towards personalised b udgets for people with a …...1.7 conclusions 38 2 national and...

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June 2018gov.ie

Towards Personalised Budgets for People with a Disability in IrelandReport of the Task Force on Personalised Budgets

MINISTER’S FOREWORD 7

CHAIRMAN’S FOREWORD 9

EXECUTIVE SUMMARY 12

VISION STATEMENT 17

SUMMARY OF RECOMMENDATIONS 18

GLOSSARY 21

1 Introduction: Background and Context 28

1.1 Background and Context 28

1.1.1 Establishment of Task Force 28

1.1.2 Task Force Terms of Reference for Strategy Group 29

1.1.3 Mission Statement 29

1.1.4 Task Force Structure 30

1.2 Scope 31

1.3 Methodology 33

1.4 Policy Context 34

1.4.1 Transforming Lives Implementation 34

1.4.2 Value for Money and Policy Review of Disability Services – individualised funding 34

1.4.3 National Framework for Person Centred Planning for Disability Services 35

1.4.4 Wider Policy Considerations 35

1.5 General Eligibility for Health Services 36

Contents

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1.5.1 Persons with full Eligibility 36

1.5.2 Persons with Limited Eligibility 37

1.6 Disability Services funded by the HSE 37

1.7 Conclusions 38

2 National and international experiences 39

2.1 International experience of personalised budgets 39

2.1.1 HRB individualised budgeting for social care services for people with a disability: International approaches and evidence on financial sustainability 39

2.1.2 National Disability Authority (NDA) Synthesis Paper onPersonalised Budgets. 40

2.2 Eligibility and Resource Allocation 41

2.2.1 Eligibility 41

2.2.2 Allowed spending 42

2.2.3 Resource allocation 43

2.3 Supports to apply for and administer personalised budgets 43

2.3.1 Brokerage 43

2.3.2 Organisation of brokerage and other support services 44

2.3.3 Regulating brokerage services 45

2.4 Governance and accountability 45

2.4.1 Options for allocation or payment of funding 45

2.4.2 Accountability 46

2.4.3 Training for personalised budget holders around responsibilities as employers 48

2.4.4 Quality assurance 48

2.4.5 Adult safeguarding 49

2.5 Financial Sustainability 50

Department of Health

2.5.1 Risks identified in the literature that may affect financialsustainability 51

2.6 Existing Irish models of individualised funding 52

2.6.1 National survey on the prevalence of personal budgets 52

2.6.2 Task Force learning from Irish experience 53

2.7 Conclusions 54

3 Supports for individuals and families availing of personalised budgets 55

3.1 Advice Paper on supports to apply for and use personalised budgets 55

3.2 Task assigned to the Consultative and Advisory Group 55

3.3 Recommended supports identified by the Task Force 56

3.3.1 Education, Capacity Building and Training 56

3.3.2 Information supports 56

3.3.3 Application process 57

3.3.4 Assessment 57

3.3.5 Planning 57

3.3.6 Supports to Administer Personalised Budgets 58

3.3.7 Supports for those who want to employ their own staff 58

3.3.8 Review 58

3.4 Conclusions and Recommendations 58

3.4.1 Conclusions 58

3.4.2 Recommendations related to this Chapter 59

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4 Personalised Budgets Consultation Process – Summary of Key Findings 60

4.1 Consultation Process 60




5 Vision and Values 63

5.1 Vision Statement 63

5.2 Guiding Principles and Values underpinning the Personalised Budgets Process 63

5.3 Outcomes 66

5.4 Conclusions 68

6 What the personalised budgets administrative process will look like 69

6.1 Introduction 69

6.2 Types of supports and services that can be funded 70

6.3 Personalised Budget System Stages 71

6.3.1 Entry to a personalised budget system 71

6.3.2 Stage 1 – Information on Supports Options 73

6.3.3 Stage 2 – Application 73

6.3.4 Stage 3 – Support and Planning 74

6.3.5 Stage 4 – Implementation and Accountability 74

6.3.6 Stage 5 – Review 79

6.3.7 Appeals and Complaints Processes 79





7 What the personalised budgets governance process will look like 82

7.1 Governance for personalised budgets 82

7.1.1 Levels of governance 83

7.1.2 Guidance and Information 84

7.1.3 Role of Liaison Officers 84

7.2 Selection of service providers or employees 85

7.3 Review and monitoring 85




8 Financial Considerations for Personalised Budgets 89

8.1 Financial Sustainability - background 89

8.2 Risks that may affect financial sustainability 89

8.3 Planning for initial demonstration projects –Costs and Financial Sustainability considerations 91

8.4 Suggested indicators to guide planning and evaluation of demonstration projects 92

8.5 Conclusions 92


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9 Moving Forward with Personalised Budgets 93

9.1 What the next steps towards implementation should be 93

9.1.1 Demonstration Projects 93

9.1.2 Evaluation of initial demonstration projects 94

9.2 Additional considerations 95

9.3 Areas where members of the Task Force held differing views 96

9.4 Potential areas for future expansion 97

9.5 Recommendations 97

10 Appendices: 99

10.1 Supporting Documentation (available on Department of Health website) 99

10.2 Task Force Membership 100

10.2.1 Strategy Group Membership 100

10.2.2 Advisory and Consultative Group Membership 101

10.3 Information on supports for self-managing a personalised budget 102

10.4 Note from Advisory & Consultative Group on possible future areas for extension of personalised budgets 105


A central goal of the Government’s reform programme for disabilityservices is to support people with disabilities to live independent livesin the community and to make their own choices and decisions. This isembodied in Transforming Lives, the programme to implement therecommendations of the Value for Money and Policy Review ofDisability Services in Ireland. It was also the driving force behind theProgramme for a Partnership Government’s commitment to theestablishment of a Task Force on Personalised Budgets and I ampleased to see that the principles of choice and control are fullyreflected in this Task Force report.

One of my principal objectives in setting up the Task Force was to seethat service users, people with disabilities, and their families were fullyrepresented in the process and without doubt their active participationon the Task Force greatly enhanced and informed its work. The TaskForce also arranged a public consultation to ensure that all of thosewith an interest in personalised budgets had an opportunity to havetheir voices heard.

The approach adopted by the Task Force in examining the evidencebase, considering international experience and most importantly, inengaging and consulting with service users, civil society andstakeholders has ensured that this Report provides an informed androbust roadmap for moving forward with personalised budgets.

I wish to acknowledge the work of the members of the Task Force andin particular its Chair, Christy Lynch, whose vision and commitmentbrought this report to fruition. I would also like to commend the workof the Advisory & Consultative Groups, ably chaired by Siobhan Barron.Their dedication, and that of the wider Task Force, has ensured that theperson is placed at the centre of the decision making process and thatthe independence and choice of the individual are respected.

Minister’s Foreword

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I would also like to pay tribute to the late Martin Naughton who wasappointed to the Task Force but sadly passed away before being able toparticipate. Martin was a tireless advocate for people with a disabilityand his campaigning over many years put the issue of personalisedbudgets firmly on the public policy agenda. The publication of the TaskForce Report marks a significant milestone in enhancing choice andperson centred support which Martin always advocated for.

I fully endorse this Report, and was delighted to present it toGovernment for approval. I look forward to the proposed models beingroad tested without delay and the learnings from the demonstrationsites informing the roll out of personalised budgets.

Finian McGrath, T.D.Minister for Disabilities


The Programme for Partnership Government in 2016 included acommitment to the establishment of a task force on personalisedbudgets for people with disabilities. The Task Force was established byMinister Finian McGrath, TD on 20th September 2016. The remit ofthe Task Force was focussed on giving people with disabilities morechoice in accessing health-funded personal social services. From theoutset, the Task Force set about its work in an open and transparentway and minutes of all meetings, documents and the work plan wereposted to the Department of Health website. It was important to learnfrom the international/Irish experience regarding the utilisation ofpersonalised budgets by people with disabilities. In this regard, anumber of Irish projects presented to the Task Force and acomprehensive review of the international literature was undertaken.

The structure of the Task Force comprised of a Strategy Group and anAdvisory and Consultative Group, supported by a Reference Group.This ensured a wide range of perspectives and most importantly thelived experience of people with disabilities and their family memberswere brought to the Task Force.

A detailed work plan was developed at the outset and the Task Forcemembers made available their knowledge, expertise and experience toprogress this.

In late 2017, when the work was at a reasonably advanced stage, weheld four consultation meetings across the country in Dublin, Cork,Galway and Cavan. We also launched a public consultation invitingsubmissions from any interested party to submit their views to the TaskForce. Both the meetings and the public consultation provided us witha wealth of additional information and views which assisted us in ourtask. I would like to thank all those who took the time to attend themeetings and/or make a written submission.

Chairman’s Foreword

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From the feedback to the public consultation, it was striking to see theexcitement and enthusiasm for the opportunities that a personalisedbudget could offer. This was however balanced with some amount oftrepidation around what would be involved in managing a personalisedbudget. If accepted by Government, I hope that the work of the TaskForce, and the framework for personalised budgets that it recommends,will provide enough clarity for people to consider a personalised budgetas a real alternative to a traditional service model.

Building on the review of evidence and consultations carried out by theTask Force, the report advocates three different models of howpersonalised budgets might be accessed by people with disabilities.

1. Person-managed fund, often referred to as Direct payments2. Co Managed with the service provider3. Broker managed fund

The rationale for several models is a recognition of the fact that no twopeople are the same and therefore, ‘one size does not fit all’. Werecommend that each of these models be tested and evaluated withintwo years of the publication of the Task Force Report to inform a widerroll out of personalised budgets in Ireland.

As Chairman, I want to extend my sincere thanks to every member ofthe Task Force for their hard work, dedication and commitment toensuring that people with disabilities have more choice and control asto how they are supported. I would also like to thank the Secretariatwho I worked closely with for the duration of the Task Force for theirvalued support, dedication and attention to detail throughout theprocess.

It is clear from the international evidence that personalised budgets arenot a panacea and not for everyone with disability. It is also clear thatfor those who chose to avail of a personalised budget they havesignificant choice and control and therefore have been able to live thelife of their choosing and realise their personal dreams and ambitions.The learning both from the international evidence and the views


expressed from the wide ranging consultation was that there are manyother areas of Public Service where personalised budgets could beutilised. I am confident that the work of the Task Force has laid a strongfoundation to introduce personalised budgets in Ireland. As with anyfoundation it is my hope that this will continue to be built on which willassist in ensuring a better quality of life for people with disabilities inIreland.

Christy LynchChair of the Task Force on Personalised Budgets

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ContextPersonalised Budgets arebecoming increasingly popularinternationally as a way ofproviding individuals with morechoice and control over theservices and supports they access.The Programme for PartnershipGovernment (2016) contained acommitment to the introductionof personalised budgets forpersons with disabilities.

In general a personalised budgetis an amount of funding which isallocated to an individual by astate body so that the individualcan make their own arrangementsto meet specified support needs,instead of having their needs metdirectly for them by the State.

Personalised budgets are optionaland people with disabilities maychoose to retain traditionalservices from the HSE or a HSEfunded service provider.

The Task Force on PersonalisedBudgetsThe Task Force was established bythe Minister of State for

Disabilities, Finian McGrath T.D.on 20 September 2016, on foot ofa commitment in the Programmefor Partnership Government.

The Task Force on PersonalisedBudgets consists of a StrategyGroup and an Advisory andConsultative Group. Its remit wasto make recommendations onpotential models of personalisedbudgets, which will give peoplewith disabilities who wish to availof a personalised budget morecontrol in accessing health fundedpersonal social services, givingthem greater independence andchoice in accessing services whichbest meet their individual needs. A Reference Group comprisingpeople with lived experience ofdisability and disability serviceswas also established, and theviews of this group informed andinfluenced the final report of theTask Force.

The remit of the Task Force was toconsider HSE Disability Servicefunded person social services andsupports for all adults. It does notinclude clinical services currently

Executive Summary


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provided by the health services(such as medical services andtherapy supports), or generalliving expenses. The Task Forceworked with the aim ofdeveloping a system that canevolve and grow to meetadditional areas of expenditureover time.

Visions and Principles guiding theTask ForceThe Task Force had a clear visionfor people who may want to use apersonalised budget. That visionwas that personalised budgets willenable a person with disabilitiesto have choice and control overindividualised supports in allaspects of their lives, to live anindependent life and to be anactive participant in theircommunity.

The Task Force also felt that apersonalised budget shouldembody the key principles of:choice; dignity, empowerment,equality, independence, person-centredness, and respect.

Research findingsThe Task Force undertook adetailed work programme toenable it to make evidence-basedproposals. An in-depthinternational evidence review

supported by work donepreviously by the HRB and theNDA gathered information ondifferent forms of personalisedbudgets in other countriesincluding the people who wereeligible, and the types of supportsand services that were available.The challenges, successes andobstacles experienced in thesecountries helped the Task Force torefine its proposals.

Research has shown that betteroutcomes, such as an enhancedfeeling of well-being on the partof budget holders, are achieved,but it should be noted that therehas been little formal evaluationof personalised budget systems inother countries. However,international experience did drawattention to the risk of increasingexpectations and new demand,leading to higher costs if notcarefully managed. Transactioncosts such as implementationcosts, costs of commissioning orarranging services must also beconsidered when introducingpersonalised budgets.International evidence highlightedthe need for transitional and set-up funding to develop newsystems, train staff and to test andevaluate the new processes.

