Tuesday, 30 May 2023

Supports Ireland - Disability Payments







Illness Benefit, Invalidity Pension, Disability Allowance, Supplementary Welfare Allowance, Domiciliary Care Allowance, Carers Allowance, and Information re Appeals Processes 



  (Please check for regular HSE Support updates at the end of the post which we will add as they occur)




Illness Benefit






Whether your employer pays you, or not, while you are out sick from work, you can apply for Illness Benefit which is a weekly payment. Illness Benefit is not linked to your employer's policy on pay for sick leave. However, if you get sick pay from work and Illness Benefit, you should ask your employer about any arrangements in place for this.
 
To qualify for Illness Benefit, you must:

  • Be aged under 66
  • Be medically certified as unfit for work by a medical doctor (GP).
  • Have enough social insurance (PRSI) contributions – see below.
  • Apply within 6 weeks of becoming ill.
 

 

Illness Benefit is paid for a maximum of:

2 years (624 payment days) if you have at least 260 weeks of social insurance contributions paid since you first started work


Or

 

1 year (312 payment days) if you have between 104 and 259 weeks of social insurance contributions paid since you first started work
 


Important to note:

Before your Illness Benefit payment is due to stop (max two years) you will be contacted by the Department of Social Protection (DSP) telling you when your payment will stop and giving you information on your options, for example:

Our advice is that you make a note of when your illness benefit is due to end when you first receive it and think about completing your application for either Invalidity Pension or Disability Allowance a few weeks/months before Illness Benefit is due to end, so that there is continuity of payments while you are not working, and because it can take a long time to get the follow-up payment you may be entitled to.  
 
If you are ill and likely to be permanently incapable of work and satisfy the PRSI conditions, you may get Invalidity Pension

If you do not get Invalidity Pension and you have a disability that is expected to last for a year or more, you may get a Disability Allowance

If you do not qualify for any other payments and your income is too low to meet your needs, you may get a Supplementary Welfare Allowance

 

Your Illness Benefit claim will be reviewed from time to time and you may be asked to attend for a medical assessment. This assessment will be carried out by a Medical Assessor, who is a doctor employed by the Department of Social Protection. The Medical Assessor will give their opinion on whether you are fit for work. You must attend for a medical assessment when asked, or your Illness Benefit will be suspended.

 
If your Illness Benefit is stopped, you have a right to appeal the decision. If you are getting credited contributions only and these are stopped, you can seek a review of the decision, but you do not have a right to appeal it.
 

Rate of Illness Benefit

Your Illness Benefit rate will depend on your average weekly earnings in the relevant tax year. Average weekly earnings are your gross earnings (without deductions) in the relevant tax year divided by the actual number of weeks worked in that year. Usually, no payment is made for the first 3 days of illness.
 


 

How to Apply for Illness Benefit

You must apply for Illness Benefit within 6 weeks of becoming ill.

If you don't apply within 6 weeks you may lose some of your payment. If there is a good reason for a delay in applying, your payment may be backdated.
 
Paper application form: 
You must get an Illness Benefit claim form (IB1) and a medical certificate called a ‘Certificate of incapacity for work’ from your family doctor (GP). You fill in the IB1 form and freepost it to the Department of Social Protection - see 'Freepost' address below.
 
Your GP can provide one medical certificate to cover the duration of your illness. Some GPs can complete the medical certificate online. If your GP cannot send it online, you will get a paper medical certificate which you must fill in with your personal details and freepost it with your IB1 form to the Department.

 

You do not pay for the ‘Certificate of incapacity for work’ as the Department pays the doctor an agreed fee. However, you may have to pay for the doctor to examine you.
 
Hospital Certs: if you are or have been an in-patient in a hospital, you should ask a hospital doctor to give you a pro forma letter which you can bring to your GP who then gives you the claim form (IB1) and medical certificate (Certificate of incapacity for work) with no charge. If you’re still in hospital, a family member can bring the pro forma letter to your GP on your behalf.
 
Freepost
Completed claim forms (IB1) and medical certificates (Certificate of incapacity for work) should be sent by Freepost to: Social Welfare Services, P.O. Box 1650, Dublin 1.
 


Appeals (& Reviews)

If you think you have been wrongly refused Illness Benefit, you can appeal the decision to the Social Welfare Appeals Office. You should appeal within 21 days of getting the decision.

