Public & Community Health Supports Ireland

Introduction

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

Myalgic Encephalomyelitis leads to disability and is recognised by the HSE’s CCO who is responsible for the current HSE National ME Clinical Guideline development.

 

Myalgic Encephalomyelitis (ME) is an acquired chronic neurological disease with complex global dysfunctions. Profound dysfunction/dysregulation of the neurological control system results in faulty communication and interaction between the CNS and major body systems, notably the immune and endocrine systems, dysfunction of cellular energy metabolism and ion transport, and cardiac impairments. 

ME is a disabling disease that affects many systems of the body. Because ME limits the ability to be mentally and physically active, it leads to activity/work disability.

 

 

 

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

As Myalgic Encephalomyelitis (ME) is not on the list of approved disabilities at most local disability services people have experienced the situation where they are being told that they are not even entitled to get an assessment; please keep in mind the fact that the Government states that Disability Services are NEEDS based, not diagnosis based.
 
If you are aged over 16, you can apply for your own Assessment of Need. The assessors decide what health needs arise from your disability and what services are needed to meet those needs. The assessors do not give a diagnosis.
 
It’s not up to someone to say whether you’d get support or not based on a diagnosis name, it’s up to the Needs Assessment that takes place following an application, and that assessment will look at your disabling symptoms and the severities of those symptoms that prevent you from being active. 

Public & Community Health Supports

There are public health supports available that you may be interested in. It just takes great patience and time to deal with the Irish application processes which are slow and arduous at the best of times.

Includes information about:

• Medical Card & GP Visits Card

• Home Support Service

• Disability Services: Personal Assistance Service (PAS)

• Entitlements for Carers

• Parking Permits 

• Complaint Procedures

Please scan the headings below to find the service you need information about 

 

Medical Card & GP Visits Card

Medical Card

An application for a medical card is means tested so it shouldn’t matter about the diagnosis. Many people with ME have had success in their application for a card.

Normally, your total household income is considered in the means test for the medical card.

To qualify for a medical card, your weekly income must be below a certain figure for your family size. Cash income, savings, investments, and property (except for your own home) are considered in the means test.

 

They will look at your household income after tax, PRSI (pay-related social insurance) and the USC (Universal Social Charge) have been deducted.

They will also look at expenses like:

• rent

• mortgage protection

• childcare

• mortgage • maintenance costs • house insurance • nursing home

• travel costs

 

If the figure they see after they take away expenses from your household income is less than the ‘qualifying income limits,’ you and your family dependants will be sent a card. Qualifying income limits are financial guidelines you would need to meet to qualify for a Medical Card or GP Visit Card.

 

You can find further details on qualifying income limits here

 

 

You can apply online for a medical card on mymedicalcard.ie This is the quickest method of getting the card. But working on a hard copy may be easier.

 

Alternatively, you can download a medical card application form:

Medical Card and GP Visit Card Form MC1 here

 

 

Notes

It’s a slow process gathering all the information on expenses etc. Take your time!

You can include all medical expenses (GP & Consultants receipts) as well as prescription costs. Get onto those medics for receipts or an account of your costs for attending appointments for last few years if you don’t have them.

Your chemist can also give you a list of all your expenses for the last few years if you get onto them if you’ve had regular prescription expenses. This can be much easier than gathering receipts you have kept and covers ones you haven’t kept.

This part of the work towards the application can be made easier by just making a few calls requesting those receipts or accounts of your consultations & prescriptions from GP, Consultants and Chemist. Most are helpful.

You could also include other expenses that are related to your ill health including costs of supplements and other tests/treatments/therapies.

Next, you photocopy all and send the copies with your med card application. Keep your originals in case you are asked for them later on. If you are asked for original documents at any stage remember to photocopy all for your own records.

 

 

Discretionary Card

If your income is above the limit, you may still be able to get a medical card if your circumstances would result in financial hardship without one.

 

The application process for the discretionary medical card is the same as for the means tested medical card, but you should also include information about your family’s medical expenses in your application.

 

GP Visit Card

If you do not qualify for a medical card on income grounds, you may qualify for a GP visit card.

Lots of information via this link including what documents you need to apply for a medical card.

More from Citizens Information here

 

Home Support Services

The HSE provides various public health services to people who need care and assistance to live in their own home and in the community; these supports include the HSE Home Support Service.

The supports you will receive depends on your individual needs. The supports will be provided by the HSE or by an external provider, approved by the HSE.

The Home Support Service is free. You do not need a medical card to apply and your income will not be assessed. HSE funded Home Support is non-chargeable under existing government policy. However, if you arrange other Home Supports, above the levels funded by the HSE, you will have to pay for these extra supports.

 

Our Notes

When you look into Home Support Services you will notice that the first heading says ‘Home Support Service for Older People’, don’t let this put you off because although the Home Support Service is available to people aged 65 or over who may need support to continue living at home or to return home following a hospital stay, sometimes exceptions are made for people younger than 65 who may need support. For example, people with a disability. 

There is a lack of HSE policy for under 65s, but those under 65 will be assessed according to their needs in  Care Needs Assessment. You may see that most Home Care packages refer to over 65s, but please persevere and apply for the support you need despite that. 

     The page about the Home Support Service explains how HSE provides help and support with everyday tasks for older people living at home and they include tasks that are specifically for people over 65 which you may not want. It would be a good idea to create a list of your actual care needs and stress that they are needs that you must have supported to be able to remain living in your own home. We have notes on 'My Needs' here

·    Specific national policy relating to disability services from which local disability service policies, and the national policy/guidance which Health Regions rely on to write their own local policies derive are difficult to obtain as they likely do not exist.
 

