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WHAT IS SPINA BIFIDA?

Spina Bifida literally means ‘split spine’

Spina Bifida is a relatively common condition, which affects about one in every 1000
children born per year in Ireland. Ireland has one of the highest incidences of Spina
Bifida births in the world. Spina Bifida is the most common neural tube defect (NTD)
which causes incomplete development of the spinal cord. Translated, it literally means
'split spine'.

The Central Nervous System (CNS)

The nervous system is essentially a biological


information highway, and is responsible for controlling all the biological processes and
movement in the body, At the centre of this system is the Central Nervous System (CNS).

The CNS consists of the brain and spinal cord. It is responsible for receiving and
interpreting messages and also sends out messages, either consciously or unconsciously.

The Spine

The spine is made up of separate bones called vertebrae, which normally cover and
protect the spinal cord. With Spina Bifida, some of these vertebrae are not completely
formed. Instead, they are split and the spinal cord and its coverings usually protrude
through a sac-like bulge on the back, covered with a thin membrane.

The Neural Tube


In the developing vertebrate, the neural tube is the embryo's precursor to the central
nervous system.

The central nervous system and spine develops between the 14th and 23rd day after
conception. Spina bifida occurs when the neural tube fails to close correctly. The
vertebrae also fail to close in complete rings around the affected portion of the spinal
cord. This leaves a gap posteriorly (at the back), involving one or more vertebrae. Spina
Bifida may occur in one or more of the vertebrae but it is most common around waist-
level.

Types of Spina Bifida


This page is available in a printable PDF format for your convenience.

Spina Bifida Occulta

This is known by some people as 'hidden' Spina Bifida and is very common. The split in
the bone of the spine is small and the spinal cord and main nerves cannot bulge out and
so little or no damage is done. The only thing to see on the back may be a dimple, tuft of
hair, or a red mark. Someone with Spina Bifida Occulta may not have any problems at all
and probably wouldn't know they had this condition unless an x-ray of the back was
taken. Antenatal tests usually do not detect this type of Spina Bifida, before birth.

Meningocele
(Pronounced men-in-jo-seal)
In this type of Spina Bifida, the split in the bones is not big enough for the spinal cord to
come through, but a 'balloon' of skin filled with fluid and blood vessels bulges out. This
fluid which comes from around the spinal column is called cerebro-spinal fluid (CSF).
Usually the nerve supply is not affected. The degree of disability is usually less severe
than Myelomeningocele, but can only be determined as the child develops.

Myelomeningocele

(Pronounced my-lo-men-in-jo-seal)
This is the most common form of Spina Bifida. The areas effected are dependent on the
location of the split. The split contains the spinal cord and nerves are held in the sack
which will also be filled with fluid. The spinal cord and nerves become exposed and the
degree of damage will determine the extent of disability. A Myelomeningocele is most
frequently found in the lumbar area, but can occur anywhere along the spine.

Encephalocele

(Pronounced en-cef-a-lo-seal)
In the minority of cases of NTD's, the split is high up and involves the back of the head
(skull). There is a balloon-like swelling but this does not contain important nerves of the
spinal column. Some Encephaloceles are small, covered with skin and the children
usually grow up without major implications. Sometimes, however, it is large and may
contain some of the brain and this can severely affect the baby's eyesight and can cause
learning disabilities. Sometimes, however, they can contain large volumes of brain tissue,
so that the reaming brain is small, poorly developed and severely Hydrocephalic.

Anencephaly

(pronounced an-en-cef-a-lee)
Anencephaly results in only minimal development of the brain. Often, the brain lacks part
or all of the cerebrum (the area of the brain that is responsible for thinking, vision,
hearing, touch, and movement). Due to the extent of under-development of the brain
babies affected by this condition are unlikely to survive outside the uterus, may be
stillborn or die shortly after birth. Treatment is supportive.

Support

At Spina Bifida Hydrocephalus Ireland (SBHI) we offer a number of supports to


individuals, families, carers and professionals through our Family Support Services.

The aim of the service is to work with our members, their families and carers, by
providing guidance and information in an environment which is conducive to their needs.

The Family Support Worker (FSW) will visit individuals and/or families in their own
home, in hospital, in school or in the work place. The nature and delivery of our service is
a direct response to the needs of our service users, their families and carers. This
information, support and guidance is available from the time of diagnosis, which can
occur during pregnancy or at the time of birth, through to adulthood.

