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.
IMPACT ON LEARNING SKILLS & DEVELOPMENT
Young people with Spina Bifida are often socially adept and good with words. They student can have co-ordination and perception difficulties that will affect learning. Short-term memory, speech and vision difficulties may also be present. A wide variations exist with regard to the needs of each individual student. Learning weaknesses may include:
- Poor coordination between eyes and hands (perceptual-motor)
- Hearing or speaking but not necessarily understanding (comprehension)
- Poor attention (attention/distractibility)
- Restless/Fidgety (hyperactivity)
- Not remembering what is said or seen (memory)
- Disorganisation (organisation)
- Not keeping things is order (sequencing)
- Poor at making decisions and solving problems (reasoning/problem solving)
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 wathces, calculator to aid and overcome memory difficultuies
- Encourage the use of IT and assistive technology where appropriate
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.
At 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.
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.
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 see www.ncse.ie for a list of SENOʼs in each county.
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).
See also SBHI Information leaflet
At 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.
At Third Level Education:
Spina Bifida and Hydrocephalus is one of the Physical Disabilities covered under the Disability Access Route to Education (DARE) system. Details of the DARE screening criteria for applicants with SBH are available here.
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.
Impact on 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 here.
See also: SBHI Employment - A Guide for Your Future