 

 

Home Support Service (HSE)

 

Read about how to apply for a Home Support Service on HSE pages here

Or follow our Steps 1 - 8 below which we have simplified to make it easier for you to follow.

Step 1.

Get the Application Form

Download the Home Support application form here. Or Ask your local Home Support Office to send you a form. No documents are required with your application form.

Here’s the link to find your local office here if you need the form to be sent to you or you need support completing the form.

If someone in Home Support Services or elsewhere tells you that ME is not a disability and that it is likely you would not be entitled to apply for a Home Support Service or that you would not get a Care Needs Assessement, insist that they provide you with the application form anyway, stating that you’d like to proceed with the application. 

You could remind them that under section 8 of the Disability Act (2005), every disabled person is entitled to an independent assessment of their needs. As per section 8.5 of the Act, this assessment “shall be carried out without regard to the cost of, or the capacity to provide, any service identified in the assessment as being appropriate to meet the needs of the applicant concerned”.

 

Step 2.

Complete a (i) My Needs Statement & (ii) Personal Needs in My Home documents

While you are waiting to get the application form or before you complete the form you could edit the My Needs Statement and the Personal Needs in My Home templates. 

These two templates can be edited to refer to your specific impairments and needs or you could create your own document using the templates to assist you. 

See My Needs Statement

See Personal Needs in My Home

HSE staff are not knowledgeable about ME. The My Needs Statement and the Personal Needs in My Home document will help you get your illness and impairments across to HSE staff.

If you are under 65 years of age and/or won't want the usual tasks carried out for older people/ or just those tasks, you need to be able to say what you want and don't want on your Care Plan which will be put together by HSE staff following your Care Needs Assessment. 

You could print copies of those two completed documents then send them with your application form when applying for Home Support Services. Keep copies to have with you during your Care Needs assessment to refer to and remind you about your needs. You could then give a copy to the assessor(s) when they are with you. 

You could ask the assessors to consider the details in both documents saying that you want to be incuded in the development of your Care Plan given the lack of knowledge among HSE staff about ME and the needs of an individual living with ME.

Step 3.

Completing the Home Support Services Application Form

 

If you are not able to complete the application form yourself

If you are unable to complete the application form and to apply yourself, a nominated support person could assist you. This could be your relative, a family carer, a supportive GP, or public health nurse (PHN). There is a part on the application form (Part 2) where this person explains why they are making the application on your behalf.

 

It is important, that you, as the person who needs the service, signs the Declaration and Consent section on Part 1 of the Home Support Service Application Form. This is because HSE need to confirm that you want the support, that you have decided this for yourself and that your wishes are being respected in this regard.The only other person who can sign Part 1 is a person who has legal authority to do so. 

If you have difficulty accessing information or making an informed decision then you can be supported by the Assisted Decision-Making (Capacity) Act 2015 (ADMA 2015) which commenced on 26th April 2023. This Act recognises that insofar as possible, every adult will be presumed to have capacity to make decisions for themselves, unless determined otherwise. Please see more about the Assisted Decision-Making Support Service here

If you are in Hospital or a Nursing Home when making an application for a Home Support Service

If you are in hospital, you (or your nominated support person /decision supporter) should ask the person dealing with your Discharge Plan for a Home Support Application Form. This person might be a nurse, a discharge coordinator or a social worker. They will assist you in completing the Application Form and will send it to your local HSE Home Support Office for processing. Submitting the Application Form as soon as possible during your hospital stay may help avoid delays in your discharge home from hospital.

Completing the Application Form Yourself

Complete the application form yourself or you can ask someone to complete it on your behalf. This could be your relative, a family carer, GP, or public health nurse.

 

Step 4. 

Return your Application Form

The completed application form should be returned to your local Home Support Office, find the address for your local Home Support Office here

 

Step 5.

After you Send your Application Form

After the HSE receives your completed Application Form, the HSE will arrange to assess what kind of support you might need. This is called a Care Needs Assessment. 

If someone in Home Support Services or elsewhere tells you that ME is not a disability and you are not entitled to apply for Home Support Services or that you will not get a Care Needs Assessement, insist that they provide you with the application form anyway, stating that you’d like to proceed with the application. 

You could remind them that under section 8 of the Disability Act (2005), every disabled person is entitled to an independent assessment of their needs. As per section 8.5 of the Act, this assessment “shall be carried out without regard to the cost of, or the capacity to provide, any service identified in the assessment as being appropriate to meet the needs of the applicant concerned”.

Step 6.

Care Needs Assessment

During the Care Needs Assessment, a staff member such as a public health nurse, physiotherapist or occupational therapist will find out what support you need. This assessment is undertaken to make sure that you get the right support in the right place - this might be in your home, in a hospital or in some cases, in a nursing home. 

During the assessment, the assessors will look at your care needs including: 

• your ability to carry out the activities of daily living i.e. bathing, dressing, shopping and moving around 

• any medical, health and other support services being provided to you 

• your family, social and community supports 

• your wishes and preferences 

• the areas of your life where you need support 

Important Advice about Your Care Needs Assessment

1. If the HSE assign a Public Health Nurse (PHN) or social worker to assess you, you are entitled to ask for an Occupational Therapist’s (OT) opinion too.