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The review of personalisedbudgets in other countries wascomplemented by informationgathering on a small number ofexisting approaches toindividualised funding in Ireland. The Task Force also undertook a

public consultation process thatgave depth to their understandingof what people expected from apersonalised budget, what itmight involve and what supportsthey would need to use one.


The model proposedBased on the outcomes of the work programme, and the deliberationsof the members, the Task Force took the view that a personalisedbudget model should follow the process set out below:

Before: Assessment of Support Needs - People in receipt ofservices or supports funded by HSE Disability Services,or looking to receive such supports or services, areassessed using a standardised assessment process and aresource allocation tool. They would also identify theirneeds and desired outcomes through a person-centredplanning process. This would form the basis for anindicative budget, which the person may then choose touse to avail of in the form of a personalised budget.

Stage 1: Information on Supports Options – the person engagesin an information and briefing stage to determine if apersonalised budget is likely to be suitable for them. Thismeans that the person is fully informed of the benefits,risks, opportunities and responsibilities of a personalisedbudget before choosing to avail of one.

Stage 2: Application – The person applies for a personalisedbudget and works with an assessing practitioner to outlinea Personal Support Plan (PSP). This outlines what fundingand supports are available.

ConclusionsThe Task Force has identified thatcomprehensive guidance will needto be developed to supportpeople through the process ofconsidering and applying for apersonalised budget. It is alsorecommending that astandardised assessment tool beput in place under which aselected resource allocation toolcan be used to quantify supportneeds. These tools will helppeople to make an informeddecision about whether a

personalised budget will work forthem.

The Task Force came to theconclusion that the final design ofany system of personalisedbudgets in Ireland can only bedecided upon once a series ofinitial demonstration projectshave been evaluated and thefindings assessed, alongside theoutcomes achieved by the personand the financial sustainability ofthe system as a whole.

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Stage 3: Support & Planning – Any queries raised by the personare addressed and each of the three payment optionswould be discussed (Person Managed Fund; Co-managedwith Service Provider; Broker Managed).

Stage 4: Implementation and Accountability – The persondecides on their preferred payment model option for apersonalised budget. The person finalises their personalsupport plan, in consultation with a Liaison Officer, aService Provider or a Broker.

Stage 5: Review & Governance – The review stage involves areview of both the person’s experience of a personalisedbudget and the outcomes achieved, as well as a financialreview to ensure that the money is being spent in line withthe support plan. Adjustments to the personal supportplan, the payment option selected, or the funding level canbe made at the review stage. A person may also choose togo back to a traditional service provider if they find that apersonalised budget does not work for them.

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Recommendations

The Task Force has produced 18recommendations which outlinethe overarching framework for theintroduction of personalisedbudgets in Ireland under thematicheadings which included: NationalFramework for PersonalisedBudgets, Operation ofPersonalised Budgets, Supportsfor Individuals, DemonstrationProjects, and AdditionalConsiderations. Theserecommendations are wideranging and encompass the

assessment process, theinfrastructure and supportsrequired for personalised budgets,the governance process, and theactions to be taken byGovernment. The Task Force alsomakes the case for initialdemonstration projects to test arange of issues such as differentpayment options, the costs ofoperating a personalised budgetfor the individual, qualityassurance, employment issues,and financial sustainability in theIrish context.

Vision StatementPersonalised budgets will enable a person withdisabilities to have choice and control overindividualised supports in all aspects of their lives,to enjoy an independent life and to be an activeparticipant in their community.

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National Framework for Personalised Budgets1. A personalised budget may be used for support with daily living

activities and participation in the community, including personalassistance or home care support.

2. A personalised budget should not duplicate any supports orservices provided by another Department or Statutory agency orbe used for day to day living costs such as rent, groceries, utilitybills or other consumer spending.

3. The personalised budget arrangements will allow for three possiblefunding models: 1. Self-managed fund/ Direct payment2. Co-managed with HSE/Service Provider3. Broker/Intermediary managed.

Operation of Personalised Budgets4. The operation of personalised budgets, following a standardised

assessment of the individual’s needs, will follow the five stagesoutlined in Chapter 6 of this report i.e.1. Information and Support2. Application3. Support and Planning4. Implementation and Accountability5. Review.

5. The governance of personalised budgets will follow the guidelinesoutlined in Chapter 7 of this report. The level of governance willvary depending on the funding option and on the amount of thepersonal budget approved.

Summary of Recommendations

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6. Funding should be approved on the basis of a standardisedassessment of individual need. A profiling tool should be selectedfor use in the initial demonstration projects.

7. Following notification of indicative budgets a detailed spendingplan will be agreed by the assessing practitioner and the applicant(and their family or other support network as appropriate), as tohow their support needs will be met.

8. This support plan will take into account the natural supports thatare provided through family, community or other state supports.The final personalised budget may vary from the indicative budgetbased on the outcome of this planning process.

Supports for Individuals opting for personalised budgets9. A standardised training package should be made available on the

various elements of managing a personal budget. Training shouldinclude a focus on HR law, finance, employment relations etc.

Demonstration Projects/Testing Phase10. A key action in moving to personalised budgets is to undertake a

planning and testing phase. The Department of Health and theHSE should establish demonstration sites to test the delivery ofpersonal budgets (e.g brokerage models, direct payments, etc.)with a view to identifying the best approach to the wider roll-outof these payment models following the initial demonstrationphase.

11. The demonstration projects should also test a range of issues suchas the costs of operating a personalised budget for the individual,quality assurance, employee management issues, governancearrangements and financial sustainability in the Irish context inaccordance with the recommendations of the Task Force outlinedabove.

12. The demonstration projects should be implemented over a twoyear period from the date of publication of the Task Force Report.

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13. A formal evaluation of the demonstration projects should becompleted and submitted to the Department of Health at the endof the two year period.

14. The Department of Health should assess the evaluation report andmake recommendations to Government on the next stepsregarding roll out of personalised budgets.

Other15. Learning from the demonstration sites should inform the

development of guidelines required to enable furtherimplementation of a personalised budgets system. This shouldinclude specific provisions to support the introduction of a directpayment model of personalised budgets and graded levels ofaccountability.

16. In conjunction with the Department of Employment Affairs andSocial Protection, the Department of Public Expenditure andReform and the Department of Finance, the Department of Healthshould examine whether legislative change may be required toensure that a personalised budget is not subject to assessment asincome or means-tested for the purposes of the Finance Acts orSocial Welfare Acts, or for other income tested schemes.

17. The Department of Health should report progress on thedevelopment and implementation of personalised budgets underthe National Disability Inclusion Strategy.

18. The outcomes of the demonstration projects should be sharedwith other Government Departments, who may wish to considerthe potential to implement personalised budgets in their sector.


AccountabilityAccountability is the obligation toaccept responsibility for, and toaccount for your actions, and todisclose the results of thoseactions in a transparent manner.

Public bodies are accountable totheir stakeholders and must beable to demonstrate that theirpolicies and programmes achievethe intended result, and that theyuse their resources effectively toachieve their stated goals.

AccessibilityFor people with disabilities,accessibility means having access,on an equal basis with others, tothe physical environment, totransportation, to information andcommunications, includinginformation and communicationstechnologies and systems, and toother facilities and services whichare open to, or are provided to,the public, both in urban and inrural areas. Accessibility isessential to enable people withdisabilities to live independentlyand participate fully in all aspectsof life.

Activities of Daily LivingActivities of Daily Living are thethings people do every day tolook after themselves, such aswashing, dressing, eating, going tothe bathroom, walking andmoving about (particularly gettingin and out of bed, or sitting andstanding).

AdvocacyAdvocacy is a process ofsupporting and enabling people toexpress their needs and wishes;access information and services;weigh up decisions; explore theiroptions; deal with serviceproviders; defend and promotetheir rights and responsibilities.

An independent advocate issomeone who is separate to aservice provider or family, andwho represents their client’s willand preferences. The advocate’srole is to support an individual tospeak for themselves, or to speakon their behalf.

Self-advocacy is when anindividual speaks up forthemselves and makes their needs

Glossary

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and wishes known and their viewsheard. Some family members orrepresentative bodies can alsotake on an advocacy role for anindividual.

Assessment of needThe process to identify thesupport needs of an individualwith a disability. Depending onthe context, it can also refer toassessments of the care needs ofother groups, such as older peopleor people with mental healthneeds.

In the case of a person with adisability born on or after 1st June2002, an assessment of needmeans a statutory assessmentprocess which involves a numberof different health professionalsand covers the full range of thechild’s needs, including the needfor therapies.

In the case of adults, a referenceto an assessment of need usuallyrefers to a measurement of theindividual’s social care needs only– an adult’s therapy needs areevaluated separately. Following anassessment of need, supportneeds can be quantified using anagreed resource allocation tool.

BrokerageBrokerage is a way of providingpeople with the information,support and guidance they needto plan, arrange for and managetheir supports and services.

Brokers must be independent, andmust operate in the best interestof the individual who has askedfor their support. Brokerage canbe provided by people ororganisations who specialise inbrokerage only, or through serviceprovider organisations.

Assisting a budget-holder to workout the services and supportswhich best meet their needs andpreferences, and to obtain theseservices within their availableresources is a core feature ofbrokerage, but apart from that therange of services provided bybrokers varies as well as theduration and type of supportprovided. The ways in whichbrokerage is funded also vary.

CapacityDecision-making capacity is theability to understand, at the timethat a decision is to be made, thenature and consequences of thatdecision. Everyone is assumed tohave decision-making capacityunless it is proven otherwise.


People may have the capacity tomake some decisions but notothers, or to make decisions atcertain times but not at othertimes.

A person has capacity to make adecision if they are able tounderstand the informationrelevant to the decision; retain thatinformation long enough to make avoluntary choice; use or weigh thatinformation as part of the processof making the decision;communicate the decision inwhatever way they can (not onlyverbally). The Assisted DecisionMaking (Capacity) Act of 2015provides a legislative frameworkfor presuming and supportingdecision-making capacity.

ChoiceTo make an informed choice, aperson needs to build up a pictureof the available options beforecomparing the advantages anddisadvantages of each. Theinformation needed to supportinformed choice should beaccessible, understandable,relevant and of high-quality.

Circles of SupportA Circle of Support is a smallgroup of people who have apersonal relationship with a

person with a disability (oftencalled the focus person) and whomeet together on a regular basisto support that individual inachieving their life goals. Thefocus person is in charge, decideswho to invite into the Circle, andwhat goals he or she needs theCircle to support. The members ofthe Circle of Support may includefamily, friends and othercommunity members, acting in avoluntary capacity.

CommissioningCommissioning can refer to acomplex process carried out by anorganisation in respect of thepresent and future support needsof a large group of people, or itcan refer to a more straightforwardand immediate process ofobtaining services for oneindividual person.

Commissioning by an organisationis a longer term strategic planningtool that aims to link resourceallocation with critical policyobjectives, such as value formoney; meeting present andfuture needs; qualityimprovements; service useroutcomes.

Commissioning by, or on behalfof, an individual means selecting

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and securing support services forthat individual.

Direct paymentA payment, which may be in theform of cash, which is madedirectly to someone in need ofsupport to allow the persongreater choice and flexibilityabout how their supports andservices are delivered.

EligibilityEligibility means satisfying theconditions necessary toparticipate in a scheme orprogramme or receive a benefit.

General living expensesGeneral living expenses in thecontext of personal budgets arethe same type of expenses that aperson without a disability isreasonably expected to meet fromtheir own resources. Theseinclude utility bills, like electricity,gas, telephone etc; food anddrink; household goods; mortgageor rent; insurance.

GovernanceGovernance is the way in whichthe rules, processes and actions ofa project, programme or anorganisation are structured,regulated and held accountable.

In the case of organisations, theprinciples underlying corporategovernance are based onconducting the business withintegrity and fairness, beingtransparent with regard to alltransactions, making all thenecessary disclosures anddecisions and complying with allthe laws of the land.

HSE-funded disability servicesThe term “HSE-funded disabilityservices” is intended to be a typeof shorthand for the broadcategory of personal socialservices and supports which theHSE funds from its budget forspecialist disability services by itsDisability Services Division.Services which are funded byother Divisions within the HSE, orby other GovernmentDepartments, are not part of theTask Force’s remit.

Independent livingIndependent living means theequal right of people withdisabilities to live in thecommunity, with choices equal toothers, and to have their fullinclusion and participation in thecommunity supported.


Individualised BudgetingIndividualised budgeting is anumbrella term that may take manyforms, ranging from a method ofdetermining resource allocation toagencies based on assessed clientneed and actual costs, to a“money follows the client” model,a brokerage system or a personalbudget model administered by theindividual service user. Withindividualised budgeting, the maintransfer to the service user is thetransfer of choice and controlover funding decisions. This mightor might not involve the transferof actual funds to the individual.

Personal Support PlansA personal support plan is astatement of the supports andservices required by a person withdisabilities, based on their needsand goals. The service user shouldbe at the centre of the processused to define the support plan,which considers all forms ofsupport; from those availablewithin the family, other informalforms of support to more formalservices.

OutcomesOutcomes are the effects on theindividual of the services orsupports received. Outcomes maybe influenced by factors other

than quality of services, such asthe individual’s level of adaptiveability, degree of disability,personal characteristics, ormedical condition. Someoutcomes may be experienced ona short-term basis while othersmay be long-term or evenpermanent.

Person-centred planning Person-centred planning isdefined as a way of discoveringhow a person wants to live theirlife, and what is required to makethat possible. In person centredplanning the primary focus is onthe person, not on a disability oron a particular service.

