What is Cystic Fibrosis?

Cystic Fibrosis(CF) is an inherited chronic disease that primarily affects the lungs and digestive system. Symptoms usually start in childhood and the impact of CF can vary from one person to another. The most noticable features of CF are a persistent cough and recurring chest and lung infections. Daily physiotherapy and nebuliser treatment is the key support strategy required, CFI- Cystic Fibrosis Ireland.

LEARNING SKILLS & DEVELOPMENT

People with CF are academically as able as their peers but hospitalisations and repeated chest infections can result in frequent or prolonged absences from school.

In the 1950s, few children with cystic fibrosis lived to attend primary school. Today, advances in research and medical treatments, including in Ireland,  have further enhanced and extended life for children and adults with CF. Many people with CF in Ireland can now expect to live into their 30s, 40s and beyond. People with CF in Ireland are increasingly going on to attend third level colleges, accessing employment, and living more independent lives.

Ireland has the highest rate of CF per capita in the world, with approximately 1,400 children and adults in Ireland living with the condition, Cystic Fibrosis Registry Reports 2021/ 2022. 
 

CF in Ireland Statistics

• About 33 new cases of cystic fibrosis in Ireland are diagnosed each year.
• Because of new born screening, most babies with CF should now be diagnosed quickly
• Around 60% of the CF patient population in Ireland is aged 18 or older.
• The predicted median age of survival for a person with CF in Ireland is 51.
• For the most up-to-date statistics on CF in Ireland, please see, the Cystic Fibrosis Registry of Ireland Report 2021. 

Learning Strategies and Supports 

A student with cystic fibrosis:

• May need special medications - these are not habit-forming and do not alter attitude or behaviour.
• May cough frequently, and should not be discouraged from doing so.
• Should minimize exposure to germs, and practice good hygiene.
• May need quick or frequent exits to the bathroom.

There are wide variations in the severity of cystic fibrosis, and each person should be treated as an individual, Cystic Fibrosis Ireland Guides.

Supports available

Primary Level Education:

The vast majority of children with physical disabilities attend their local mainstream primary and post-primary schools and follow the same curriculum as every other student. A small number, with more complex needs, may attend a special school or special class for children with special educational needs.

Special schools and classes have smaller class sizes. Depending on the nature of your child’s disability, you may
need to check with the school Principal that the school is accessible for your child, NCSE supports. 

Second Level Education:

Post-primary students with special educational needs may attend a mainstream post-primary school. They may be in mainstream classes with the support of a learning support/resource teacher and/or the care support of a special needs assistant or may be in a special class.

A school may apply for a grant to make the school accessible for a student with a disability, for example, to put in a ramp or accessible toilet accommodation. Information about this provision can be obtained from the Building Unit of the Department of Education and Skills – see 'How to apply' below.

The following support services are available for students with disabilities and special educational needs attending post-primary schools:

• Resource teaching
• Special needs assistants
• Equipment grants

Resource teachers are allocated by the National Council for Special Education (NCSE). If a student had additional teaching support in primary school, a formal assessment or diagnosis will now be required by the post-primary school when it applies for additional resource teaching for the student.

Reasonable Accommodations at the Certificate Examinations (RACE) The Race scheme aims to assist students who are at a disadvantage due to a disability, by facilitating access to the state certificate examinations, Reasonable Accomodations State Examinations Commission.

There are levels and resources of support within learning in FET Further Education & Training courses, Reasonable Accomodations in FET 2022. 

Third Level Education:

Going to college is the gateway to many rewarding careers for all young people, including those with CF. It also provides life-changing opportunities for more mature people.

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, 2,284 (12.6%) have an 'ongoing Disability', AHEAD- Students with Disabilities engaged with Higher services 2022.

Common Educational Supports - a range of common educational supports are in place at Third Level for students with disabilities.

Cystic Fibrosis is one of several Significant Ongoing Illnesses* covered under the Disability Access Route to Education (DARE) system. The applicant is eligible once an appropriate professional has diagnosed a significant and ongoing illness, (for example where the date of onset of a condition is greater than one year) AND the applicant also meets any combination of two educational impact indicators from indicators 1 to 6.

Applicants with CF who wish to apply to college via DARE need to provide the following:

Evidence of Disability - Complete the Evidence of Disability Form 2016 OR Submit an existing report completed by the appropriate professional which contains the same detail as the Evidence of Disability Form. (The report must be less than 3 years old i.e. must be dated after 1st February 2013 for 2016 applicants).
Other Disabilities/Medical Conditions - Submit an Evidence of Disability Form for each disability / medical condition to be considered .

Educational Impact Statement (EIS) - you and your school must provide detail of how your disability has impacted on your second level experience. The Educational Impact Statement is used by DARE to determine if an applicant to DARE has been educationally impacted as a result of their disability. This information and the information contained in your Evidence of Disability documentation (Section C) allows DARE to assess if an applicant has met the DARE criteria. The Educational Impact Statement also provides background on your educational experience and helps to determine appropriate supports at third level.

CAO DARE Information

CFI- Cystic Fibrosis Ireland have developed booklets to make the process of transition to third level, and to help answer some of the many questions that may arise, Guide to Education Cystic Fibrosis Ireland. 

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, see WRC Workplace relations. AHEAD have developed a useful guide to disclosing a disability, AHEAD Disclosure resource. 

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

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 Workplace Equipment Adaptation Grant.

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. You may benefit from completing a Personal interest profiler and aptitude testing, which will help them identify potential career paths.

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.

Career choice should always be based on each individual's intellect, ability, personal interests and life goals. People with CF are not limited in choice of employment and enjoy success in a wide variety of professional, technical, and clerical jobs. However, certain factors need to be considered when it comes to career choice.

Daily self-care routine - How much time does your treatment routine take each day?

Overall health - Is your CF condition mild, moderate, or severe? How often is infection likely to cause you to lose time from work? How are your energy levels? Do you have other CF related problems that might be affected by your work?

Coping strategies - do you cope easily with life and the challenges of managing your condition?

Cystic Fibrosis Ireland Guides.

CF should not prevent you from pursuing the career you want, but some areas will pose greater health risks. Any or all of these factors may influence your career decisions. For example, working with children, or in the healthcare sector may expose you to greater risk of virus and infection.

Work environment is important. Outdoor work (landscaping) or manual/labouring work may be beneficial and help with fitness levels and airway clearing, but is also physically demanding. Some work environments may expose you to irritants such as smoke and fumes (firefighter, chef), chemicals (Printing, Manufacturing), or dust (carpenter, construction worker etc). They are not impossible, but appropriate protective respratory equiment will be required.

Stressful, fast-paced and risky work environments (stock-broker, police work, firefighter) can make the demands of your self- care regime a challenge. Likewise, careers that require close on-the-job concentration and focus (air-traffic controller). Altitude can also complicate health problems (airsteward/hostess; pilot; scuba diver) for the person with CF.

People with CF are found in a wide range of interesting fields  - Consultant air quality scientist; Architect; Project management; Respiratory therapist. Work areas where flexible hours, working from home or self-employment are options are worth considering. Careers in areas such as computer technology, graphic design, photography, journalism, law, and business offer great opportunities for flexibility.

Famous people with Cystic Fibrosis

Orla Tinsley, Irish Journalist, Author and social activist. Actor Anton Yelchin, Composer Frédéric Chopin, Sports people Andrew Simmons, Nathan Charles.