2. A PHN is a medical professional and often they take a very medicalised approach to disability. The feedback from many disabled people evidences that a PHN will often limit discussions about tasks that are usually done for older people solely relating to personal care, often assigning the disabled person home help for older people. You can use the My Needs Statement and the Personal Needs in My Home document you may have already completed to support your assessment. Keep completed copies with you during the assessment, and have copies to give the assessor. 

3. You should try to get it across to the assessor that you want to be included in putting your Care Plan together. HSE staff are not knowledgeable about ME. If you are under 65 years of age and/or won't want the usual tasks carried out for older people, you need to be able to say what you want and don't want on your Care Plan. It is not the norm for HSE to include you in writing the Care Plan but because HSE are not knowledgeable about ME or Severe ME and because you are likely under 65 years of age and won't want the usual tasks carried out for older people, you need to be able to say what you want and don't want on your Care Plan. 

The My Needs Statement and the Personal Needs In My Home document may be of use to you to help you think about what should go into your Care Plan. You could give these to the Public Health Nurse or other assessor who will be deciding what your Care Plan will look like.  

Step 7.

Following Your Care Needs Assessment

The HSE will then consider your application for a Home Support Service. You will be informed in writing of the decision on what supports you need based on your care needs assessment and available resources, if you are approved.

The HSE Home Support Service aims to assist and support people to remain at home and support informal carers. The service does not replace informal care. It is not possible to deliver 24-hour care to individual clients in their own homes, as funding available for the Home Support Service is limited.

 

If you are approved for a Home Support Service based on an assessment of your needs undertaken while you are in hospital, the support provided will be on an interim basis to enable you to return home. Your needs will be re-assessed within a short period of you returning home and the level of Home Support may be adjusted to support your re-assessed needs.

Step 8.

Care Plan

A Care Plan and the hours you will be allocated will be drawn up by the Home Support Service, usually the Public Health Nurse (PHN).

It is vital that at this stage you are included in what your care plan looks like. This is not the norm for HSE to include you in writing the plan but because HSE are not knowledgeable about ME and because you are likely under 65 years of age and won't want the usual tasks carried out for older people, you need to be able to say what you want and don't want on the care plan. 

Step 9.

Meeting the Carer

You will likely be offered a date and time to meet your new carer. The person you have been dealing with from the Home Support Service will visit you to introduce you to your carer.

More information re Home Support Service

·       Home Support Services are provided in order to assist people to remain in their own home and to avoid going into long-term care.

 

·       Your application for Home Support Service is assessed on your care needs as identified by health professionals. 

·       Your Home Support Service will be provided by HSE staff or by an Approved Home Support Provider who has an agreement with the HSE to provide this type of service on its behalf.

 

·       The Home Support Service is provided by either the HSE or one of its approved home support providers. If the HSE cannot provide the support you need then an approved provider will support you. An approved provider is usually a private agency like a Respite Care service.

 

·       The Home Support Service is free. You do not have to pay for the Home Support Service. HSE funded Home Support Service is non-chargeable under existing government policy. You do not need a medical card to apply, and your income will not be assessed.

However, if you arrange additional home supports, over and above the level funded by the HSE, you will have to pay for these. 

 

Appeal Process

What can I do if I am not satisfied with the decision about my Home Support Service Application? 

If you are not satisfied with the HSE’s decision on your Home Support following your Care Needs Assessment, you can write to the Home Support Office in your area within 20 days of receiving the decision. 

Please include the reasons why you are not satisfied with the decision. 

An impartial review of the decision will be undertaken and you will be informed of the outcome of this review.

If My Circumstances Change

If your circumstances change while you are receiving the Home Support Service in any way that affects your need for Home Support, you or your nominated support person/ decision supporter acting on your behalf, must notify the local HSE Home Support Office by phone, email or letter. 

Examples of changed circumstances include:

• improved independence as you recuperate after a time of being unwell
• admission to hospital
• availing of respite care in a hospital or nursing home
• temporary stay with your family or relatives in their home 

From time to time, the HSE will review the Home Support Service you are receiving and, depending on your care needs, may increase or decrease the supports you are receiving or the supports may remain the same.

Complaints Procedures

How can I make a comment or complaint about the Home Support Service? You have the right to complain if you are not satisfied about something we have done. If you have a complaint, a comment or wish to complement our work, you can use the following options:

If you have a complaint about any aspect of the Home Support Service you can contact the HSE. If you're not able to give feedback yourself, ask a relative, carer or advocate to do this for you.

There are many ways you can tell the HSE about your experience; you can do so in the following ways:

·     In Person: Talk to any member of HSE staff, service manager or complaints officer by contacting the local health office.

·     By Email: Your Service Your Say. Email yoursay@hse.ie with your feedback.

·     By Letter: Send a letter or fax to your local Home Support Office. Staff can help you put your complaint in writing, if you require assistance.

·     By Feedback Form: Complete a Feedback form, available at most HSE reception areas, and leave it in the identified areas provided by the local service you are using or visiting. You may also give it to a member of staff or ask a staff member for an address. The form is also available online in 9 languages here.

·     By Making a Call: Ring - LoCall 1890 424 555: Your call will be answered by a staff member from the National Complaints Governance and Learning Team.

 ·     By Online Form: Send your complaint securely through the online feedback form which is available on www.hse.ie/eng/services/yourhealthservice/feedback/complaint.

Your Service Your Say

Use the 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 here

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

What Do I Do?

