Submission re Green Paper on Disability Reform by ME Advocates Ireland (MEAI)

 

"Compassion for those who are suffering has been replaced by a punitive, mean-spirited, and often callous approach apparently designed to instil discipline where it is least useful, to impose a rigid order on the lives of those least capable of coping with today’s world, and elevating the goal of enforcing blind compliance over a genuine concern to improve the well-being of those at the lowest levels of society.”

New Submission Deadline - 15th March 2024

ME Advocates Ireland (MEAI) Green Paper Submission

ME Advocates Ireland (MEAI) is concerned about the adequate provision of state services, resources and welfare entitlements for people with Myalgic Encephalomyelitis (ME). 

Where services, resources and welfare entitlements are unavailable, inaccessible, or under threat of being taken away, ME Advocates Ireland (MEAI) aims to highlight these inadequacies in the hope that the situation is improved in favour of the person with M.E. associated illness and disabilities. 

We have responded to the recently published government Green Paper on Disability Reform with our submission by email on behalf of members of the M.E. community in Ireland. We think that the proposal is a reductive, regressive, brutal way to frame the lived experience and reality of life for our disabled citizens, and vehemently oppose the proposal by the Irish Government to categorize disabled people for the purposes of allocating social welfare payments. Please see our reasons as outlined in our submission.

Our completed submission is available here

and the submission is also available in PDF format. If you would like a copy of the PDF please email us at info@meadvocatesireland.com or contact us via the message button on our facebook page.

The full email details re the Submission made by ME Advocates Ireland (MEAI) on 07/11/23 including te response are at the bottom of this page.

Green Paper on Disability Reform

The Minister for Social Protection in Ireland announced proposed radical welfare ouverhaul with the publication of the Government's Green Paper in September. The Disability Green Paper is available to download and view under the heading 'Documents' on the governmment page via this link.

Useful Schemes for People with M.E. Associated Disabilities in Ireland

 

Invisible Disabilities    

According to Hidden Disabilities, 1 in 5 people across Ireland live with some form of disability, and 80% of these are non-visible, which is just under one million people who are living with a non-visible disability. Here are some schemes which may be useful to anyone with a disability.

DISABLED PERSONS PARKING PERMIT

The Irish Wheelchair Association is the country’s biggest provider of disabled parking permits.

Their online service allows first-time applicants to apply for a parking permit application form, and existing customers to renew their parking permits online.

This is a scheme which is now open to many disabilities including some types of invisible disabilities, depending on your condition and the eligibility criteria.

Although Myalgic Encephalomyelitis is not considered as one of the types of disabilities the IWA considers, physical disabilities are listed by them...Myalgic Encephalomyelitis is an illness associated with physical disabilities so it is your physical disabilities that will be assessed.

To find out more information and to apply for the scheme visit:

https://www.iwa.ie/ser.../motoring/disabled-parking-permits/

If you are unsure about any aspect of the process, you can read the following guide:

https://www.iwa.ie/.../guide-to-the-disabled-persons.../

DISABILITY ALLOWANCE

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. This is a social welfare payment from the Irish Government for people who have a permanent disability that prevents them from working in Ireland due to their condition. For more information visit:

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

Or

Citizen’s Advice: https://www.citizensinformation.ie/.../disability...

You can access the Disability Allowance Application Form via the links above.

MEAI's advice re qualifying criteria and more about applying and appeal processes:

http://meadvocatesireland.blogspot.com/.../supports...

DARE SCHEME

The Disability Access Route to Education is for any student sitting their leaving certificate with a disability, illness or condition which has a significant impact on their education.

DARE is a third level alternative admissions scheme for school-leavers under the age of 23 as of 1 January 2024, whose disabilities have had a negative impact on their second level education.

A disabled person can apply for this scheme to reduce points for college courses. The scheme ensures that everyone has an equal chance to progress into higher education.

To be eligible for DARE thestudent must meet both the DARE Educational Impact criteria and DARE Evidence of Disability criteria.