The role of the FSW is very diverse and is guided by the needs of our members, their
families and carers. Our aim is to work with our members, their families and carers by
providing guidance, advocacy, emotional and practical support.

We also provide healthcare professionals, education professionals and those working


within the disability sector with information, resources and guidance, ensuring that our
members receive the best possible provisions from their multidisciplinary team.

WHAT ARE THE EFFECTS OF SPINA BIFIDA?


This page is available in a printable PDF format for your convenience.

An overview of the effects of Spina Biffida

The effects of Spina Bifida vary enormously, depending on the type, the location of the
cyst and the severity of the condition. These include Hydrocephalus, varying degrees of
paralysis, pressure sores, loss of sensation of the lower limbs, malformations, latex
allergies, social and sexual issues and bowel and bladder incontinence.

Latex Allergy

A small minority of people with Spina Bifida are allergic to latex. This is an allergy to
products made from natural rubber latex. Products made from natural rubber latex usually
contain a number of chemicals and some people are allergic to the chemicals rather than
the latex itself.

Sex and Reproduction

The male and female reproductive organs develop normally in the person with Spina
Bifida. Nerve damage may, in some cases, affect the function of the reproductive organs.
The desire to have sexual intercourse or a sexual relationship can be as strong in someone
with Spina Bifida as anyone else. Many people with Spina Bifida and Hydrocephalus live
happily with a partner enjoying a satisfying sexual relationship, and have families of their
own. It is advisable to take the higher dose (5mg) of folic acid prior to conception.
Urinary and bowel incontinence can be an issue, but they do not make sexual relations
impossible.

Pressure Sores

A pressure sore is a sore on an area of skin where there is continuous heavy pressure,
leading to a reduced flow of blood to the area causing tissue to erode and die. People with
Spina Bifida, especially wheelchair users are prone to developing pressure sores because
of insensitive skin or paralysis.

Paralysis and loss of sensation

In the case of myelomeningocele the spinal cord protrudes from the spine throughout
pregnancy and is closed by surgery shortly after birth. As a result the spinal cord is
almost invariably damaged and defective, the nerves being disorganised and broken. As a
result messages from the brain (controlling and initiating movement) and those from the
body to the brain (giving the sensations of touch, pain and position) are impaired.
However, paralysis, muscle weakness and loss of sensation occur only at the level of the
lesion and downward. Due to lack of skin sensation and decreased mobility, skin tissue
breakdown may occur resulting in pressure sores. In most cases the head, upper trunk and
arms are not affected. The level of impairment varies considerably depending on the
amount of damage and the location of the lesion.
Lack of bladder and bowel control (incontinence)

The nerves that control the bladder and bowel are located in the lowest region of the
spinal cord. Consequently incontinence is a major problem particularly in the case of
myelomeningocele. Lack of bladder control presents two immediate dangers - infection
and back pressure on the kidneys which, without proper management, can lead to renal
problems.

Hydrocephalus

Hydrocephalus literally means 'water on the brain' and is a potentially dangerous


condition involving the excessive accumulation of spinal fluid within the brain caused
either by over production of the fluid or more usually by an obstruction to its normal
circulation. While it is a complication of Spina Bifida occurring in approximately 90 %
of cases, Hydrocephalus is by no means exclusive to Spina Bifida.

What is Spina Bifida Occulta?


This page is available in a printable PDF format for your convenience.

“Occulta” Means Hidden

Spina Bifida Occulta is not easily detected because skin


covers the area, such as the spinal cord, spinal bone or nerve roots, which may be
affected. Spina Bifida Occulta can affect any level of the spine, but is usually found in the
lower part of the back. This condition is a result of a spinal underdevelopment and is
associated with disrupted development of the spinal nerve roots and spinal cord. The only
thing to see on the back may be a dimple, tuft of hair, or a red mark.
The prevalence of Occulta is not known, but it is probably the most common type of
Spina Bifida. In the mid 1980’s a study carried out in Great Britain suggested that 22% or
23% of people have Spina Bifida Occulta.

Spina Bifida Occulta is usually discovered accidentally when the person has an x-ray or
MRI for some other reason. Most people will not even be aware that they have Spina
Bifida Occulta unless it shows up on an X-ray which they have for some unrelated
reason. It usually shows itself as just a small part of one vertebra low in the back which is
missing.

See the diagrams below that show cross sections of one vertebra:

Compilations and Symptoms

Spina Bifida Occulta is rarely linked with complications or symptoms. Although there
may be a slightly increased chance of a slipped disc; very few people with Spina Bifida
Occulta will ever have any problems because of it. If a person has no symptoms from
Spina Bifida Occulta as a child, then it is unlikely that they will have any as an adult.

