What is Motor Neurone Disease?

Motor neurone disease  is a rare condition where parts of the nervous system become damaged. This causes progressive weakness, usually with muscle wasting. The condition occurs when specialist nerve cells in the brain and spinal cord called 'motor neurones' stop working properly.

Motor neurones control important muscle activity, such as gripping, walking, speaking, swallowing, and breathing. As the condition progresses, people with motor neurone disease will find these activities increasingly difficult.

There are currently more than 450 living with MND in Ireland and registered with the Irish Motor Neurone disease Association. Motor Neurone disease typically only develops after the age of 40 (specifically between the ages of 50 and 70 years). Out of every 10 people with AMD 6 are men and 4 are women, IMND Ireland Resources.

 

There are different forms of Motor Neurone Disease

They progress at different speeds. Exactly what causes motor neurones to stop working properly is unclear, but there is not currently thought to be a link with factors such as race, diet and lifestyle, Irish Motor Neurone Disease Information.

LEARNING SKILLS & DEVELOPMENT

There are currently more than 450 living with MND in Ireland and registered with the Irish Motor Neurone Disease Association.

Motor Neurone disease typically only develops after the age of 40 (specifically between the ages of 50 and 70 years). Out of every 10 people with AMD 6 are men and 4 are women, IMND Ireland Resources.

RACE (Reasonable Accommodation in Certificate Examinations)- specific learning disabilities are recognised as giving rise to certain difficulties for students, including students with Dysgraphia. Under the RACE scheme, students with permanent or long-term conditions*, which will significantly impair their performance in state exams, may apply to the State Examinations Commission (SEC) for a reasonable accommodation(s) to be made to facilitate them taking the examinations. The Race scheme aims to assist students who are at a disadvantage due to a disability, by facilitating access to the state certificate examinations. Details of the scheme of reasonable accommodations RACE State Examinations Commission website. 

There are levels and resources of support within FET courses, Reasonable Accomodations in FET 2022. 

Third Level Education:

Motor Neurone Disease is one of the Neurological Conditions covered under the Disability Access Route to Education (DARE) system. Research findings from AHEAD released in 2022 show that, of the total disabled student population (18,097) at Third Level 2021/22 represented in the research Neurological/Speech and Language (n=1195), AHEAD- Students with Disabilities engaged with Higher services 2022.

Motor Nuerone Disease is one of the Neurological Conditions covered under the Disability Access Route to Education (DARE) system.

Applicants complete the CAO application by 17.15pm on 1st February. CAO opens for applications on 5th November at 12.00 noon, CAO DARE Information.

By 1st March, applicants must answer YES to Question 1 ('Do you wish to be considered for DARE?') on Section A of the Supplementary Information Form (the SIF is a part of your CAO application). 

Applicants with a Neurological Condition are required to provide:

Evidence of their disability (Evidence of Disability Form 2016 OR Existing report from a  Neurologist OR other relevant consultant (No age limit).

Educational Impact Statement - must be completed by the applicant and your School Principal, Teacher or Guidance Counsellor and returned to the CAO by 17.15pm on 1st April.

You don’t have to be eligible for DARE (Disability Access Route to Education) to get support in college. All students with a verified disability, regardless of whether they come through DARE or not, can avail of a variety of academic, personal and social supports while studying at third level. Further information on the support available in college can be found at www.accesscollege.ie. 

DARE Motor Neurone screening criteria.

In the Workplace

Many organisations now make public claims to be an "equal opportunities employer". This suggests the existence of an equal opportunities policy (EOP), which is a policy statement adopted by the organisation declaring an intent not to discriminate and, further, to promote equality by taking steps to aid disadvantaged groups.  Such employers are in effect promising to avoid discrimination on grounds of sex or marital status, and may also make such a commitment in relation to people with a disability and racial and ethnic minorities, WRC Workplace Relations Commission. 

NDA National Disability Authority Accessbility, communications, procurement guide, NDA Toolkit. 

AHEAD have developed a useful guide to disclosing a disability, AHEAD Disclosure resource. 

Workplace Equipment Adaptation Grant (WEAG)

If you are a person with a disability who has been offered employment or are in employment, and require a more accessible workplace or adapted equipment to do your job, you or your employer may be able to get a grant towards the costs of adapting premises or equipment. Details of WEAG grants available and how to apply are available, Workplace Equipment Adaptation Grant (WEAG).

Career Choice

Skills for workplace success fall into two main categories: hard skills and and soft skills. Hard skills are job-specific and they vary, depending upon the industry or field in which you want to work. For example, a graphic artist must have the computer skills that go with that job.

Soft skills are the personal characteristics that go with a variety of jobs - they include social skills, problem solving, communication, time management, and organisation. For example, a person who prefers to work alone might find a research job particularly appealing, Explore Career Skills in more detail.

Motor Neurone Disease does not affect intellectual capability, and with the availability of computer technology, many people with MND have developed successful careers. 

The type and progression of individual's symptoms is an important factor in deciding whether to continue working and for how long. Being able to stay at work also depends on other factors, including the nature of the work itself, the physical suitability of the workplace, how supportive employers were prepared to be, availability of aids and equipment, and the practicalities of travelling to and from work, IMND Ireland Resources. 

Focus on your strengths and abilities and look at career options based on these, Explore Personal Interests in more detail.

Famous People with Motor Neurone Disease

Physicist-Stephen Hawking, Guitar virtuoso Jason Becker,  Irish Director-Stephen Fitzmaurice, Irish Hurler-Pierce Higgins, and Irish Actor Cyril Cusack.