The DeafBlind Problem
There is a serious need by a unique sub-group of Nebraska’s blind population, the DeafBlind; not lacking in ability, but in the deficit of access to information which normally would be gathered by sight and hearing.
People of all ages who have profound hearing and vision loss (often referred to as DeafBlind) are frequently marginalized and isolated. They often rely on family members and friends to support them when they need to go to a medical appointment, grocery shopping or attend other essential appointments. Rarely have those family members been formally trained and at times this support is not reliable. It is not surprising that the person who is DeafBlind may have feelings about infringing on their loved one’s time or grow to feel like a burden. These things all can lead to social isolation and complete dependence on others for even their most basic needs. Furthermore, health studies have documented how isolation leads to poor physical and mental health which will continue to deteriorate over time.
Numbers of Nebraskan who are DeafBlind
The Commission has been monitoring their data for a need to better serve the DeafBlind in Nebraska. Since the inception of the Commission’s current case management system in 2017, NCBVI have served 439 consumers who report both hearing and vision impairments, and currently (2023 fall) have 151 open cases with this dual diagnoses. NCBVI also has data to show that while 16.3% of Nebraskans 65 and older experience a hearing impairment, it jumps to 33% of visually impaired Nebraskans have a hearing impairment along with their blindness.
A Workable Solution
In late summer of 2023 Friends were asked to join a newly formed workgroup, Nebraska DeafBlind Interagency, to establish a workable program to assist Nebraska’s DeafBlind to have a more independent and quality life. The work group consists of: the Nebraska Commission for the Blind and Visually Impaired, Friends of NCBVI, the Nebraska Commission for the Deaf and Hard of Hearing, the Hellen Keller National Center, and Vancro Integrated Interpreting Services. Excitedly, we learned there is a tried-and-proven approach to make a positive outcome for all the players in relating to the issues facing the DeafBlind: the DeafBlind individual; their family; their community; and state government. Research within the USA revealed that there are at least forty service programs for the DeafBlind, ranging from a private city-wide, up to a state government-supported program. The states identified as worthy to emulate are: Missouri, Vermont, and New Mexico. What we feel will work here in Nebraska is a service group of trained Support Service Providers (SSP’s, skilled to meet the unique needs of the DeafBlind).
What is an SSP approach
The SSP is a trained professional who provides visual, social, and environmental information to a person with dual sensory vision and hearing loss. SSPs may serve in any number of capacities, including: assisting with activities of daily living (grocery shopping, mail reading, running errands); access to the environment; sighted guiding; and community involvement. Importantly, their support is to empower an individual by creating access for a person to make informed decisions. In turn it allows family members to be family members.
The SSP is NOT an interpreter, though communication assistance often occurs for short exchanges, but this assistance is limited. A certified interpreter of the DeafBlind is required to facilitate communication for important transactions such as the translation of a lease, a medical appointment, or the discussion prior to making a large purchase. Though an SSP, as is an interpreter, is required to maintain confidentiality for every assignment.
Who Administrates the SSP Service
In September 2023, NCBVI put together a request to start an SSP Program in five counties served by the Omaha office, and the State approved this contract be awarded to Vancro for two years. Vancro is a known and respected company of professionals serving the needs of the DeafBlind. They will take care of contracting with people to be SSPs, provide the training, and will coordinate the services. If this pilot program is deemed successful, we hope to advocate to the legislature to secure additional funding to provide this service long-term on a statewide basis. Initially, Friends will be helping with $10,000 for three years for this pilot project.
Further Resources to Learn About SSPs
Video Series on SSP by Hellen Keller National Center
A video overview of the SSP program run by Vancro in New Mexico