Muscular Dystrophy
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Membership here for further information and to sign up. Annual membership is €15 per individual adult.
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1. What is muscular dystrophy?
Muscular dystrophy (MD) refers to a group of more than 30 genetic conditions that cause progressive weakness and degeneration of skeletal muscles used during voluntary movement. These conditions vary in age of onset, severity, and pattern of affected muscles. All forms of muscular dystrophy grow worse as muscles progressively degenerate and weaken.
Some types of muscular dystrophy also affect the:
Heart
Gastrointestinal system
Endocrine glands
Spine
Eyes
Brain
Other organs
Respiratory and cardiac diseases may occur, and some people may develop a swallowing disorder. MD is not contagious and cannot be brought on by injury or activity.
3. What are the symptoms?
The primary indicator of muscular dystrophy is the progressive weakening and atrophy (wasting) of muscles. The specific muscles that are affected, and the severity of the resultant symptoms, vary widely depending on the type of disease. Many forms of muscular dystrophy cause weakness in muscles needed for movement, which can cause fatigue and impair mobility.
4. How is muscular dystrophy diagnosed?
Your doctor is likely to start with a medical history and physical examination. After that, your doctor might recommend:
· Enzyme tests
Damaged muscles release enzymes, such as creatine kinase (CK), into your blood. In a person who hasn't had a traumatic injury, high blood levels of CK suggest a neuromuscular condition.
· Genetic testing
Blood samples can be examined for mutations in some of the genes that cause types of muscular dystrophy.
· Muscle biopsy
A small piece of muscle can be removed through an incision or with a hollow needle. Analysis of the tissue sample can distinguish muscular dystrophies from other muscle conditions.
· Heart-monitoring tests (electrocardiography and echocardiogram)
These tests are used to check heart function, especially in people diagnosed with myotonic muscular dystrophy.
· Lung-monitoring tests
These tests are used to check lung function.
· Electromyography
An electrode needle is inserted into the muscle to be tested. Electrical activity is measured as you relax and as you gently tighten the muscle. Changes in the pattern of electrical activity can confirm a neuromuscular condition.
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To learn more about the different types of Muscular Dystrophy please visit our dedicated page.
Family
Talking to your child
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The first step is to tell children the diagnosis as soon as possible; if some time has already passed since the diagnosis by the time, you read this, then consider telling your child now.
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Because children will wonder why they are not being told what’s going on. Toddlers and very young children can sense when their parents and other family members are upset or when something is wrong. As they grow older, children will be aware of changes in their physical condition and may make comparisons between what they can do and what their peers or siblings can do.
If children are not given an explanation, children often worry about these changes and develop their own explanations for why people are upset.
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Children like to learn from their parents. Generally, children do best if the adults having these conversations with them are people they have a relationship with. For this reason, your child’s medical team will typically look to you to have these conversations with your child.
Any information shared with your child should be appropriate to their age and experience. Children’s understanding of their condition develops as a result of maturity, experience and education. So when thinking about talking to your child, it is useful to remember you do not need to tell them everything in one go. In fact, doing so is likely to be overwhelming.
It might be helpful to start with these pointers
What do they already know?
Start the conversation by asking children what they already know about their condition. Ask questions to check their level of understanding.
Do they really understand what they have been told?
Look out for misunderstandings. Sometimes it can be hard to judge how much your child understands, so ask them to explain to you what you have just told them. This is a really useful technique to double-check their understanding.
It’s ok to talk about it to me.
Tell them explicitly that they can ask you questions about their condition whenever they want to. Do not presume that they know this.
Be truthful.
Answer truthfully any questions they have. If you do not know the answer, then say so. That’s ok too. Often children just want to know that you are there and happy to listen.
Give the condition its correct name.
Use the correct name for the condition your child has. Even for very young children, it is helpful to have a name for something. They will become familiar with the condition over time and, bit by bit, understand more about what it means.
It’s not their fault.
When you first start to talk with your child about their condition, make sure you explain that it is not the result of something anyone did. It’s also not an illness that can be spread to other people. Young children are prone to misunderstandings; under the age of five or six, they generally think in very concrete terms. This means they can end up thinking things are the result of their being naughty or bad in some way.
Keep it in the present.
When thinking about discussing your child’s muscle wasting condition with them, it can be helpful to remember this is just the beginning of a conversation that you will repeat and expand on over time. Keep the focus on the day-to-day information they need to know now, particularly when talking with younger children. Children do not need to know everything at once. They will quickly feel overwhelmed if you give them too much information.
Increase the amount of information with age.
As your child reaches new stages in development and new milestones, their information needs will increase. These include milestones, such as entering secondary school, as well as those associated with the progression of their neuromuscular condition. If things have changed with their condition or they have upcoming hospital appointments, use these times to check in with them about how they are doing. Check whether or not they have any questions.
Questions for the doctor – giving your child a voice.
As your child gets older, ask if they have any questions for the doctors before and after they attend appointments.
Prepare them well for transition to adult services.
As your child approaches transition to adult services (which usually occurs between the ages of 16 and 18), it is likely they will be become more actively involved in their treatment and treatment decisions. It is really important that they are prepared for this and know enough about their condition and its prognosis to do so. In adult services, the young person may be asked specific questions about their wishes with regard to treatment in the future. It may be distressing for them if they are not already fully informed about their condition and prognosis.
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Encourage your child and explain how important stretching exercises are they are perhaps the most important exercises for all ages. Anybody who sits in the same position all the time will get stiff and uncomfortable. If you have a muscle condition, the stiffness can become permanent if the muscles and joints are not moved and stretched. Physios and doctors call this stiffness a ‘contracture’. Knees, for example, normally bend right back so that the calf and the back of the thigh meet and they can also straighten up.
Parents
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As a parent or carer of a child with a disability, you may be able to claim benefits or financial support. This is to help you with the cost of their care.
Benefits and entitlements you may be eligible for include:
· Social Welfare benefits
· Tax credits
· Housing grants to adapt your home
· Transport and mobility
Your eligibility may depend on your circumstances, such as:
· the needs of the person you care for
· your income
· where you live
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Carer's Allowance is a weekly social welfare payment to people who are caring for a person who needs support because of their age, disability or illness (including mental illness).