We have heard that some people have avoided having to appeal a decision and asked for a review in instances where the reason for being turned down the benefit applied for does not make sense; see more below. Getting a review would save a lot of time, effort and energy, and would likely result in you receiving benefit sooner than if you appealed.



Reviews 

We advise you to check if asking for a review ahead of an appeal is a possibility for you. If the reason for turning you down Illness Benefit was "We don't believe your illness will last for one year" or "You must have been ill for a year and continue to be unwell for at least another year" and it has already been a year or longer since you had been diagnosed and signed off work when you applied for Illness Benefit, then we suggest that you get in touch with the Department of Social Protection and ask for a review based on that.
 
A review will involve explaining that the reason for turning you down doesn't make sense, quoting the line in the Department's decision letter you received. 
A review may require any new additional information you have to support evidence of chronic illness, e.g., a supporting letter from a consultant.



Where to appeal/ask for a review 

Illness Benefit
Department of Employment Affairs & Social Protection
P.O. Box 1650
Dublin 1
Ireland
 
Tel: (01) 704 3300 or 0818 928 400

Email: illnessbenefit@welfare.ie

 


 

 


Disability Allowance and Invalidity Pension


Access to the two schemes is different. Disability Allowance is subject to a means test. Invalidity Pension is subject to a Social Insurance test (5 years of paid contributions). Also, a person can access Disability Allowance from age 16, whereas access to Invalidity Pension is restricted to people aged over 18. In practice, given the social insurance contribution requirements for Invalidity Pension, those under 21 most likely wouldn’t qualify.


 
The medical test to qualify for the social insurance-based Invalidity Pension requires a person to be assessed as being permanently incapable of undertaking any work or must have been incapable of work for 12 months and is likely to remain incapable of work for another 12 months. In contrast, the social assistance-based (means-tested) Disability Allowance requires a person to be incapable of undertaking work suitable to their experience, knowledge,and skills for a period of 12 months.

 

The payment rates and tax treatment are different. Invalidity Pension has a higher rate of payment (currently €225.50 a week) than Disability Allowance (currently €220 a week). Disability Allowance is not taxable. Invalidity Pension payment is taxable. However, due to the rate of payment it is unlikely that tax would be imposed on their social welfare payment. Tax may be imposed if a person has other sources of income such that their total income is over the taxable income thresholds.



Arrangements for access to paid work are different. 

Disability Allowance recipients benefit from an ‘earnings disregard’. This means they can earn a certain amount before their payment rate is affected. If they earn more than the disregarded amount, their payment rate reduces gradually as their income from work increases. A person can earn a maximum of €495.10 a week from work and keep their entitlement to a minimum rate of Disability Allowance.

Invalidity Pension is different. If a person in receipt of an Invalidity Pension wants to take up some employment, they must leave that scheme and move to a different scheme, Partial Capacity Benefit (PCB). 

Under PCB, a person keeps a fixed proportion of their income support payment, related to their level of incapacity, irrespective of their earnings from work.


 
For example

In practical terms, a person on Disability Allowance earning, for example, €20,000 a year from employment will have their weekly payment reduced to €112.50 per week giving them a take-home income of about €497 a week when combined with their salary. By comparison, a person who transfers from Invalidity Pension to Partial Capacity Benefit would receive a similar take-home pay if they are assessed as moderately restricted (€497.37).




Why these differences exist

Payment systems evolved over time and resulted in differences between schemes. Our income supports can be traced back to the Poor Law of 1838 and the Workmen’s Compensation Acts of the 1880s, with Disability Allowance being introduced in1954 and Invalidity Pension being introduced in 1970. The different contexts within which the payments were introduced and the changes since their introduction led to differences that persist to this day.

 





Invalidity Pension

 

Access the Invalidity Pension Application Form via links above.


Invalidity Pension is a weekly payment to people who cannot work because of a long-term illness or disability and who are covered by social insurance (PRSI).

To qualify for Invalidity Pension you must meet both:

·       Social Insurance (PRSI) rules
·       Medical rules


You must have at least:

 

260 (5 years) paid PRSI contributions
48 weeks of paid or credited PRSI contributions in the last or second last completed year before the start date of your permanent incapacity for work. The start date is decided by the Department of Social Protection (DSP). It is usually after you have been unable to work for one year. But it can be less than one year if you are permanently incapable of work for life.


