Disability Services - Assessment of Needs
Important Background Information
*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.
When you look up HSE Disabilities Services you will come across information that only relates to children, i.e., "An Assessment of Need is an assessment carried out by the HSE for children or young people with a disability." Whether you are an adult or a child, please keep in mind the fact that the Government states that Disability Services are NEEDS based, not diagnosis based.
Disability services are generally structured to be need-based rather than diagnosis-based. This means that services are provided based on an individual's assessed needs, rather than on a specific diagnosis. The focus is on providing tailored care and support to meet individual requirements.
It’s not up to someone to say whether you’d get a Personal Assistant Service (PAS) or not based on a diagnosis name, it’s up to the Care Needs Assessment that takes place following an application. That assessment will look at your impairments and the severities of those symptoms that prevent you from being completely active and being able to live independently.
An Assessment of Need is set out in the Disability Act 2005.An Assessment of Need as outlined in the Disability Act 2005 will identify your health needs and what services are required to meet your needs.
You could remind Disability Services/Home Support Services/your local Public Health Nurse 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”.
Disability Act 2005 is linked in our Further Information section at the bottom of the page.
Independent Living
Independent
Living is being in control of how things are done, and for many disabled
people this can best be achieved by having access to a Personal Assistance
Service (PAS) and having access to Assistive Technologies that meets a
disabled person’s particular needs. Other fundamentals to Independent Living
include having access to the built environment, housing, transportation, peer
support and accessible information.
At the core of the Independent Living Philosophy is people living like
everyone else: being able to have control of your life, having opportunities to
make decisions about your life and being able to choose activities that you
want to do, regardless of impairment.
A Personal Assistance Service (PAS)
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.
Before applying for a PAS, we recommend that people with ME related disabilities take time to fill in their own
assessment of need. This means thinking about
what you would use your PAS for on a day to day
basis.
You can list not only the PAS supports you might
need but also Assistive Technology (AT) or environmental controls that would maximise
your independence and control over your life.
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 (PAS) 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 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 single 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 the ILMI
document entitled 'Pathways to a Personal Assistance Service'. Please also see
our own tips from 1- 6 further below, as well our Further Information section at the end of the page 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 or into another care setting 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 your needs change.
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 enable 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
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 ILMI pages to help you write your own lists which could be the following:
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 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 in your area. 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 in our community 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 a Home Support Service which provides support in the home only.
You can use the ILMI Independent Assessment of Needs (AON) form or similar that 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 above
- You can find your Health Region and Contact information for your Disability Services Manager via the link to HSE information here or
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 means 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 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 piece saying: ME is a disability and is recognised by the CCO who is responsible for the current HSE National ME Clinical Guideline development project. You could include that fact about ME in 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.
ME won’t qualify as a disability but evidencing your disabilities and difficulties is important so that you qualify for supports. Your difficulties will be evidenced at your Care Needs Assessment but not all difficulties will be obvious at one assessment, it has to be spelled out and clearly evidenced.
- 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.
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
- 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.
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 Service or that you would not get an assessment, please insist that they provide you with the PAS 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 adults with disabilities. 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:
I am including a response from National Community Operations to an ME Advocates Ireland (MEAI) 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; 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.
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 a 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, and following that an opportunity to follow up on the assessment.
You can find your Health Region and Contact information for your Disability Services Manager via the link to HSE information here or
Further Information
- Disability Act 2005 in full linked here
- 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
- National Service Plan 2025 - National Service Plan (NSP) for 2025 sets out the services that will be provided to the people of Ireland for the investment entrusted to the HSE. See here
- 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.
Feedback
We would value any feedback, positive or negative, that you may have with regards to Disabilities Services and the PA Service; feedback evidences what is happening in the community and provides us with information that may help another individual. We also raise issues reported to us from the community when contacting the HSE and others.
Thank you for your support.