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There is no right or wrong way to feel. You will probably feel differently at different times. One minute (or day), you may feel able to cope and then the next day you may feel much more fragile. Some parents say they feel as if they are on a giant roller coaster, and then the good days gradually start to outnumber the bad ones.
It is never easy coping with the unfamiliar. Most parents have a vision for their child and it can be very challenging when this vision is changed by something beyond their control.
Some people find that talking to a counsellor can help. You may want to speak to someone about a new diagnosis, about your feelings about being a parent or carer of a person with muscular dystrophy or anything else that might be causing you difficulty or emotional distress. MDI’s free Counselling Service is here for you when you need emotional support. You can find out more by contacting us
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If you have a partner, you may find that you and your partner cope with the situation differently.
Sometimes one partner wants to talk while the other doesn’t. What works for some couples is to negotiate some agreed ‘talking time’ so that each partner’s needs are at least partly met.
If one partner is out at work, the other may take on more of the responsibilities relating to the home and children, including attending clinics. Feeding back information from clinic appointments can be difficult; one partner may not have asked the same questions as the other would have. If you cannot attend appointments together, you may find it helpful to compile a list of questions together in advance.
Because everyone deals with situations differently, it may be helpful to get support from a trusted friend or from health professionals.
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Any physical changes in your child are likely to be subtle rather than sudden or dramatic. In very young children, as they go through normal development, you may initially see positive progress.
However, if your child is walking, it is common for him/ her to tire more quickly when walking longer distances, to complain of pain in legs after exercise, to struggle with stairs or to fall frequently. A child may struggle more at the end of the day, particularly if they have been doing physical activities.
Sometimes, weakening of the arms or hands may occur. Writing for long periods, or taking clothing off or putting it on over the head may become more difficult.
If your child is not able to walk at all, changes may take place in their posture or joint position, owing to weakness in some muscle groups.
While it is good to encourage your child to be as active as possible, your child needs to know you understand that some activities are not easy. It is helpful to balance periods of activity with periods of quieter play to avoid exhaustion.
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Most neuromuscular conditions themselves do not cause pain; however some children may be troubled by muscle cramps or joint pains. Advice and regular monitoring by a physiotherapist will be beneficial for most children.
Physiotherapists are likely to provide a programme of stretches and exercises to maintain a good range of movement in the joints, which will reduce discomfort. Gentle massage and warmth can help relieve cramps.
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Information about respite care.
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Your child may benefit from play therapy or other forms of therapy. Play therapy is a therapeutic method that explores a child’s natural means of expression to help them cope in their world. We offer free play therapy to promote self-confidence, imagination, creativity, concentration, communication, problem-solving skills, self-esteem and most importantly happiness in children. This service is available to children with muscular dystrophy/neuromuscular conditions and their siblings. You can find out more by contacting us
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MDI - Our Family Support Workers offer practical and emotional support on a wide range of issues to carers of adults and children with muscular dystrophy / neuromuscular conditions. You can find out more by contacting us
Family Carers Ireland -Caring for a loved one can be rewarding, but it can also be difficult, frightening and isolating. It shouldn’t be. Family Carers Ireland want carers to know they have the support they need to care safely, to make it less of a battle and to know they are not alone. Carers’ support
The HSE recognises the valuable contribution of carers who care for family members, relatives and friends. - Carers information
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Caring for a child with a disability find out more around these areas here -
Siblings
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Explain that their sibling may need additional help to do things and needs to attend appointments. Encourage the sibling to help with task their sibling needs help with.
Make time for you and the sibling to do activities together so they feel they are getting one-on-one time as well.
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Consider the impact on siblings. It is best to inform them shortly after you find out the diagnosis and continue to include them in discussions. Siblings are likely to have questions (and often worries) about their brother or sister too. It can be difficult to judge how much to tell siblings, particularly if there is a large age gap. Generally, it is important to ensure the siblings don’t know more about the condition than the child living with it. It is a big responsibility to expect a child to hold on to this sort of information.
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Offer them the opportunity to meet with others outside of the family (such as a nurse or doctor on the medical team) to ask questions; they can ask questions of these people without worrying about upsetting family members. If they
do not have a ready source for information, they may look elsewhere in less appropriate places. Make sure that you address the needs of siblings for their own personal development. MDI’s Youth Service Programme offers support to siblings of children and young people with muscular dystrophy. You can find out more by contacting us
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Home - Sibs - Sibs exists to support people who grow up with or have grown up with a disabled brother or sister. It is the only UK charity representing the needs of over half a million young siblings and over one and a half million adult siblings.
Extra activities for children
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Sports Inclusion Disability Officer (SIDO) aim to increase the participation of people with disabilities in sport, fitness and physical activity throughout the country. This is achieved through working in partnership with statutory agencies, sports clubs, community groups, facility providers, schools, disability service providers and people with disabilities. You can find contact details for the Local Sports Partnership in your area as they are the point of contact for any queries relating to SIDOs or the Social Inclusion Disability Programme
Schools Inclusion
Dún Laoghaire-Rathdown Sports Partnership offers local Primary and Secondary school teachers and SNAs further training in the inclusion of a pupil with a disability into the PE class.
CARA Disability Awarenes Workshop (2 hours)
CARA Inclusive PE Workshop
Inclusive Clubs/Disability Awareness Workshops
Dún Laoghaire-Rathdown Sports Partnership offers workshops around the inclusion of people with disabilities into sport. We aim to support the work of coaches and tutors in the application of their coaching knowledge and skills to create an environment that encourages people with disabilities to participate in sport and physical activity.
CARA Disability Inclsuion Training (6 hours)
CARA Autism in Sport Workshop (3 hours)
For more information on any of the above mentioned workshops contact Brian O'Donnell, Sports Inclusion Disability Officer, Dun Laoghaire Rathdown Sports Partnership on 01 271 9506 or email bodonnell@dlrcoco.ie
DLR Sport Partnerships - Disability Inclusion Workshops (dlrsportspartnership.ie)
IWA Sport’s mission is to develop and promote sport, physical and recreational opportunities for people with a physical disability to reach their full potential. Their vision is for everyone with a physical disability to enjoy sport, physical and recreational activities on a fully inclusive basis in any environment. They have sports clubs and activities in all parts of the country and welcome new members. You can find out more at IWA Sport’s.