Person centred planning isseparate to an assessment ofneed process or development of aservice plan, and may bedeveloped either within servicesor entirely independently of them.In either case, it is the individualor family who decides whether todevelop a person centred plan,how it is developed and whetherto pursue it once it is developed.

Personal Assistant A Personal Assistant (PA) providesthe person with a disability withone to one assistance with arange of daily activities, both

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inside and outside the home, asdetermined and directed by theindividual service user. Thepurpose of personal assistance isto promote choice and control, toempower the person with adisability, and to enable him/herto live an independent life inhis/her home and community. Theperson who avails of the PA’sservices is often referred to as theLeader.

Personalised BudgetGenerally speaking, a PersonalisedBudget is an amount of fundingwhich is allocated to an individualby a State Body so that theindividual can make their ownarrangements to meet specifiedneeds, instead of having theirneeds met directly for them bythe State.

By availing of a personalisedbudget the individual has greaterchoice and control over the way inwhich their needs are met,compared with direct serviceprovision.

In the case of the Task Force onPersonalised Budgets, apersonalised budget is an amountof funding which would be paidfrom the HSE’s budget fordisability services and provided to

an eligible person with a disabilityto meet their needs for personalsocial services and supports.

With a personalised budget, theperson with a disability would usetheir budget to make their ownarrangements to obtain thesupports or services of theirchoice, instead of having thoseservices identified for them by theHSE and provided for themdirectly by the HSE or a HSE-funded agency.

Quality assuranceThis is a systematic way ofmonitoring and evaluating thevarious aspects of a project,service, or facility to ensure thatstandards of quality are being met.

Resource allocationResource allocation provides away of calculating a fundingpackage which is based on anassessment of an individualservice user’s needs. Theallocation of resource has toreflect the needs of the individualbut will also (usually) beconstrained by the budgets offunders, and so the resourceallocation system can also act as away of balancing these twofactors.


Risk AssessmentA systematic process ofevaluating the potential risks thatmay be involved in a project orsystem.

Support workersWorkers whose job is to assistpeople with home support,personal support, and other typesof one-to-one assistance.

SustainabilitySustainability in the public sectorrefers to the ability of anorganisation to continueperforming efficiently andeffectively to achieve its statedgoals over the long term withinthe resources available to it.

Unbundling fundingFunding for disability services hastraditionally been provided in ablock grant to a service providerbased on the total number ofpeople using the service ratherthan the actual cost of eachperson. Switching to personalisedbudgets means that the cost ofthe service to an individual wouldneed to be calculated andseparated or “unbundled” fromthe overall grant paid to theircurrent service provider. How toachieve unbundling of funding inthe future will need to beexamined carefully by the HSE.

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Personalised budgets arebecoming increasingly popularinternationally as a way ofproviding individuals with morechoice and control over theservices and supports they access.The Programme for PartnershipGovernment contained acommitment to introducepersonalised budgets for personswith disabilities.

In general a Personalised Budgetis an amount of funding which isallocated to an individual by astate body so that the individualcan make their own arrangementsto meet specified support needs,instead of having their needs metdirectly for them by the State.

By availing of a personalisedbudget the individual has greaterchoice and control over the way inwhich their needs are met,compared with direct serviceprovision.

Applications for a personalisedbudget are optional and peoplewith a disability may retaintraditional services via the funderor a funded service provider. Theamount of funding made to anindividual available under apersonalised budget should notexceed the funding that would beavailable under a traditionalservice provider model.

The introduction of a personalisedbudget for individuals withdisabilities is mentioned in thereport of the Committee on theFuture of Healthcare –Sláintecare, which suggests thatpersonalised budgets wouldempower service users andfamilies to be key decision makersin how services are provided1.

1.1.1 Establishment of Task ForceThe Task Force was established bythe Minister of State forDisabilities, Finian McGrath T.D.

1 “Further work is needed to cost universal services for people with disabilities, which respect the autonomyof service users and their families as well as empowering them to be the key decision makers in howservices are provided. There is a movement towards personalised budgets for people with disabilities.Further work is needed on costing and changing to such a model of care. In the meantime it is essentialthat services are developed to better meet the needs of people with disabilities and their families.”Sláintecare Report. Houses of the Oireachtas Committee on the Future of Healthcare. May 2017 p. 67.

Introduction: Background and Context

1


on 20 September 2016, on foot ofa commitment in the Programmefor Partnership Government. Theremit of the Task Force was tomake recommendations on acost-neutral approach on apersonalised budget model thatwill provide individuals withdisabilities more control andchoice in accessing health fundedpersonal social services. While theconcept of personalised budgetsis not limited to health andpersonal social services,Government agreed that the TaskForce should focus on services foradults with disabilities funded byHSE Disability Services i.e. healthand social care. This is reflected inthe Task Force’s Strategy Group’sTerms of Reference, which clearlyoutline the objectives of the TaskForce.

1.1.2 Task Force Terms ofReference for Strategy Group• To consider the key elements

of a framework forimplementing personalisedbudgets with an initial focuson HSE-funded personal socialservices including: an effectiveapplication process; assessmentof need; eligibility; scope ofsupports and services thatcould be funded with suchbudgets; governance and

accountability; supports toindividuals and families to availof personalised budgets (e.g.brokerage, other administrativesupports, information etc.) andhow these elements can beoperationalised; as well as anyimplications of a programme ofpersonalised supports onservices and supports forpersons with disabilities;

• To consider the learning fromcurrent personalised budgetsinitiatives in this country andadvise on the case fordevelopment of a pilot withinbuilt evaluation in order totest recommendations andprovide learning for nationalroll-out;

• To consult with relevantstakeholders and civil society;

• To present a report outliningrecommendations for anational system ofpersonalised budgets,infrastructure and next steps;

• To consider and review optionsfor sustainability ofrecommended approaches.

1.1.3 Mission StatementThe Task Force’s mission is tomake recommendations on anapproach and a suggestedimplementation strategy forGovernment’s consideration, on

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the introduction of a system ofpersonalised budgets in Irelandfor HSE-funded personal socialservices and supports for peoplewith disabilities. This will be donein keeping with othercommitments and aspirationswithin the Programme forPartnership Government – botheconomic and social.

1.1.4 Task Force StructureThe Task Force has two maincomponents:• Strategy Group, responsible for

leading the development ofrecommendations andimplementation pathways forthe Task Force as a whole(hereafter the Strategy Group);

• Advisory & ConsultativeGroup, responsible fordelivering advice and input asrequested on key items arisingduring the work of theStrategy Group.

Figure 1: Overview of Task Force structure


For information sharing/

exchange & engagement

Strategy Group: Policy/Implementation groupto lead work-streams Advisory& Consultative Group: Advice

and input to be given asrequested and appropriate

Standing group comprisingpeople with disabilities and/orfamily members. Available forconsultation at specific and

appropriate intervals.

StrategyGroup

Advisory &Consultative

Group

Task ForcePlenary

ReferenceGroup

1.2 ScopeThe work of the Task Force was toconsider personalised budgets inthe area of HSE-funded personalsocial services and supports.Wider supports such as educationand employment were outside theremit of the Task Force. The needsof an individual with disabilitiesstretch beyond supports offeredwithin healthcare alone andrecognising this, the Task Forceadopted an approach to thedevelopment of personalisedbudgets which could be sharedwith other State-funded servicesfor people with disabilities in thefuture. It should be noted thatany decisions in this regard areoutside the scope of the TaskForce.

The Task Force encompasses alladults in receipt of, or becomingeligible for, HSE Disability Service-funded personal social services andsupports. The Task Force willconsider people whose primarydisability is physical or sensory,intellectual, autism, neurological orany combination of these. It doesnot include clinical servicescurrently provided by the healthservices (such as medical servicesand therapy supports), or generalliving expenses. The Task Force isworking with the aim of devel-oping a system that can evolve andgrow to meet additional areas ofexpenditure over time.

The Task Force decided uponseven work streams to inform itsdeliberations:

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Table 1: Task Force Work Streams from Project Initiation Document

1. Discovery phase Identify the key questions on whichinformation and evidence is required toguide its consideration of the differentitems in the Terms of Reference; Collatethe results of research to date under eachof the key questions (e.g. HRB evidencereview, NDA research etc.).

2. Eligibility / Resource Scope of services and supports to beAllocation covered by personalised budget option

in a first phase of rollout, subject toresources; Eligibility criteria and howthey will be defined and assessed.

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Table 1: Task Force Work Streams from Project Initiation Document cont’d

3. Financial What mechanisms are in place in otherSustainability jurisdictions to address financial

sustainability; Issues to be considered withregard to decoupling funding from existingservice providers where this applies;Identification of current level of resourcingand potential availability forredeployment; Need for funding tomanage transition between personalisedand traditional approaches.

4. Supports to apply for Analysis of supports required, includingand administer information infrastructure; brokeragebudgets system and back-office services; support

to prepare applications; supports forindividual administration, accounting,payroll, timesheets, human resources, etc.

5. Governance and Propose administrative and governanceAccountability framework.

6. Appraisal Appraise each option (benefits, risks, costsetc.); Develop a final report on the work ofthe Taskforce with recommendations forreview and decision by Government.

7. Implementation Plan Develop suggested timeline and pathwaytowards implementation, includingtransition arrangements between modelsor approaches.

Source: Task Force Project Initiation document (full text at http://health.gov.ie/disabilities/task-force-on-personalised-budgets/ )

1.3 MethodologyThe report that follows sets out theviews and recommendations of theTask Force, based on a series ofinputs it considered under thevarious headings in the work-plan.Under each heading, the StrategyGroup reviewed information on themain issues and concerns thatwould need to be addressed whenrecommending a national approachto a system of personalisedbudgets. The original materialconsidered is available on theDepartment of Health website, andthis document offers a summary ofthe main points together with theoutput of the Task Forcediscussions. The data includesresearch work conducted by HRBand NDA among others,presentations on personalisedbudgets and pilot projects carriedout in Ireland, discussiondocuments presented by membersof representative bodies, and atechnical process map prepared bya contracted consultant.

The Strategy Group reviewed all ofthe material provided anddiscussed in detail relevantinformation arising. Following itsmeetings, materials werecirculated to the Advisory Groupfor their consideration anddiscussion. Consideration was also

given to ensuring that the papersprovided were accessible and thatthe Advisory Group had sufficienttime to consider documentationand revert with observations tothe Strategy Group.

In this way, a consolidated view ofthe appropriate next steps wasdeveloped by the Task Force. It isacknowledged that there weresome areas in which the views ofmembers of the Task Forcediffered. These areas are recordedin this report. The preliminaryviews of the Task Force werefurther informed by a publicconsultation exercise, which tookplace during October 2017.

The Task Force met in plenarysession on three occasions over2016 and 2017. At the secondplenary session in 2017, the TaskForce agreed the overarching visionfor its work and the main headingsof the final report, based on theoutcome of the discussions held byboth the constituent groups overthe year. The Task Force met a finaltime in 2018 to review and agreethe final draft of the report. Atthese two later meetings, it wasalso agreed that areas noted byTask Force members as beingimportant for future consideration,but which were beyond the original

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remit of the group, would berecorded in a note to accompanythe final report on its presentationto the Minister.

A full overview on themethodology is available athttp://health.gov.ie/disabilities/task-force-on-personalised-budgets/

1.4 Policy Context The introduction of personalisedbudgets should be considered inthe context of the wider reformprogramme currently underwaywithin disability services in theHSE. In the last decade, there hasbeen an increased interest inperson-centred services. It isimportant to note some of the keypolicy shifts underpinning themove towards individualisedfunding and personalised budgetsbriefly here:

1.4.1 Transforming LivesImplementationThe Transforming Lives Programme

is a national collaborative effort tobuild better supports and servicesfor people with disabilities.Transforming Lives promotesinclusion and values theself-determination of people withdisabilities while respecting theirrights by promoting maximumindependence and self-determination.

The programme is based on anumber of key policy documents2

and is underpinned by legislation3

to ensure that people withdisabilities are supported to exercisechoice and control and makesignificant decisions in their lives.

1.4.2 Value for Money and PolicyReview of Disability Services –individualised funding The Value for Money and PolicyReview of Disability Servicesdefines Individualised budgetingas “an umbrella term that maytake many forms4”. Individualisedbudgets may or may not involvethe transfer of actual funds to the

2 Department of Health Transforming Lives –Value for Money and Policy Review of Disability Services;HSE New Directions- Personal Support Services for Adults with Disabilities; HSE Time to Move on fromCongregated Settings.

3 Disability Act 2005 and the Assisted Decision-Making (Capacity) Act 2015.

4 “… ranging from a method of determining resource allocation to agencies based on assessed client needand actual costs, to a ‘money follows the client’ model, a brokerage system or a personal budget modeladministered by the individual service user. With individualised budgeting, the main transfer to theservice user is the transfer of choice and control over funding decisions. This might or might not involvethe transfer of actual funds to the individual”.


individual. The Review also notesthat “it would not be advisable tomove to a fully individualisedbudgeting system until thenecessary availability ofalternative service options hadbeen properly piloted, tested andsufficiently established so as toavoid the creation of a vacuum inservice quality. However, thebalance and emphasis needs toshift firmly and comprehensivelytowards these new models ofindividualised supports… ”.

The Review notes that themovement towards individualisedservices and supports shouldadopt a common-senseincremental approach, whichacknowledges capacity issues andfinancial constraints, but which isdirected towards the achievementof the vision, goals and objectivesof the Review, as nowencompassed under TransformingLives.