 

To meet the medical rules, you must:

 

Have been incapable of work for at least 12 months and be likely to be incapable of work for at least another 12 months (you may have been getting Illness Benefit or Disability Allowance during that time)
 
Or

 

Be permanently incapable of work (in certain cases of very serious illness or disability, you can transfer directly from another social welfare payment or from your job to Invalidity Pension).

A Deciding Officer in the DSP will decide if you meet the medical and PRSI rules for Invalidity Pension.


 

 

To apply for Invalidity Pension

Fill in an Invalidity Pension application form (INV1) (pdf). You can get a form from your Intreo Centre or Social Welfare Branch Office.


 

You can apply for Supplementary Welfare Allowance while you are waiting for your Invalidity Pension claim to be processed. SWA is a means tested payment. In a means test the Department of Social Protection examines all your sources of income. To get SWA, your income must be below a certain amount.



 

More about Invalidity Pension

HSE: https://www.gov.ie/en/service/d148b9-invalidity-pension/

Citizen’s Information: https://www.citizensinformation.ie/en/social_welfare/social_welfare_payments/disability_and_illness/invalidity_pension.html#:~:text=for%20Invalidity%20Pension-,What%20is%20Invalidity%20Pension%3F,Invalidity%20Pension%20is%20taxable.

 



Appeals

Information and advice about appealing a Deciding Officer's decision not to award you Invalidity Pension is available further below.




 


Disability Allowance

HSE: https://www.gov.ie/en/service/df6811-disability-allowance/

 

Citizen’s Advice: https://www.citizensinformation.ie/en/social_welfare/social_welfare_payments/disability_and_illness/disability_allowance.html


Please access the Disability Allowance Application Form via the links above


 

Disability Allowance (DA) is a weekly allowance paid to people with a disability. You can get DA from 16 years of age. You can get Disability Allowance even if you are in school.

 

To qualify for Disability Allowance you must:

 

Have an injury, disease or physical or mental disability that has continued for at least one year or is expected to continue for at least one year 
 
Be substantially restricted because of your disability from doing work that would be suitable for a person of your age, experience and qualifications

Be aged between 16 and 66.

Pass a means test – a means test looks at any income that you have – see ‘How your income is assessed for DA’ below 
 
Live in Ireland and meet the habitual residence condition 
 
If you qualify for DA, you may also get extra social welfare benefits with your payment and other supplementary welfare payments.


Medical Assessment

Your doctor must complete a report on your medical condition as part of the application form. This report is reviewed by one of the DEASP’s medical assessors.
 
The medical report will allow the DEASP to determine if you:

Have an injury, disease or physical or mental disability that has continued for at least one year or is expected to continue for at least one year.
 
DA is a means-tested payment. In a means test the Department of Employment Affairs & Social Protection examines all your sources of income. To get DA, your income must be below a certain amount. But your parent’s income is not taken into account when you are assessed for Disability Allowance.



More information on Disability Allowance via links below



Citizen’s Advice: 






Appeals

Information and advice about appealing a Deciding Officer's decision not to award you Disability Allowance is available below.



 




Appeals (& Reviews)



Reviews

We advise you to check if asking for a review ahead of an appeal is a possibility for you. If the reason for turning you down the benefit you applied for was "We don't believe your illness will last for one year" or "You must have been ill for a year and continue to be unwell for at least another year" and it has already been a year or longer since you had become ill/been diagnosed, and signed off work when you applied for the benefit, then we suggest that you get in touch with the Department of Social Protection and ask for a review based on that. 
A review will involve explaining that the reason for turning you down doesn't make sense, qouting the line in the letter you received. A review may require any new additional information you have to support evidence of chronic illness, e.g., a supporting letter from a consultant.





Advice re Applying for or Appealing Invalidity Pension or Disability Allowance


It can take several months to be processed for either Invalidity Pension or Disability Allowance and many have to go through an appeal process after being initially turned down. Feedback from people in the ME community shows a high failure rate on the first claim for Invalidity Pension and in many cases on the first claim for Disability Allowance. It is worth assuming that you will be refused and start preparing for your appeal soon after you have made your initial application, collecting any new evidence and supporting documentation, to include any new relevant test results and doctors reports or supporting letters confirming diagnosis and chronic illness.