Riding for the Disabled Association Ireland- RDA Ireland provides the opportunity for individuals, with physical or intellectual disabilities, to horse ride or carriage drive and this in turn provides therapy, fitness, development of skills, socialisation, achievement and most importantly fun. More information at RDA Ireland.
Cathy Byrne
National Coordinator
Mary Walsh
Designated Liaison Person and
National Welfare Officer
Association of Irish Powerchair Football - This sport is very popular among our members of all ages.
Association of Irish Powerchair Football
+353874117911
Exercise
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Keep your child as active as possible and try to make the activities fun. There is no need for anything excessive; normal play is fine.
If appropriate, encourage walking. Your child may tire more quickly than their friends, so do make allowances for this. Activities such as walking up hills, and/or climbing stairs, may be particularly difficult. If your child can manage them, swimming, cycling and horse riding are excellent physical activities.
Disclaimer: Please check with your doctor before starting exercise. Please note that MDI shares information about neuromuscular conditions. We do not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. -
Yes, it would be good to incorporate exercise into your day-to-day life. It is important with muscular dystrophy you do regular exercise or movement to maintain the strength you have and slow down the weakening process. You can do things like strength training, cardio, stretches or household chores.
Disclaimer: Please check with your doctor before starting exercise. Please note that MDI shares information about neuromuscular conditions. We do not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. -
The following exercise equipment may be of interest to you:
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Exercise caution when selecting the type of strengthening exercise for some muscle-wasting conditions. If you haven’t done any regular activity or exercise for a while, start slowly and gradually build up.
Stretches - Try to do this as part of your daily routine or at least two/three times a week.
For example, stretches (lying, seated or standing), Pilates or yoga. Static or passive stretch.
You can include stretching exercises in your activity/exercise programme. It is easier and safer to do your stretches when your muscles and joints are warm. Good times to do stretches would be once you have been active or after a bath or shower.
It is important to have good muscle length and range of movement for day-to-day activities. For example, having enough range in your shoulder joint will help for washing and dressing activities.
A number of very rare neuromuscular conditions involve tightness/contractures of the spine or other joints. In this case, the goal of these activities would be to keep the flexibility you have, rather than gain more.
Please take care that you do not over-stretch weak muscles or joints that are already very mobile.
Stretching sensation but no pain.* 30- to 40- second holds. Repeat two to four times Do not ‘bounce’. If you have impaired or absent feeling or no appreciation of pain.
Strength Training - Try to do this as part of your daily routine or at least two/three times a week.
Example, using exercise bands, small weights or Tai Chi/Pilates yoga or mat work style exercises. Individual programme: seek advice about which muscles to strengthen.
Generally, strengthening activities/exercises involve the major muscle groups.
It is important to think about strengthening the muscles of your arms and legs, stomach and back (‘core’) muscles.
Improved core strength can help improve your posture and balance, which can reduce the risk of falling and can help with day-to-day activities, such as wheelchair transfers.
At least twice a week. Stop before fatigue. One set of eight to twelve repetitions for each muscle group identified. Gradually increase to three sets as you are able. Low/moderate weights; increase number of repetitions rather than weight.
When you start a new strength exercise you might expect to be a little bit achy, but any muscle soreness should have gone after 48 hours.
Aerobic - Try to make being active part of your daily routine or try to be active in these ways at least five times a week.
Examples of aerobic exercise include walking, swimming, using an exercise bike, propelling your wheelchair, doing housework and gardening. Any activity that uses large muscle groups and that can be maintained continuously and rhythmically for a period of time.
Aerobic activity/exercise improves the function of your heart, circulation and lungs. By improving your general fitness, this type of activity is also good for your overall health and may help prevent chronic disease.
You should be comfortably out of breath but still able to talk and aim for 30 minutes intermittent bouts aiming for at least 10 minutes. Start with what you can and build on it.
Make sure to warm up.
**In very rare circumstances, people with muscle-wasting conditions can experience changes in the colour of their urine after exercise (in other words, urine that appears the colour of black tea or cola).
Attend A&E if you notice such a change, as this could be a condition called myoglobinuria.**
Disclaimer: Please check with your doctor before starting exercise.
Transport
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Information relating to disabled parking permit.
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First time applicant
In order to apply for a first-time parking permit, the applicant must submit a completed application under one of the following three eligibility options as outlined in How to qualify for a permit:
Section A: Please choose the option below which best describes the eligibility criteria of the applicant for a disabled parking Permit.
A) Applicant requires to have their medical practitioner or consultant certify their medical and mobility eligibility.
B) Applicant is a primary medical certificate holder and will automatically qualify for a permit.
C) Applicant meets blind certification criteria.
Please note: A primary medical certificate is not the same as a medical card.
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Yes, the Irish Wheelchair Association has a motoring school for people with disabilities.
The Irish Wheelchair Association cater for a wide range of conditions and disabilities through their fleet of adapted cars and team of experienced driving instructors. They provide training for people who wish to learn to drive or who are returning to driving.
They operate 10 driving schools nationwide located in:
· Clane
· Carrick on Shannon
· Clontarf
· Galway
· Kilkenny
· Letterkenny
· Limerick
· Mullingar
· Navan
· Wexford.
All of their driving school vehicles are automatic and fitted with a variety of adaptations.
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VRT and VAT Relief Scheme for Disabled Drivers
The VRT7 scheme provides a range of tax reliefs in connection with the purchase and use of motor vehicles. Motability Ireland are the experts when it comes to the VRT 7 scheme and what you are entitled to. Relief in respect of Vehicle Registration Tax (VRT) and Value Added Tax (VAT) may be obtained on the purchase of a vehicle, with a maximum of:
€10,000 for a driver with a disability;
€16,000 for a passenger with a disability.
The scheme is open to individuals who meet the specified medical criteria and have received a Primary Medical Certificate to that effect. You can apply for relief either as a driver with a disability or a passenger with a disability. Alternatively, there is provision for a family member of a passenger with a disability to apply.