When you put in a complaint the following ‘should’ happen:

Step 1. Send your complaint to yoursay@hse.ie

What to include in a complaint:

• Describe what happened and when, if it made you feel uncomfortable, what made it feel ‘not ok’ to you.
• Who was involved.
• What your concerns are.
• Have you done anything to resolve this matter.
• What you want to happen now.

Please provide any extra information and copies of other relevant documents.

 

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

 

Step 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.

 

Step 4. Then YSYS 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.

Step 5. 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.

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.

Step 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 options if you think:

- they haven’t addressed all the issues they raised

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

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

 

 

Our Notes

All of the above is what ‘should happen’. Too often it doesn’t. It’s important we know what the process is so that we can hold our HSE services to account.

It’s also important for us to remind the HSE that their purpose is to provide ‘Public Value’ - that is that the Public, us, find the services we use useful, fit for purpose and helpful.

 

 

When There Is a Clinical Element To Your Complaint

If there’s a clinical element to your complaint that 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.

There is an increasing will to learn from Service User’s experience in the HSE, the culture is slowly changing - but there’s a long way to go!

Private hospitals also have complaint systems though only those funded by the HSE that 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.

 

 

Disability Services - Assessment of Needs

 

Personal Assistance Service (PAS)

*As ME is not on the list of approved disabilities at most local Disability Services people have experienced the situation where they are being told that they are not even entitled to get an assessment, please keep in mind the fact that the Government states that Disability Services are NEEDS based, not diagnosis based. 

It’s not up to someone to say whether you’d get a PAS or not based on a diagnosis name, it’s up to the Care Needs Assessment that takes place following an application, and that assessment will look at your impairments and the severities of those symptoms that prevent you from being active and being able to live independently. 

You could remind them that under section 8 of the Disability Act (2005), every disabled person is entitled to an independent assessment of their needs. As per section 8.5 of the Act, this assessment “shall be carried out without regard to the cost of, or the capacity to provide, any service identified in the assessment as being appropriate to meet the needs of the applicant concerned”.

A Personal Assistance Service (PAS) is for any disabled person who needs support to do the things that they want to do, inside and outside their home. 

Personal Assistant Service (PAS) service provides all aspects of non-medical support to people with disabilities. These support needs vary from person to person and as a result can evolve and change in assisting the individual to lead an independent life. 

The person-centered personal assistance service ensures individuals are free to be self-directing of the service they receive. This approach is part of promoting equality and empowerment for people with disabilities.

With PAS disabled individuals are in control and cn direct the PA to carry out tasks both inside and outside of the home, including personal care, domestic duties, assisting in day-to-day tasks such as shopping, going to the post office and bank, support in the workplace or socialising. 

A PAS does not “look after” or “care for” us. Individuals assigned a PAS delegate these tasks to their PAS and in doing so take back control of our lives.

A distinct benefit of PAS is that it reduces an individual's dependence on their family and friends, allowing people to maintain a private life and their dignity. 

The PAS is often the difference between existing and living for many individuals.

What Could an Individual Use a PAS for?

PAS is all about freedom to decide to do the things you want to do, so a PAS is about each disabled person’s individual needs which might be about all aspects of ordinary living, such as:Social Needs, Personal Care or Home Maintenance, employment,  education,   parenthood hobbies,  travel,  sports,  political life. See page 5 of ILMI's informative document further below to find out about the things that a PAS can do for you.

How do I get Personal Assistant Support at home?

It is difficult to obtain a PAS and the application process is tricky, but not impossible; please read on.

If you are over 18 and you need a PAS, you need to contact the HSE Disability Services manager in your Health Region, formerly called Community Healthcare Organisation (CHO) area. Ireland is broken down into six different Health Regions that each provides health and social care for the people in the area.

You can find your Disabilities Services Manager via the link to HSE information here.

There is currently no standardised procedure in Ireland for administrating personal assistance hours, however, the application process is similar regardless of which Health Region you are living in.

A right to a personal assistance service for disabled people is fundamental to achieving that vision, however, currently there is no right to personal assistance in Ireland.

By making more home help hours available, i.e. by focusing on home help hours over personal assistance, many disabled people are prevented from living independently in any real meaningful way.

Personal assistance services are funded by the HSE and may be provided by a voluntary sector organisation such as Irish Wheelchair Association (IWA) or it may be provided by another organisation that the HSE chooses.

Contact must be made with your local HSE health centre via the Public Health Nurse (PHN) to make an application for a Personal Assistant Service.

Please note that 

• the application process for a Personal Assistant Service is different in each Health Region and is dependent upon the funding available. 

• To be eligible for the public service the individual must have a primary impairment that is either physical or sensory in nature. The service is available to adults under 65 years of age and is essential for many people with disabilities, including people with ME, if they are to pursue quality lives in society both inside and outside the home.

• There is no one process for individuals to access PA services in Ireland as it varies around the country. Applicants may be more successful applying through the Disability Services Area Manager in their local HSE area.

• Services have been organised through ‘service packages’ by Disability Area Managers. These services are contracted by the HSE directly with a Service Provider to provide a defined number of PA hours to a named disabled person/person with care needs.

• The process in applying for a PAS can be daunting and complicated. Many disabled people are told that they cannot get the hours that they need.

• Personal Assistant Services can also be purchased privately. IWA operate a private service. IWA at Home Tax relief is available on Personal Assistant services purchased privately.