Although Myalgic Encephalomyelitis is not considered as one of the types of disabilities DARE considers, physical disabilities are listed...Myalgic Encephalomyelitis is an illness associated with physical disabilities.

For more information, visit https://accesscollege.ie/dare

SUNFLOWER LANYARD SCHEME

This is a scheme that originated from Gatwick Airport, on how to identify someone with an invisible disability when using their disability services. It has now grown and expanded to the UK and Ireland and can be used in shops, services and transport.

More information and helpful tips on how to obtain a Myalgic Encephalomyelitis sunflower lanyard here

To find out more or to get your own sunflower lanyard visit www.hiddendisabilitiesstore.com, then choose your country by hitting the flag in top right corner of the page.

SUNFLOWER PARKING SCHEME

This scheme was piloted by Waterford County Council and was met with great excitement and praise. Hopefully the scheme will be rolled out across Ireland. Waterford City and County Council installed two Hidden Disability Car Parking Spaces in Scanlan’s Yard in Dungarvan, Co. Waterford.

The car parking spaces, introduced in September 2021, are easily identified with a bright yellow sunflower on a green background, see images in comments.

As not all disabilities are visible, or immediately obvious, the car parking spaces are in a safe location, not immediately located beside the road and are the same dimensions as a Wheelchair accessible parking space.

Anyone with a hidden disability has the right to park in the Sunflower space - there is no requirement to display a Sunflower badge, sign or disc on the vehicle. Users of the Sunflower parking space do not need to wear a Sunflower lanyard or any other product to indicate that they have a hidden disability.

Some of the users may not qualify for a Blue Badge, so these courtesy parking spaces provide a safe and accessible place to park. The hidden disability spaces require paid parking, with the Pay and Display ticket machine located close to these spaces.

More Supports

MEDICAL CARD

The Republic of Ireland provide medical cards which allow people with low levels of income or people with profound illness or disability have free access to healthcare services and medications. To check your eligibility please log onto the HSE website: https://www2.hse.ie/ser.../schemes-allowances/medical-cards/

For more information, advice and qualifying criteria on how to apply for a medical see our webpage here: https://meadvocatesireland.blogspot.com/.../day-23...

GP Visit Card 

Income limits for means tested GP Visit Cards have recently increased for a second time this year. 

More people now qualify for a GP Visit Card; if you qualify for a GP Visit Card, you will not have to pay to see your doctor. 

The quickest and easiest way to apply is online at hse.ie/gpvisitcards where you can find out more information, more here

Further Supports

PUBLIC & COMMUNITY SUPPORTS IRELAND

SOCIAL WELFARE SUPPORT IRELAND

All rea

Essential Care Around Malnutrition in Severe Myalgic Encephalomyelitis (ME)

"This group of patients just don’t exist in the consciousness and experience of those from whom they need knowledgeable, guided & appropriate care." 

Malnutrition in Severe ME

One often overlooked but crucial issue that significantly impacts the lives of individuals with severe Myalgic Encephalomyelitis (ME) is malnutrition. Patients with very severe ME can experience difficulty maintaining their nutrition and hydration. In the most severe cases it is not uncommon. 

The most common reason for malnutrition in a severe ME patient is ME associated debility. There are a variety of other reasons which we will discuss below.

This post contains important and relevant information to be shared with patients' families and carers and more importantly with the doctors in a hospital where you or a person in your care is being refused treatment for malnutrition as a result of having severe ME, or where the patient is not being treated appropriately. 

The focus of this post is on overcoming the challenging aspect of accessing appropriate nutritional support for individuals with severe Myalgic Encephalomyelitis (ME). When we say 'severe' we refer to people with either severe, very severe or profoundly severe ME.

Our Pre-Budget 2024 Submission

 

Time for Action - Invest in People with Disabilities

Pre-Budget 2024 Submission

We have completed a Pre-Budget 2024 submission and emailed it to Government. We tried to include as much as we can with regards to our knowledge of government plans and strategies, and with regards to issues which have been reported to us through feedback via various ways, e.g., survey feedback and social media platforms.