Tax relief for vehicles purchased for use by people with disabilities.
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You can find more information about on how people with disabilities can travel safely to, from and within Ireland at Accessible Travel with Transport For Ireland.
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You can become a member of Disabled Drivers Association. You can also join a the Disabled Drivers Association Facebook page.
Travel
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Yes, alongside your travel insurance policy it is also recommended to get (and bring with you) a European Health Insurance Card (EHIC). You can apply for the EHIC online on the following link: European Health Insurance Card (EHIC)
If you are travelling in Europe, it gives you access to public health services at no cost. If you have a smart phone, you can download the EHIC app to help you navigate overseas health systems. Remember, your card needs to be renewed every five years. While some sites will try charging for the service it is free through the official site which can be found at European Health Insurance Card (EHIC)
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You can also plan ahead by using the beaches.ie site. Once you input search criteria, you can add filters, such as ‘Disability Access’ and find wheelchair-accessible beaches. You can add a separate filter for beach wheelchairs to find out where to go in your area.
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Marysol - Relaxing and lively holidays for disabled and able-bodied guests in a barrier-free environment
Wheel the world – Accessible travel experiences around the world
Medical Services
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Apply here for a medical card.
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The primary medical certificate is issued by the HSE and certifies that a person is a severely disabled and permanently disabled person for the purposes of Disabled Drivers and Disabled Passengers Regulations 1994.
You must apply to your local HSE centre for an application form for a primary medical certificate.
For your information, if the HSE refuses the application for a primary medical certificate, you can appeal the refusal to the Disabled Drivers Medical Board of Appeal, National Rehabilitation Hospital, Rochestown Avenue, Dun Laoghaire, Co. Dublin
Neurologist:
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A neurologist is a specialist physician who diagnoses and treats conditions of the brain, spinal cord and nerves. This can include muscle conditions and disorders that affect thinking and behaviour.
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A neurologist can help with an initial diagnosis. They can help to insure you get the correct care.
Physiotherapy:
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Physiotherapy helps to restore movement and function when someone is affected by injury, illness or disability. It can also help to reduce your risk of injury or illness in the future.
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Most people with neuromuscular conditions benefit from regular physiotherapy. A programme of exercises and stretching is likely to be suggested. For a child, make these fun and part of the daily routine.
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The referral can be made by your neurologist or GP.
Speech therapy:
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They can assess the muscles used to swallow as the same muscles are used for talking and swallowing. They can then give you advice and exercises to help.
If further assessment is required, they may refer you to a different department.
Cardiologist:
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A cardiologist is a physician who is an expert in the care of your heart and blood vessels. They can treat or help prevent a number of cardiovascular problems.
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Unfortunately, sometimes muscular dystrophy can affect the heart so it is important to get regular checks done on the heart.
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ECG
An electrocardiogram (ECG or EKG) is a quick test using stickers on the chest, arms, and legs to measure the electrical activity of the heart. This test is useful for the detection of heart rhythm abnormalities as well as for enlargement of the heart chambers.
Echocardiogram
An echocardiogram is an ultrasound movie of the inside the heart, like the ultrasounds done during pregnancy. Images are obtained by placing an ultrasound probe on the chest, the belly and the neck to see the heart from every angle.
Chest x-ray
A chest X-ray is an imaging test that uses X-rays to look at the structures and organs in your chest. It can help your healthcare provider see how well your lungs and heart are working.
Chest MRI
A chest MRI (which stands for magnetic resonance imaging) is a scan that uses a magnetic field and radio waves to take detailed pictures of the structures inside your chest and chest wall.
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No, these tests are not painful.
Respiratory consultant:
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They will check and monitor your breathing.
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Unfortunately, sometimes muscular dystrophy can affect the lungs so it is important to get regular checks done on your breathing.
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Pulmonary function tests (PFTs) are non-invasive tests that show how well the lungs are working. The tests measure lung volume, capacity, rates of flow, and gas exchange.
Other:
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As the name suggests, these are splints worn at night. When a joint cannot move through its full range, because of tightened muscles, this is known as a contracture. Night splints help to delay contractures because they hold the joint in a good position during the night. Splints are made from a variety of lightweight materials.
A child should, preferably, wear night splints throughout the night but some children find this uncomfortable. It may be necessary to find a compromise, for example, wearing the splints on weeknights only, or for just half the night. Some children find it easier to wear just one splint at a time, on alternate nights. If it becomes very difficult, try persuading your child to wear them in the evenings while watching television.
Night splints can be uncomfortable in hot weather and wearing a cotton layer underneath them often helps. Sometimes the orthotist (someone who specialises in assessing for and supplying orthoses, such as supportive footwear or splints) will make air holes in the splint, which can help. It can also be difficult to turn over in bed when wearing splints. If night splints are uncomfortable, or your child grows out of them, contact your physiotherapist or orthotist.
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Occupational therapists work with people in the community to do the everyday activities they want and need to do when faced with illness, injury, disability or challenging life circumstances or events.
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You can get a genetic test at the Department of Clinical Genetics, Children’s Health Ireland at Crumlin. In order to be referred to their service, they require a referral letter from a GP or other medical professional.
Clothing
Adults:
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es, here are some sites that do clothing for adults with a disability.
ADDAPTAFASHION’s goal is to provide specifically adapted, fashionable yet functional clothing for people with disabilities and additional needs or any temporary disability or restrictions in movement. They provide clothing with modifications and certain fastenings and closures to make dressing/undressing easier and more manageable for people with additional needs. They are based in Donegal.
Able2 Wear - Specialist wheelchair clothing and adaptive clothing
Able2 Wear supply wheelchair clothing and adaptive clothing and work closely with wheelchairs users, carers and professionals to develop a range of disabled clothing to meet specialist needs.
CHARIOT – CHARIOT is an Irish-owned brand of lifestyle apparel, designing quality sustainable and ethical clothing. Their range of adaptive clothing, Roll Range, is designed from real experience for those who live from their wheelchairs.
Adaptive range for men – Tommy Hilfiger
Kids:
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That’s great encourage your child to be independent.