Like most conditions, there are different severities of Spina Bifida Occulta: The most
minor form will present as the plates of bone that form the spinal arch fail to fuse
completely. This variation generally only affects one vertebra, particularly the vertebra
lying lowest in the small of the back. Because there are no associated irregularities of the
spinal cord or nerve roots, there are no leg, bladder or bowel problems.

However, for some people (about 2% of those who have Spina Bifida Occulta) there can
be other problems. These problems arise because there are other things involved around
the area where the vertebra has not formed properly. For this small percentage of people
the problem with the spine can also be more extensive than just a small piece of missing
bone.

Spina Bifida Occulta Vs Occulta Spinal Dysraphism

When more than one vertebra is involved and these vertebrae have not developed fully
Spina Bifida Occulta can be referred to as Occult Spinal Dysraphism (OSD). This may
cause the person's back to be slightly short and often stiff. The natural curves of the back
may be exaggerated and there may be an abnormal curvature of the spine or a bony
protrusion in the midline of the back. There may be a bony peg at one level of the spinal
canal, or a fibrous band running across it and dividing it into two. The spinal cord may
become excessively wide because of abnormal fat or fibrous tissue lying inside the spinal
canal. Leg, bladder, or bowel function may also be affected.

Some of the other things which can occur around this site and affect a person’s
functioning are:

• Distortion of the spinal cord and the nerve roots coming from the spine by fibrous
bands or adhesions
• Fatty tumours in the spine, under the skin or in surrounding tissues
• Cysts in the skin or just under it
• Cysts filled with cerebrospinal fluid in the spine (syrinxes)
• Divisions in the spinal cord
• Spinal cord tethered or held down at the site (unable to move freely in the spinal
canal)

In addition to these structures which are usually hidden from view, there are a number of
signs which may appear on the skin (cutaneous signatures) and give a clue to the
underlying problems with the central nervous system.

These signs can appear on their own but quite often they appear in combination. Some
common ones are:

• An abnormal hair growth over the thoracic or lumbar spine


• A dermal sinus or small tract which leads from the skin surface down through to
the spinal cord. Blind sinuses or pits which do not lead into the spine are common
in newborns especially in the crease of the bottom and do not indicate underlying
problems.
• A fatty mass (lipoma) just under the skin
• A rudimentary tail
• A capillary haemangioma (stork bite) over the lower spine. Haemangioma over
the back of the head are more common and do not indicate underlying problems.
A word of warning: This sounds as if there is clear difference between Spina Bifida
Occulta and Occult Spinal Dysraphism (OSD). In practice, this is not always the case.
The best test available at the moment is the MRI (Magnetic Resonance Imaging), but
sometimes it is not easy to determine whether or not there is any neural (nerve)
involvement.

How can Occulta Spinal Dysraphism affect functioning?

Because the spine and the nerve roots at the site of the lesion are affected, in theory any
problem from the waist down can be due to OSD. Depending on the amount of neural
involvement, symptoms can be absent, minimal, or severe. Symptoms can include:

• Weakness or sensory loss in the legs, feet


• Leg length difference
• Foot deformity
• Problems with gait (walking)
• Bowel or bladder infection or incontinence
• Constipation
• Scoliosis (sideways curvature of the spine)
• Back pain

Continence problems may present as:

• Bedwetting which persists well into childhood


• Lack of awareness of need to pass urine until it is urgent
• Inability to hold on, even for a few minutes
• Dribbling of urine between visits to the toilet
• Recurrent urinary tract infections
• Constipation

For parents of young children with these problems, it is important for you to:

• Not lose patience with your child. Discipline or behaviour management rarely
solves this problem.
• The self-esteem of your child is of paramount importance.
• Try to establish a toileting routine eg toileting first thing in the morning, at
morning tea, lunchtime, after school, after dinner and just before bed. Ensure the
last drink is several hours before bedtime if possible. Adequate fluids throughout
the day are essential though.
• Talk to your child’s school. Let them know about your child’s toileting needs, so
that the school can accommodate them.
• Ask your GP for a referral to a urologist (a specialist in urinary problems).
• Talk to a Continence Adviser regarding continence aids.

For constipation, seek advice on management from a Continence Adviser (Contact your
Family Support Worker who can put you in touch with the SBHI Continence Advisor).
This problem can be treated more effectively if treated early. A well-balanced high fibre
diet is important.