 

 

Application Process for Personal Assistance Service

(PAS)

(The information in 1-7 is based on parts of an ILMI document entitled 'Pathways to a Personal Assistance Service'. Please also see our own tips from 1-10 further below before you send an application for a PAS)

 1. Contact your Disability Services Manager and inform them that as a disabled person, you are seeking a PAS to give you control over your life, to do the things you need and want to do. Please see the link with information to contact the Disability Services Manager in your Health Region further below in the links section.

If you are in Hospital or a Nursing Home when obtaining the application form and making an application for a Home Support Service

If you are in hospital, you (or your nominated support person /decision supporter) should ask the person dealing with your Discharge Plan for an Application Form for a Care Needs Assessment from Disability Services. This person might be a nurse, a discharge coordinator or a social worker. They will assist you in completing the Application Form and will send it to your local HSE Disability Services for processing. Submitting the Application Form as soon as possible during your hospital stay may help avoid delays in your discharge home from hospital.

 2. The HSE may assign a case manager to directly liaise with you in relation to your needs. They may also assign a social worker to you to talk about your needs. 

 3. Before receiving an application form you could complete your own Independent Assessment of Need (IAN) to help you focus on presenting what your real needs are. See pages 14 - 19 here for an Independent Assessment of Needs (IAN) template. You can use this template as a framework to help you build your own IAN. An IAN is a “living document” that will need to be updated over time as each person’s needs change over time.

About completing your own Independent Assessment of Needs (IAN)

An IAN should inform the HSE what the applicant’s life is actually like living with a disability without a service support or living with an ad hoc support, or trying to exist doing things by yourself.

An IAN aims to assess and identify any or all support needs that enables a disabled individual to live a fulfilled life, taking into account the individual's wishes and plans for life, including all aspects of ordinary living.

Your complete IAN document is intended to capture the totality of both your current and future supports required to enable you to live as independently as possible.

Step a.

Introduction - What is an Independent Assessment of Need (IAN)

Read pages 10 - 13 here to find out more about the Independent Assessment of Need

Step b.

Complete the Indepent Assessment of Need (IAN) Form provided on pages 14 - 18 here 

In this part of the IAN you need to talk about the reasons why you need a PAS, your current support needs and the tasks that a PA will support you in carrying out these tasks. Creating a list is always a good idea.

If you or someone else could print out these pages you could use them as your own assessment form. If you cannot print out the form you could use these pages to help you write your own lists. 

 

 List One: I need support from my PA in the following tasks:

 List Two: A breakdown on PA support needs with accompanying times:

 List Three: Number of PA hours needed in a given week:

 

Step c.

Assistive Technology Requirements: On the next part of your IAN you need to talk about your assistive technology needs. See page 19 here 

Usually disabled people that require Personal Assistance Service will benefit from assistive technology, e.g. environmental controls. You may need support from a Peer or an Occupational Therapist to identify technologies that would help you to be more independent in and outside of your home. 

 

Step d.

Health Service Provision or Required Service Provision:  On the next part of your IAN you need to talk about the health services that you currently use or need to look after your health and wellbeing. This could include attending hydrotherapy/swimming sessions, regular physiotherapy, speech and language sessions, counselling sessions, mindfulness classes, etc. See page 19.

 

 Step e.

Risks of not Having Access to the Appropriate Supports & Statement of Required Services: On the next part of your IAN, i.e., you need to talk about the risks that would be associated with not having access to a Personal Assistant Service. See page 19.

 

 

 4. An application form will be sent to you from the Disability Services Manager. If you need support to fill this in, make sure you get it. Support can be provided so that you feel confident to independently fill in the application form away from HSE staff, service providers or family members. Support could be a friend, a carer or an advocate. The National Advocacy Service (NAS) can provide direct supports to disabled people who need them to fill in forms independently and confidentially. See the link to apply for an adcovate in the links section further below.

 5. At all stages in the process, insist as your legal right that all discussions relating to your application involve you. Under GDPR any discussions via email should always include you to ensure you are fully informed of any decisions relating to your needs. 

 6a. Important Advice: If the HSE assign a Public Health Nurse (PHN) or social worker to fill in your assessment, you are entitled to insist on an Occupational Therapist’s (OT) opinion too.

A PHN is a medical professional and often they take a very medicalised approach to disability. The feedback from many disabled people evidences that a PHN will often limit discussions for PAS solely within the home or solely relating to personal care, often assigning the disabled person Home Support Service which is support in the home only. 

You can use the ILMI Independent Assessment of Needs (AON) form you may have already completed to support your assessment of need. Keep a completed copy with you during the assessment, and have a completed copy to give the assessor. 

A link to the template IAN is available above in 3. and in the links section below.

7. If you are already in receipt of HSE-funded day care services, you can seek supports from Day Service Opportunity Officers to change the type of service you receive including moving from Day Service to a Personal Assistance Service. Their role is to support disabled people to change services under the New Directions Office. Contact your Day Service Opportunities Officer for support unbundling the HSE funding from your day service to a PAS. See link to contact details in the section below.

