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Welcome to our new charity, Ataxia Foundation Ireland (CLG) a Company Limited by Guarantee. The New Voluntary National Support Group for people affected by Friedreich’s Ataxia (The most common Genetic Ataxia) and up to 50 other Ataxia’s.

The organisation was founded by four people with Ataxia, to form the board of directors and trustees, we have recently increased the board to seven, five with an Ataxia and two, non-disabled people, who were volunteers for many years.

We have established our Management Committee, made up of members and volunteers, most of who have supported members or many years.

Our aim is to provide support services to people with Ataxia and their families, we have established this organisation which is run and managed by people with this condition, The CEO has (FA), the Chairman has (FA) and the majority of the board have an ataxia, it is important to us that we should take on these roles, “The Lived Experience of Disability”, No-non disabled person could have any idea what it is like to live with a disability, even with the best of intentions, only a person who lives this experience could understand the challenges disabled people wake up to every morning many of which are obstacles created by poor design of transport and architecture, lack of consideration by planners, unnecessary obstacles, put there by people with lack of foresight.

“In the past we have made assumptions about disability, that it’s the Impairment that causes the problem for the person, Disability is not a health issue but much more a social and political issue”.
Susan Carton,
Lecturer / Programme Director BA (Disability Equality Studies) & BA (Health and Disability Studies) Department of Nursing, Health Sciences and Disability Studies, St Angela’s College, Sligo.

This model goes against an established “System” where CEO’s are not disabled or don’t have the condition they are representing, in many cases leads to some of the scandals in the charity sector.

However we have many non-disabled people who support us, volunteers, carers, p/a’s, family and friends and we appreciate their support. We feel strongly that the time has come for us, people with disabilities to have some autonomy. It is time for us to take some control of our futures, independence has been defined as: Choice, Control & Power, even with a devastating disability like Ataxia, we can do a lot for ourselves, “By members for members”.

“When barriers are removed, disabled people can be independent and equal in society, with choice and control over their own lives”.

Our Mission Statement
“To enhance quality of life for all of us with an Ataxia. We lead positive change and deliver value through experience, information, advocacy and service”.

Yours Sincerely,

Albert Young
CEO & Executive Board

1 week ago

Ataxia Foundation Ireland

#PASNOW
What WE in the Independent Living Movement Ireland (ILMI) want for our Personal Assistance Service!

• Define: A universal accepted definition of the Personal Assistance Service, which places us at the centre of any service provided and is directed by us to meet our needs to live independent lives. The PAS is about providing us with the necessary supports, both inside and outside of our homes to enable us to live a life of choice, dignity and respect. The Personal Assistance Service needs to be separated from Home Help and Home Care with its own ring-fenced budget.

• Legislate: Introduce legislation to guarantee us the right to a Personal Assistance Service as per Article 19 of the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

• Invest: Increase the budget for Personal Assistance Services by €12.5 million annually to provide an additional 500,000 hours each year to enable us to lead real independent lives.

• Standardise: Introduce a single standard assessment of need across all HSE CHO areas. This must include the provision and support for independent assessment of need as per the Disability Act 2005 and the creation of systems that allow for portability of services across CHO areas, meeting our social, personal and employment needs with no bureaucratic barriers.

• Promote: Ensure that we are all made aware of the availability of the Personal Assistance Service in order that those who wish to lead to live their lives independently can access the necessary supports to do so.

Effective campaigns are strategic. They focus on specific goals and get everyone to relay the same message across the political spectrum. Our first strategic campaign is to bring about change in the resourcing and delivery of the Personal Assistance Service. We have held workshops on activism in Ennis, Leitrim, Dublin, Donegal, Cork and Galway so that disabled people can bring a consistent strategic message to their politicians and make them understand what we want from our Personal Assistance Service.

#Budget2019 has announced an additional €150 million for disability services. How that will be spent will be based on the HSE developing their service plan for 2019 in the next few weeks for Ministerial Approval.

Collectively, we need to have our voice heard. If we don’t lobby to ensure that this increase spend makes a real difference in disabled people’s lives, we can be certain that other groups will lobby for other services that will not promote inclusion of disabled people in society. If we don’t want that to happen, we need to act. We need as many people as possible to become active agents of change to build a more just, inclusive Ireland.

Now do YOU want to get involved? Contact us on info@ilmi.ie
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