To make getting dressed easier here are some useful tips:
· Loose clothing
· Clothes without buttons or zips
· Ankle socks instead of long socks (if your child can’t pull up long socks)
· Shoes with velcro
Encourage any progress they make and help where needed. If you feel your child can try buttons, zips, and laces, encourage them to try clothes with these.
A child should, preferably, wear night splints throughout the night but some children find this uncomfortable. It may be necessary to find a compromise, for example, wearing the splints on weeknights only, or for just half the night. Some children find it easier to wear just one splint at a time, on alternate nights. If it becomes very difficult, try persuading your child to wear them in the evenings while watching television.
Night splints can be uncomfortable in hot weather and wearing a cotton layer underneath them often helps. Sometimes the orthotist (someone who specialises in assessing for and supplying orthoses, such as supportive footwear or splints) will make air holes in the splint, which can help. It can also be difficult to turn over in bed when wearing splints. If night splints are uncomfortable, or your child grows out of them, contact your physiotherapist or orthotist.
Independent Living
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A fall detector could be used or pull cord in different areas of the home.
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National Learning Network run a number of courses which lead to a QQI Level 2 Major Award in Skill for Life. These courses equip students with foundation level personal, social and work-related skills that will enable them to progress to greater levels of independence and participation in their communities.
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HSE-Funded Assisted Living - You may be entitled to a state-funded assisted living or homecare service if you or a loved one are in need of support to live independently at home and to do the everyday tasks you want to do. Irish Wheelchair Association is the biggest provider of HSE-funded assisted living services for people with disabilities in Ireland. They provide a flexible service across the country carried out by skilled frontline healthcare workers called personal assistants.
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As this can be a challenging area for MDI members, we suggest you get expert advice from a professional, such as a solicitor. Also, the following two organisations may be able to provide free guidance:
Citizens Information
If you phone them, they may be able to advise on your specific situation. Phone 0818 07 4000. Here is a link to information on mortgage protection from their website. Insurance protection on mortgages (citizensinformation.ie) As you will see it includes a statement that you are not required to take out mortgage protection insurance if you cannot get this insurance, for example, because of a current serious illness.
National Advocacy Service (NAS)
The National Advocacy Service provides a free and confidential advocacy service to adults with a disability, aged 18 years. Phone: 0818 07 3000
Entitlements
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VAT refunds on aids and appliances for people with disabilities- If you live in Ireland and you have a physical or mental disability, you may get a refund of Value-Added Tax (VAT) on certain aids and appliances that you need.
A refund may also be available to someone who pays for aids and appliances that are for the exclusive use of someone else who has a disability.
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Work and disability -You can work and earn up to €165 a week (after paying PRSI, pension contributions and union dues) without your DA payment being affected. If you earn more than €165 a week, 50% of your earnings between €165 and €375 will not be taken into account in the DA means test. Any earnings over €375 are assessed in full.
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Extra social welfare benefits you may be entitled too.
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A Housing Adaptation Grant for Older People and People with a Disability is available from local authorities if you need to make changes to a home to make it more suitable for a person with a physical, sensory or intellectual disability or mental health difficulty.
Employment
Information for job seekers and employees with disabilities:
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Yes. The Workplace Equipment Adaptation Grant is designed for people with a disability who've been offered employment, or are about to be re-deployed, promoted or become self-employed. If any of these changes means a more accessible or adapted workplace is required for you to do your job, your employer may get a grant towards the costs.
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The Ability Programme is a skills and employment programme for people with a physical disability aged 18 to 29 years. It’s run by the Irish Wheelchair Association and provides holistic, person-centred coaching to enable a person to become an independent jobseeker or employee.
The EmployAbility Service is an employment and recruitment service that helps people who have a disability, an injury or and an illness to get and to keep a job. It gives a number of supports, such as a job coach who works with both jobseekers and employers. It used to be called the Supported Employment Service.
The Mentorship Programme is run by the Open Doors Initiative, an organisation that creates pathways to work through training, education, employment and entrepreneurship. The goal is to help people with disabilities meet their full potential for further education opportunities, employment, or self-employment. Mentors can serve as role models and share experiences while helping to support you on your employment pathway or further education goals.
Towards Work is a non-profit organisation dedicated to creating pathways to employment, entrepreneurship and further education for people with disabilities living in Ireland. Supports include further training and skill development, CV preparation advice and mentorship.
Willing Able Mentoring (WAM) Programme
Willing Able Mentoring (WAM) is a work placement programme which aims to promote access to the labour market for graduates with disabilities and build the capacity of employers to integrate disability into the mainstream workplace. The WAM Programme offers graduates with disabilities the chance to undertake a minimum six month, paid, mentored work placement with high profile Irish employers. WAM is run by AHEAD, an independent non-profit organisation working to create inclusive environments in education and employment for people with disabilities.
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Intreo is the Irish Public Employment Service and your single point of contact for all employment and income supports.
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If you are getting Disability Allowance (DA), you may be allowed to work and keep your payment, depending on your income.
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More broadly, there are other schemes and initiatives to encourage unemployed people to return to work. The schemes are aimed at people on certain social welfare payments for a specific period. Each scheme has different rules, so it’s important to check the detailed information about each scheme and whether your social welfare payment may be affected.
The Community Employment scheme helps the long-term unemployed and people with disabilities to get back to work.
The Community Services Programme aims to address disadvantage by supporting local community activity and providing local employment opportunities for certain groups of people, including people with disabilities.
The Rural Social Scheme provides income support for farmers and fishermen who are receiving long-term social welfare payments such as disability payments.
The Work Placement Experience Programme (WPEP) gives people who have never had a job or who have lost their job a chance to get work experience. You can qualify for WPEP if you are getting Disability Allowance.
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If you have a disability and want to start your own business, you may be eligible for the Back to Work Enterprise Allowance.
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Employment rights and conditions
Equality legislation and reasonable accommodation
It’s illegal to discriminate against someone in employment based on a disability. This includes training and recruitment. However, an employer is not obliged to recruit or keep a person who is not fully capable of doing their job. This is outlined in the Employment Equality Acts 1998-2015.
Reasonable accommodation is where an employer makes a change to how a job is carried out or makes changes to the workplace to allow the employee with a disability to fully do the job and enjoy equal employment opportunities. You can read about reasonable accommodation on the Employers for Change website. However, under EU legislation, employers are not obliged to provide special treatment or facilities if the cost of doing so is excessive or disproportionate.