Links to various pages mentioned in the section above

• You can find your Health Region and Contact information for your Disability Services Manager via the link to HSE information here or

• There’s a link to Disability Services in your county, under the 'Related Links' heading, see here: https://www.hse.ie/eng/services/list/4/disability/

•  Information about the National Advocacy Service here

Contact the National Advocacy Service on 0761-07-3000 to arrange local supports

 

Or  Apply to Use the NAS Service directly or refer someone to use the service via a self referral form available here

• See pages 14 - 19 here for a template Independent Assessment of Needs (IAN)

• Day Service Opportunity Officers for Adults with Disabilities - see your particular local HSE disability day service office for the contact details here. Address your correspondence to t your Day Service Opportunities Officer (we are not sure if these details still apply since the Health Regions took over fromm CHO areas)

Our Tips & more information re the Application Process for Personal Assistant Service

1. Unfortunately there is a post code lotto when it comes to getting a PAS in Ireland especially when it comes to an ME diagnosis*, and unfortunately there are still many parts of the HSE that don’t recognize ME or class it as a disability. The different Health Regions, formerly called CHO's (Community Health Organisations) have different systems & different assessments & those assessments can differ within the same Health Region. No consistency in approach so no equitable assessment model.

*As ME is not on the list of approved disabilities at most local disability services people have experienced the situation where they are being told that they are not even entitled to get an assessment, please keep in mind the fact that the Government states that Disability Services are NEEDS based, not diagnosis based. 

It’s not up to someone to say whether you’d get a PAS or not based on a diagnosis name, it’s up to the Care Needs Assessment that takes place following an application, and that assessment will look at your impairments and the severities of those symptoms that prevent you from being active and being able to live independently. 

2. Before applying for a PAS, we recommend that you take time to fill in your own assessment of need. This means thinking about what you would use your PAS for on a day to day basis.

Independent Living Movement Ireland (ILMI) has developed a template Independent Assessment of Need form that you can use to map out your needs and the amount of hours you think you would need from a PAS to do the things they do.

You can list not only the PAS supports you might need but also Assistive Technology (AT) or environmental controls in your home that would maximise your independence and control over your life. 

• See pages 14 - 19 here for ILMI's template Independent Assessment of Needs (IAN)

3. Include the following with your application for Personal Assistant Service i.e., along with the application form. (this is our advice and not HSE obligatory)

• A short document saying: ME is a disability and is recognised by the CCO who is responsible for the current HSE National ME Clinical Guideline development project. It is also recognized by the HRB under its WHO classification G93.3. You could include those two facts about ME into an additional document along with your application form for a PAS. 

• You could also include on the additional document a before and after essay, i.e. a few paragraphs explaining what you could do before illness and about the difficulties you have now that prevent you from being active; what investigations, treatments and therapies you have tried. You need to get across what it is that prevents you from doing x y and z and that without support you are incapable of buying groceries, preparing and cooking food, cleaning, doing laundry, attending medical appointments etc etc.
  ME won’t qualify as a disability unless you clearly outline what the disabilities and difficulties are. Your difficulties will be evidenced at your Care Needs Assessment but not all difficulties will be obvious at one assessment.

•  If you have any copies of any test results that indicate disabilities include those with your application form.

• In addition to completing the above mentioned Independent Assessment of Need (IAN) you could also complete (i) My Needs Statement and (ii) Personal Needs in My Home documents; see more about those below.

 

(i) The My Needs Statement is based on the HSE’s 'National Guidelines on Accessible Health & Social Care Services' (2014) and on an Myalgic Encephalomyelitis (ME) patient's specific needs. The template can be edited to suit you when faced with the problem of how to explain ME.

My Needs Statement Template 

 

The Personal Needs in My Home document is based on ILMI's 'Pathways to a Personal Assistant Service document (March 2022), on our knowledge about the specific tasks a carer provides in the home, and our knowledge of ME patients' needs. The template can be edited to suit you when faced with the problem of explaining your impairments and needs

 

Personal Needs in My Home

• You could also include a completed DSQ2 Symptom and Severity Questionnaire by DePaul which would evidence disabling symptoms and symptom severities. You could have the completed questionnaire certified by your GP. The questionnaire is subjective, the GP’s input would be to say they agree with your details of your illness, DSQ2 Symptom & Severity Questionnaire

• You could also include a completed PEM Questionnaire (De Paul DSQ PEM Questionnaire - DPEMQ)
  
  Post Exertional Neuroimmune Exhaustion (PENE) is a key symptom of Myalgic Encephalomyelitis (ME). PENE is referred to as PEM by others. The PEM questionnaire by De Paul is a questionnaire on the post exertional response, i.e., PEM (PENE as per the ICC), an essential criterion for an ME diagnosis. See more on PENE (PEM) further on in this guide.
  
  By answering the questions, you get an idea of how ‘activity’, anything you do physically, cognitively, emotionally, affects you and what your individual post exertional response is, i.e., what symptoms occur and increase. Every person with ME is different. The post exertional response for a lot of people might not occur straight away and tends to be delayed 24 hours or 48 hours after activity. The questionnaire includes key indicators that show within answering a set of questions that it sounds like ME. PEMQ Questionnaire

• You could include a ticked Bells Severity Scale
  
  The Bell's Disability and Severity Scale is a good scale that could be used along with the categories Mild, Moderate, Severe, Very Severe, Profound, to determine near exact range. 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. See the scale here.

• You could include a ticked Functional Ability Scale
  
  A 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 here

Our advice is to include as many as possible of the items listed above to evidence your disabilities and difficulties. Please pace yourself and take your time to get through the task by breaking up the tasks and doing them over time or get a relative/friend/other to help you. 

4. If someone in Disability Services or elsewhere tells you that ME is not a disability and that it is likely you would not be entitled to apply for a Personal Assistant or that you would not get an assessement, I’d insist that they provide you with the PA application form anyway, stating that you’d like to proceed with the application, quoting that under section 8 of the Disability Act (2005), every disabled person is entitled to an independent assessment of their needs. As per section 8.5 of the Act, this assessment “shall be carried out without regard to the cost of, or the capacity to provide, any service identified in the assessment as being appropriate to meet the needs of the applicant concerned”.