A high percentage are turned down on first application. A good percentage pass an appeal. Why? The Department of Social Protection want to lose you on the initial application, however, they can’t ignore the facts if you provide evidence of long-term chronic illness.

 
Our advice is that:

 

-        You get a strong letter of support from your consultant(s) to confirm that you will be incapable of work for an indefinite length of time, i.e., longer than 12 months, because of the chronic disabling nature of your illness and the associated debillitating symptoms.

 

-        You include completed documents such as the De Paul Questionnaires re Symptoms, Severities and the abnormal post exertion response in ME (referred to as PEM in the DPEMQ questionnaire), as well as a completed Bells Disability Scale. Please find all questionnaires here.

 

-       You could gather up any relevant recent MRI, CT and x-ray reports. Add any reports/reviews from all consultants/specialists and bind them in a folder. Write a letter with it too with description of how you are, what the outcome was from the scan/report and annex it. For Example, A - first CT scan and date. Add any report associated with your scan. B- Brain MRI and the report, and so on depending on medical records you may have.

Include everything, no matter how minor you might think its relevance.

 

-        You add a list of all the prescription meds and all the supplements you are taking.

 

-        You include a brief ‘before and after illness journal describing how you were before illness, i.e., work/hobbies/activities/health, and how you are now with chronic illness, giving an account of your worse day and the disabling symptoms.

Remember some people with Myalgic Encephalomyelitis (ME) can experience fluctuating illness, seeing a relatively moderate day and then following activity seeing horrendous days, don’t forget your worse days when getting across how debilitating and disabling ME is, i.e. the debilitating symptoms and features of your ME that prevents you from activity and deems you unfit for work.

 

-        You could add another supporting document called ‘My Needs Statement’, more here

 

-        You could add detail re the various treatments/therapies you have tried over the past months/years (which could be considerable). That way you are providing evidence of your attempts to get better and ambition to return to work, as well as showing how ill you are.

 

-        You could add a letter from your GP pointing out that because of your symptoms you are unable to work...this can work better than ‘because of her ME she can’t work’ as ME may not be recognised but your disabilities and disabling symptoms that prevent you from being active would be taken into account i.e., the list of debilitating symptoms that prevent you from working in any job.

 

-       If asked to do an oral interview get your doctor to support you and say you are not well enough to attend an interview. 

   


    -     Other patients have reported success at the appeal stage after approaching a local representative for support. You could get onto one of your TDs and explain what’s happening and ask for their support. You can do this by phone or email though a phone call may be better. If you are not up to making the call get someone else to make a call on your behalf.  

 


 -       You could include a consultant’s letter stating a  confirmed diagnosis and outlining inability to work indefinitely and explanation of why you are unable to work.





Myalgic Encephalomyelitis (ME) is classified as a neurological illness since 1969 by the World Health Organisation (WHO) ICD G93.3



 -       You could include the Myalgic Encephalomyelitis (ME) Classifications, see those below:

WHO Classification ICD 10 G93.3 classified as a Neurological disorder

WHO Classification ICD 11 8E49 classified as a Neurological disorder 

SNOMED Classification SCTID: 118940003 
classified as a disorder of the nervous system 

NASS (HRB) G93.3




If you don’t see a specialist then the GP needs to make a stronger case that ME is relentless and specifically that there’s no cure. The main line is that the illness is chronic, and patients suffer for decades. Then personalise it to say you’ve struggled with ME for a long time and pushed through but haven’t been able to work for a while and won’t indefinitely. No one can decide when you are better.

We’ve noticed in feedback from patients that their doctor or consultant can say things in a letter like ‘has improved’ on such and such a drug; that definitely does not help so leave anything like that out of the file you send them. Improvements in ME are mostly temporary because of the fluctuations in ME. 

The bottom line is that with ME we see ourselves having ‘good’ days and bad days. You need to describe your absolute worst day because though we have ‘good’ days we know the bad days come and that’s only what they need to hear about. Don’t give them any positives whatsoever. Give an inch they take a mile! Give a very clear and concise outline of your typical worst day and your struggles with regards to activity, mobility etc.