Please see our Pre-Budget 2024 Submission here

#investinpeoplewithdisabilities

Advancing Disability Rights Progressing People’s Potential

Further Information

Our 2023 Survey report re the ME community's experiences with Social Welfare here

Submission to the Joint Committee on Disability Matters in November 2020 here

How to Make a Complaint or an Appeal (HSE/other)

 

Are you unhappy with a welfare payment you received or were you denied a payment you think you were entitled to?

If you are unhappy about a payment you have received, or if you feel that you have been unfairly treated when claiming your entitlements, you can make an appeal. You can get help to make an appeal from your local Citizens Information, just click on the link and choose your county to view the centres in your area Citizens Information Centre

You can also call the Citizens Information Phone Service on 0818 07 4000, Monday to Friday, 9am-8pm.

Appeals

Social Welfare Appeals

If you think you have been wrongly refused a social welfare payment or get a lower payment than expected you can appeal this decision to the The Social Welfare Appeals Office. 

You can also appeal if you are unhappy about any decision of a social welfare Deciding Officer or Designated Person (in the case of the Supplementary Welfare Allowance Scheme). You must appeal within 21 days of getting the decision on your claim.

Examples

Appeals re Illness Benefit

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.

 

Where to appeal

Illness Benefit

Department of Employment Affairs & Social Protection

P.O. Box 1650

Dublin 1

Ireland

 

Tel: (01) 704 3300 or 0818 928 400

Homepage:

https://www.gov.ie/en/service/ddf6e3-illness-benefit/

Email: illnessbenefit@welfare.ie

 

Appeals re Invalidity Pension and Disability Allowance/other payment

If you think you have been wrongly refused Invalidity Pension/Disability Allowance/other payment or you are unhappy about a decision of a Deciding Officer, you can appeal this decision, more here.

Are you unhappy with a public service you received or were you denied a service you think you were entitled to?

If you are unhappy about a service you have received, or if you feel that you have been unfairly treated when claiming your entitlements, you can make a complaint or an appeal. If you would like to make a complaint, here are some suggestions that may help:

• tell the public service provider you are unhappy with the service and explain why

• tell them what happened and what you think should have happened instead

Complaints

If you are unhappy with the public service provider’s response:

• ask them how you can make a complaint about that response

• ask for the name of the person you should complain to

• be very clear in describing what you think has gone wrong

• tell them what you want them to do to make things right

• ask for help to make your complaint if you have a disability or if you have a difficulty with writing

Public Health Services

For complaints about public health services you can use the HSE complaints process. 

There is a HSE complaints system for anyone using:

• Public health or social care services provided by the HSE

• Service providers who provide health or social care services on behalf of the HSE

There are many ways you can tell the HSE about your experience, please see your choices below 

- HSE Your Service Your Say

Use the HSE's Your Service Your Say feedback and complaint service if you wish to make a complaint or bring an issue to the attention of the HSE. The YSYS process is a legal one, set in law which the HSE ‘has’ to follow, though practice is mixed across the country.

HSE Your Service Your Say is HSE's process to listen and respond to your feedback about their services. Your feedback might be a comment, compliment or complaint. More about this process further below.

- Fill in the online form below that applies to you:

HSE Feedback Form

Your Service Your Say Feedback Form ,

Your Service Your Say Feedback Form Under 18 ,

Complaints Form in Other Languages

 

- Email HSE at yoursay@hse.ie

- Fill out the paper feedback form and put it in the feedback box at at one of the HSE service locations or give it to a member of staff.

- Send a letter to the service - an HSE staff member can give you the contact details.

You can send a letter or completed feedback form to the HSE service you want to give feedback on. For example a hospital, or primary care centre.

To send your letter or form:

• use the feedback box at one of the HSE service locations or
• give it to a member of staff or
• ask a staff member for the right postal address for that service or
• post it to HSE Your Service Your Say, Oak House, Limetree Avenue, Millennium Park, Naas, Co. Kildare, W91 KDCT

 - By Phone

• Call HSE on 1890 424 555 from 9am to 5pm Monday to Friday. Call 045 880 429 from a mobile.