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You should be aware of your rights and the obligations potential employers have towards you under equality legislation. It is up to you to decide whether to tell potential employers about your disability, particularly if your disability is not obvious (such as a chronic illness or a mental illness). While you may have your reasons for keeping your disability private, your employer cannot accommodate any special needs you have if they don't know about your condition.
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If you think you have been discriminated against because of your disability in work, vocational training or access to employment, you can make a complaint to the Workplace Relations Commission using the online complaint form.
You can also read or download a free guide to taking an employment equality case from the Community Law and Mediation (CLM) website. CLM also offers free legal information, advice and mediation services.
The Irish Human Rights and Equality Commission provides information about equality in work and discrimination issues.
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Now you can start using your knowledge and skills from your degree and be able to utilise them in the workplace, but to do that, you must start the job hunt!
Information for employers:
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The Employment Equality Acts oblige employers to make reasonable accommodation for people with disabilities. An employer must take ‘appropriate measures’ to meet the needs of disabled people in the workforce.
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There is a number of support schemes available to you if a member of your staff acquires a disability, or if you hire a new staff member who has a disability. These employment supports are provided by the Department of Social Protection.
Workplace/Equipment Adaptation Scheme can help you financially if you need to make changes to your workplace or need to buy new equipment to support a staff member who has a disability.
The Employee Retention Grant Scheme can help you to retain an employee who has acquired an illness, condition or impairment that affects their ability to carry out their job.
The Disability Awareness Training Scheme is open to all companies in the private sector. Disability awareness training can help your staff provide the best service to customers or clients with disabilities and maintain good working relationships with colleagues with disabilities.
The Wage Subsidy Scheme provides financial incentives to employers, outside the public sector, to employ certain people with disabilities who work between 21 and 39 hours a week.
Can I apply for the Wage Subsidy Scheme if the employee is getting disability allowance?
Yes. An employer can apply for the Wage Subsidy Scheme whether or not an employee keeps their entitlement to disability allowance.
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Employers for Change offer an employer disability information service which empowers employers with all the information and advice needed to hire, employ, manage and retain staff with disabilities. Their website also gives information on:
Understanding disability
Inclusive recruitment
Managing disability in the workplace
Reasonable accommodation
Health and safety.
Recruitment and retention guide
For guidance on recruitment and retention, see the Disability Resource Pack for Positive Action for the Recruitment and Retention of People with Disabilities in the State Sector, produced by the National Disability Authority.
Guide on supports within the workplace for people who experience mental health difficulties
Just Ask - a Handbook for Employers and Employees is a handbook to assist employers and employees to develop a shared understanding of the practical accommodations and supports that can be provided within the workplace for people who experience mental health difficulties.
Education
Information for Parents:
Preschool:
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AIM is a model of supports designed to ensure that children with disabilities can access the Early Childhood Care and Education (ECCE) programme, a universal two-year preschool programme available to all children within the eligible age range. AIM is a child-centred model, providing levels of progressive support based on the needs of the child and the preschool setting.
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AIM Inclusive Play was introduced in 2018 as a set of sensory and educational play resources to support inclusive practice within Early Learning and Care settings. The AIM Inclusive Play (AIP) pack was supplied to over 4,000 Early Learning and Care settings in 2018. These resources included equipment, toys and materials to support the development of coordination and audio, visual and tactile skills among all children, and in particular, children with a disability.
Primary School:
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The National Council for Special Education (NCSE) was set up to improve the delivery of education services to persons with special educational needs arising from disabilities.
The aim of the NCSE is to support an inclusive education system that enables students and adults with special educational needs to achieve their potential.
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They plan, coordinate and review the supply of educational supports to support students with special educational needs in line with the Department of Education policy
They give the Minister for Education expert, independent, evidence-informed policy advice on special education for students and young adults.
They commission, conduct and share research on all aspects of special education
They review and advise on the continuing options available in higher, adult and continuing education, and rehabilitation and training for adults with special educational needs
They provide information on special education to all who need it
They have five regional teams. Click here for more information
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SENO plan, coordinate and review the provision of additional education supports to schools that enrol students with special educational needs in line with Department of Education policy.
SENOs support parents and guardians by providing information, establishing special classes and engaging with other professionals working with your child.
SENOs advise and support parents around the availability of special classes, special schools and other educational supports.
SENOs process Transport and Assistive Technology applications and forward them to the Department of Education for sanction.
SENOs provide parents with advice and useful tips on transition from preschool to school, from primary school to post primary school and onto adult services.
You can contact your local SENO through the following:
Contact NCSE head office and you will be put in touch with your SENO. Ph : 01 – 6033200
You can find your SENO by clicking on the Schools Information map and locating your local school.
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Special needs education is the educational arrangements that are put in place for children with disabilities. Not all children with disabilities have special education needs. You have special educational needs if your capacity to participate in and benefit from education is restricted due to an enduring physical, sensory, mental health or learning disability.
Children with special educational needs may be in ordinary classes in mainstream primary schools or in special classes in these schools. They may get additional educational support from special education teachers and care support from special needs assistants (SNAs).
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Some children are already at school when they are diagnosed with a neuromuscular condition, while others may not yet be at preschool age.
A diagnosis of a neuromuscular condition does not mean your child cannot attend a mainstream school. This will depend on a variety of factors, including your preference and the inclusiveness of the school. Most children with muscle-wasting conditions are able to attend a local primary school along with their friends.
When selecting a school for your child it is important to explain to the school principal that your child has a neuromuscular condition. Knowing this will be helpful for the teaching staff, enabling them to plan appropriately for your child.
Have conversations with your child’s school about playground safety and the amount of activity your child can manage and review this regularly.
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Mainstream class in a mainstream school
A mainstream class in a mainstream primary or post-primary school where the class or subject teacher has primary responsibility for the progress of all students in the class, including students with special educational needs.
Additional teaching support from a special education teacher may be provided to a child based on their needs. Click here for more information.