1.4.3 National Framework forPerson Centred Planning forDisability Services A National Framework for PersonCentred Planning is currentlybeing developed by the NationalDisability Authority under theNew Directions ImplementationProgramme. The framework is

intended to inform and guide howperson-centred planning isimplemented across all servicesfor persons with a disability inIreland. The framework provides aclear picture of what goodpractice looks like and aims tosupport individuals, teams andorganisations to identify areas forimprovement. The Frameworksupports positive outcomes forpersons with a disability throughpromotion of good practice inperson centred planning.

1.4.4 Wider Policy ConsiderationsThere are a number of policychanges for the disability sector asa whole that will also impact onthe implementation ofpersonalised budgets:

Ireland recently ratified the UnitedNations Convention on the Rightsof Persons with Disabilities. Thepurpose of the Convention is topromote, protect and ensure thefull and equal enjoyment of allhuman rights and fundamentalfreedoms by all persons withdisabilities, and to promoterespect for their inherent dignity.It requires an approach to serviceswhich puts the person’s civil andhuman rights first. Significantadministrative and regulatorybarriers to ratification were

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identified and are beingprogressively addressed through,for example, the Assisted DecisionMaking (Capacity) Act, 2015.

The National Disability InclusionStrategy (2017-2021) waslaunched by Minister FinianMcGrath in July 2017. ThisStrategy captures a wide range ofactions across GovernmentDepartments that will impact onthe lives of people withdisabilities and is to be viewed asa blueprint for an inclusive,accessible and equal country thatincorporates issues that affectquality of life, health, educationand transport. One of the keyactions under the NDIS is thecommitment to report on thework of the Task Force towardsintroducing personalised budgets.

The Assisted Decision Making(Capacity) Act was signed into lawon the 30th December 2015. ThisAct applies to the whole ofsociety and therefore is relevantto decisions regarding accessingall health and social care services.The Act supports maximising anindividual’s decision makingcapacity and will have significantimplications for health and socialcare providers in the provision ofsafe person-centred care.

1.5 General Eligibility for HealthServicesThe Irish Public Health Systemprovides for two categories ofeligibility for persons ordinarilyresident in the country, i.e.persons with full eligibility(medical cardholders) and personswith limited eligibility (all others).

1.5.1 Persons with full EligibilitySuch persons are entitled to arange of services including generalpractitioner services, prescribeddrugs and medicines, all in-patientpublic hospital services in publicwards including consultantsservices, all out-patient publichospital services includingconsultants services, dental,ophthalmic and aural services andappliances and a maternity andinfant care service. Other servicessuch as allied health professionalservices may be available tomedical card holders. With theexception of prescribed drugs andmedicines, which are subject to a€2.00 charge per prescribed item(maximum of €20 month permonth per individual/family), theseservices are provided free ofcharge.

Full eligibility is determined mainlyby reference to income limits.However, in June 2017 person's for


whom a domiciliary care allowancepayment is made are automaticallyentitled to a medical card.

1.5.2 Persons with LimitedEligibilityPersons with limited eligibility areeligible for in-patient andoutpatient public hospital servicesincluding consultant services,subject to certain charges. Thepublic hospital statutory in-patient charge is €80 per day upto a maximum payment of €800in any twelve consecutivemonths. There is also a charge of€100 for attendance at Accident& Emergency departments unless,inter alia, the person has a referralletter from their GeneralPractitioner.

Persons with limited eligibilitymust meet the first €134 ofprescribed medicine costs permonth, above which the DrugPayments Scheme meets allfurther costs. Dental and routineophthalmic and aural services arenot provided by the State, but thistreatment is provided to childrenwho have been referred from achild health clinic or a schoolhealth examination. A freematernity and infant care serviceis provided during pregnancy andup to six weeks after birth. Other

services such as allied healthprofessional services may beavailable to persons with limitedeligi The Irish Public HealthSystem provides for twocategories of eligibility for personsordinarily resident in the country,i.e. persons with full eligibility(medical cardholders) and personswith limited eligibility (all others).

It should be noted that, in the caseof Disability Services, specialisedservices are provided on the basisof need and are effectivelyprovided free of charge except inthe case of contributions that applyunder the Residential SupportServices Maintenance andAccommodation Contributionslegislation or where there has beena financial settlement to cover thecost of care.

1.6 Disability Services funded bythe HSEThis section provides a shortoverview of the main HSE fundeddisability services and supports thatpeople with disabilities currentlyavail of in the area of personal socialservices. It does not therefore coverthe areas of support currentlyfunded by other GovernmentDepartments and agencies e.g.training, education, employmentsupports, housing supports etc.

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Funding of €1.772 billion wasallocated by the Health ServiceExecutive (HSE) for disabilityservices in the National ServicePlan 2018.

Pay costs account for 82-85% ofthis expenditure. The largestcomponents of HSE disabilityexpenditure are residential careand day services (68% and 21%respectively). Expenditure onelements such as respite care,personal assistance, homesupport services and community-based allied healthcareprofessional services, form a smallpart of the total spending(together, they constitute

approximately 11%, or €195million, of total spend). This isworth noting as this last group arethe services most typicallyincluded in models ofpersonalised budgets that havebeen introduced internationally.

1.7 ConclusionsThe implementation of anysystem of personalised budgetsshould be aligned with the spiritand structures of the wider policyframework and the AssistedDecision Making (Capacity) Act2015, and, in particular, in thepresumption of capacity for allpeople with disabilities.


Table 2: HSE Disability Services funding

Source: HSE National Service Plan 2018

Disability Services Programme: Quantum of Services€1.772 billion 2018

Residential services 9,000 people

Day services Over 24,000 people

Respite and residential support 182,500 overnights

Personal Assistant services 1.46 million hours

Home Support services 2.93 million hours

Target to move from institutions to homes 170 peoplein the community in 2018

2.1 International experience ofpersonalised budgetsAs there has been very limitedexperience of forms ofpersonalised budgets in the Irishcontext, much of the informationavailable to the Task Force camefrom evidence of personalisedbudgets in other jurisdictions.

2.1.1 HRB individualisedbudgeting for social care servicesfor people with a disability:International approaches andevidence on financialsustainabilityThe first of these was a reportcommissioned by the Departmentof Health and carried out by theHealth Research Board (HRB) on‘Individualised budgeting forsocial care services for peoplewith a disability: Internationalapproaches and evidence onfinancial sustainability’5. This workpreceded the establishment of theTask Force and informed theProject Initiation Document andsubsequent work of the TaskForce. In reviewing the practical

details on the operation ofpersonalised budgets in othercountries, it was useful toexamine the criteria fordetermining eligibility for a needsassessment and the entitlementsthat follow a needs assessment,financial limits set on serviceprovision and mechanismsadopted in other countries toensure financial sustainability. Thereview focused predominantly onsix selected countries- Australia,Canada, England, the Netherlands,New Zealand and Scotland.

The HRB Evidence Review notedthat the introduction ofPersonalised Budgets is still “awork in progress” withpersonalised budget schemes onlyrecently introduced orsignificantly revised in recentyears in many countries. As such,the HRB Evidence Reviewhighlights a lack of evidenceregarding the financialsustainability of PersonalisedBudgets and notes that anycomparisons or conclusions are

National and international experiences

2

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5 http://www.hrb.ie/uploads/tx_hrbpublications/Individualised_budgeting_for_social_care_2016.pdf

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rendered more difficult when oneconsiders that varying contexts,economic models and systems inthe countries examined. However,a number of common issuesemerged in the HRB EvidenceReview which can be used toinform the planning,implementation and monitoring ofany system of personalisedbudgets in Ireland.

2.1.2 National Disability Authority(NDA) Synthesis Paper onPersonalised Budgets.The NDA had previouslyprogressed work on individualisedfunding in the context of theValue for Money and PolicyReview of Disability Services inIreland, including facilitatinground-table discussions with arange of stakeholders andcarrying out a rapid evidencereview of experiences in otherjurisdiction. The NDA haspreviously carried out a review ofresource allocation systems inorder to inform the Departmentof Health and HSE in theirdecision regarding a nationalapproach to this matter. Based onthis work and a range of otherinputs, the NDA prepared asynthesis paper for the TaskForce, drawing from a number ofthe key research papers relating

to personalised budgets both inIreland and in other jurisdictions.

While the majority of the researchindicated that personalisedbudgets were introducedrelatively recently in thejurisdictions covered, andtherefore had not been robustlyevaluated in terms of costs oroutcomes, several commonfindings emerged. The researchindicated that a personalisedbudget model typically follows theprocess set out below:

1. An individual budget iscalculated (through a variety ofmeans) for an eligible person,indicating how much isavailable to spend.

2. Individuals, usually with aprofessional (a broker or careplanner), identify their needsand desired outcomes througha person-centred planningprocess. This forms the basisfor a spending plan, whichmust fit within the overallbudget allocation.

3. The spending plan must beapproved by the fundingagency or a designated agent.

4. There is often choice as tohow the budget is allocated –whether it is given as a directpayment to the individual;


passed to a third party, towhich the individual delegatesresponsibility forcommissioning and purchasingthe services; or retained by thecommissioning organisation (asa ‘notional’ budget) to spendon the individual’s behalf. Insome cases, an individual maybe able to opt for acombination of these paymentmethods.

5. Individuals (or the agencymanaging the budget on theirbehalf) must then account forany purchases made againsttheir approved spending plan

The NDA Synthesis Paper paperwas drafted under four mainheadings:• Eligibility and resource

allocation• Supports to apply for and

administer personalised budgets• Governance and accountability• Financial sustainability

The review of internationalevidence on financialsustainability by the HRB andNDA was further supplementedby the Research Services Unit ofthe Department of Health in thecontext of Workstream 3 andadditional information on thistopic is presented under the

Financial Sustainability section ofthis Chapter.

2.2 Eligibility and ResourceAllocation2.2.1 EligibilityIn countries with a personalisedbudget scheme, eligibility isdetermined either by individualapplication to the statutoryagency or by statutory invitationfor assessment. All countries havea citizenship or residencyrequirement. Half of the countrieshad an upper age limit of 65 whilemost countries have no lower agelimit. In all countries, people withphysical, intellectual,developmental and sensorydisabilities were eligible andpeople with mental illness wereeligible in most countries exceptNew Zealand and some provincesin Canada. Disabilities have to belong lasting and have a significantimpact on the life of the personwith the disability. In some casesa personalised budget can beused to pay for long termresidential care or fund earlyintervention or crisis support.

There are no studies evaluatingthe benefits of what is permittedspending in one jurisdictioncompared to another. The reviewliterature recommends flexibility

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in spending personal budgets aslong as it is achieving pre-agreedoutcomes. The literature outlinesconcerns regarding paying familymembers but notes that there isvery little evidence to support theconcerns.

2.2.2 Allowed spending The literature review identifiedspecific areas of expenditureunder a personalised budget thatwere permitted in all countries, insome countries, or that were notpermitted at all. These limits wereconsidered by the Task Force informing its views on the types ofsupports that can and cannot befunded.


Table 3: Areas of spend allowed and not allowed in countries with apersonal budget system

Allowed by allcountries

• Employment ofsomeone toprovide personalcare and supportto participate incommunityactivities

Not allowed by anycountry

• Things notrelated to thedisability or thatwill not meet thesupportedperson’s needs

• Day to day livingcosts

• Duplicates ofother supports /supports providedby another sourcewithin the system

• Anything illegalor causing harmor risk to others

Allowed by somecountries but not by others

• Residential care • Respite care • Support for

householdmanagement e.g.cleaning, cooking

• Housingadaptation

• Holidays• Day services• Transport• Paying family

members

Source: Pike et al, 2016

2.2.3 Resource allocationResource allocation is ideallybased on an assessment of needconducted by a practitioner (whoknows the individual) or by self-assessment. The assessmentshould be client-led andoutcomes-focussed and providevalid and reliable information onthe individual’s needs and supportsystems that are in place.Resource allocations wereassessed and reviewed annually orbi-annually in most cases. It wasclear that transparency betweenassessment and subsequentresource allocations werecomplex and not alwaysunderstood by the assessor.

The research recognises thatappeals processes operate inother jurisdictions, but does notprovide much detail of how theseprocesses are implemented. Theliterature reviewed recommendedtraining for staff and assessors inrelation to resource allocation andthat any system adapted requiredflexibility to adapt to thesupported person’s needs.

Between 2011 and 2015, theNDA conducted an extensiveanalysis of four resourceallocation tools, and used this toinform advice to the Department

of Health and HSE on thefeasibility of introducing any oneof these tools in an Irish context.It will be important for theimplementation of any system ofpersonalised budgets that adecision is made about theintroduction of such a tool in anational standardised approach toresource allocation.

2.3 Supports to apply for andadminister personalised budgets2.3.1 BrokerageThe term ‘brokerage’ is used in anarrow sense to cover thefacilitation of the development ofa personal plan (independent offunders or providers) and in itsbroadest sense to cover a wholerange of supports up to andincluding providing pay rollsupports.

There is almost no evidence-baseon the effectiveness of brokerage.In the UK only a small percentageof people used brokerage servicesfor “support for planning personalbudgets”. Instead personal budgetusers tend to look for free supportbrokerage from professionals theyalready know, rather than pay forprofessional support brokerage.The above points notwithstanding,many service users need extensivesupport in order to access

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personalised budget schemes, tomanage money, budgeting andaccounting, to access the requiredservices, and to employ andmanage staff.

The amount and type of support,and who provides it, varies betweencountries and programmes.

