Document developed for the National Council on Disability
by American Association of the Deaf-Blind
and Helen Keller National Center.
Individuals who are deaf-blind, regarded as “most significantly disabled” by state vocational rehabilitation agencies continue to face significant social, economic, educational and psychological barriers. The lack of available services and resources is often an obstacle to achieving self-sufficiency for individuals who are deaf-blind. Throughout the United States this low incidence diverse community remains unserved and under served, the impact on the individual and the service delivery system continues to be a challenge. We appreciate this opportunity to point out the many areas that continue to be barriers for people who have both a hearing AND a vision loss (deaf-blind).
Individuals who are deaf-blind make up a diverse group. The degrees and kinds of hearing and vision losses vary: hard of hearing and low vision, deaf and tunnel vision, hard of hearing and blind in addition to totally deaf-blind. The age of onset also varies from being born with both losses, born with one loss and experiencing the other loss at some point in their lives, or experiencing both losses due to aging, illness, or injury. Because of this variable in degrees, age of onset, and etiology, communication methods become diverse: American Sign Language (close up or tactile), assistive listening devices, Braille equipment. Moreover, deaf-blind people have diverse socioeconomic backgrounds, family support, and education.
Despite this diversity in the deaf-blind community, they all have the same needs: to lead productive and independent lives with equal access to the community where they live and work, the same as non-disabled people.
It is our firm belief that without specialized services for this population, barriers will continue to exist. Many individuals who are deaf-blind do not have the resources to self-advocate, nor have access to agencies. For many people who are deaf-blind throughout this country the opportunity to obtain or access educational, vocational, economic, social and political opportunities is denied or severely limited. Service providers often are at a loss on ‘how to’ appropriately serve this population and resources within the community are slim to none. Some service models have the unintended consequence of perpetuating the “learned helplessness” and dependency among the deaf-blind community members which reinforces the barriers that prevent this community from living a full, productive, satisfying and empowered life. The current trend to group all people with disabilities together, while helping the majority, tends to further hinder accessibility to this minority population.
Although deaf-blindness is considered a low incidence population during a presentation in Atlanta, 2005, William Sansing, MS State University provided the following statistics:
- NATIONAL TOTAL AND DUAL SENSORY LOSS: 2005/2010 AND BEYOND
- Total Sensory Loss 2005: 9.79 Million
- Total Sensory Loss 2010: 10.63 Million
- Dual Sensory Loss 2005: 1.134 Million
- Dual Sensory Loss 2010: 1.214 Million
Beyond 2010 the largest single age group will be people age 44-55, with an additional 26.4 million people “moving” into the 55 and above category. Assuming constant mortality and incidence rates, this will result in approximately 1.7 million people with hearing loss, 1.01 million vision loss, and 290,000 with dual sensory loss. (William Sansing — 2005-MSU)
It is predicted that by the year 2010, 1.214 million Americans will have both a vision and a hearing loss. How do we prepare our nation and local communities to be ready to meet the needs?
Below are listed the current barriers in our communities. This list was developed from feedback from consumers and professionals across the United States. It is believed to be comprehensive and the barriers identified exist to some degree in all communities. There are pockets of more accessible communities in the U.S. and we commend those communities, namely, Boston, DC, Seattle, Minneapolis-St. Paul. The difference is strong and effective advocacy efforts resulting local county and state funding that supports programs, along with a strong national program that provides leadership, and resources.
American Association of the Deaf-Blind, a national consumer organization of, for, and by people with dual hearing and vision loss, conducted a survey of deaf-blind consumers about the top needs in the deaf-blind community. Support service providers (SSPs) were identified as the #1 need.
At this time no coherent and consistent system exists for local, state, or national funding for SSP services. Only 28% of the states have any level of SSP services. If the future expansion of SSP services is to succeed, greater and more consistent funding resources must be identified and secured.
Excerpts from the SSP White Paper (available on www.aadb.org):
“A support service provider (SSP) can be any person, volunteer or professional, trained to act as a link between persons who are deaf-blind and their environment. They typically work with a single individual, and act as a guide and communication facilitator. They may be hearing, deaf, blind, or deaf-blind.”
The SSP serves as the eyes and ears of the person who is deaf-blind. There are two key components of an SSP’s function:
- 1) The SSP provides access to the community by making transportation available (by car, bus, or other conveyance), and serves as a human guide while walking.
- 2) The SSP relays visual and environmental information that may not be heard or seen by the person who is deaf-blind. This is done in the person’s preferred language and communication mode.
An important aspect of the relationship between the person who is deaf-blind and an SSP is that the former makes all decisions. The SSP can provide information to the individual to assist in considering options, but at no point should the SSP make choices and decisions. The professional SSP strives to be helpful but objective, supportive yet empowering, and sparing in expressing their personal preferences while providing services.”