Lower limb problems

Most children and adults with OSD have no orthopaedic (muscle and bone) problems.
When problems do manifest though, a GP should be consulted who may refer to an
orthopaedic surgeon.

Back pain

Back pain may be a significant problem for people with OSD. It is sometimes present
even in young children. It may be difficult or impossible to say that OSD is actually
causing the pain.

Back pain is very common in our society. Many people suffer back pain for a great
variety of reasons and those reasons may be present with or without OSD. For a person
experiencing back pain it is appropriate to look at what other factors may be influencing
the pain. The fact that a person has OSD cannot be changed, but many other factors can.

It is important to be aware of good back care eg correct lifting methods, good posture,
appropriate exercise etc. A physiotherapist can give advice in these areas.

Tethering of the spinal cord

The normal spinal cord moves freely in the spinal canal. However sometimes in OSD, the
cord becomes tethered or stuck down. This can cause stretching of the cord and affect the
blood flow to the area, especially during times of rapid growth. Some of the symptoms of
a tethered spinal cord are:

• Increased weakness or loss of muscle function


• Increased muscle tone
• Deterioration in gait
• Worsening of bladder function
• Progressing scoliosis
• Back pain

All of these symptoms can have other causes and should be investigated. The spinal cord
can be tethered with no symptoms. If it is warranted, an operation can be performed by a
neurosurgeon to ‘detether’ the spinal cord.

This procedure will usually not restore lost functioning, but in most cases it is able to halt
the worsening of symptoms.

Corrective Surgery

OSD develops during the first month of pregnancy and cannot be corrected. However,
surgery can assist with some aspects. Apart from spinal cord de-tethering, surgical
procedures

• Can remove fat or fibrous tissues which are affecting the functioning of the spinal
cord
• Can drain syrinxes or cysts in the spinal canal to reduce pressure on the spinal
cord
• Can be performed on the legs or feet to improve their functioning

Support

At Spina Bifida Hydrocephalus Ireland (SBHI) offers a number of supports to


individuals, families, carers and professionals through our Family Support Services.

The aim of the service is to work with our members, their families and carers, by
providing guidance and information in an environment which is conducive to their needs.

The Family Support Worker (FSW) will visit individuals and/or families in their own
home, in hospital, in school or in the work place. The nature and delivery of our service is
a direct response to the needs of our service users, their families and carers. This
information, support and guidance is available from the time of diagnosis, which can
occur during pregnancy or at the time of birth, through to adulthood.

The role of the FSW is very diverse and is guided by the needs of our members, their
families and carers. Our aim is to work with our members, their families and carers by
providing guidance, advocacy, emotional and practical support.

We also provide healthcare professionals, education professionals and those working


within the disability sector with information, resources and guidance, ensuring that our
members receive the best possible provisions from their multidisciplinary team.

SPINA BIFIDA & FOLIC ACID


Folic Acid & the prevention of NTD’s

Spina Bifida is the most common neural tube defect (NTD) which causes incomplete
development of the spinal cord. The exact cause of Spina Bifida is unknown; however the
causes of Spina Bifida are thought to be a combination of environmental and genetic
factors and a lack of folate in the diet - or the inability to naturally absorb folate.
Research to determine the causes of NTDs is still ongoing. What is evident though is that
taking Folic Acid cannot prevent all occurrences of Spina Bifida but it can help to reduce
the risk by up to 75%

Not Planning Yet?

In Ireland 50% of all pregnancies are unplanned each year. Spina Bifida Hydrocephalus
Ireland would recommend that any women of child bearing age take Folic Acid as part of
their regular diet. Taking 400 micrograms / 0.4 mg of folic acid can reduce the risk of
Neural Tube Defects (NTDs) such as Spina Bifida.

It’s a Small Effort

Folic acid is a B vitamin that can be found in some foods. It can be difficult to get your
recommended daily allowance (RDA) of folic acid from food alone. The most practical
way to make sure you are getting enough folic acid in your diet is to take a folic acid
supplement. If you take a multivitamin, check that it has the RDA of folic acid – 400
micrograms.

What is the risk of having a baby with Spina Bifida?

Women who may become pregnant but who have not been identified as being in a high-
risk group should also take folic acid. Folic acid should be taken for at least one month
before conception and then until the end of the 12th week of pregnancy.

If a couple have already had a child with Spina Bifida (or have had a pregnancy affected
by Spina Bifida) the risk of it happening in another pregnancy is about 1 in 35. For the
general population the risk varies from 1 in 300 to 1 in 1,000.