Based on the HRB Review andother available reviews, it appearsthat a package of services istypically provided by the funderor organisations on contract tothe funder at no cost to thepersonalised budget recipient.These supports includeassessment and review of needs,person centred planning andreview (including risk assessmentand safeguarding), guidance onuse of personalised budgetmonies, guidance and possiblytraining on employers’ obligations.Typically, personalised budgetrecipients can opt to contract withan agency or agencies to fully

manage the budget on behalf ofthe personalised budget recipient,manage the payroll of supportworkers employed by thepersonalised budget recipient, andemploy or contract directly allsupport workers or caregiverswho support the personalisedbudget recipient.

2.3.2 Organisation of brokerageand other support services A review of 11 jurisdictions foundthat, “the amount and type ofsupport, and who provides it, variesbetween countries andprogrammes, but it is frequentlyreferred to as ‘brokerage’. It usuallyinvolves the provision ofinformation and advice, but mayalso offer practical help in relationto tasks such as recruiting personalassistants, drawing up contracts ofemployment, operating a payroll,and so on”6. A study from Canadafound that direct payment7 andhost agency8 were the mosteconomical, but microboards9

6 Gadsby. E., (2013) Personal Budgets and Health, p.337 “Direct funding” is defined by Stainton et al as a payment which “allows the individual, family or their

representative(s) to receive funding directly to retain and manage agreed supports”8 “Host agency funding” is defined by Stainton et al as funding “channelled through an agency selected

by the individual or family. The agency then supports the individual and/or their family orrepresentative to utilise and manage their funds for agreed supports”

9 The microboard, is defined by Stainton et al as “an incorporated entity, [which] is a small (micro) groupof committed family and friends (a minimum of five people) who join together with the individual tocreate a non-profit society to receive and manage the funding. In this structure, the individual requiringsupport, and their network, are the members of the board, and the board’s only purpose is to supportthe single individual”.


offered a lot in the form ofimproved network support andbuilding social capital. A review inNew Zealand of host agenciessuggested that the human resourcesupport/advice and payrollfunctions carried out by hostproviders might be provided moreefficiently by aggregated hostentities operating at national orregional rather than local level.

2.3.3 Regulating brokerageservices There was no evidence foundamongst the literature reviewedregarding if and how brokerageservices are regulated in otherjurisdictions. Some reviews havehighlighted concerns that the costof brokerage was reducing people’sbudget for care and support. ManyEnglish local authorities providebrokerage in-house (by separatingassessment and planningfunctions). One study in theNetherlands found that, “theunchecked proliferation ofindependent support agencies, andlack of financial oversight, provedproblematic when unscrupulousbroker agencies employedaggressive marketing tactics, and insome cases stole parts of thebudget”. One study highlightedconcerns in the United Kingdomabout conflicts of interest where

some organisations are bothproviding services and brokerage.

2.4 Governance andaccountability2.4.1 Options for allocation orpayment of fundingThe literature review identifiedthree main ways that a user canaccess a personal budget: 1. a direct payment to their bank

account2. a payment to an account held

by the statutory funding bodyor a third party who ‘manages’it on their behalf, or

3. a mix of the two.

A distinction was also madebetween two models for paying apersonalised budget; an openmodel and a budgeted or plannedmodel. The ‘open model’ is wherecash payments are allocated withfew limits on supports, few stringsattached and limited accountingrequirements. In practice, themajority of the cash allowances goto pay informal caregivers in ‘openmodels’.

The ‘budgeted or planned model’,“maintains a more directconnection between aparticipant’s needs and the goodsand services purchased to meetthose needs”. There are more

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restrictions placed on how themoney can be spent (althoughthese vary widely), and they areaudited more carefully. The‘budgeted or planned model’ ismuch more common than ‘openmodel’ programmes.

2.4.2 Accountability Table 4 below summarises the

financial reporting requirementsin each jurisdiction. All thejurisdictions except Austriarequire financial reporting onexpenditure. The Austrianexample was a payment to carerswhich didn’t require a supportplan, so perhaps it is notcomparable to some of the otherschemes.


Table 4: Personalised Budgets in selected jurisdictions according tofinancial reporting requirements Country

England

Belgium

France

Germany

Budget deployment

Notional budgets,budgets delegatedto third parties, ordirect payments.

Notional budgets(budgets with adrawing right) ordirect payments. Thechoice is not alwaysthat of the individual.

Direct payment, orpaid directly to theservice provider.

Direct payment ornotional budget.

Financial reporting

Detailed financialaccounting.

Budget holdershave to account forall expenditures.

Use of budgetsstrictly controlledand users mustjustify expenditure.

Accounting alwaysnecessary but variesaccording tolocality. Some areashave very strictprocedures; othersless so.

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Country

Netherlands

Austria

US

Canada

Budget deployment

Direct payment withoptions to outsourcesome aspects (e.g.salaryadministration),delegate in full tothird partyorganisation, or toestablish afoundation (e.g.pooling budgets tocollectively engageassistants)10.

Direct payment.Where individual iscognitivelyimpaired, someoneis appointed tomanage the budget.

Cash and counsellingpilot used flexiblevouchers. Somestates provide cashdirectly, others usefiscal intermediaryto handle payments.

No direct payments. Funds managed byan agency.

Financial reporting

Budget holdersmust submitperiodic costings ofhow they spent (allbut a tinypercentage of) themoney. Costlybudget holders areassigned to use afiscal agent.

None.

Budget holdersmust account foralmost all theirexpenditure.

Individuals submit‘purchase of service’reports, along withinvoices, bi-weeklyor monthly.

10 This information does not reflect the changes introduced in the Netherlands since 2015.

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2.4.3 Training for personalisedbudget holders aroundresponsibilities as employersTypically, either the funderdirectly or by way of its contractwith a host or brokerage serviceprovides some employer supportsto personalised budget holderswho wish to become employers.Scotland has produced statutoryguidance which outlines how localauthorities should developeffective arrangements to ensurethat all prospective employers areaware of, and discharge, theirresponsibilities in relation to safeand effective recruitment. In NewZealand host agencies providesupport and guidance on

employers’ obligations topersonalised budget holders. Inthe USA Cash and Counsellingprogramme, all service users wererequired to undergo training onhow to set up a support plan andhow to recruit and train workers.

2.4.4 Quality assurance One literature review noted thatthere is, “no international evidenceto suggest that there are anyparticular risks posed wherepersonalised budgets are used topurchase health care. However, thisis indicative of the lack of researchin this area, rather than a lack ofrisk”. A number of reviews havehighlighted risks associated with

Country

Australia

Finland

Sweden

Budget deployment

No direct payments.Provider alwaysholds the budget.

Service vouchers,given directly to theindividual.

Direct payment,unless beneficiaryspecifically requeststhat it be paid to thechosen serviceprovider.

Financial reporting

Limitedresponsibilities forindividuals.

No informationavailable.

Budget holder sendssimple monthlyreport of the hoursof work carried outby the assistants.

personal budgets rather than anyhard evidence of poorer standardsof care funded with personalisedbudgets. These risks include:-

• the expansion of low-qualityemployment, which has madeit very difficult to control thelevel of quality of bothemployment and care

• the creation in somejurisdictions of unregulated,‘grey’ markets which falloutside of employment law

• the availability and employmentconditions of personalassistants. This can result inproblems with recruitment, givencompetition from otherproviders, and insufficientapplicants with appropriatequalifications/ qualities

Research found that personalassistants employed by personalisedbudget holders regard themselvesas able to provide a much higherquality of care than is possiblewhen employed by a careorganisation, and that serviceusers are more satisfied with theirsupport than with traditionalpersonal assistance programmes.

In England, a number of localauthorities are considering the

introduction of a register ofpersonal assistants but notes thatsuch a register would impact on thetrade-off between ensuring thoseproviding support have a certainlevel of skill and support andflexibility for personalised budgetsholders to hire whomever they wishto provide them with support.

2.4.5 Adult safeguarding Literature highlights the need forpersonalised budgetarrangements to be aligned withsafeguarding considerations.Personalised budgets are seen toshift responsibility for care fromthe service provider to the usersthemselves which could put serviceusers at risk of abuse and neglect, inparticular, if the user purchasedunregulated services. The need for a“cultural shift towards positive risk-taking and risk enablement whichshould be an integral part of theself-directed support process”11 ishighlighted in some of the literature.

There is very little discussion in theliterature about how risks of “abuseor neglect” are managed in thecontext of personalised budgets.

Risk, the literature states, can bemanaged in multiple ways. Forexample, by:

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11 SQW (2017) Research into the implementation of resource allocation models. NDA unpublished

50

• firming up adult safeguardingpolicies

• conducting regularexpenditure reviews

• building risk assessment intothe support plan

• providing better guidance forcare coordinators

• providing better informationfor personal budget holders

• providing training for staff,users, carers and familymembers, and;

• conducting regular(appropriate) audits

One study highlights that it isimportant that someone (usuallythe social worker in otherjurisdictions) remains responsiblefor risk monitoring and riskassessment once the support planand personal budget are in place.While the role is likely to fall tothe HSE in an Irish context, theTask Force has not provided arecommendation as this is largelyan operational matter for the HSE.

2.4.5.1 Where breakdown ofsupport arrangements occurs There is little evidence of who isresponsible and has a duty of carewhen personalised budgetarrangements breakdown.However, in the UK at least itappears that the local authority

[i.e. the funder] does have a dutyof care if a direct paymentrecipient’s care / supportarrangements break down.

2.5 Financial SustainabilityAs personalised budgets haveonly recently been introduced orhave been significantly revised inmany countries, there is littleevidence available with regard tothe financial sustainability ofthese systems. Furthermore, thedifferent models and disabilitysupport systems operating in eachjurisdiction make comparisondifficult. However, the experienceof personalised budgets in severalcountries has identified somerisks to service users as well assome financial risk to serviceproviders and fundingsustainability risks at a state level.

Individualised budgets were foundto be cost-effective overall, butwith a great variation betweenpeople with physical disability,intellectual disability, a mentalhealth difficulty and older people.There is mixed evidence onwhether the introduction ofpersonalised budgets results incost-savings and/or whether anysystem can be introduced in acost-neutral manner (withoutimpacting on the original policy


objectives of autonomy andchoice). Some countries foundthat costs were higher than theyhad expected in the early yearsafter introduction, mostly due tounmet need in the existingsystem. People with unmet needin the existing system may drivecosts upwards in the early yearsof a personalised budget system.

The HRB evidence review notedthat transaction costs such asimplementation costs, costs ofcommissioning or arrangingservices were almost alwaysunderestimated in plans forintroducing personalised budgets.The extent of thisunderestimation was not availablein the published literature.

At the state level, problems havearisen where broad eligibilitycriteria were set and where a highlevel of previously unmet needrequired additional funding. Theinternational evidence onpersonalised budgets cautionsagainst open-ended eligibility oropen-ended budgets. Whereeligibility criteria are narrowedand controlled, this limits eitherthe number of service users thatcan avail of a personalised budgetor it limits the range of servicesavailable or limits the expenditure.

The limited number of cost-effective studies of thepersonalised budget approachversus more traditionalapproaches found personalisedbudgets to be cost-effective,although there were come caveatsin the findings. A very liberalapproach to eligibility can lead toincreasing expectations and newdemand (e.g. The Netherlands).When budget cuts are necessaryit can mean that either eligibilitycriteria remain the same but thelevels of support changed oreligibility criteria are narrowedthus limiting the number ofpeople that can avail of theservice.

2.5.1 Risks identified in theliterature that may affect financialsustainabilityIndustrial relations issues relatingto staff terms and conditions ofemployment are a potentialchallenge. There may be a fearthat where the person choosestheir own staff, the role of thestaff member may diminish andtheir responsibilities reduce. Itmay be difficult to recruit personalassistants and other, costlier,options may have to be used.There is also the risk that a ‘two-tier’ workforce may emerge withunregulated and unprotected

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personal assistants who arecheaper being hired in place ofmore expensive regulated andprotected workers.

There may be a financial risk ofdouble running costs during thetransition phase (that is, runningthe old and new systems inparallel). Competition betweenprivate suppliers may result incherry picking, leaving the state toprovide the uneconomic services.

People may use theirindividualised budget to pay forthings they may have previouslypaid for ‘out-of-pocket’. Fundingmay replace family care that isalready being delivered free ofcharge.

The literature suggests that levelsof fraud in other jurisdictionswere low and that underspendingwas more common thanoverspending or abuse. Evidencesuggests that high levels ofregulation did not assist inreducing fraud, but that it canlead to a substantialadministrative burden.

Research shows that fraud can bereduced during the assessmentphase (where service users orservice providers could ‘play the

system’ to gain more resources)through the development of clearcriteria and providing goodtraining to the assessors. It canalso be prevented through the useof online systems of paymentwhich provide a ready audit trail.

In cases where service users aredeemed higher risk, then tightercontrols can be put around theirbudget, for example, switchingfrom monthly to weekly paymentsto limit their scope to over-spend.

2.6 Existing Irish models ofindividualised funding2.6.1 National survey on theprevalence of personal budgetsThe National Disability Authoritywas asked to gather baseline dataon the prevalence of personalisedbudgets in Ireland. The survey wassent to 139 disability serviceorganisations including the nineHSE Community HealthcareOrganisations in March 2017.Thirty-one organisationsresponded giving a response rateof 22%. Of these, 12organisations (37%) hadsomebody who received apersonal budget amounting to 290individuals in total. Someresponses were incomplete, sothe analysis below refers to 11organisations and 283 individuals


using some form of individualisedfunding. Due to this small samplesize, we are limited in theconclusions that we can drawfrom this research.From the survey results, it waspossible to obtain a breakdown ofthe purpose for which thepersonal budget was used. Thepersonalised budget was mostoften used for personal care,followed by social activities andactivities of daily living. Otheractivities included support tocreate and maintain valued rolesand to support self-directed living.