Without SSP support, deaf-blind individuals are often stuck at home and isolated, leading to frustration and depression at not being able to communicate, access information, get out in the community, maintain employment and vote. It is no wonder that deaf-blind consumers listed SSPs as their number one need.
Deaf-blind people are not the only disability group that benefits from having SSPs. Senior citizens with good mind and motor function, but who are unable to drive would benefit from the support of SSPs to access their community. Hearing blind people appreciate people to guide them in unfamiliar places and describe what is happening around them, tasks that SSPs do for deaf-blind people.
The medical community does not typically have the sensitivity and awareness that ensures appropriate access to services by the deaf-blind community. When specialists with this knowledge and skills do exist they are few in number and are often not an option due to limitations in insurance coverage by the deaf-blind consumer.
Communication renders the deaf-blind person a passive recipient of medical service with limited or erroneous information regarding diagnosis and prognosis. Numerous accounts of personal experiences by deaf-blind people are shared whereby doctors erroneously declared “you are going to go blind someday” and this coupled with lack of supports and resources leads to personal tragedy and missed opportunities.
Qualified and trained interpreters with the skills and knowledge to work with the deaf-blind community are lacking. In addition, deaf-blind individuals must often rely on family members and friends for support and transportation to medical appointments. The provision of SSP services would enable a deaf-blind person to obtain needed services independently.
The barriers of communication lead to social isolation among the deaf-blind community and this factor can contribute the need for mental health services. There is a severe shortage of mental health practitioners who are trained in addressing the needs of the deaf-blind community.
- Other Barriers to Health Services:
- Lack of trained medical and mental health professionals with knowledge and skills to serve/work with individuals who are deaf-blind; also, those few medical or mental health professionals with this knowledge and skills are often out of deaf-blind people’s insurance network.
- Lack of trained Interpreters in Medical settings
- Lack of training for respite care and respite care providers for deaf-blind individuals
- Lack of support service providers — Support, guide to doctor’s, therapist’s office
- Deaf-blindness leads to Isolation-need for mental health support — lack of access to communication, lack of services to address mental health needs
- University programs — in Health fields - no attention to disability issues specific to deaf- blindness
- Increase of Veterans — dual hearing/vision loss needing medical and mental health care
- 15 states — reporting outbreaks of Congenital Rubella Syndrome
- Limitations of services in health system (limited doctors visits, knowledgeable doctors may not be in insurance network, hearing aids not covered by insurance, cost of hearing aids too high for many people to afford, audiology visits not covered by insurance except for testing)
- Increase in number and availability of qualified and trained professionals who can provide accurate cognitive, neuropsychological, personality and achievement tests to deaf-blind people.
- Specialists may have knowledge in blindness only, or deafness only; very few have thorough knowledge of both disabilities, or the unique needs of deaf-blind individuals.
The information and advancing of technology in society creates a gap of “the haves” and “the have nots.” Technology is a necessary link toward information and communication access, independence, access to community resources and maintaining a competitive edge in today’s employment market. There is a need for affordable adaptations to technology with consideration to the needs of individuals who are deaf-blind as well as qualified trainers and services.
- Other technology barriers:
- Lack of technology among individuals who are deaf-blind to ensure equal access to information, communication and various community environments in which they travel.
- Lack of funding available for assistive technology for children who are deaf-blind.
- High cost of adaptive technology (example: Braille displays for computers cost about $10,000).
- Companies are often not willing to develop new products that will benefit deaf-blind people due to the small population.
- Difficulty in servicing and repairing available technology
- Inadequate training available for deaf-blind individuals to gain much needed skills in adaptive technology
- Local, state agencies not accessible due to high cost of adaptive technology or interpreter services.
- Lack of training of adaptive technology professionals and tech support personnel at adaptive technology companies to work with deaf-blind consumers.
- Often technology is designed exclusively for people who are blind (auditory output only), or for those who are deaf (visual output only); few are designed with the needs of those who have both vision and hearing loss.
- Expensive access technology becomes outdated in five years or less.
- Most technological devices do not stand-alone; they need another device to accomplish their tasks; in addition, they are often not portable and not easy to use.
Attitudinal barriers/Low Expectations for Youth with Deaf-blindness (Petroff, 1999) found that one third of the parents of transition age deaf-blind youth did not think that their young adult was capable of employment. This is compounded by society’s attitudinal barriers which result in deaf blind people being frequently unemployed, underemployed and underpaid.
In addition there is a lack of qualified personnel to meet the educational and vocational training needs of individuals who are deaf-blind. In a recent survey performed by HKNC the greatest obstacle to employment identified by respondents was the lack of supported employment programs.
