What is Turner Syndrome?

Turner Syndrome is the result of a chromosome disorder. The condition is specific to girls (about one in 2,000 girls suffer it). The effects vary, but there a number of physical and health conditions characteristic of it.

A girl with Turner Syndrome may:

• Be below average height
• Not go through normal changes at puberty
• Have health problems (kindey, high blood pressure, thyroid, diabetes, heart)
• Have problems with hearing
• Certain physical characteristics i.e. abnormal bone development at hands and elbows; low hairline at the back of the neck; drooping eyelids; extra folds of skin at shoulders. 

Turner Syndrome.org

Turner Syndrome Suport Society UK

Learning & Skills Development

Impact on learning may include:

• Difficulties with some areas of learning in maths - particularly visual/spacial
• Can develop good language skills
• Social and/or emotional problems may also present
• Difficulties present when there is an unexpected change in routine
• Tend to be an auditory rather than a visual learner

Turner Syndrome.org

Learning Tips & Strategies

• Provide activities that encourage the building of self-esteem
• Use a multi-sensory approach to learning
• Use strategies to develop visual/spacial skills;
• Encourage the development of ICT skills to increase motivation
• Encourage participation in all school/group activities where possible
• Organisational skills may need to be taught - the use of reminder signs and notes, colour-coded books and copies, may be of use in this regard
• Give advance warning and explicit descriptions of any change that will happen

Supports available

Parents of infants, toddlers and young children with disabilities can access the HSEʼs Early Intervention Teams. These multi-disciplinary teams consist of a range of professionals with expertise in child development including medical professionals, psychologists, social workers, speech and language therapists, occupational therapists and physiotherapists. They provide assessment and intervention services to the 0-5 age group.

If a parent has concerns regarding their childʼs developmental progress, they may seek to have the child referred for an Assessment of Need by the HSE. The assessment may screen for concerns in relation to the childʼs physical, cognitive, emotional, social and adaptive behaviour and identify areas of need. Following the assessment, a HSE Liaison Officer is required to prepare a service statement within a month of the assessment being completed. This service statement will state what services the child will require and an action plan will be developed to deal with how these are to be provided subject to resources.

Parents seeking an Assessment of Need can ask their GP, Public Health Nurse or the childʼs Consultant to refer the child or they can make a parental referral by contacting their local HSE clinic. Parents seeking an HSE Assessment of Need can ask their GP, Public Health Nurse or the childʼs Consultant to refer the child or they can make a parental referral by contacting their local HSE clinic.

Primary Level Education:

Primary Level Education Children with Down Syndrome have been treated differently under Department of Education rules since 2005, regarding allocation of resource teaching hours, depending on a diagnosis of 'moderate general learning disability' or 'mild general learning disability'.

The Department of Education has been asked to rectify the situation. A replacement model is being designed by the NCSE to end the differentiation between general allocation and individual hours, giving each school a set number of special teachers based on the overal profile of the pupil population, NCSE National Council Special Education. 

Secondary Level Education:

When a student with Turners Syndrome starts secondary school from a regular mainstream environment in primary school, the social and learning needs of the student would be best served by enrolment in a regular, mainstream class in the secondary school. The support of a Special Needs Assistant (SNA) is crucial for the success of such a transition.

A student who has been receiving special education support or resources while in Primary School is eligible for continuation of support at secondary level, once they continue to have a special educational need, NCSE Parent information resources. 

The same general provisions he/she received in primary school apply at Secondary Level. This typically includes specialist teaching from a Learning Support or Special Education Resource teacher (both now referred to as Special Education teachers).

This support is provided based on need, with the number of hours of support determined by the Individual Education Plan (IEP) drawn up in the last year of primary school NCSE Special education needs support.  The Special Educational Needs Organiser (SENO) is an officer of the National Council for Special Education with responsibility for allocating resources to pupils with special needs and related issues in schools.

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

Assistive Technology

Assistive tech is technology used by individuals with disabilities in order to perform functions that might otherwise be difficult or impossible. Assistive technology can include mobility devices such as walkers and wheelchairs, as well as hardware, software, and peripherals that assist people with disabilities in accessing computers or other information technologies. For example, children with limited hand function may use a keyboard with large keys or a special mouse to operate a computer, people who are blind may use software that reads text on the screen in a computer-generated voice, children with low vision may use software that enlarges screen content, people who are deaf may use a TTY (text telephone), or people with speech impairments may use a device that speaks out loud as they enter text via a keyboard.

A wide variety of assistive technology is available today, providing the opportunity for nearly all people to access Information Technology (IT), AHEAD Assistive Tech Hive. 

Third Level Education:

Going to college is the gateway to many rewarding careers for all young people, including those with Turner Syndrome. It also provides life-changing opportunities for more mature people with difficulties or disabilities, Physical Ability DARE screening criteria. 

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.

Turners Syndrome 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 Turners Syndrome 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

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. 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.

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.

People with Turners Syndrome may benefit from completing their interest profiler and aptitude testing, which will help them identify potential career paths, Explore your Personal interest profile.

Famous people with Turners Syndrome

Olympian Lizzy Yarnold, Actresses Georgie Porter, Nicole Gale Anderson, and Fran Drescher, Actresses & Models Beckanne Sisk and Emily Ratajkowski, Writer Karen Duffy, Lawyer & Politician Angela Alsobrooks.