The survey also examined why apersonalised budget wasallocated. The most commonreason was that there was noalternative service or placeavailable (48%). The next mostcommon reason was that that theservice provider initiated themove to a personal budget (27%).

It should be noted that some ofthe funding types covered by thesurvey could be considered asindividualised funding arrangementsrather than personal budgets. Thispoints to varying definitions ofwhat exactly a personalisedbudget is, from a direct paymentto individualised funding.

2.6.2 Task Force learning fromIrish experiencePersonalised budgets /individualised fundingarrangements have beenestablished for a small number ofpeople in Ireland through pilotprojects. At its third meeting, theStrategy Group met withrepresentatives from a number ofthese: Possibilities Plus, ÁiseannaTacaíochta, National LearningNetwork, the Bridging the Gapproject and Muiriosa. Theseorganisations presented the keyfindings from their work onpersonalised budgets. All reportedsignificant improvements in thelives of their participants withservice users experiencingpositive changes such as a growthin self-confidence, self-esteem,exercising more choice andcontrol and a greater sense ofpersonal development.

The particular benefits andchallenges experienced by theparticipants were considered bythe Task Force and have informedthe recommendations subsequentlyagreed. Some of the challengesidentified included accessingfunding, limitations in family andnatural support networks, highlevels of bureaucracy, difficultiesin meeting regulatory

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requirements and challenges inachieving a shift in attitudes andmindset in those working in theservice sector. As would beexpected, it was found thatpersonalised budgets were notsuitable for everyone and that thepace of entering a personalisedbudget agreement varied verymuch from person to person.

Both the Strategy Group and theAdvisory and Consultative Groupincluded people with ongoingexperience of personalisedbudgets in Ireland. Their inputcontributed significantly to theTask Force deliberations andsupported the informeddevelopment of recommendations.

2.7 Conclusions The international evidence reviewand input from experience ofpersonalised budgets at nationallevel was critical in informing theTask Force of the range and scopeof various models of personalisedbudgets from around the world.While it was clear that there wasno single system that was

replicable in an Irish context, anumber of the key elements weretransferable and have beenincorporated into therecommendations proposed bythe Task Force.

One of the key findings is that apersonalised budget should bespent for the direct benefit of theperson with the disability and nottheir care provider, supportworker, or a family member. Theresearch suggests that changeshould be introduced over a fairlylong period of time using astrategic and phased approach.

Transitional funding was used inother jurisdictions and is neededto develop new systems, trainstaff and fund the piloting andtrials of new processes. The TaskForce noted the need forinvestment in a pilot of a newsystem to highlight gaps in thesystem, test funding assumptionsand implications, and assist inmanaging and addressing anychallenges that arise.


3.1 Advice Paper on supports toapply for and use personalisedbudgets The Advisory and ConsultativeGroup was asked to provide theirviews on the supports to apply forand use personalised budgets. Thiswork was completed at an earlystage of the process and helpedto inform much of the proposedstructure and administration ofpersonalised budgets, as well asthe final recommendations of theTask Force.

The focus of this Chapter is onthe supports that an individualwould need; it does not delve toodeeply into the process thatwould sit behind these supports.These processes are considered inmore detail in Chapters 6 and 7.

3.2 Task assigned to theConsultative and Advisory GroupThe task of identifying thesupports to apply for andadminister personalised budgetsrequired consideration of thefollowing requirements:• information infrastructure• brokerage system, back-office

services, any other supportservices

• support to prepareapplications

• support to develop andimplement individual supportplans, develop circles of support

• role of personal advocates• supports for individual

administration, accounting,payroll, timesheets etc.

• supports for human resourceissues as they may arise

• model templates for microboards and circles of support

• support for assistance withfinancial decision making.

And, also consideration of issuesrelating to employment of supportworkers, including:• requirements for education on

the responsibilities ofindividuals and families if theybecome employers

• mechanisms to assistindividual and families indischarging theseresponsibilities

• alternatives for individuals/families who do not wish tobecome employers

Supports for individuals and familiesavailing of personalised budgets

3

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• implications for supportworkers.

It should be noted that the AdvisoryGroup undertook its task in advanceof, and feeding in to, the proposalsfor a model and process forpersonalised budgets that wouldemerge from the other workstreams in the Task Force work plan.

The Advisory Group emphasised intheir work that people withdisabilities interested in using apersonalised budget will need to besupported at a number of stages inthe personalised budget process.Some elements of support mayneed to be very different forpeople depending on theirdisabilities and circumstances. Thefollowing summarises the AdvisoryGroup’s views on the range ofsupports required to access andadminister personalised budgetsat each of the relevant stages.

3.3 Recommended supportsidentified by the Task Force3.3.1 Education, Capacity Buildingand Training Some individuals, and whereappropriate their families, willneed support to build theircapacity to develop a plan based

on developing valued social roles.Therefore, education and capacitybuilding will be required for somepeople in addition to training onthe practical elements ofmanaging a personalised budget.

3.3.2 Information supports Formal information should beprovided by an independent body(possibly as a one-stop-shopmodel), including information onprocesses, finances, and optionsand related legal duties e.g.employer role for those whochoose to directly employ theirsupport workers. Much of thisinformation and further detail onsupports for employers isavailable from the Citizen’sInformation Board.12

Information is also needed onwhat tasks, if any, the person witha disability, or their family whereappropriate, would have to takeon to do themselves if they optfor a personalised budget.

Organisations could be funded toprovide information, education,advice and guidance onpersonalised budgets. Somepeople may need supportthroughout the application and


12 http://www.citizensinformation.ie/en/employment/employment_rights_and_conditions/employment_rights_and_duties/employer_obligations.html

assessment process from a peer viaa peer-to-peer support network.

Training on personalised budgetswould need to extend beyond theindividual to include training forrelevant health social and carestaff so that they can provideinformation on personalisedbudgets and promote andfacilitate them.

3.3.3 Application processThe application process should beuniversally designed so that it iseasy to understand and engagewith. It should allow people with adisability to quickly and easily getan answer as to whether they areeligible for a personalised budgetor not.

Staff involved with the applicationprocess should keep the personwith a disability informed abouthow their application isprogressing. The applicationprocess should be designed in away to ensure that those applyingfor personalised budgets are notrequired to repeatedly give theirpersonal information to a varietyof professionals / administratorsinvolved in their assessment /application for a personalisedbudget.

3.3.4 Assessment Some people may needinformation and support duringthe assessment phase. Also, it isimportant that the assessmentphase identifies the supports theperson with a disability wouldrequire to administer apersonalised budget.

3.3.5 Planning The level of planning required willbe different for different people,so supports for planning wouldneed to reflect these differentcircumstances. Some planningpathways suggested by theAdvisory Group may involve:

• A short process to develop asupport plan for some mayinvolve only guidance and advice

• A “Discovery” type planningprocess for others entailingsupport for individuals andwhere appropriate their familyand support network, toidentify and plan life goals e.g.a facilitator.

• A Circle of Support may beinvolved in planning for somepeople and not others. In somecases this may entail a facilitatorto support development ofcircle and to support inplanning process etc.

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3.3.6 Supports to AdministerPersonalised Budgets Basic guidance and training willneed to be provided to all whorequire it but also some peoplemay require additional assistance.Brokers could be used by peoplewho require assistance with any orall of the following; coordination ofsupports; assistance with reportingand accounting matters; payrollsupports; and staff employersupports.

3.3.7 Supports for those whowant to employ their own staffSupport from a relevant body e.g.brokerage or other body, for theindividual who wishes to hire theirown staff might include;identifying what they want from asupport worker; identifying whatcharacteristics might be importantto them in a support worker(similar interests, similar outlook,etc.); assisting them to develop anadvertisement; support forinterview and selection processes;drafting a contract; vetting; andpayroll.

Guidance will need to be developedon some legal issues, which mayimpact on personalised budgets(such as employment disputes,terminating employment contracts,transfer of undertakings etc).

3.3.8 ReviewThe person with a disability and thefunder will need to review atappropriate intervals the levels ofsupport needs, the plan goals, andadequacy of support arrangementsin place. A number of people withdisabilities may need some supportaround communicating their viewsduring the review phase.

These and other supports to makethe personalised budget processas easy to use as possible (e.g.accessible process, online processetc) are discussed in more detailbelow.

The learning from other peopleusing personalised budgets shouldbe gathered, as the experiences ofothers can be helpful to thosethinking about using personalisedbudgets.

3.4 Conclusions andRecommendations3.4.1 ConclusionsThe Advisory Group’s report onthe supports required for apersonalised budget was a keyinput to the subsequent workdone on the administrationprocess proposed and informedseveral of the recommendationsof the Task Force.


The Advisory Group emphasisedin their work that people withdisabilities interested in using apersonalised budget will need tobe supported at a number ofstages in the personalised budgetprocess. As a result, the TaskForce has recommended thatcomprehensive guidance isdeveloped to support peoplethrough the process ofconsidering and applying for apersonalised budget. It alsorecommended that a standardisedassessment tool be put in place.

A number of therecommendations reflect thatthere is a need for a significantamount of preparatory work toensure that the person is aware of

both the risks and responsibilitiesof using a personalised budget.They also reflect that training willneed to be undertaken across thesystem, including by serviceproviders and support staff.

The key recommendation fromthe Task Force is the need forinitial demonstration projects,which will assist in providing someof the shared experience andlearning required to furtherextend and promote the use ofpersonalised budgets. Thedevelopment of many of thesupports identified by theAdvisory group can becommenced and tested during theinitial demonstration projects.

3.4.2 Recommendations related to this Chapter

• Funding should be approved on the basis of astandardised assessment of individual need. A profilingtool should be selected for use in the initialdemonstration projects. (Recommendation 6)

• Learning from the demonstration sites should informthe development of guidelines required to enablefurther implementation of a personalised budgetssystem. This should include specific provisions tosupport the introduction of a direct payment model ofpersonalised budgets and graded levels ofaccountability. (Recommendation 15)

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4.1 Consultation ProcessThe Task Force identified a needto carry out consultation with civilsociety at relevant intervals,including with the individuals inthe Reference Group and throughother fora, on emerging optionsfor administering a system ofpersonalised budgets.

This was done with the aim ofensuring that the person with adisability was at the heart of alldecision-making. Their views wereincorporated by collating keythemes and points emerging fromthe consultation and feedingthese back to the Strategy Groupand the Advisory & ConsultativeGroup.

A consultation document wasproduced including a set ofconsultation questions and aquestionnaire. An Easy to Readversion of this questionnaire wasproduced to facilitate theparticipation of persons withadditional support needs.

Four regional consultationmeetings were held in Cavan,

Cork, Dublin and Galway. Thesewere held during October 2017.The consultation meetings weretargeted at the members of theTask Force Reference Group. Anumber of representative groupsincluding Inclusion Ireland, theCentres for Independent Living,LEAP, the Disability Federation ofIreland (DFI), the NationalFederation of Voluntary Bodiesand the Not for Profit BusinessAssociation (NFPBA) were alsoasked to nominate members toattend at each meeting, to ensurethat a range of views wererepresented. At each meeting,participants were divided intosmall facilitated groups. A notetaker was assigned to each group.Views, opinions and feedbackwere recorded.

In total 130 individualsparticipated in the regionalmeetings, which were facilitatedby personnel from theDepartment of Health, the HSEand the NDA.

A call for public consultation waspublished on the Department of

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Personalised Budgets ConsultationProcess – Summary of Key Findings

4


Health’s website which facilitatedorganisations and individuals tosubmit their views in writing onhow personalised budgets couldoperate in an Irish context. Thiswas promoted throughadvertisements in nationalnewspapers and disseminatedthrough representative groups.The questionnaire consisted of 9open-ended questions about therespondents’ views onpersonalised budgets. Theconsultation process ranthroughout the month of October.

Over 200 individuals andorganisations gave their viewsduring the consultation period.Some individuals andorganisations participated in theregional meetings and alsocompleted the questionnaire.

A summary of the responses tothe consultations is available onthe Department website:http://health.gov.ie/disabilities/task-force-on-personalised-budgets/

4.2 Conclusions andRecommendations4.2.1 ConclusionsThe consultation processprovided valuable insight to theTask Force of to the lived

experience and real lifeexpectations of people who hopeto avail of a personalised budget.Other people whose voices wereheard were family members,advocates for people withdisabilities and service providers.The Task Force particularly wishesto thanks the Reference Group fortheir input into the consultationprocess.

Many of the key themes thatemerged over the course of theconsultation process stronglyechoed those of the AdvisoryGroup report outlined in Chapter3. The recurring theme across allconsultations was that peoplewith disabilities want greaterchoice and control in how theyengage with supports andservices.

At the regional events inparticular, the view was expressedthat everyone has differentsupport needs. Personalisedbudgets should therefore beflexible and take account of thesedifferences. The need for goodinformation and guidance before aperson takes up a personalisedbudget also featured heavily, withcalls for training and informationcampaigns.

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There was agreement at theconsultation events that there isan understanding that thedevelopment and implementationof a system of personalisedbudgets was a complex task thatwould evolve over time.

The idea that any oversight ofpersonalised budgets should beproportionate featured heavily,and was a concept picked up bythe Task Force and applied to therecommended administrativeprocess.



