Recognising deafblindness as a separate and distinct disability is a vital first step in ensuring that people get the services and supports they need.
We are asking the Irish government to:
- Adopt the EU Written Declaration 1/2004. This declaration was signed by Irish MEP’s in 2004. The declaration recognises deafblindness as a distinct disability and states that people who are deafblind should have the same rights as all other EU citizens and that these should be enforced by appropriate legislation in each member state and should include the right to receive one-to-one support from communicators and intervenors where appropriate
- Develop guidelines for the care and support of children and adults who are deafblind , similar to those published in the UK: In the UK and other countries, local authorities are required to identify, make contact with and keep a record of all the people who are deafblind in their catchment area; ensure assessment of needs for care by a person or team that has specific training and expertise relating to people who are deafblind; ensure services are appropriate and that there is a director-level member of the local authority senior team who has overall responsibility for deafblind services.
OFFICIAL RECOGNITION OF DEAFBLINDNESS IN IRELAND IS THE FIRST STEP TO ENSURING:
- Improved understanding of the condition
- A national programme for diagnosing children and adults who are deafblind
- Early intervention services and specific services for children
- Support for people who are deafblind to communicate their health needs and receive medical attention faster and more effectively
- Awareness and training for health professionals in the area of deafblindness
- The needs of people who are deafblind being included in future service design and development
- That health and social care sectors are required to record data on gender, ethnicity, socio-economic status and co-existing conditions of people with deafblindness. A proactive approach by the Irish government is vital as deafblindness is a growing concern: In 2011, research showed that there were 10.365 people with both hearing and vision impairments and the proportion of the population who experience a combination of vision and hearing loss is expected to rise dramatically as a result of the ageing demographic and increased survival rate for infants with multi-sensory impairments.
YOU CAN HELP BY:
- Emailing or speaking with your local government representatives and politicians about these issues
- Sharing your experiences with local councilors about your experience of friends/ family members/ neighbours who may be deafblind and in need of supports
- Asking your local representatives what they plan to do to improve the lives of people with deafblindness when they call to your door and ask for your vote
- Visiting the clinics of local councillor’s and TD’s and raising these issues.
What is Advocacy?
Advocacy is central to the work we do and our aim is to generate momentum for recognition of deafblindness as a distinct condition. We aim to do this by increasing political commitment to the inclusion of the condition of deafblindness in public policy as well as commitment to the mobilization of resources for the provision of deafblind specific supports and services. We will achieve our aims by working in partnership with those who are deafblind, their family members, carers, service-providers and other interested parties.
Representative advocacy usually involves an advocate supporting a person to claim their rights or entitlements. This include access to services such as education, health, employment; legal rights; making complaints, etc.
The National Advocacy Service provides a free and confidential advocacy service to people with a disability. Contact 0761 07 3000 or visit the NAS website
Self-advocacy is when a person speaks up for themselves. This can be achieved alone or as part of a group.
We facilitate an Advocacy Working Group which meets four times per year. The overall purpose of the working group is to provide a platform to guide and co-ordinate our inputs in the design and implementation of strategies to increase resources for those in Ireland who are experiencing deafblindness. An Irish Sign Language (ISL) interpreter is provided at each meeting. Persons with combined hearing and vision impairments are encouraged and supported to attend these meetings.
The group exists primarily to:
Ensure that the advocacy work undertaken by us is well-informed and in line with the real needs of those who are deafblind in Ireland.
Identify and share information regarding existing services and supports for persons who are deafblind in Ireland
Identify existing gaps in service provision and issues or challenges for persons who are deafblind
Identify appropriate sources to fund and/or undertake tasks and activities
Participate, where agreed, in advocacy activities of the Anne Sullivan Foundation.
Work collaboratively to have deafblindness recognised as a distinct disability
Policy advocacy involves influencing changes to laws, policies and practices that discriminate against people with a disability.
We participate on groups and committees monitoring government policy and have established our own Inter-Agency Policy/Advocacy group comprised of representatives from organisations supporting individuals who are deaf, blind and deafblind. An interpreter is provided at these meetings.
Our organisation engages in advocacy, lobbying and campaigning to ensure that individuals who are deafblind have the supports and services they require. Policy advocacy is currently focusing on the following areas:
Achieving recognition of deafblindness as a distinct disability, as separate to deafness and blindness
Ensuring early intervention for deafblind adults and children by a deafblind Consultant Specialist. This is cost-effective in the long run.
Ensuring better understanding of deafblindness by health and social care practitioners as well as those with responsibility for education.
Ensuring the development of a system that collects data on the population of deafblind people. (A good example is The National Child Count of Children and Youth who are deafblind in the US).
Increasing the availability of trained intervenors to support multi-sensory impaired and children who are deafblind within the school setting
Ensuring information and training in augmentative communication methods is provided for people who are deafblind, their family members and professionals supporting them.
Increasing financial assistance to purchase adaptive equipment (ramps, mobility aids etc..) and assistive technology (screen readers etc.).
Ensuring there is a Personal Assistant (PA) system in line with the UNCRPD
Ensuring there is support for individuals who are deafblind to be mobile in their own communities (Provision of adequate transport and intervenors)
Ensuring recognition among the State and public/professional bodies of Irish Sign Language (ISL) and augmentative and alternative forms of communication (such as tactile signing/objects of reference/PECS ) as formal communication systems.
Ensuring persons who are deafblind are consulted in the development of Universal Design Policy and Legislation
Ensuring persons who deafblind are consulted in the development of all disability policy and legislation
Ensuring further research into the area of deafblindness which includes greater consultation with people who are deafblind.
Our advocacy and campaigning work is supported by The Anne Sullivan Foundation (ASF)