• Freephone HSELive on 1800 700 700 from 8am to 8pm Monday to Friday and 9am to 5pm on Saturday.

• From outside of Ireland, phone +353 1 240 8787.

- Through a Complaints Officer

There are complaints officers across the HSE. A member of staff at one of the HSE service locations can give you the contact details of the complaints officer for the service you want to complain about. 

If you are unable to contact the Complaints Officer listed for your area or you are unsure who to speak to about your feedback, please contact the office of the general manager for the service you are using and a staff member will tell you who you may discuss your concerns with, see list below:

• Hospital Group Complaints Officers
• 
  
• Community Healthcare Organisations Complaints Officers
• 
  
• National Ambulance Service Complaints Officers
• 
  
• National Screening Service Complaints Officers
• 
  
• Primary Care Reimbursement Services Complaints Officers

If you're not able to give feedback yourself, ask a relative, carer or advocate to do this for you. As mentioned before you can get help to make a complaint or an appeal from your local Citizens Information office, just click on the link and choose your county to view the centres in your area Citizens Information Centre 

You can also call the Citizens Information Phone Service on 0818 07 4000, Monday to Friday, 9am-8pm.

Useful Information about Making a Complaint 

You may have had a poor experience and told a member of staff or the person providing your home care, for example, by phone or in person.
If they cannot help within 48 hours they should ask you if you want to have your complaint looked at by a complaints officer. They can send your complaint to them for you. 

To express concern about your experience a complaint is best put in to yoursay@hse.ie and it will be sent to the relevant hospital or service.

What should happen when making a complaint through any complaint process option mentioned further above - let’s focus on the Your Service Your Say process 

The Your Service Your Say process is a legal one, set in law which the HSE ‘has’ to follow, though practice is mixed across the country.

(1) When sending a complaint via the Your Service Your Say process, whether by email or letter, or any of the other options listed above -

 

(a) Include facts, facts are more important than opinions, so stick to the facts  

 

(b) Describe what happened and when it happened, if it made you feel uncomfortable, what made it feel ‘not ok’ to you. 

 

(c) Describe who was involved. 

 

(d) Explain what your concerns are. 

 

(e) Mention if you have done anything to resolve this matter, if you have already tried to sort it out, describe what you have done so far. 

 

(f) Explain why you are unhappy and what you would like done to fix the problem. 

 

 

(g) Include any evidence you have, for example, reference numbers, copies of correspondence or relevant documents and anything that helps explain what happened. 

 

 

 (i) Give them your contact details and a mobile number if possible. If you have a carer or an advocate you could give their number and a consent note to say that you are happy for them to represent you in all matters relating to your complaint.

 

• NB: 

• Never make offensive remarks about the people you have been dealing with
• Don’t include any personal views unless you have evidence to support them

 

If it is a letter you are writing you should begin with your own name, address and date. It should be at the top of the page and could be to the top right, top left or in the middle, depending on what style you prefer.
The name of the person you are writing to
Their job title
The name and address of the public service provider [where the person works]

Sample Letter

Dear [name of the person you are writing to],

I would like to complain about…

In this part of your letter,

• explain clearly what happened, when it happened and what you have done to try to sort things out
• explain why you are unhappy with the service and what you would like done to fix the problem
• provide enough background information to explain the situation
• include information and details such as reference numbers, photographs and copies of letters or emails you have sent
• ask them to contact you by a reasonable, specific date – tell them if you would prefer to be contacted by phone, email or letter – and make sure you include your contact details or those of your carer or advocate (if you are unable to write yourself or unable to deal with any communications regarding the complaint and have a carer or advocate)
• if the person you are writing to is not someone who can sort out the problem, ask them to explain why they can’t help and whether there is someone else you can complain to

Yours sincerely,

Put your name and phone or email contact details here or those of your carer or advocate

2) The Your Service Your Say system should forward your complaint to the relevant area and a complaint officer should be assigned to your complaint.