• A standardised training package should be madeavailable on the various elements of managing apersonal budget. Training should include a focus on HRlaw, finance, employment relations etc.(Recommendation 9)

The Task Force recognised that anoperational vision and set ofguiding values should underpinthe introduction of a system ofpersonalised budgets. Drawing onthe international evidencereviews, the experience of serviceusers in Ireland and the views andexpectations expressed throughthe consultation process, the TaskForce proposes that the followingvision statement and set ofprinciples should apply topersonalised budgets. The visionstatement was agreed at a plenarysession of the Strategy Group andthe Advisory and ConsultativeGroup, and represents thecollective view of both.

5.1 Vision StatementPersonalised budgets will enable aperson with disabilities to havechoice and control over

individualised supports in allaspects of their lives, to enjoy anindependent life and to be anactive participant in theircommunity.

5.2 Guiding Principles and Valuesunderpinning the PersonalisedBudgets ProcessTranslating a set of principles intooperational practice may bechallenging in any new system. Itis recommended therefore, as ameans of embedding theseprinciples, that an individual’spersonalised budget be designedin accordance with an outcomesframework developed by the NDAand described below.

The Task Force felt that thefollowing principles were keyconsiderations for a person with adisability:

Vision and Values 5

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Choice I can make choices and decisions about my lifeand my support plan.

Dignity My privacy and dignity is respected and I amgiven the chance to try new things and takerisks.

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Empowerment I am supported to have my say and takecontrol of my life.

Equality I have rights like others and I get theinformation and support I need to understandand realise my rights.

Independence I am supported to be as independent as I can be.

Person I am an individual with my own life experience,centeredness gifts, skills and culture. My person-centred plan

supports me as a person of value to be part ofmy community.

Respect I am treated as an adult and my views arerespected.

In keeping with the values that a personalised budget should embodyas set out above, there are also a number of principles that shouldunderpin the way in which a personalised budget system isimplemented or operated.

Creative All people involved in the Personalised BudgetProcess should be supported and encouragedto think differently; to be creative about howresources can be used to best effect that suitseach person.

Flexible and A Personalised Budgets system should not beproportionate one size fits all. A Personalised Budget should

work flexibly and proportionately in a way thatreflects each person’s need and circumstances.

For the benefit of A Personalised Budget should be spent for thethe person with a direct benefit of the person with the disabilitydisability and not their care provider, support worker, or

a family member.

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Impartial The process for allocating a PersonalisedBudget and the rules surrounding how it canbe used, will be fair, rational and transparent.

Equitable A Personalised Budget should not advantage ordisadvantage a person who chooses to use one.

Informative Information about what to expect from thePersonalised Budget process should be clearand well communicated.

Non duplication HSE should not fund through a PersonalisedBudget anything that is the responsibility ofanother Government Department or StatutoryAgency.

Efficient The Personalised Budget should be spent inthe most efficient way possible, with everyeffort made to ensure the supports or servicespurchased are cost-effective.

Outcome focussed The Personalised Budget should be builtaround the Transforming Lives nine high-leveloutcomes framework; making sure that theservices and supports are arranged to providethe best chance for the person of achievingthem as relevant and appropriate to theirindividual circumstances and goals.

Portable A Personalised Budget should enable thesupports and services follow the person, ratherthan prescribing where support should bedelivered.

Universal The Personalised Budget should be an optionopen to all adults with a disability requiring adisability support currently funded by HSEDisability Services.

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5.3 OutcomesA focus on outcomes isconsidered to be an essential partof the recommended servicedelivery framework underTransforming Lives. The NationalDisability Authority developed aframework for outcomesmeasurement for the proposedmodel of person-centred services.This framework was approved by

the Steering Group forTransforming Lives. It isacknowledged that achievingthese outcomes fully is beyondthe scope of HSE funded disabilityservices alone, but the frameworkcan be a useful reference point toenable individuals identifysupports and set goals that leadto positive outcomes.


Table 5: Disability Services Outcomes Framework

Outcome Sub-domains

Disability service users:

1. Are living in their own Ordinary housinghome in the community Suitable housing (e.g. adapted)

Choice of who the person lives withThe run of your homePrivacy

2. Are exercising choice and Choicecontrol in their everyday Controllives Everyday routines

Major life decisionsPositive risk-taking

3. Are participating in social Social lifeand civic life Socially connected/not lonely

Community activitiesCivic activitiesCan access the community(accessibility/transport/mobility)Attends church if so wishes

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Outcome Sub-domains

Disability service users:

4. Have meaningful personal Familyrelationships Friends

Intimate relationships

5. Have opportunities for Educationpersonal development and Trainingfulfilment of aspirations Education/training outcomes

Realisation of personal goals, bothlong-term and short-term

6. Have a job or other valued Employmentsocial roles Other valued social roles

Doing things for others

7. Are enjoying a good Satisfaction with lifequality of life and well-being

8. Are achieving best Physical healthpossible health Mental health

Healthy lifestylePreventive care

9. Are safe, secure and free Safetyfrom abuse Security and continuity

Being respected, listened toFreedom from abuse

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5.4 Conclusions The Task Force concluded that thekey purpose of introducingpersonalised budgets is to providemore choice and control forpeople with disabilities inselecting their supports andservices.

Following extensive discussion oneligibility, it was agreed that apersonalised budget optionshould be open to all adults with adisability who are receiving

HSE-funded Disability Services. It is the view of the Task Forcethat expenditure under apersonalised budget should belinked to the achievement ofoutcomes as specified within theagreed outcomes framework forthe disability sector. The focus ofa person-centred plan should beon supporting the person towardsachieving any or all of the nineoutcomes under the outcomesframework.


6.1 IntroductionEarly in the process, the TaskForce accepted that there was nosingle approach to implementing asystem of personalised budgetsthat could be adopted fromanother jurisdiction. Researchindicated that further technicalwork would be required tosupport the work of the Group.The design of a system,appropriate in an Irish context,was assigned to a dedicated workstream in the Task Force workplan.

The Department issued a requestfor tender to develop potentialadministrative and governanceframeworks for implementingpersonalised budgets in an Irishcontext, to form the basis forinput to the Task Force’s finalreport and recommendations tothe Minister. Following acompetitive tendering process aconsultancy firm was appointedby the Department of Health inJuly 2017. The consultant’s fullreport is available on the

Department website:http://health.gov.ie/disabilities/task-force-on-personalised-budgets/.The Task Force took intoconsideration the consultant’sreport and it formed the basis of anumber of recommendations. Oneof the main points in theconsultancy report was that, inline with the types of personalisedbudget commonly offeredinternationally, the Task Forceshould consider three paymentoptions: (i) Person Managed Fund,(ii) Co-managed with ServiceProvider and (iii) Broker Managed.A fourth funding arrangement,where someone chooses a mix ofoptions 1, 2 and 3 may also bepossible in the future.

The Task Force also requestedthat in designing a system ofpersonalised budgets, theconsultants should set out a rangeof governance options atappropriate stages and these aredescribed in the next chapter13.The consultants reported to theTask Force in November 2017.

13 Good governance as defined by the HSE Quality Assurance and Verification Division, sets standards ofaccountability, transparency, responsiveness, equity, empowerment and inclusiveness. HSE QualityAssurance & Verification Division – http://www.hse.ie/eng/about/QAVD

What the personalised budgetsadministrative process will look like

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Based on this research andappraisal, the Task Force sets outa set of proposals for personalisedbudgets for people with adisability. The finalimplementation of the model isdependent on outcomes from thedemonstration projects.

Note that the “person” referred tothroughout this processrepresents the person with adisability and/or his/her supportnetwork e.g. advocate or chosenrepresentative. In certaincircumstances a family member,advocate, guardian, decision-making assistant, co-decision-maker or decision-makingrepresentative may be nominatedto act as fund manager and wouldassume the associated reportingand accountability responsibilities.

6.2 Types of supports andservices that can be fundedPeople with disabilities who areeligible for HSE-funded disabilitysupports and services will be ableto apply for personalised budgets.However, it should be noted thatnot all services and supportscurrently provided by the HSE willbe funded by a personalisedbudget in the early stages of theprogramme.

The following list outlines some ofthe main supports that people willbe able to purchase using apersonalised budget, although thesupports that are available at aparticular point in time may belimited in cases where there is alack of availability of or fundingfor a particular support:

• Support for engagement incommunity based activities

• Support for engagement insocial activities

• Employ someone to help withthe activities of daily living

• Employ someone to providesupport for householdmanagement, e.g. cleaning,cooking

• Personal support to attendtraining funded by the HSE(e.g. rehabilitative training)

• Centre-based day services.

A more detailed list of thesupports and services funded byHSE Disability Services is availableat www.health.gov.ie.

It should be noted that severalsupports that are provided by theHSE are not funded by HSEDisability Services, and aretherefore not under the remit ofthe Task Force to make


recommendations on. Theseinclude adult therapy services andaids and appliances.

Given the high proportion of theoverall HSE Disability Servicesbudget that is spent on pay costs(82-85%), it could reasonably beexpected that a similarly highproportion of a personalisedbudget is likely to be spent onstaff costs.

Day-to-day living costs (sametype of expenses that a personwithout a disability is reasonablyexpected to meet, e.g. bills, foodand drink, mortgage or rent,insurance) are not covered by apersonalised budget in anyjurisdiction and therefore it isrecommended that they not befunded under the Irish system. Itshould be noted that that any useof a personalised budget shouldprimarily be on the supports toengage in activities that will inturn help to achieve specified

outcomes, but will not be used tomeet the costs of an activity itself.For example, a person may pay forthe support required to get themto an activity in the community,like a music or sporting event,from their personalised budget.However, the cost of the ticket forthe event would not be coveredby the personalised budget andthe person would need to pay forthis from their own funds.

6.3 Personalised Budget SystemStages6.3.1 Entry to a personalisedbudget system An overview map of the proposedstructure for entry to apersonalised budget system isshown in Figure 2. This showshow a person may enter servicesin the future and following anassessment of support needs andapproval of an indicative budgetmay then decide to go for apersonalised budget, traditionallyfunded services or a mix of both.

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Figure 2: Proposed model for entry to Personalised Budget system

FUTURE STATE

Proposed model for Personalised Budgets

Person Currently in

DisabilitySupportServices

SchoolLeavers via

CurrentSchoolLeaversProcess

Person withDisabilitybut not

CurrentlyReceivingServices

AcquiredDisability

Application for Entry to Services or Entry

to Personalised Budget Services

New/Updated Assessmentof Support & Care Needs

Indicative Budget

Person & AssessingPractitioner

Develop Outline Personal Support Plan

Persons OutsideServices

Persons inServices

Information on ServiceOptions

Person opts to Split SupportRequirements Between PB & Current Services

Current ServicesPersonalisedBudget

It is envisaged that an assessmentof support needs will be carriedout by an assessing practitioner14

using an agreed standardisedassessment tool. This is vital toensure that there is equity,consistency and good governanceof personalised budgets. The HSEis in the process of deciding on astandardised assessment tool tobe implemented across allDisability Services. While nationalimplementation may take sometime, it is hoped that astandardised assessment tool willbe available for the roll out of thedemonstration projects. Followingassessment an individual supportplan will be drafted and reviewedperiodically based on desiredoutcomes described in Chapter 5.

Stages in the application process:

6.3.2 Stage 1 – Information onSupports OptionsPeople should be provided withrelevant information to determineif a personalised budget may be adesirable way to meet their

support needs. This process maytake a number of forms e.g. anonline application system,telephone support line or face toface meetings. Comprehensiveinformation options should beprovided at this stage, in allaccessible communication formatsincluding Plain English and EasyTo Read versions, to ensure thatpeople may determine if apersonalised budget is a suitableoption for them. This may alsoinclude peer-to-peer support toensure that both the benefits andbarriers to a personalised budgetare fully understood. Theoutcome from this process will bethe person deciding to proceedwith an application for apersonalised budget or to remainin current services. The personwill be able to review thatdecision at any time.

6.3.3 Stage 2 – ApplicationPeople interested in apersonalised budget may applyusing a written application formthat would be reviewed by an

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14 The main role of the Assessing Practitioner is envisaged as assessing support needs in collaborationwith the person, and giving information and guidance to the person to enable them to make aninformed decision on whether a personal budget is suitable for them and if so which is the right option/model for them.

The consultants did not make any recommendations as to who the assessing practitioner should be, asthis is an operational matter outside their scope. It was noted that it is important that the person beplaced at the centre of this process and communication will take the form of a two-way conversationthat places the assessing practitioner in a support role.

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‘assessing practitioner’. They mayalso apply by engaging in anassessment together with theassessing practitioner wheresupport needs are discussed andagreed together. This is suited toindividuals who may requireadditional support through theapplication process and beyond.

The application stage will result inthe person either availing of apersonalised budget, remainingwith current services or availing ofa part personalised budget and partcurrent services. In some cases, thesupport services requested may becurrently unavailable through apersonalised budget and theperson may decide to remain incurrent services. An indicativebudget will be agreed for thosewho choose a personalised budget.

The person should be given theoption to discuss any decisionmade about their application withtheir practitioner and an appealsprocess should be put in place if aperson is not satisfied with adecision taken. The appealsprocess is described in more detailat 6.3.7.

6.3.4 Stage 3 - Support andPlanning If the personalised budget is

accepted, the person andassessing practitioner finalise andagree a personal support plan,including a spending plan, anddiscuss various payment options.