You could also ask for the policy around the PAS assessment for people with disabilities under 65. It’s not up to anyone to decide whether you can make an application or not. Ask for the application form and the policy to be emailed to you or posted to your home address.

If you are still denied an opportunity to apply for a PAS and told that ME is excluded as a disability by the person you are dealing with in Disability Services, you could ask for their email address and send an email with the following content:

Dear X,

I am including a response from National Community Operations to an ME Advocates Ireland patient advocate.

The statement: ‘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 your area is not complying with by denying an assessment because ‘ME is not on the list of disabilities’.

This is the national position dated 09/02/23; I wonder why you are not adhering to it. There has been significant work undertaken to enable people with chronic illness to live their lives at home; the HSE provides Personal Assistant Services and Home Support Services as well as Respite Services and Therapeutic Supports, 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.

Kind regards,

XX

 

You could cc the National Director Yvonne O’Neill into your email to: communityoperations@hse.ie

Yvonne O' Neill is from the Office of the National Director Community Operations - Health Service Executive Room 1.33, Dr. Steeven’s Hospital, Dublin 8 - D08 W2A

5. Applying for PAS can be a lengthy and draining process for someone with ME so please be prepared for a long process and take care of yourself throughout the process.

6. It appears that keeping up with communications to your local disability service via phone calls and emails over time may help you get an opportunity for assessment.

 7. Read what Independent TD Thomas Pringle has said re the importance of a dedicated PA Support Service in a Dáil Motion in November 2019 and the supportive responses from other TDs here

8. Sometimes the HSE links we provide to various information can be changed and updated so some of the links we provide may not work anymore, if this is the case please search for the specific area you are interested via Google, other.

  

9. National Service Plan 2022 - National Service Plan (NSP) for 2022 sets out the services that will be provided to the people of Ireland for the investment entrusted to the HSE and within the strategic context of the HSE Corporate Plan 2021-2024 See here

‘Reform of Home Support

During 2022, in support of older persons, we will also continue to take forward the implementation of new integrated models of home and community support. This will enable increased access to care and supports at home and in the community, thus reducing the requirement for long-term residential care and acute services.’

 

‘Reform of Disability Services

The HSE is committed to delivering the key health and social support services that are required by people with a disability. This necessitates an incremental approach that lays firm foundations for developing services to improve the experience of care and services. Through reform programmes, we will support people with disabilities to live a full life in the community with access to a range of person-centred community services and supports, across their life spans. We will work to ensure compliance with standards and the highest quality of life of each individual. We will also reduce the number of people living in institutional settings by providing more appropriate community-based accommodation.’

 

See Pages 54 – 58 via this link here

 

 

 10. Disability Legal Information Clinic –  Online!

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. 

You can also email dlic@nuigalway.ie if you have any questions or would like to arrange an appointment. See more here

Please note that we do not have any feedback about this service so we cannot say whether it will be useful to you or not when it comes to applying for Home Support Services.

Pathways to a Personal Assistance Service (PAS) - Independent Living Movement Ireland (ILMI)

Image from ILMI 'Pathways to a Personal Assistance Service (PAS)' 

Information from Independent Living Movement Ireland re applying for Pathways to a Personal Assistance Service (PAS) published in 2022 includes: 

1. Introduction to the ILMI Pathways to PAS Paper

2. What is a PAS?

3. What could I use a PAS for?

4. How do I go about identifying my needs for a PAS?

5. Learning from other disabled people and building peer support

6. Applying for a PAS

7. Indepent Assessment of Need (IAN) Template 

 

See all information from ILMI re applying for PAS here. This helpful document is about giving disabled people as much information as possible when they go about thinking of applying for their own PAS.

Useful Tools to Support You When Applying for Home Support Services/Disability Services.

Some useful tools can be sent to the HSE at certain stages in your dealings with them, e.g. along with your application for a Home Support Service, when sending a complaint via Your service Your Say, when meeting the manager of Home Support Services or another carer agency for the first time.

These include:

• Personal Care Plan. See blog post for template here

• My Needs Statement. See blog post for those documents here

• Symptom & Severity Questionnaire, PEM Questionnaire, Bells Disability Scale, International Consensus Criteria & Primer, all available here

About Making a Complaint or Appealing a Decision

Are you unhappy with a Public & Community Health Service you received or were you denied a service you think you were entitled to?

Please see more information about making a complaint or appealing a decision here. You will need to go to the heading 'Complaints about Public & Community Health Supports' further down the page.

HSE-Funded Assisted Living Information -  the Irish 

Wheelchair Association

Your local HSE health centre, hospital, or Irish Wheelchair Association service can advise or support you on how to apply for an assisted living service. The number of hours of support you are allocated is agreed between you and the HSE.

 

On receiving the service, personal assistants will be assigned to come to your home each day or week for a number of hours allocated by the HSE to support you with your individual needs. This may include for example, assisting with personal care, household chores, supporting you during study or work, playing sports, pursuing your hobbies or socialising.

 

If you are new to the service, it can take a bit of time to work out how you would like to use your personal assistant service hours, but there is support to help you through this transition and to help you in deciding how to make the most of the service.