Special needs assistants (SNAs) are allocated to schools to work with children who have specific care needs. They provide non-teaching care support. SNAs support pupils who have care needs resulting from a disability, behavioural difficulties or a significant medical issue.
Special classes in mainstream schools
Special classes in mainstream schools offer a supportive learning environment for students with more complex needs where mainstream classes would not, or have not been able to, meet their needs.
In order to be placed in a special class a child must have a professional report stating that he/she has a special educational need and that this need is of such complexity that a special class placement could be considered.
Special classes have a lower student-teacher ratio specified according to category of disability. This means that classes have small numbers of students, for example, a special class for children with moderate general learning disabilities will have one teacher for every eight children.
Placement in a special class is a flexible arrangement that may change as a student’s learning develops. Where possible, students in special classes should be educated alongside mainstream peers for some part of the day or week, or for some activities or subjects, in line with their needs and abilities.
Special Schools
Special schools support students with more severe and/or complex special educational needs in cases where a full-time mainstream placement would not be in the student’s best interest. These students may find the demands of mainstream schools very difficult.
In order to be placed in a special school a child must have a professional report stating that he/she has a special educational need and that this need is of such complexity that a special school placement could be considered.
Special schools tend to have fewer students. They have a lower student-teacher ratio specified according to category of disability. This means that classes have small numbers of students. A special school for students with a moderate general learning disability for example, has one teacher for every eight students.
Click on our School Information Map to find a Special School in your area.
If you require advice to determine what educational supports may best suit you child your local SENO can help.
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Special needs assistants (SNAs) are allocated to schools to work with children who have specific care needs. They provide non-teaching care support. SNAs support pupils who have care needs resulting from a disability, behavioural difficulties or a significant medical issue. This might include a significant impairment of physical or sensory function or where their behaviour makes them a danger to themselves or other pupils. A pupil's needs could range from needing an assistant for a few hours each week (for example, to help feed or change or bring them to the toilet) to requiring a full-time assistant.
SNAs may work with more than one child and can also work on a part-time basis. The Department provides more information about the Special Needs Assistants Scheme in Circular 0030/2014.
The National Council for Special Education (NCSE) has published an information booklet for parents, Children with Special Educational Needs (pdf).
Application for Assistive Technology is made through the student’s school management. A recent assessment from a relevant professional detailing the nature and extent of the student’s disability and the equipment most appropriate to their needs must accompany the application. The school then sends the application to the local SENO.
The SENO processes the application to determine if it meets Department of Education criteria for this scheme. The SENO then sends the form to the Department of Education.
The Department approves applications for assistive technology and notifies the school of the outcome.
Home Tuition Scheme
The Home Tuition Scheme provides funding to parents to provide education at home for children who, for a number of reasons such as chronic illness, are unable to attend school. The scheme is also available to children with special educational needs who are awaiting a suitable educational placement.
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Yes, swimming is good for your child. Maybe take the child swimming first yourself and see if they need additional support. If so, arrange this with the school.
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The school will apply on your behalf. Talk to your child’s teacher or school principal and raise your concern that your child needs a SNA.
You can also discuss with your local Special Educational Needs Organiser what learning supports or additional resources may be available.
Schools should apply to the National Council for Special Education (NCSE) which administers and processes applications for special educational resources using its network of Special Educational Needs Organisers.
Application forms for special educational resources and a list of Special Educational
Needs Organisers are available on the NCSE website.
Application forms for the Home Tuition Scheme are on the website of the Department of Education.
Home-based July Education Programme application forms are also available on the Department’s website.
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Other children in the class may ask about your child’s additional needs. Discuss what explanation should be given with teachers and your child. You may want someone to explain to the class that your child has a medical condition that causes their muscles to weaken and waste, and which makes certain activities difficult or impossible. Let the class know how they can be supportive by, for example, holding doors open. Only do this with your child’s consent.
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Students who have been assessed and recommended for a special school place by a relevant professional.
Students with more severe levels of disability may require placement in a special school if their educational needs cannot be met in a mainstream school.
Secondary School:
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Secondary school students with special needs may have special arrangements made for them while sitting State examinations such as the Leaving Certificate and Junior Certificate. Candidates with disabilities (for example, visual impairments, learning difficulties, motor and mobility impairments and so on) can apply through their school for the Scheme of Reasonable Accommodations at Certificate Examinations (RACE).
Scheme of Reasonable Accommodations at Certificate Examinations (RACE)
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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 special education 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.
The following support services are available for students with disabilities and special educational needs attending post-primary schools:
Special education teacher
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Yes, it is good for your child to mix with their peers. If you have concerns check the venue is accessible or talk to the venue and ask them to let your child in an accessible way.
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Talk to the school and make them aware of this. If your child doesn’t have a SNA maybe ask can a friend go from class to class with your child.
How will your child be included in clubs and after-school activities?
Is transport available for after-school clubs and are they accessible?
Does the school positively promote work placements for pupils with disabilities?
Do pupils get a chance to mingle without adult supervision?
Third-level Education:
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DARE is a third level alternative admissions scheme for school-leavers under the age of 23 as of 1 January 2023 whose disabilities have had a negative impact on their second level education. Applicants to DARE can present with an Irish Leaving Certificate, A-Levels and/or other EU qualifications. DARE offers reduced points places to school leavers who, as a result of having a disability, have experienced additional educational challenges in second level education.
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Yes, you can you should register with Disability or Access services.
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You can apply to SUSI and may be eligible for a special rate.
The Fund for Students with Disabilities (FSD) is to assist higher education institutions in ensuring students with disabilities have the necessary assistance and equipment to enable them access, fully participate in and successfully complete their chosen course of study.
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Students who require wheelchair access should make direct contact with the college(s) of their choice to check how accessible the buildings are, and to give the college an opportunity to make the necessary modifications in time. Only a few of the Irish colleges are fully wheelchair accessible but efforts are being made by individual colleges to address this problem. It is useful to visit the college/university before the start of term for mobility orientation, as the first weeks on-campus are crowded and can be extremely disorienting for some students.
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Research carried out by AHEAD shows students with disabilities are now studying in all subject areas in Higher Education so when you are considering the difficulties your disability might pose in going for a particular course, remember that it's likely that students with the same disability have gone before you.
