannot be appropriately educated in special education programs solely for children and youth with hearing impairments, visual impairments or severe disabilities, without supplementary assistance to address their educational needs due to these dual, concurrent disabilities”  (1990, IDEA, Sec. 622).

How do DeafBlind people communicate?

DeafBlind people use many different ways to communicate. They use sign language (depending on their visual field), tactile sign language, tracking, tactile finger-spelling, print on palm, Braille, speech, and speech reading. The communication methods vary with each person, depending on the causes of their combined vision and hearing loss, their background, and their education level.

Mental Health Awareness in Deaf and DeafBlind Communities

Suicide and self-harm are major problems worldwide. In the general population, mental illness is a major risk factor for suicide . Deaf and DeafBlind individuals suffer higher rates of mental health problems than hearing individuals. Recent reports from the UK Department of Health and non-governmental organisations also reveal increased difficulties for deaf people in accessing mental health and social care services. These factors may put deaf individuals at greater risk of suicide than the general population.

Individuals with disabilities encounter practical and social problems beyond those experienced by nondisabled individuals and sometimes being DeafBlind can in turn increase the risk of developing mental health problems in both children and adults.

The apparent continued under-identification and referral to state and multi-state DeafBlind programs of very young infants and children remains an important issue. Infants and toddlers benefit greatly from having access to expertise in deaf-blindness. They require appropriate services that address the impacts of dual sensory impairments. Further, parents and families of these infants and toddlers can benefit from supports established within states. Without such early identification and referral to state and multi-state deaf-blind programs, access to needed services and supports is compromised.  This is why organizations like Sight Hearing Encouragement Program and others like it are so important to the the DeafBlind.

The results can clearly point to a need for focusing more attention on the mental health, resources and access to education to the marginalized communities of deaf children and adults. Society must be made aware of the special risks that deaf children and adults encounter with respect to mental health and related areas.

Major Causes of DeafBlindness

• Ushers Syndrome

• Down Syndrome

• Cerebral Palsy

• Trisomy 13

Assistance for the DeafBlind

Since the 1980s the term "support service provider" (SSP) was used to define individuals, that operated as a communication facilitator. A support service provider is any person, volunteer or professional, trained that acts as a bridge between individuals who are deaf blind and their environment.

Financing support service provider training and other direct services requires money. At this time, no orderly and rational system exists for local, state, or national funding streams. Only 28% of the states have any level of SSP services. (See Chart 2) These varied programs are as different as the states where they are provided (Jordan, 2005). Funding sources can include donations, grants, private foundations such as the United Way and unique fundraising events. Many programs receive funding from arrangements between diverse state departments.
 

Currently, as of 2016, there are 29 states that have some type of SSP program in place for the DeafBlind. That still leaves 21 states in the U.S. that don’t offer any bridge to help close that gap for the DeafBlind and their environment. For a list of those programs and their state click here. Note: File is in PDF format.

Summary

Though DeafBlindness shows many unique challenges to both those who have visual and hearing impairments and to their caregivers and friends, these trials are by no means unbeatable.  There are many individuals who are DeafBlind that have achieved a quality of life that is outstanding.

References

• National Consortium on DeafBlindness. Retrieved July, 2010, from http://nationaldb.org/index.php

• Watson, D., and Taff-Watson, M., eds. (1993). A Model Service Delivery System for Persons Who Are DeafBlind, second edition. Fayetteville: University of Arkansas.

• Education.com,. An Internet resource available at: https://www.education.com/reference/article/individuals-disabilities-education-act/

• Jordan, B. (2005). Active Support service provider (SSP) programs. Retrieved May 5, 2006, from http://www.hknc.org/images/FieldServicesSSPprograms.htm

• (2016). Retrieved from https://com-psychiatry-deafblind.sites.medinfo.ufl.edu/files/2012/08/SSP-programs-2016-LG-compiled-by-HKNC.pdf.

• Employment Statistics for People with Dual Sensory Impairments. (2017). Retrieved from https://www.blind.msstate.edu/docs/DeafBlindDataAnalysisUPDATED2018-06-05.pdf.