Please read about HSE-Funded Assisted Living here

Carers

Entitlements for Carers

 

Carers Support from the HSE - please see what is available to carers here

How to apply for Carers Allowance

Citizens Information here

HSE Information here

 

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

 

How to Apply for the Carers Support Grant

Application form along with full details on the Carer's Support Grant are available via the link here

You can find out more about your rights & entitlements as a family carer in the comprehensive guide here

 

Other Carer Supports 

- Family Carers Ireland

National Freephone Careline 1800 24 07 24

www.familycarers.ie twitter /Carersireland

email: - careline@familycarers.ie

www.youngcarers.ie

 

Membership of Family Carers Ireland (FCI) 

(FCI) is the national charity representing Ireland’s 500,000+ family carers who provide care in the home to loved ones, family members, relatives, friends and neighbours of all ages.

‘Our focus as an organisation is on family carers. We are the charity that asks the carer how they are. Whether you are caring for a young child or an adult with an intellectual or physical disability, a spouse with a terminal illness, an ageing parent or a loved one with a mental health illness, FCI is here to help you maintain your caring routine and to inform policy and public debate surrounding family caring.

We understand that family caring can be rewarding but also a struggle and when you need our help, we are standing by to support you. We believe that no one should have to care alone.

Your membership and involvement counts. Carers’ strength comes from unity in numbers.  The bigger our carer community grows, the stronger your voice becomes on issues directly related to family caring.’ – FCI 

See link here

 

 

- Support via Facebook pages

Family Carer Support Group specifically for family Carers in Ireland to network and support each other here

Another Facebook page for family Carers here

 

 

 

 

 

Parking Permits

Did you know that the Irish Wheelchair Association launched an online portal which allows first time applications apply for a parking permit and allows existing customers to renew their parking permits online?

View the disabled parking permit portal here

 

 

 

Feedback from the ME Community re Public & Community Services

 

-   Home Support Service

     Feedback to ME Advocates Ireland (MEAI) has shown that the application for the Home Support Service is a very tricky process that takes time. It is a postcode lotto in that some Health Regions in the country can be more helpful than others. Most Health Regions do not recognise ME as a disability so it will be a case of getting it across to them that you have an illness that causes disabling symptoms that prevent you from living independently and taking care of yourself. Always think of your worst day and try to get that across. You could use consultants and GP letters as support and to convey the difficulties you experience as a result of having an illness.

If the public health nurse (PHN) replies saying you are not entitled to an assessment get back to them and ask on what criteria did the HSE base that decision and ask for a copy of the policy.

If you get a face-to-face assessment with the public health nurse have a friend or family member present and let them speak on your behalf and explain your difficulties. Let them answer the door, etc. and show evidence of your disabilities and difficulties 

If you get turned down, again ask the public health nurse what policy the HSE follow to do the assessment and make the decision and ask for that policy.

Make sure that you get a contact number and email address for the PHN. Having an email address to contact the PHN creates a paper trail to back you up. They don't like giving emails, but you can insist on one.

Might be worth using the name Myalgic Encephalomyelitis (ME) and correct them when they speak about ‘cfs’ or chronic fatigue telling them chronic fatigue is a symptom of many illnesses.

 

     A focus on the Irish situation with regard to the essential Home Support Service and Personal Assistant Support (PAS) for people with disabilities as a result of having ME via link here

 

 

 

Personal Stories 

Story 1.

-     In the world of disability (HSE), ‘you can do it once, you can do it all the time’ is the pervasive, unrealistic & dismissive culture. Read a couple of personal stories from people who struggled to get appropriate care for their needs from the HSE.

Christine Fenton has had ME for 30 years. She gave a harrowing account of one of her worst times living with Severe and Very Severe ME about when she faced many horrendous hurdles including those she met trying to access various HSE healthcare services.

 

Story 2.  

·    Support outside the home comes under PA support (Personal Assistant) only available to those with a disability. As ME is not on the list of approved disabilities at most local disability services people have experienced the situation where they are not even entitled to get an assessment, but keep in mind the fact that the Government states that Disability Services are NEEDS based, not diagnosis based.

It appears that keeping up with communications to your local disability service via phone calls and emails over time may eventually get you an opportunity for assessment.

Corina Duyn, a person with Severe ME, started the process through her Public Health Nurse, who fought alongside her on her behalf. Disability Services had totally dismissed her because of ME. Applying for PA Support can be a lengthy and draining process for a healthy person whatever about someone with ME. After a two-year long battle with the HSE Corina finally managed to be awarded full PA hours (Personal Assistance) to have control over her life and to also be allowed to leave her home with her PA. The whole process that Corina was involved in is documented in various posts on ME Advocates Ireland’s Blog here

 

Updates

09/02/23 In relation to HSE Disability Services

For anyone engaging with Disability Services, especially those who are 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 national standard now stated which if your area is not complying with 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 not available to all patients and there is much more work to be done.

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.

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.

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.

#

01/09/23

MEAI's Pre-Budget 2024 Submission here

Keeping Up To Date

We aim to update the information shared on this page as often as possible. Please be patient if a link is broken or you find that information no longer applies. The HSE change their information from time to time.

You can contact us via email if you want us to correct any information no longer relevant.

Sending Your Feedback

You can write to us if you would like to share your feedback, good or bad, about your experience with an application process or a service you have obtained. It would help us keep up to date with what is currently happening in the community.

Ways to Contact Us

You can contact us via the 'Post a Comment' section below or via our Private Message button on our Facebook Page or via email; our email address is below

info@meadvocatesireland.com