What is Spina Bifida / Hydrocephalus?

Spina bifida is a fault in the development of the spine and spinal cord which leaves a gap in the spine.

The spinal cord connects all parts of the body to the brain. During the first month of life, an embryo (developing baby) grows a structure called the neural tube that will eventually form the spine and nervous system.

In cases of spina bifida, something goes wrong and the spinal column (the bone that surrounds and protects the nerves) does not fully close. Spina bifida is also known as split spine. The exact causes are unknown, Spina Bifida Information / Hydrocephalus Information. 

LEARNING SKILLS & DEVELOPMENT

Young people with Spina Bifida are often socially adept and good with words. The student can have co-ordination and perception difficulties that will affect learning. Short-term memory, speech and vision difficulties may also be present. Wide variations exist with regard to the needs of each individual student. Learning weaknesses may include:

Spina Bifida effects vary person to person but can include:

• Hydrocephalus
• Varying levels of paralysis
• Loss of sensation in lower limbs
• Bladder and bowel function
• Pressure sores
• Agenesis of the Corpus Callosum (ACC)
• Chiari Malformation
• Latex allergies
• Social and sexual issues

Hydrocephalus is a medical condition characterized by the accumulation of cerebrospinal fluid (CSF) in the cavities (ventricles) of the brain

This excessive buildup of fluid can cause the ventricles to enlarge, leading to increased pressure on the brain tissue. The term “hydrocephalus” comes from the Greek words “hydro” meaning water and “cephalus” meaning head.

Symptoms of hydrocephalus can vary depending on the age of the individual and the rate of fluid buildup. In infants and young children, symptoms may include an enlarged head, rapid head growth, vomiting, sleepiness, irritability, and poor feeding. 

Learning Strategies and Supports 

• If students use wheelchairs, where possible place yourself at their eyelevel when talking to them.
• Use a multi-sensory appraoch to learning - seeing, hearing, smelling, touching, tasting and moving.
• Provide a printed copy of black board material.
• Allow responsible peer students to share notes.
• Use a buddy system for tasks such as  science experiments.
• Use visual maps - mind maps to aid comprehension.
• Provide a quiet place to study with few distractions.
• Give short assignments or chores that can be done successfully and quickly to increase concentration
• Set up an exercise routine to reduce physical tension.
• Encourage students to stop and think about what is to be done and how it is to be done. The old adage "count to 10 before you act" may be helpful.
• Give positive reinforcement for taking a longer time on a task already successfully completed.
• Do not require long periods of independent work.
• Identify which 'learning' style works best - visual, auditory, etc.
• Encourage the use of alarms, stop watches, calculator to aid and overcome memory difficultuies.
• Encourage the use of IT and assistive technology where appropriate.

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 and Secondary Level Education:

Many children with SPH attend mainstream primary and secondary schools with their peers unless they have additional needs requiring a special placement. Whilst having the same level of ability as their peers, children with SPH can be at risk of underperforming due to seizures, hospitalisation, effects of medication and cognitive issues such as memory problems, SBHI Starting School. 

These issues themselves do not attract school-based learning support, unless the child is performing in the lowest range at school. In this instance, The National Educational Psychological Service (NEPS) is responsible for providing assessments within schools. The School can commission a small number of assessments each year through the NEPS but waiting lists are lengthy and private assessments by NEPS approved psychologists will be accepted for this purpose.

If the child meets the assessment criteria, they may be awarded a set number of hours of resource time per week and may also be eligible for a Special Needs Assistant.  It is important to discuss any support concerns with the principal in the event that an assessment is warranted, National Council for Special Education NCSE Education Resources. 

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.

Assistive Technology

Assistive technology 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). 

Spina Bifida Hydrocephalus Information Resources

Secondary Level Education:

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.

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.  

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. 

Details of the scheme of reasonable accommodations RACE State Examinations Commission website.

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

Third Level Education:

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.

Spina Bifida and Hydrocephalus 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 Spina Bifida and Hydrocephalus 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

SBHI- Spina Bifida and Hydrocephalus 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, SBHI Spina Bifida and Hydrocephalus & College. 

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

• Priority registration
• Reader service
• Use of audio-tape to record lectures and tutorials
• Assistive technology
• Materials in alternative formats
• Word-processing facilities
• Photocopying Facilities 
• Copies of lecturer's notes and/or overheads 
• Notetaker
• Time extension on out-of-lecture assignments
• Special Library Arrangements
• Counselling and Medical Services
• Study skills courses
• Examination provisions 

These and other supports available are outlined in detail in our 'Third Level Supports' area.

There are many different types of Assitive Technology to support you in your learning, AHEAD Assistive Tech Hive.

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, WRC Workplace relations commission.   

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, SBHI Employment & Information.

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.

To Disclose or Not to Disclose?

If you are feeling fine and your Spina Bifida / Hydrocephalus symptoms have not created any limitations for you at work, then you may choose not to disclose your condition. You may want to tell your supervisors and coworkers, especially if you require accommodations to be made at work, AHEAD A Guide to Disclosure, 2023. 

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.

People with Spina Bifida and Hydrocephalus 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.

Famous People Spina Bifida / Hydrocephalus

Singer Hank Williams, Artist Frida Kahlo, Olympians Jean Driscoll & Tanni Grey Thompson, Poet & Writer Jay Bradford Fowler & Robert Hansel, Composer & Sound Designer Jim LeBrecht, Alice Cooper Guitarist Richard Wagner.