Can Spina Bifida be prevented?


Evidence shows that taking Folic Acid cannot prevent all occurrences of Spina Bifida but
it can help to reduce the risk by up to 75%.

Research has shown that women who have had a pregnancy affected by a neural tube
defect can greatly reduce their chances of it happening again, simply by taking a daily
vitamin supplement (tablet) of folic acid, before pregnancy and for the first 12 weeks of
pregnancy.

What does this mean in practice?

Women at higher risk of having a baby with an NTD should take a daily 5mg tablet of
folic acid for at least one month before conception and then throughout the first 12 weeks
of pregnancy. These 5mg tablets have to be obtained on prescription from a GP.

Women considered to be at higher risk of having a neural tube defect pregnancy include
those who:

• have had a previously affected pregnancy


• have an NTD themselves (or their partner has an NTD)
• have a family history of NTD or whose partner has a family history of NTD.
• have diabetes mellitus
• are very overweight
• have the “significant” form of Spina Bifida Occulta (see ‘What is Spina Bifida
Occulta?’)

Women in families where there has been Spina Bifida or another NTD in other relatives
may wish to receive genetic counselling. In these cases, they should ask their doctor to
refer them to a genetic counsellor.

A healthy diet can help

Women who are planning to become pregnant should also make sure that their diet
includes foods which contain folate (this is folic acid in its natural form found in food).

Foods in which folate naturally occurs include baked beans, chick peas, green leafy
vegetables, lentils, orange juice, oranges, peas, rice, soya beans, split peas and sprouts.
Vegetables should be lightly cooked or steamed as over-boiling destroys their vitamin
content.

Although it contains folate, liver should not be eaten: liver contains high levels of vitamin
A, which could harm the unborn baby. Additional vitamin A supplements (tablets) should
not be taken.

Some substances may affect the absorption of folic acid so women taking any medication
should check this out with their doctor. Those with epilepsy and on anti-convulsant
medication should consult their neurologist before taking folic acid, as folic acid and
some anti-convulsants can be antagonists (i.e. work against each other).

Further information

More information about diet and vitamin supplementation can be obtained by contacting
SBHI, GPs, health visitors, hospital doctors, dieticians and pharmacists.

If you have any questions about this information please contact the SBHI helpline or e-
mail info@sbhi.ie.

SPINA BIFIDA & HYDROCEPHALUS


Hydrocephalus literally means 'water on the brain' and is a condition involving the
excessive accumulation of Cerebral Spinal Fluid (CSF) within the brain caused either by
over production of the fluid or more usually by an obstruction to its normal circulation.
While it is a complication of Spina Bifida occurring in approximately 90 % of cases,
hydrocephalus is by no means exclusive to spina bifida. For more information, visit our
Hydrocephalus page.

SPINA BIFIDA & LATEX ALLERGIES

Latex is the sap from the Hevea brasiliensis tree. The first reports of latex allergies in
people with Spina Bifida were in the late 1980s. Today, experts think latex allergies
could be common for up to 73 percent of those with Spina Bifida.

No one knows why people are allergic to latex. Some experts think it’s because people
have too much contact with it. People with Spina Bifida that have or have had shunts,
other allergies and a lot of surgeries may be at more risk than others. Latex allergies are
not specific to Spina Bifida and can be a problem for anyone else who has a lot of contact
with it.

Latex allergy is not fully understood. Experts are still learning what proteins cause it.

Latex reaction
Check labels to ensure they do not have natural latex rubber in them.

Signs of an allergic reaction include:

• watery and itchy eyes;


• sneezing and coughing;
• rash or hives;
• swelling of the windpipe;
• wheezing;
• a hard time breathing;
• life-threatening collapse of blood circulation

The only way to not have a latex reaction is to avoid things with latex or latex-
contaminated powder. Contact occurs when latex touches the skin, mouth, eyes, genital
areas or bladder. Severe reactions can take place if latex enters the bloodstream. Powder
from latex balloons or gloves can get into the air. This is a problem when breathed or
touched by a person who is allergic. Food touched by people wearing latex gloves might
have this powder on it. (People allergic to latex may also be allergic to some fruits and
vegetables.)

Steps to take

Avoid latex products right from birth. Things made of silicone, plastic, nitrile or vinyl
can be used instead.

Those who had a reaction to latex should:

• wear a medic-alert bracelet or necklace;


• carry auto-injectable epinephrine;
• carry sterile non-latex gloves and other non-latex medical items for emergencies.

