Being DeafBlind means having both vision and hearing loss. This can happen for different reasons —including hereditary disorders, such as Usher syndrome and Charge syndrome, or other conditions, such as microcephaly or meningitis.
Each person’s experience with DeafBlindness is different — it can happen at any age and range from mild to severe. Probably history’s most recognized and notable DeafBlind person is Helen Keller, who became an author and activist, and whose memorable relationship with Anne Sullivan was celebrated and made famous by the stage play and film, The Miracle Worker.
Deafblindness presents its own unique challenges for individuals, but it does not mean a person is unable to live and function successfully and claim their own autonomy. There are adaptive and assistive technologies, services, and programs available to give DeafBlind individuals a range of opportunities to thrive in purposeful, everyday lives.
The Benefits of Support Service Providers (SSPs)
One important type of assistance for DeafBlind people comes fromSupport Service Providers (SSPs). You may see this term interchangeable with other terms, such as Access Person or CoNavigator (CN), but essentially it is a specially trained professional who provides assistive services where needed.
These assistive services can include:
Facilitating access to communication and information — reading restaurant menus or assisting with work or social functions
Acting as a human guide — escorting a person to and from a meeting room or office
Traveling — accompanying DeafBlind individuals to appointments and helping with unfamiliar or crowded environments
Michelle Yook, a San Jose Community Empowerment Specialist with the Deaf Counseling Advocacy and Referral Agency (DCARA), asserts that SSPs “do not make decisions for the person but empower the DeafBlind individual to navigate life independently.” Support Service Providers (SSPs) can be beneficial toward giving DeafBlind individuals their self-worth and prevent isolation or even depression.
The Role of Support Service Providers (SSPs)
It is important to note that Support Service Providers (SSPs) fulfill a very specific role as part of their support of DeafBlind individuals, primarily with mobility and communication. They are not a replacement for other professionals, such as a doctor or personal care aide.
Based on a focus group of DeafBlind participants, the American Association of the DeafBlind advises that some areas where SSPs should not be asked to and are not allowed to help with include:
• Providing personal care routines, such as bathing and grooming
• Teaching or instructing
• Running errands for the individual
• Interpreting personal, medical, or business decisions
How Do You Obtain Support Service Providers (SSPs)?
If you want to find or learn more about Support Service Providers (SSPs), what’s available to you will depend on where you live and what kind of help you need. One of the best resources to seek out information about SSPs is through your local state agencies, such as Vocational Rehabilitation, a public program that is available to help people with disabilities find support services and job placements, among other things.
You, a loved one, or a friend will likely need to do some initial research to find out how to apply for Support Service Providers (SPPs) in your state.
For example:
The Commonwealth of Pennsylvania details on its official website how to make an appointment with Step Up Services, LLC and apply to receive SSP services. Citizens must be 18 years old and meet eligibility requirements. The website provides frequently asked questions to help clarify anything before you apply.
In Wisconsin, there is the Wisconsin DeafBlind Technical Assistance project, where parents and caregivers can find support, services, and strategies for their DeafBlind children.
Challenges with Support Service Providers (SSPs)
While Support Service Providers (SSPs) are meant to be a long-term assistance for DeafBlind individuals, Michelle Yook does caution that the availability of SSPs could be limited due to funding challenges or restricted capacity in certain state programs.
Support Service Provider (SSP) programs differ from state to state, so while one state may have more vigorous programs and trained SSPs, other states may be disadvantaged by having little to no SSPs available. Unfortunately, this creates a systemic problem of unbalanced accessibility for the DeafBlind community as a whole across the country.
Here are a few common barriers that may affect individuals who are seeking or are in need of SSPs:
• Limited availability of programs
• Individuals living in rural areas with inadequate access
• Short supply of trained SSPs
More Resources
Doing a bit of research can be key to finding out where and how you can receive the benefits of Support Service Providers (SSPs). Here are some quick links to additional organizations and websites where you can learn more in-depth about Support Service Providers (SSPs) as well as other services and programs that are available for DeafBlind individuals:
Helen Keller Services — offers a 3-part video series with an all-encompassing introduction outlining the role and responsibilities of Support Service Providers (SSPs) as well as a Tool Kit
Video series: https://learn.helenkeller.org/course/view.php?id=143
SSP Tool Kit: https://learn.helenkeller.org/course/view.php?id=93
The National Center on Deafblindness — a network that provides current information, initiatives, and events in support of DeafBlind children and youth from ages birth to 21-years-old
Battle for Blindness — offers a guide for finding and selecting assistive technologies to help empower independent living
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Additional Information
The content provided in this article is for informational purposes only and is not intended as a substitute for legal, medical, or other professional advice. While we strive to provide accurate and up-to-date resources, some information may become outdated or incomplete. Always consult with your provider about personal medical concerns.