We’ve heard of people regularly ringing the Dept of Social Protection to keep on top of the progress of the application or appeal. Keep on them and let them know you are not going away.

We have also heard that a patient's local representative (TD) can make those calls too on your behalf especially if you’re not up to it.

At the end of the day the welfare system is actually much fairer than the private Insurance one, and with a bit of persuasion you can get around the welfare one.

Citizens Information are very helpful with the application process and an appeal.
 
Don’t give up - don’t let the first decision to refuse you welfare put you off, it is important to fight for your right to financial support and appeal the decision. The Department of Social Protection appear to try to lose people early in a process, but they may eventually recognise proof of illness and disability, and award applicants following an appeal.

Remember that when you are refused supports it is not personal, it’s the system trying to put people off and not pay them. You are just a statistic, and the deciding officer has no idea of your hell. Appeal the decision and get a medic to support you in a letter stating you were in a particular profession and why you can’t work to that profession citing some of the duties of that profession as examples.

 

You may have limited time to make an appeal, please check the letter of refusal you received. More on Appeals below

 


Checklist When Appealing A Social WelfareSocial W


Checklist When Appealing A Social Welfare Decision 

There are a number of stages involved in the appeal process. This checklist from ‘Thinking Disabilities’ outlines these stages and explains the process involved in making an appeal to the Social Welfare Appeals Office.





Supplementary Welfare Payments


You can apply for Supplementary Welfare Allowance (SWA) while you are waiting for your Invalidity Pension/Disability Allowance/Appeal to be processed. SWA is a means tested payment. In a means test the Department of Social Protection examines all your sources of income. To get SWA, your income must be below a certain amount. You can contact your local community welfare officer to receive that ‘emergency money’ while you are waiting for the outcome of an application and/or appeal.

 

Supplementary Welfare Allowance (SWA): List of offices administering SWA:

More information here

 

 

 


The Equality Act says no one should be discriminated against because of their disability - excluding someone because they have an ‘ME’ label rather than another ‘acceptable’ label would seem not to be lawful, though a case would need to be brought and a judgement made so there was case law to rely on.





Domiciliary Care Allowance 


Citizens Information is spot on regarding DCA and highlights the importance of getting across that:

(1) to qualify for Domiciliary Care Allowance a child must have "a severe disability requiring continual or continuous care and attention substantially in excess of the care and attention normally required by a child of the same age"; and

(2) the child must be likely to require this level of care and attention for at least 12 months.

With regards to (1) above, the name of the illness is not what's important so you and the doctor must get across the chronic disabilities that are making the child unfit for various activities and functioning, so for example you could say that the child suffers from x which prevents them from doing y and therefore they are dependent on the parent to do z.
The Department want a picture of how disabled your child is so get as much across as possible.


With regards to (2) it is so very important that your child's GP gets it across in their part of the form and in a supporting letter that your child will likely require care and attention for at least 12 months, that there is no cure for ME or universal treatments; that recovery is only likely if the child was diagnosed early and managed early, and given that they have been unwell for x amount of months/years, it is unlikely that they will recover within 12 months. That bit is crucial. They need to support you re (1) and (2) making both very clear in a supporting letter.

Link to Citizens Information about DCA here





Primers 

  • The Frontiers Primer for Paediatrics is full of useful information including symptoms and disabilities as well as focus on other issues, all of which may help you remember things and to assist you to word things better. It is hard enough caring for an unwell child so the Primer is useful for putting sentences together that spell it all out as it is.
There is a Pediatric ME/CFS: Clinical Diagnostic Worksheet on that website under the heading Clinical Diagnosis which may be useful to you too. See the Frontiers Primer here




  • The International Consensus Primer was written about Adult & Paediatric ME for medical practitioners; you may find it useful from page 19 in particular, though the Frontiers Primer says a lot more about ME in Paediatrics. link to the ICP here








The De Paul Parent & Child Symptom & Severity questionnaires, i.e, the DSQ-Ped forms by De Paul University are also useful for reminding you of what your child's issues are and completed questionnaires would be useful to include with your DCA application.
Even better, if you can get your GP to certify completed forms it may help. Those questionnaires are based on research into paediatric ME so they are rigorous. They can also be used by you and your child to track symptoms and severities and used to help in GP consultations.