3) If you made a written complaint, Your Service Your Say will let you know that they have received your complaint within 5 working days. The Complaint Officer may contact you within five working days or you ‘should’ receive a formal communication by email or letter within five working days telling you the name of the complaint officer, the issues you have raised and the completion date.

4) Then Your Service Your Say will look into your complaint and respond to you within 30 working days.

They may contact you to ask for more time, if needed and keep you updated every 20 working days after that.

They might call or ask to meet you to hear more about your complaint.

Within thirty days of the report, the ‘accountable officer’, that’s the person responsible for the service should write and tell you that they have accepted the recommendations and if they’re not accepting them, why not.

They should also offer ‘redress’ - an apology, reassurance that this will be put right - for you and others.

5) The response should have findings and recommendations. When you get the response, it should tell you about your right to have a Review or to go to the Ombudsman.

(6) If you are not happy with the outcome of your complaint, you can ask for an internal review by the HSE. You can also ask for an external review from the Ombudsman or the Ombudsman for Children. These are the options if you think:

- they haven’t addressed all the issues you raised in your complaint

- you think they haven’t looked at all the evidence or have ‘got it wrong’

- they haven’t followed the process as described above from 1 to 5 and didn’t give you a chance to ‘tell your story’

Internal Review

If you are not happy with the recommendations in the report following your complaint process, you can ask for an internal review. You will find out how to do this in the letter you get with your report. In an internal review HSE look back over the recommendations they made. They will do this within 20 working days or let you know if they need more time. 

External Review (public bodies & disability services)

If writing to complain does not work you can ask for an external independent review through the Ombudsman. The Ombudsman can investigate complaints about public bodies. 

Under the Disability Act 2005, the Ombudsman also has a role in investigating complaints about accessibility to public services. 

The Ombudsman can examine complaints about most public service providers including government departments, local authorities, the HSE and public hospitals, and publicly funded third-level education bodies. 

The Ombudsman cannot handle complaints about organisations such as An Garda Síochána, the ESB and financial services or pensions providers.

If you are not sure whether they can help, please contact them.

You can also visit their website for information on service providers within and outside their remit.

 

Please see more via one of the links below:

Ombudsman or Citizens Information about the Ombudsman 

Ombudsman for Children or Citizens Information about the Ombudsman for Children

Further Information

• More about making a complaint about a health service from Citizens Information here

• How to make a complaint about Home Support Service here (some information is repeated from above re ways to complain and the Your Service Your Say process)

• If you want to make a complaint about your experience in a public hospital, the Patient Advocacy Service (PAS) can provide information and support. The service is independent, free and confidential and it applies to public acute hospitals that are funded by the HSE.

• Assessment of Need
  There is a separate complaints process if you wish to make a complaint about an Assessment of Need

• Quality and Patient Safety (QPS) staff - if there’s a clinical element to your complaint

A complaint with a clinical element will be dealt with by the Quality and Patient Safety (QPS) staff.

You can include the effect of that Consultant/Dr on you, their attitude, did they give you the information you needed to give informed consent, did the Dr appear to have the knowledge of the illness, did you feel there was care, compassion and that you could trust them, did you feel respected, were you treated with dignity can all go under a complaint.

The difference is the YSYS process is a legal one, set in law which the HSE ‘has’ to follow, though practice is mixed across the country.

The clinical judgement piece relies on the Open Disclosure policy and the Incident Management Framework, but the QPS staff should engage and listen to you and address any concerns about clinical judgement.

HSE practice is inconsistent and very much depends on which member of HSE staff responds to your concerns.

 

•  Patient Advocacy Service
  
  
  Do you need help to make a healthcare complaint in Ireland? Talk to the Patient Advocacy Service providers. They are an independent, free and confidential service that can help you make a complaint about the care you received in a public acute hospital, HSE-operated nursing home or private nursing home.
  
  
  Contact Patient Advocacy Service from Monday to Friday, 10am - 4pm, on 0818 293003
  Or email info@patientadvocacyservice.ie
  Visit the website for more information www.patientadvocacyservice.ie

• Confidential Recipient

  
  

  Reporting a Concern to the Office of the Confidential Recipient

  The confidential recipient is a person appointed by the HSE. They are independent of the HSE.