- Other employment barriers:
- Accessibility on the job
- No Technology — left behind — no information access and communication,
- Affecting independence and productivity
- Lack of Employment training opportunities
- Lack of qualified personnel on Vocational Rehabilitation programs
- Lack of Supported Employment Programs or customized employment programs
- Vocational Rehabilitation services are strained and often do not have the resources or funds to assist deaf-blind people to find jobs.
- Lack of employment opportunities for deaf-blind people who have pursued higher education and possess bachelors or master’s degrees.
- Lack of health care becomes disincentive to employment
- Lack of support from support service providers
- Lack of affordable housing near public transportation
- Inadequate housing options for deaf-blind senior citizens (including nursing homes and assisted living facilities)
- Lack of qualified personnel such as Rehabilitation teachers, Orientation and Mobility Specialists and Low Vision Specialists, advocates, interpreters to enable individuals to receive training to gain and maintain independence
- Lack of access to community services such as on-line banking
- Lack of and need for accessible currency.
- Deaf-blind people need to be able to travel on their own without being forced to fly with someone else or pay for the price of someone to travel with them.
- More restaurants and places of business need to provide large print and braille menus and other written documents.
- Limited funding is available for available support service provider programs, and these programs are also limited in scope.
- Few deaf-blind people are employed full time with health benefits
- Employment is barrier to getting insurance
- Medicare/Medicaid inadequate Coverage out of state is not available; hearing aids not covered by insurance at all, audiology visits not covered except for testing, technology needed for independence not covered by insurance.
- Insurance limitations (limited doctors visits, knowledgeable doctors may not be in insurance network)
- Difficulties for deaf-blind people in rural areas
- Difficulties for deaf-blind people in larger cities with suburbs because of lack of public transit between cities and outlying suburbs.
- Lack of training by qualified Orientation and Mobility instructors in order to access public transportation.
- Need more Orientation and Mobility instructors skilled in ASL
- Paratransit operators need to have TTY equipment and know how to use it.
- Taxi services can be very expensive for deaf-blind people, even with taxi discounts.
- Paratransit services are often limited.
- Self-determination skills not a priority in educating deaf-blind children
- Need for “accountability” in transition services for deaf-blind from HS to Employment/College
- Deaf-blind teens and young adults lack socialization, leadership skills education
- The severe lack of Support Service Providers (SSPs) results in a lack of access and therefore social isolation.
- Consumer organizations — difficult to bring together regularly for support and education , thus advocacy efforts are challenging. The internet is not accessible to all limiting virtual peer support and networking.
- Due to high cost of SSP support, AADB faces unique challenges for hosting regular national conferences. This national consumer organization is unable to foster a strong community and provide much needed and desired leadership to other state and local consumer organizations.
- Inadequate support for families with deaf-blind children
- Not enough trained personnel to work with deaf-blind children or their families.
- Inadequate support for families of individuals who become deaf-blind as adults.
- Lack of communication and access to information — on emergency shelters and evacuation plans
- Lack of training of first responders on how to interact with people who are deaf-blind (including use of such things as communication cards, etc.)
- 9-1-1 systems, especially in small towns and rural areas, having TTY equipment and knowing how to use it when seconds count.
- Lack of SSP services when someone needs to go to a shelter (communication, signing documents, etc.)
We believe the answer lies in more trained professionals in the community, a strong national leadership, resource development, and training for the population.
- The establishment of a consistent, nationally funded service delivery system providing SSP services to individuals who are deaf-blind so they may live and work in their community of choice.
- More training for individuals who are deaf-blind in independent living, technology, leadership, legislative advocacy, etc, preferably in partnership with American Association of the Deaf-Blind.
- More trained professionals in the community:
- Support Service Providers
- Technology teachers
- Communication instructors (tactile sign language, Braille)
- Employment — job developers, job coaches, job placement personnel
- Mental Health
- O & M instructors
- Deaf-Blind Specialists
- Community Services, i.e., Housing, Transportation, Banking, Recreation & Leisure programs, University Training Programs
- Agencies at the state level working together, preferably in partnership with Helen Keller National Center (HKNC).
- State agencies for the deaf and the blind working together to serve this vastly underserved community. HKNC does not have the financial resources/capacity to ensure service needs are met and barriers are transformed into opportunities.
- Adaptive technology professionals and tech support personnel at adaptive technology companies need basic training on how to work with the deaf-blind community, especially given that we are a diverse community with diverse methods of communication.
- Removal of income requirements for training and services due to extreme costs.
We thank the National Council on Disability for their consideration on including these trends and issues from the deaf-blind community in their document to the President. If we can be of further assistance, please feel free to contact the us: