Recognize Deafblindness as a single disability: Open Your Eyes and Ears
Introduction
Deafblindness is a unique disability, which requires a unique approach to support and a unique system to deliver that support.
At the Twelfth World Conference in Portugal (1999), Deafblind International (DBI), agreed to pass a resolution to appeal to governments around the world to use the following definition: “Deafblindness is a combination of visual impairment and hearing impairment.” Recognition for a common definition should be included in legislation and acknowledge the particular needs of individuals who are deafblind.
DeafBlind Ontario Services calls for official recognition of deafblindness as a distinct disability with equal rights and opportunities for individuals living with deafblindness in Canada. The organization advocates for: provision of appropriate lifelong supports of Intervenor Services; collection of data on the incidence of the distinct disability of deafblindness; recognition of the profession of Intervenor Services (starting with inclusion in the National Occupational Codes classification system); and, accessible environments to ensure that individuals with deafblindness lead a quality life and have every opportunity to fulfill their potential and enjoy independence.
Understanding Deafblindness
Deafblindness is a distinct disability. It is defined as a combined loss of hearing and vision to such an extent that neither the hearing nor vision can be used as a means of accessing information to participate and be included in the community.
Individuals who are living with deafblindness do not belong to a homogenous group. Each person will experience their own specific degree of vision and hearing loss that will affect their individual access to information, communication and mobility. The two main types of deafblindness are acquired deafblindness and congenital deafblindness.
Acquired deafblindness is a description applied to people who experience both vision and hearing loss later in life. Losses may occur at separate times or may occur simultaneously. They may also be progressive.
Congenital deafblindness is a description applied to people who are born with both hearing and visual loss or who became deafblind before developing symbolic language.
In addition, persons who are deafblind may live with other co-occurring disabilities, such as a physical and/or cognitive disability. This can further create barriers for the individual in accessing supports and services, as well as restrict their access to full participation in their communities.
The condition of deafblindness is not well recognised or distinguished from other disabilities. Although the term ‘deafblindness’ leaves little room for misunderstanding, many people are unaware of the causes of deafblindness, the variation of impairment that may be experienced and the impact of deafblindness on everyday life. ‘Deafblindness’ does not refer only to profound blindness and deafness; it refers to any degree of dual-sensory impairment.
With an increased number of seniors losing their sight and hearing or experiencing “dual sensory loss,” this changing demographic will require training from service providers to help them adapt to the realities of their changing world.
Disabilities and Deafblindness in the Canadian Legal Landscape:
The legal framework in Canada provides a standard to support people who are living with disabilities to ensure they have full and equal access to areas such as employment, education, health and justice.
As Canadians, we value the right to an inclusive and diverse society. The Canadian Human Rights Act extends the laws of Canada within the Federal sphere to uphold the principle that “all individuals should have an opportunity equal with other individuals to make for themselves the lives that they are able and wish to have and to have their needs accommodated…without being hindered in or prevented from doing so by discriminatory practices based on…disability.”
This principle continues to be at the forefront of the Canadian political system. Human rights legislation across all provinces and territories in Canada has similar visions, rights and obligations.
International
United Nations Convention on the Rights of Persons with Disabilities
Canada and 159 other member states signed, and 168 members’ states ratified the convention at the United Nations. Canada ratified this treaty in March 2010. The treaty aims to eradicate discrimination against persons with disabilities in all areas of life including employment, education, health services, transportation and access to justice.
The OP-CRPD is one of the communications mechanisms of the UN treaty bodies. The Optional Protocol (OP-CRPD) to the Convention on the Rights of Persons with Disabilities (CRPD) allows for individual complaints to be submitted to the CRPD Committee by individuals and groups of individuals, or by a third party on behalf of individuals and groups of individuals, alleging that their rights have been violated under the CRPD.
Federal
Despite the efforts by the Canadian government to identify disability issues as a priority, a National Disabilities Act does not currently exist and this issue has been a matter of public debate to a greater or lesser degree for three decades.
The Government of Canada has committed to adopting a strong federal accessibility law to remove and prevent barriers people with disabilities face.
The new accessibility law will cover areas that are under the jurisdiction of the federal government. This includes: railways, airlines, banks, postal services, radio, television, telephone and internet providers, Employment Insurance (EI), immigration, Aboriginal lands and rights, the military and criminal law.
This new law will not address areas that are under the jurisdiction of the provinces. This includes: health care, education, municipal transportation, guardianship and property rights.
DeafBlind Ontario Services is participating and facilitating consultation and engaging disability stakeholders in Canada to contribute to the development of federal accessibility legislation.
Provincial
Accessibility for Ontarians with Disabilities Act, 2005
Passed unanimously in the Ontario Legislature, this Act commits the Government of Ontario to create, implement, and enforce standards of accessibility with respect to goods, services, facilities, accommodation, employment, buildings, structures and premises for the 15%(2005) of Ontarians living with disabilities. A similar Act exists in Manitoba (2013). The Nova Scotia legislature introduced an Act Respecting Accessibility (currently at Second Reading as of November 3, 2016), making it the third province in Canada to introduce an accessibility act.
Ontario Human Rights Code
Ontario’s Human Rights Code explicitly states that everyone has the right to be free from discrimination. The Ontario Human Rights Commission’s Policy on Ableism and Discrimination based on Disability outlines details and gives practical measures for workplaces, public transit, health and education services, restaurants, shops, and housing to provide Ontarians with disabilities equal treatment and barrier-free access. The Code prohibits discrimination based on someone’s disability in all aspects of the employment relationship. Discrimination in employment may occur when a person experiences negative treatment or impact because of their disability. Discrimination does not have to be intentional. A person’s disability needs to be only one factor in the treatment they receive for discrimination to have taken place. The Code provides that organizations (e.g. employers, service providers, and vocational associations, including unions) have a duty to accommodate disability, and other grounds, short of undue hardship, based on cost, health and safety.
Ministry of Community and Social Services Act, Ontario
The Ministry of Community and Social Services (MCSS) Intervenor Services Program was established in 1981 under Section 12 of the Ministry of Community Social Services Act which defines the mandate and scope of MCSS activity. The ministry funds non-profit organizations to provide Intervenor Services to individuals who are deafblind. These services enable people to communicate and participate in a variety of settings, such as medical, mental health, social services, employment, educational, legal, and government services.
In Ontario, 20 organizations receive funding to provide Intervenor Services, including: the Canadian Hearing Society, the Canadian National Institute for the Blind, the Canadian Deafblind Association – Ontario, DeafBlind Ontario Services and the Canadian Helen Keller Center.
Deafblindness – a Unique Disability in Canadian Context
Deafblind Awareness Month
On December 21, 2000, the Legislative Assembly of Ontario, proclaimed June as Deaf-blind Awareness Month.
On June 26, 2015, the Canadian Senate passed a motion to recognize June as National Deafblind Awareness Month across the country. The intent of this motion was to help “to promote public awareness of deaf-blind issues and to recognize the contribution of Canadians who are deaf-blind.” It additionally would “recognize the strength, courage and dedication that deaf-blind people show every day in living their lives and facing their daily challenges.” June is also the birth month of Helen Keller, an internationally recognized person who lived with deafblindness.
In keeping with Article 31 on Statistics and Data Collection of the United Nations Convention on Rights of Persons with Disabilities (UN-CRPD), Employment and Social Development Canada launched the New Disability Data Strategy. They gathered disability data to achieve greater consistency in disability identification by type, and to improve coverage of the full range of disability types, especially mental/psychological, learning and memory disabilities. Sensory disabilities – seeing and hearing is collected along with other co-occurring disabilities. It is recommended that standardised data be collected relating to rights for individuals who are deafblind, along with opportunities and services available in each province to help assess and compare differences and developments.
Access to Communication Support and Training
Because of the unique nature of deafblindness, communication is a significant and essential issue for a person who may require support to learn and develop communication. For an individual who is deafblind, communication support and development needs to be a specific focus of service provision. Every person who is deafblind has the capacity for communication. A lack of training in communication methods can greatly restrict individuals who are deafblind from opportunities for a full and active life. Even if training is available, it does not mean that individuals have the opportunity to communicate more widely, since this may depend on the availability of adequate Intervener Services.
Assistive Devices
Assistive Devices refers to any item, piece of equipment or product system that is used to increase, maintain and improve functional capabilities of individuals with disabilities. This can range from simple equipment or assistive devices (such as magnifiers) to integrated systems such as environmental controls (computerised systems for home automation tasks such as answering phone calls, answering door, turning lights off, smoke alarms).
Access to Healthcare
General practitioners are positioned to be a central point of access for healthcare and are usually the gateway to further medical support for persons who are deafblind. However, if the condition of deafblindness is not widely understood, it is unlikely that healthcare professionals will connect the wide-reaching effects associated to the complex conditions that cause deafblindness. Evidence from a 2013 Usher Syndrome survey carried out by Sense in England indicates that people who are deafblind often have to explain their condition to their family physician, as well as the progression of the condition and the types of issues they face in everyday life. Additional time and energy is required of the individual who is deafblind and misunderstandings can develop, especially if they see a different doctor each visit.
Access to Services
Canadians living with deafblindness have inconsistent access to supports and services across the country, whereby each province or territory has a varying degree of funding available to provide services for persons who are deafblind. A 2016 review of the services and supports available to individuals who are deafblind in Canada found that inconsistent and limited pockets of funding were available in Ontario, Alberta, part of British Columbia, Nova Scotia and New Brunswick. To further complicate the situation, most of the funding is limited to a specific number of hours per week or focussed on supporting individuals in specific tasks, such as employment supports.
A limited number of resources to support essential daily communication supports for this vulnerable population in a recognized G8 country is unacceptable. It also serves to defy the spirit of existing legislation and regulations that protect the rights of all Canadians. The Canadian Charter of Rights and Freedoms guarantees that regardless of race, national or ethnic origin, colour, religion, sex, age, or mental or physical disability, “every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination.”
These limits on access to supports and services for individuals living with deafblindness also contradict the CRPD’s “overarching principle promoted by the United Nations Convention on the Rights of Persons with Disabilities…that services be provided in the community, not in segregated settings,” and that “person-centred services are preferable, so that individuals are involved in decisions about the support they receive and have maximum control over their lives.
“Exclusion of individuals from the opportunities, freedoms, networks, events and resources of the society in which they live has a negative impact on that society and its economic prosperity” Individuals who are deafblind deserve the basic right to have access to a barrier free society which includes opportunities to communicate and interact within their communities on an equal level to opportunities enjoyed by their peers.
Recommendations:
We have a commitment to uphold the UN Convention on Rights of Persons with Disabilities and promote, protect and ensure the full and equal enjoyment of all human rights and their fundamental freedoms for individuals with deafblindness. Canada needs to recognize that the value and effectiveness of an accessible environment by trained, experienced professionals will achieve the most successful outcomes for individuals who are deafblind.
Official legal recognition of deafblindness as a unique and single disability is imperative; it is essential that individuals who are deafblind have their needs and experiences recognised and considered in disability legislation and policy.
A Common Framework and standardised census questions for the Canadian Disability Survey must be established to collect standardised data on the number of individuals with vision and hearing loss; so that the extent of deafblindness is understood and captured. It is important that deafblindness is most common amongst older people is recognized and that a focus on early detection and support be provided to help prevent more serious health issues in this population.
All individuals with deafblindness must be offered the same opportunities regardless of where in the country and in which municipality they live. They must have access to competent and adequate support to ensure that they do not experience discrimination and have their rights respected on an equal level to that of their peers.
All individuals who are deafblind must be offered equal opportunities to realize their full potential regardless of age, residual vision and hearing, geographic location and any additional impairment.
Individuals who are deafblind are doubly challenged for physical accessibility as they cannot rely on visual or auditory cues for information. They must be supported with specialized services to acquire knowledge and information, express requests and make choices.
Glossary
Intervenor Services
Intervenor services provide the person who is deafblind with accurate information in an appropriate manner to enable them to make choices, plan future actions, communicate successfully, navigate their environment and achieve as much independence as possible. Intervenor services are responsive to the changing needs of the person who is deafblind.
Intervenor
“An intervenor…facilitates the interaction of the person who is deafblind with other people and the environment. The intervenor provides information about the environment and what is happening (using receptive language), assists the individual who is deafblind to communicate (using expressive language), provides or develops concepts where necessary, confirms actions, assists with life skills and most importantly, assists the individual to achieve as much independence as possible within their situation. The intervenor takes direction from the individual who is deafblind.”
Langue des signes québécoise (LSQ)/Quebec Sign Language
LSQ is a visual language with its own grammar and syntax, distinct from French, used by Deaf people primarily in Quebec and other French Canadian communities. sign language used in Canada and most LSQ users are located in Quebec. LSQ is a combination of American Sign Language and French Sign Language.
Large Print
This helps people who have low vision. Large print materials should be prepared with a font (print) size that is 16 to 20 points or larger.
Methods of Communication
- Adapted American Sign Language (AASL)
- American Sign Language (ASL)
- Braille
- Fingerspelling
- Gestures
- Langue des Signes Québéquoise (LSQ)
- Large print notes
- Oral
- Other, as determined by the individual who is deafblind
- Print on Palm
- Signing Exact English (SEE)
- Tangible Symbols, including object cues and picture cues
- Two-hand Manual
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