  This means they can act as a voice for vulnerable older people and people with a disability when a complaint is made.

  You can report a concern to the Office of the Confidential Recipient if you are:

  • a person who uses these services and you need confidential help and advice
  • a neighbour, family member, friend
  • any member of the public
  • working at a HSE-funded service

  
  

  Types of Concern

  The Office of the Confidential Recipient deals with concerns about:

  • abuse
  • negligence
  • mistreatment
  • low quality of care

  For example, if a person is physically abused, threatened, not fed enough of the right foods, is kept to their room or not allowed to move around (being confined).

  Concerns may also be about denial of dignity, or someone not having control over their daily life or choices. You can also report concerns about abuse of power or a culture of oppression.

  
  

  What the Office of the Confidential Recipient Does

  They will:

  • listen to you and hear your concerns
  • keep your identity anonymous if you prefer
  • support you and send your concern to the right place
  • make sure a senior person looks into your concern within 15 working days

  
  

  Contact

  There are 4 ways to contact the Office of the Confidential Recipient:

  Online: Complete the enquiry form

  Phone: Freephone: 1800 949 494  Office phone: 087 188 0523  Confidential recipient phone: 087 665 7269 Monday to Friday, 9am to 5pm

  Email: General queries: cr.office@crhealth.ie  Confidential Recipient: grainne.cunningham@crhealth.ie

  Post: 

  Gráinne Cunningham O’Brien, Confidential Recipient, Office of the Confidential Recipient, Merlin Park University Hospital, Block B, Old Dublin Road, Galway, H91 N973

  
  

  More re the Confidential Recipient here

Making a complaint about other services

If you want to make a complaint about a service that is not part of the HSE, contact the service directly.

This includes:

• voluntary service providers
• private service providers
• services that get HSE funding

For example:

• GPs
• dentists
• private nursing homes
• voluntary hospitals
• day services
• other health and social care services

They will investigate your complaint, you can ask them about their complaints policy and process.

Private Health Services

If you are making a complaint about a private health service, you can complain directly to the private service provider or contact the regulating body. You usually can’t complain to the HSE or to the Ombudsman or the Ombudsman for Children about private health services.

Private Hospitals Complaint

Private hospitals also have complaint systems though only those funded by the HSE are subject to a complaint process based in law and can be taken to the Ombudsman.

Children’s Hospital Ireland receives funding from the HSE, so their complaint process is required to follow the YSYS process with access to the Ombudsman if needed.

Insurance Companies (e.g., with regards to salary protection/other)

If you are a policy owner, or insured person, and are not satisfied in any way with your policy, or with any request to do an assessment that you are unable to do, or with the outcome of an assessment, you could contact the insurers customer services team or the broker if they are the ones communicating with you. They should send you a detailed response in writing.

If they are unable to satisfy your complaint, you may have recourse to the Financial Services and Pensions Ombudsman (FSPO). Details of the services provided by the FSPO here: How to make a complaint to the FSPO | Financial Services and Pensions Ombudsman

Contact Details Financial Services and Pensions Ombudsman Lincoln House Lincoln Place Dublin 2 D02 VH29

Telephone: (01) 567 7000 

Email: info@fspo.ie 

Website: www.fspo.ie

Further Information 

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.

Brief Guide to Entitlements for People with Disabilities here

Information re Social Welfare Payments here

Information re Public & Community Health Supports Ireland here

Link to your local Home Support Office here

Disclaimer: The information in this post is for general information purposes only. While we endeavour to keep the information up to date and correct, we make no representations or warranties of any kind, express or implied, about the completeness, accuracy, reliability, suitability or availability with respect to the post or the information, products, services, etc contained in the post for any purpose. Any reliance you place on such information is therefore strictly at your own risk.The suitability of any solution is totally dependent on the individual. It is strongly recommended to seek professional advice and assistance through other avenues, depending on your query or need for support, for example, via Citizens Information, Your Local HSE Office, Revenue or other.