Discuss latex allergy and avoidance with health care providers, schools, pre-schools,
visitors and anyone else who is involved with the person who is allergic.

Talk to health care providers before hospitalisation or surgery to prevent accidents and
for latex-safe care.

Products containing Latex

The following items may be risky for people with a latex allergy:

• Health care items with latex: gloves, catheters, tourniquets, elastic/ace bandages,
IV tubing injection ports, vial stoppers, adhesive tape, dental dams and Band-aids.
• Other items with latex: balloons, pacifiers, rubber bands, stretchy clothes, beach
toys, Koosh balls, bottle nipples, condoms, diaphragms, diapers and art supplies.

Common household and hospital products containing latex:

• Household gloves
• Hospital gloves
• Condoms
• Condom incontinence aids
• Wheelchair tyres
• Adhesive tapes (sticky plasters)
• Some urinary catheters
• Some enema tubing
• Protective sheets
• Colostomy/urostomy products
• Balloons and rubber balls
• Art supplies
• Dental dams
• Baby bottle nipples and pacifiers
• Elastic on clothes
• Beach toys
• Chewing gum

There are alternative, non-latex products for all of these items. Usually, these alternatives
are made of plastic, vinyl or silicone.

Foods with a cross-reactivity to latex

Research has shown that proteins found in certain foods show similar immune system
reactivity to the proteins found in latex. So, if your mouth itches when you eat any of the
foods listed below, you could be allergic to latex as well. Foods which have been
identified as having cross reactivity include:

• Bananas
• Potatoes
• Avocados
• Tomatoes
• Kiwi Fruit
• Mangoes
• Chestnuts

There is a list available from the Spina Bifida Association (USA) This list provides a
guide to some of the most common objects containing latex and offers some alternatives.
It is not meant to be a comprehensive listing. Click here for to view the list
Is there a treatment?

Unfortunately, as with most allergies, the only effective treatment is avoidance.


Substitute products made with other materials (for example vinyl or nitrile gloves can be
used instead of latex gloves) or cover the items with a cloth to avoid direct contact.
Consult an allergist, wear a medic alert bracelet and tell all your care providers about
your allergy.

SUPPORT & RESOURCES

Family Support Service

The aim of the Family Support Service is to work with our members, their families and
carers, by providing guidance and information in an environment which is conducive to
their needs.

The Family Support Worker (FSW) will visit individuals and/or families in their own
home, in hospital, in school or in the work place. The nature and delivery of our service is
a direct response to the needs of our members, their families and carers.

We provide information, support and guidance from the time of diagnosis, which can
occur during pregnancy or at the time of birth, through to adulthood. We also provide
healthcare professionals, education professionals and those working within the disability
sector with information, resources and guidance, ensuring that our members receive the
best possible provisions from their multidisciplinary team.

The role of the FSW is very diverse and is guided by the needs of our members, their
families and carers. Our aim is to work with our members, their families and carers by
providing guidance, advocacy, emotional and practical support. For further information
visit the Family Support page or email the Family Support Team at
familysupport@sbhi.ie.

Youth and Respite Service

The Youth and Respite Service provides services nationally to people with Spina Bifida
and/or Hydrocephalus, their families and careers.
Its aim is to provide and develop respite and youth services that are conducive to the
changing needs of our members.

We encourage our members to enjoy a healthy, social, active and fulfilled life, to avail of
all education and employment opportunities and to promote the development of a
progressive society that is inclusive, aware and accessible to all. For further information
visit the Youth and Respite page or email the Youth and Respite Team at
SHINE@sbhi.ie.

Health Service Executive

Disability Services

The HSE provides a range of services for people with intellectual, physical and sensory
disabilities or autism. These services include basic health services as well as assessment,
rehabilitation, income maintenance, community care and residential care.
Some services are provided directly by the HSE. Many of the community, residential and
rehabilitative training services are provided by voluntary organisations with grant aid
from the HSE.

For further information visit


http://www.hse.ie/eng/services/Find_a_Service/Disability_Services/ or phone the HSE
information line on 1850 24 1850

Disability Assessment of Need

On June 1 2007, Part 2 of the Disability Act 2005 became law for children under 5 years
of age. Under Part 2 of this Act, children with disabilities have a right to:

• an independent assessment of their health and educational needs arising from their
disability
• an assessment report
• a statement of the services they will receive
• make a complaint if they are not happy with any part of the process.

Who can apply for an assessment?

Any parent who