If you are concerned about a particular aspect of a course then consult your career guidance counsellor. It may also be helpful to contact the disability officer in the colleges you are considering to discuss the matter and chat about how they might support you in overcoming any barriers.
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All students looking to get a college place in Ireland must apply through the Central Applications Office (CAO).
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Teachers/School:
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AIM supports are provided through the ECCE programme. The main supports are grouped into universal or targeted supports. Universal supports are designed to create a more inclusive culture in Early Learning and Care settings, through training courses and qualifications for staff. Where universal supports are not enough to meet the needs of an individual child, targeted supports are available to ensure the child can meaningfully participate in pre-school. In addition to targeted and universal supports, AIM also provides universal design guidelines for Early Learning and Care settings and AIM Inclusive Play resources.
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In September 2017, a new assessment was introduced to determine how special education teachers are allocated to mainstream schools. Under the new system, each school gets a single allocation of special education teachers. The number of special education teachers allocated to a school is determined by the size of the school and its educational profile.
A school’s educational profile is broadly based on the number of students with complex special educational needs, the results of standardised tests and the social context of the school taking account of disadvantage and gender. It is designed to give a fairer allocation of special education teachers to each school. It recognises that all schools need an allocation for special needs support, but provides a graduated allocation which takes into account the actual level of need in each school.
Schools are provided with the necessary resources in advance so that children with special educational needs can be enrolled into schools and access the additional teaching supports they need.
Further information can be found in the Department of Education’s s Circular0013/2017.
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In addition to enabling a child to fulfil his or her academic potential, schools should also help children make friendships and develop a self-identity outside the family. Schools can play a vital role in assisting, allowing and encouraging a child to live and think independently. The role of education is ultimately to ensure that children mature in their understanding of themselves and their future. It is important to ensure there is clear inclusion in a school and that teachers and pupils have good awareness of disability.
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The Guidelines for Primary Schools (Supporting Pupils with Special Educational Needs) aim to provide guidance to schools on the use, organisation and deployment of additional teaching resources for pupils with special educational needs. This guidance is provided in the context of a revised model for allocating special education teaching resources which was introduced by the Department of Education and Skills in September 2017. Guidelines for Primary Schools - Supporting Pupils with Special Educational Needs in Mainstream Schools
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Clear communication between home and school is vital for children with muscle wasting conditions. This may go beyond the normal requirements of home/school liaison. School staff, particularly those who work closely with the pupil, will need to work with the parents throughout the time their child is in school to be clear about the messages they want communicated to pupils. It is important to establish what parents have told their child about his or her condition as well as what, and how, they wish school staff to communicate about this.
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It is important to remember that the siblings of children with muscle-wasting conditions will have needs of their own. Some older siblings may well be aware of the diagnosis and prognosis, while others may be worried and not feel able to ask the questions they may have. Even younger children will be aware there is ’something different’ about their sibling. Many siblings can feel left out of what is going on, and may have feelings of loss, jealousy, guilt and anxiety. These are quite normal, as their lives have changed too. If you are concerned about the sibling of a child with a muscle-wasting condition, it is important to raise the subject, in a gentle manner, with the family and agree on an appropriate support plan. Siblings may benefit from having someone to talk to who is outside the family, and it could be helpful for them to know that there is an identified adult in school who can provide them with emotional support. A learning mentor could undertake this role.
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Home from Home Apartment
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Home from Home’ is a self-catering apartment. It is a self-contained fully wheelchair accessible apartment which is available for short term stays for people with a physical disability.
For more information please viist out dedicated Home From Home page here
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For the most up to date information regarding rates please contact us
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There are public buses that stop nearby; they are the 76 bus and the 26 bus..
Click here for Google Maps -
Home form Home is located at MDI House, 75 Lucan Road, Chapelizod, Dublin 20, D20 DR77
Click here for Google Maps
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Bed linens and sheets are provided but we do not provide towels. Home from Home
is fully equipped with wheelchair friendly equipment and appliances.
The apartment consists of the following equipment:
Hoists – both ceiling and portable hoists
Shower chairs
Shower trolly
Grab rails
Hi-lo electric / profile beds
Intercom system
Emergency call buttons
Adjustable kitchen work
Air mattresses.
Body dryer
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To book your stay in the MDI Home from Home Apartment, please phone the MDI office on +353-1-6236414 (during office hours, 9am-5pm) or use our contact form here
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No, MDI has a strict no smoking policy. If you wish to smoke, please use the courtyard at the back of the building.
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Check in is between 3-6pm, please make your approximate time of arrival known before arriving.
Check out is at 12 noon.
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In the unlikely event of a fire alarm going off in error, please follow the instructions below.
1. Ensure there is no fire.
2. Turn off the alarm by:
pressing any of the 4 arrows
press arrow number 2 four times and press enter
press the ‘silence the alarm’ button (2nd button in on the bottom row)
Press the reset button (5th button in on the bottom row)
The alarm should now have ceased and reset.
Please phone the alarm company 0818-464444 and explain that the alarm has gone off in error and explain there is no need to contact the fire brigade.
Please be aware failure to notify the alarm company could result in the fire brigade being contacted and calling to the premises resulting in a penalty of €500.
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If the alarm goes due to a fire there a directional drawing and lighting to the nearest exit. This information will be provided on our induction form.
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You will be given demonstrations on hoists and beds during your check in. Should you need further assistance there are manuals in the bedside lockers.
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The kitchen is equipped with a fridge freezer, oven, hob, dishwasher, washing machine, tumble drier and the necessary kitchen utensils.
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All rooms and corridors are heated by an under-floor heating system. Several thermostats are situated in the bedrooms and other areas. The default setting is 21 degrees; adjustments can be made. If you wish to turn off the heating in your room, please press and hold the button on the bottom right-hand side of the controller for three seconds.
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Yes, we welcome all assistance animals at the Home from Home Apartment.
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Yes, we have an active security system. The operation of the security system will be explained to you on the day of arrival.
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Yes, all numbers will be given to you in case of an emergency.
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Yes, the WEST COUNTY HOTEL is nearby. It’s just 50 metres to the left-hand side when you go out the gates.
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Yes, for channel numbers you can check the guest welcome book.