A Wide Spectrum of Scenarios Needs a Variety of Service Options

Authors: Vivecca Hartman, DBMAT President, Houston

Keywords: Family Wisdom, DeafBlind, Individualized Supports, Interveners, Service Support Providers

Abstract: This article explores how people who are DeafBlind access their education and learn about their communities with assistance from specific service providers.

What is it like to be DeafBlind? Well, that is a great question with a wide spectrum of responses based on individual scenarios. The constant amongst all individuals who are DeafBlind seems to be that DeafBlindness is a disability of access – access to visual and auditory information about people and things in the environment. Variations in the functional use of hearing and vision and other circumstances result in an array of services and support needed for each individual.

Parents of a new baby will experience shock with the realization that their child has a sensory impairment, let alone two. Very early on, these families and the professionals who work with the children need to make sure support and adaptations are available. This ensures that the student can access and take advantage of educational experiences. In this scenario, these strategies will continue to work into adulthood. Another scenario involves students who may have gone through their school years using their vision and hearing well enough to fully access educational experiences and then experienced changes in their vision or hearing later in life (i.e. near adulthood). This time of change can often be emotionally challenging for individuals who are DeafBlind and those who care about them. These are just two scenarios, but they are examples illustrating the wide variety of needs amongst our greater population of people who are DeafBlind.

On one end of the spectrum, babies who had an early onset of the dual sensory loss usually have trouble participating fully in their education. They will likely need an Intervener to support them while they are developing communication skills and learning enough life skills to make healthy choices. For example, an Intervener in the classroom can help the individual who is DeafBlind have access to clear and consistent visual and auditory information while developing their mode of communication in a reliable and trusted manner. The Intervener is also there to help support the individual who is DeafBlind with social and emotional well-being (i.e. making connection with friends on the playground and supporting the student when frustrated due to missing information).

A Community Intervener is doing much of the same access support to build independence and social communication skills, just in a different setting. This can be done by building upon routines within the home, learning to make choices, and actively participating in self-care and domestic activities, such as meal time. Access to the community helps an individual who is DeafBlind build confidence. By going out with a trusted Intervener who provides guidance and support, they can have access to their best mode of learning, which is typically more hands-on. A person who is DeafBlind often has difficulty accessing information incidentally, or by simply observing others. They learn best with opportunities to touch and feel in order to experience things first hand. This takes time and must be led by a person they can trust, who can communicate effectively in their preferred mode of communication, and who can provide the time it takes to access information tactually. Some people who are DeafBlind continue to need this kind of support from an intervener in their adult years.

On the other end of the spectrum, there are many adults who are DeafBlind whose educational experiences have resulted in the knowledge and self-determination skills required to build a high level of confidence, self-direction and independence. For example, they may have lost their vision and hearing after their educational years or late enough in their educational career that they had already developed a fully established mode of communication, including the ability to make healthy choices on their own. These individuals often desire to be active in their communities and productive members of society. However, they also need supports to enable them to access information and the environment. What is required from another person is information gathering and communication access in an unbiased manner at the direction of the individual who is DeafBlind. A Support Service Provider (SSP) can provide this support. An SSP can facilitate communication between the person who is DeafBlind and those around them, allowing them the opportunity to interact with others. In addition, the SSP can provide safe and efficient orientation and mobility when navigating the community. The SSP respects personal boundaries, the individual’s choices and their direction. The end goal is for the Deafblind individual to be able to enjoy life with greater independence.

With the opportunities a well-trained and effective Intervener provides during the educational years, my hope would be that a baby born on one end of the spectrum may get to the other end of the spectrum and only need the supports of an SSP into adulthood. Whatever the history and current situation may be, it is hoped that every person who is DeafBlind has access to the right support that meets their individual needs and goals.

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