The DSQ- PED questionnaires from De Paul consists of a parent form and a child form. Parents can fill in a symptom questionnaire to present to the child’s medic. Medics can collect data from both children and their parents to obtain a thorough understanding of the child's ME. Children under the age of 12, or those with reading or comprehension difficulties, complete this questionnaire with the assistance of a parent or guardian. These forms are based on research.

 

(i) DSQ-Ped Parent Report Form here
(ii) DSQ-Ped Child Report Form here



 

Disability & Functioning Scales


  • Bells Disability Scale is useful to evidence disability; A good scale that could be used along with the categories Mild, Moderate, Severe, Very Severe, Profound, to determine near exact range, is the Bell's Disability Scale. Different people suffer in different ways but the scale gives an idea of the level of disability. It may be the case that it doesn't reflect your severity exactly but it is a useful tool for some patients to get across the extent of their ME severity to medics & others. 
Bells Disability Scale here



  • Functional Ability Scale is an important tool to help you work out where you are with your ME severity, we include the one from Action for ME (UK) here






Supporting Letters

  • Draft Letter for Doctors to Support & Evidence Disability

We have recently put a draft letter for doctors together for people to use...the idea is that you edit to refer specifically to the person with ME, either by taking things out or adding more in. It is written for adults with ME but will have a lot of useful sections you can take from.

The edited and completed draft by you is given to the GP/doctor to help them write a letter on your behalf evidencing illness, severity and disability. It helps educate the GP as well as assists them to write a detailed account on your behalf, especially helpful when they have a busy schedule.

Of course they may not use all.. or any of it, but I would try push it saying 'you don't really know my child like I do, or see how ill they are..you only see them at their best..this is how they are all of the time.

We will need an email from you to send the 'Draft for Doctors' if you would like that, you can drop an email to us at info@meadvocatesireland.com if you wish and we will send it to you by return. (we will be publishing that Draft Letter for Doctors soon and adding to this page)



  • Other Doctors/Specialists/Consultants/OT 
You could also get a supporting letter from any of your child’s specialists if they attend any; ask them to evidence disability highlighting the need for your constant care. An OT report would be very useful if you have one.



  • Your Supporting Letter
In your own letter and the doctor's supporting letter it is important to describe your child's worst days and important not to list capabilities or talk about good days. What you want to get across is your child's chronic disabling illness which is profound and chronic...which is why you are looking for DCA.  





Activity Diary
We would advise you to keep an activity diary for a week and include it with your application for DCA. Or you could include a before and after illness onset essay.








About ME in Paediatrics
Have a look at the Paediatric section on our own webpage which may also provide some useful resources to help you evidence disability and severity here







Test Results
Also include copies of any relevant test results which evidence disabling symptoms..anything at all that has been done since your child was diagnosed with ME .












Entitlements for Carers

 

HSE Carers Support what’s available for carers here



Carers Allowance - how to apply for Carers Allowance:

  • Citizens Information here
  • HSE Information here

 


Entitlements for carers - the lists and links via the link here are to help you to check out all the main services and entitlements for carers.






Further Information & Supports


  • Post on Public and Community Health Supports and Services here 

  • Link to powerpoint presentation: Social Welfare information on Disability Allowance and Invalidity Pension here

  • Post on Mobility Aids and Appliances - Mobility Scooter and Powered Wheelchair etc here

  • How to make a complaint re a HSE service/healthcare/other, please see our page about making a complaint here

  • The Disability Legal Information Clinic, run by the Centre for Disability Law and Policy in NUI Galway provides free, accessible, confidential legal information on disability related legal issues and is available right across Ireland for disabled people, their families and supporters. The clinic is staffed by law student volunteers who are supervised by a member of the CDLP team and a qualified legal practitioner. In the past the clinic has dealt with issues in relation to housing, education, employment, discrimination and access to supports or services. To find out more about the clinics work visit the website here. You can also email dlic@nuigalway.ie if you have any questions or would like to arrange an appointment.








Myalgic Encephalomyelitis (ME) is classified as a neurological illness since 1969 by the World Health Organisation (WHO) ICD G93.3



Myalgic Encephalomyelitis (ME) Classifications:

  • WHO Classification ICD 10 G93.3 classified as a Neurological disorder

  • WHO Classification ICD 11 8E49 classified as a Neurological disorder 

  • SNOMED Classification SCTID: 118940003 classified as a disorder of the nervous system 

  • NASS (HRB) G93.3






Updates


09/02/23

With regards to Disability Benefit, Invalidity Allowance, etc there is no harm in letting the Department of Social Protection know that our HSE is not excluding anyone based on the name of their illness, which strongly suggests they too should be assessing against need not name of illness.
For anyone told ‘ME is not on our list of disabilities’ here is a response from National Community Operations here, received on 09/02/23

The statements:
1) ‘Services are provided on the basis of assessed need rather than diagnosis and take into account the individualised requirements of people’ is a standard now stated which if your area is not complying with the national standard by denying an assessment because ‘ME is not on the list of disabilities’ you can quote the national position dated 09/02/23 to them and ask why they are not adhering to it, copy National Director Yvonne O’Neill into your email: communityoperations@hse.ie

2) ‘I have also included the link National Framework for developing Policies, Procedures, Protocols and Guidelines that the CHOs rely on to develop policies and guidance:’ which infers that your local disability services ‘should’ have a policy which they rely on which describes their operational processes.
Ask for the policy and Servce User information from your CHO area manager so you know what to expect from a service.

More on National Framework for Developing Policies, Procedures, protocols and Guidelines here


There has been significant work undertaken to enable people with chronic illness to live their lives at home, it is however recognised that these services are available to all patients. The HSE provides Personal Assistants and Home Support Services as well as Respite Services and Therapeutic Supports, and Aids and Appliances, that are designed to enable people to live as independently as possible. Services are provided on the basis of assessed need, rather than diagnosis, and take into account the individualised requirements of people.







29/06/23

ME Advocates Ireland (MEAI) collated anonymised feedback from one of the surveys held in May to update the information post on Social Welfare in Ireland, and to use when we are communicating with the HSE.

Participants completed the survey only if (i) they live in Ireland and (ii) have applied for a Welfare Payment in Ireland because of illness and disabilities associated with Myalgic Encephalomyelitis (ME), or if the participant is a carer who has applied on behalf of someone with ME in Ireland.

Our Social Welfare Survey Report which includes anonymised participant feedback from the ME community, our comments and advice here






01/09/23
MEAI's Pre-Budget 2024 Submission here







22/09/23

MINISTER FOR SOCIAL PROTECTION IN IRELAND ANNOUNCES RADICAL WELFARE OVERHAUL

Important information for anyone on a welfare payment such as Disability Allowance or Invalidity Pension: here


MEAI will put in a submission regarding the new plans. For anyone else interested in writing a submission here are the details: here

Closing date for submission December 15th 2023



For any comments about this or if there’s anything you wish to have included in a submission by us please email us at info@meadvocatesireland.com or contact us through the pm button on our Fb page.




Template Submission


Submission Templates re Green Paper for Welfare Reform

ME Advocates Ireland (MEAI) have put together two template submissions regarding the Green Paper for Welfare Reform announced last month for anyone interested in responding by sending a submission. Link to the Green Paper is in comments.

There are two links to templates included below for anyone in the ME community who (i) is receiving a disability payment (Disability Allowance/Invalidity Pension), or (ii) for anyone who wishes to support those on disability payments.

We encourage as many as possible to support those in the M.E. community.


You can edit the template that concerns you as you wish by removing or adding any additional details. If you are not up to making edits you may send the document as it is.



How to send your submission

You may make your submission by email or post:

Email: DCPolicyConsultation@welfare.ie
Postal Address: Disability and Carers’ Policy Unit, Áras Mhic Dhiarmada, Department of Social Protection, Store Street, Dublin 1, D01 WY03.



How to edit the template submission

Open the link on this post, then download to your PC/laptop, edit then save.


The closing date for submissions is 15th December 2023.
Responses received after this date will not be considered.


Here are the links to the template submissions:
(i) For anyone who is receiving a disability payment Disability Allowance/Invalidity Pension


(ii) For anyone who wishes to support those on disability payments here






12/04/2024

Green Paper: Proposed Welfare Reform Update

Government announced tooday that it is to scrap the controversial Green Paper on disability reform after significant backlash from campaigners and individuals with disability, more here



















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