The process should be person-centred and provide applicantswith a voice in the decisionmaking process ensuring thatpersonal support plans reflect theneeds of the individual. Anapplicant should be supported inmaking choices regarding theservices they wish to access. Theyshould be supported to have aclear understanding of what thebudget can be used for and whatflexibility exists when choosingpossible support options. Theprocess should work towards therealisation of personal goals andfulfil the person’s aspirations. Asnoted earlier the personal supportplan will link to the outcomesdescribed in Chapter 5.

6.3.5 Stage 4 - Implementationand AccountabilityOnce a decision has been agreedto provide a personalised budgetthe individual will discuss asuitable payment option withtheir assessing practitioner. In linewith good governance, a contractwill be signed by both partiesoutlining:


i) the amount of funding to beissued

ii) details specifying what typesof support can be purchased(the “spending plan”) and howthese align with the agreedoutcomes.

The contract will require theindividual to be clear and agreeabout the policies and processesin place that need to be adheredto in relation to the payment ofthe funding and how it needs tobe accounted for.

There will be three paymentoptions that a person may choosefrom:

Payment Option 1 – PersonManaged FundUnder this payment option, fundsare transferred periodically to adedicated bank account under thedirect control of the budgetholder. The budget holder thenarranges for payments to be madeto service providers or staff, etc.in accordance with the agreedpersonal support plan andspending plan. The person will befully responsible for managing theaccount, paying for services,keeping appropriate financialrecords and submitting these tothe HSE at the agreed intervals.

With this payment option, thebudget holder is likely to beentering into a contract with aservice provider or they may bebecoming an employer directly.While the person may not need topay a third party for overheadsassociated with a personalisedbudget, this payment optionattracts particular legal andfinancial responsibilities, includingan increased administrativeworkload and employee manage-ment responsibilities. Informationand support modules on variousaspects of employment / con-tract law will need to beundertaken. These are set out inmore detail in Appendix 10.3.

Payment Option 2 – Co-managedwith Service ProviderIn the case where it is agreed thatthe funding will be paid directly toa service provider, the contract forservices will be between the HSEand the service provider but withthe person determining andagreeing the services andselecting the service provider withthe HSE. This model may appealto people who want a directrelationship with the serviceprovider but not theresponsibilities of being anemployer and/or entering acontractual relationship with the

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service provider. The person willundergo mandatory training ofappropriate HSE approvedtraining modules, will receive a listof HSE approved serviceproviders and will select apreferred service provider. Underthis model, the approved serviceprovider is likely to be anorganisation who has a ServiceAgreement with the HSE. Termsand conditions, including apersonal support plan with aspending plan, will be agreed bythe person and the serviceprovider with input from the HSE.Once the terms and conditionsare finalised a contract will beissued and signed by the HSE,person and service provider.

While the person does notdirectly meet administrative coststhemselves in this model, they willbe indirectly paying for theadministrative overheads incurredby the service provider (e.g. staffcosts, back office and otheroperational costs). This is inkeeping with the current serviceprovider funding mechanism.

Payment Option 3 – BrokerManaged FundThe person will undergo trainingof appropriate HSE approvedtraining modules. This will equip

the person with the skillsetsnecessary to engage theappropriate services of a suitablyqualified brokerage company.

The person will receive a list ofHSE approved brokers and willreview and engage in discussionswith them to determine which ofthe following broker services bestmeets their needs:a) Broker as the employerb) Broker as facilitator c) Broker as financial

intermediary / manager

The person will select theirpreferred broker and brokerservice and will agree the termsand conditions with them,including all charges associatedwith the cost of brokerage in atransparent and accessible format.The literature review indicatesthat the costs of the broker areusually met from within thepersonalised budget.

Option A) Broker as the EmployerThe Broker will manage the wholeprocess from helping to finalisethe personal support plan andspending plan, sourcing suitableproviders / employees, agreeingterms and conditions, appointingthe providers / employees,


monitoring the performance ofthe provider and reporting to theHSE. The broker will directlyemploy the service provider /employee and take on allresponsibility for sick cover,holiday cover etc. The broker willbe responsible for the reporting offinancial information to the HSEand the person, in consultationwith the broker, will report on theperformance of the serviceprovider/employee.

Option B) Broker as FacilitatorIn this model, the Broker willsupport the person in finalisingtheir personal support plan andspending plan, sourcing suitableproviders, agreeing terms andconditions and appointing theservice providers / employees.

The person may decide to use thebroker as a once off service tofacilitate and advise on setting upa personalised budget or they maykeep on the broker as an advisorto help them with the running andmonitoring of their budget.

Option C) Broker as Financial Intermediary /ManagerIn this model, the person maydecide to engage the broker tomanage the finances on theirbehalf or to provide ongoingmanagement services.

The person would agree thespecific role of the broker andagree a contract with them. Theperson/broker will report to theHSE on the financials andperformance of the serviceproviders or employees.

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Person Managed Fund

Co-managed withService Provider Broker

STAGE 1 Information on Supports Options: Individual engages in an information and briefing stage

STAGE 2 Application:Individual applies for a personalised budget through assessing practitioner

STAGE 3 Support & Planning: Queries and payment options discussed

STAGE 4Implementation and

Accountability: Individualdecides preferred payment

model and finalises personalsupport plan, in consultationwith Liaison Officer, Service

Provider or Broker.




Provider or Broker.




Provider or Broker.

Person managed plan1. Payment made direct

to Individual.2. Individual pays for

approved supportsaccording to agreedsupport plan.

3. Individual becomesemployer or entersinto contract withservice provider.

Co-managed Plan1. Payment made by HSE

to service providerselected by the person.

2. HSE pays for approvedsupports as agreed insupport plan.

3. Contract between HSEand Service Provider.

Broker managed plan

Broker as Employer1. Payment made to

approved Broker2. Broker pays for

approved supportsaccording to agreedsupport plan.

3. Broker as employer andenters into contractwith service provider.

Broker as Facilitator1. Individual or approved

Broker paid directly.2. Broker supports

individual to agreesupport plan and source supportservices.

3. Broker or individualengage in contracts.

Broker as financial managerBroker acts as financial managerand assists the individual tosource services and agree planswith HSE.

STAGE 5Review

Accounting, reportingmechanisms, and outcomesreview agreed. Amendments

to/withdrawal from personalisedbudget where required.

STAGE 5Review



STAGE 5Review



STAGE 6Option to Appeal



6.3.6 Stage 5: ReviewThe review process is designed toensure that the budget is beingused in accordance with thepersonal support plan agreed atthe outset. An Accounting Reviewis designed to ensure that themoney is being spent in line withthe support plan, that properfinancial records are being keptand that further payments areapproved until the next review.

An Outcomes Review examinesthe broader operation of thepersonalised budget for theindividual and its success atmeeting the outcomes identified atthe outset. Where appropriate theOutcomes Review may alsofacilitate adjustments to theassessment of support needs,personal support plan and level ofbudget assigned. These reviews arenot intended to replace anyongoing support and interactionbetween the Liaison Officer15 andthe budget holder but are intendedinstead to provide periodicreassurance that the personalisedbudget is appropriate and isoperating as intended.

A clear reporting structure will be

put in place and regularaccounting reviews will bescheduled and carried out. Thisprocess should include the personmonitoring and regularly reportingon the performance of the serviceprovider and measures outcomesachieved against planned targets.These governance arrangementsbetween the person, the serviceprovider and the HSE will beagreed at the outset as part of thecontractual arrangements.

The person will be responsible forthe full management of the fundsallocated and for paying the serviceprovider or employee and keepingappropriate financial records.

6.3.7 Appeals and ComplaintsProcessesWhere an application for apersonalised budget is refused orthe person is concerned with theallocated funding, a clear appealsprocess should be in placeoutlining what grounds an appealcan be made on, how to appeal adecision and how decisions aremade in relation to applicationsand assessments. There should bea time line around this process. The HSE Quality Assurance and

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15 The Liaison Officer will be involved in performance reviewing of the personalised budget with theperson and in ensuring that the service providers, employees and/or broker delivers the supports to thePerson to the expected quality standards and governance compliance requirements.

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Verification Division state that thepurpose of the HSE Appeals Service is to provide internal,independent and impartial reviewof decisions taken by HSEpersonnel relating to applicationsby members of the public forspecified service and entitlementswhere applicants are dissatisfiedwith the outcome of theirapplication. This process shouldbe applied to personalisedbudgets also.

Where a service user wishes tomake a complaint about an aspectof the personalised budget systemor its operation, rather than abouta decision, a separate complaintsprocess should be available.

6.4 Conclusions andRecommendations6.4.1 ConclusionsThe consultant’s report describes,in detail, the administrative andgovernance elements of apersonalised system and includesa Strengths / Weaknesses /Threats / Opportunities analysisof the different options.

The report helped the Task Forceto clarify the processes aroundapplication for and payment of apersonalised budget. One of thekey points is that, for those not

already in receipt of supportsfrom the HSE, the person willneed to go through an assessmentof support needs (AOSN) beforebecoming eligible to apply for apersonalised budget. For peoplecurrently in receipt of supportsfrom the HSE, the person wishingto apply for a personalised budgetwill need to undergo areassessment of their supportneeds, which the Task Forcewould see as occurring through astandardised assessment tool.

The proposed framework ensuresthat the level of oversightrequired for a personalised budgetis proportionate to the amount offunding available to the personthrough the personalised budget.

The Task Force considered thecontents of the report and, basedon the diversity of personalisedbudget systems internationally, itrecommends that theadministrative process and therange of audit and governancearrangements described be testedin a series of initial demonstrationsites. The outcome of these willthen inform future roll-out ofpersonalised budgets.

A copy of the full consultantreport is available on the


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• A personalised budget may be used for support with dailyliving activities and participation in the community,including personal assistance or home care support.(Recommendation 1)

• A personalised budget should not duplicate any supportsor services provided by another Department or Statutoryagency or be used for day to day living costs such as rent,groceries, utility bills or other consumer spending.(Recommendation 2)

• The personalised budget arrangements will allow for threepossible funding models: 1. Self-managed fund2. Co-managed with HSE/Service Provider3. Broker/Intermediary managed. (Recommendation 3)The operation of personalised budgets will follow the fivestages of:1. Information and Support2. Application3. Support and Planning4. Implementation and Accountability5. Review (Recommendation 4).

• Following agreement of indicative budgets a detailedspending plan will be agreed by the assessing practitionerand the applicant (and their family or other supportnetwork as appropriate), as to how their support needswill be met. (Recommendation 7)

• This support plan will take into account the supports thatare provided through family, community or other statesupports. The final personalised budget may vary from theindicative budget based on the outcome of this planningprocess. (Recommendation 8)

Department of Health website athttp://health.gov.ie/disabilities/task-force-on-personalised-budgets/

7.1 Governance for personalisedbudgetsThe consultants who advised onthe administration process werealso tasked with developingpotential governance frameworksfor implementing personalisedbudgets in an Irish context.

In designing a system ofpersonalised budgets, theconsultants were requested to setout a range of governance optionsat appropriate stages, takingaccount of the values andprinciples set out earlier. Goodgovernance16, as defined by theHSE Quality Assurance andVerification Division, setsstandards of accountability,transparency, responsiveness,equity, empowerment andinclusiveness.

Good governance requires clearrules and processes regarding theoperation of personalised budgetsand accountability for thespending incurred. From theperspective of the individual,good governance should include

the following:• Empowerment of the person

with a disability• Person at the centre of

decision making relating totheir personal support plan

• Enhancement of quality of lifefor the person

• Increasing the capacity of theperson to self-determine,shaping their own supportsand services

• Importance of shaping theperson’s own supports andservices

• Mechanisms to ensure balanceof need, risk and civil liberties

• Identified agreed outcomes.

At the outset, the person shouldbe assisted and mentored inunderstanding theappropriateness or otherwise ofusing a personalised budget tomeet their needs. The personshould then be fully supported inmaking their own decisions inrelation to areas of expenditureand it is essential that the personis at the heart of any process inrelation to personalised budgets.

16 HSE Quality Assurance & Verification Division – http://www.hse.ie/eng/about/QAVD

What the personalised budgetsgovernance process will look like

7

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7.1.1 Levels of governanceAs previously outlined, thereviews of international evidencefound significant variation in thelevels of oversight andgovernance applied in differentjurisdictions. The consultantswere asked to develop and applythree possible levels ofgovernance which might beapplied at various stages of apersonalised budget system inIreland. Their proposals aredescribed as:

• “Level 1” which is a low orlight-touch level, applying onlyminor restrictions or reporting/ audit requirements. Thisprovides a minimal amount ofoversight by the systemfunder.

• “Level 2” is a moderate level ofgovernance and requiresincreased frequency ofreporting and review, imposinga higher level of oversight.

• “Level 3” is a high level ofgovernance with the mostrestrictions, significantoversight, review andreporting requirements.

When developing these, theconsultants applied the conceptsof proportionality and a ‘phasedgovernance’ approach. These

were applied to the three modelsto align with differing levels ofsupport funding and to allow forreduced levels of governanceonce a personalised budgetoption, selected by the person, isin place and operatingsatisfactorily. It is important tonote that governance andoversight applies not just tofinancial reporting or auditing butalso to the monitoring ofoutcomes for the person inreceipt of the personalisedbudget. Accordingly, varying levelsof governance may be appropriatein specific circumstances.

The consultant’s report suggestedthat decisions around governancelevels will need to be taken duringStage 4, “Implementation andAccountability” and Stage 5,“Review”. They identified sevenspecific topics on which differentlevels of governance will impactduring these stages.

1. Process for approval of trainingcourses

2. Role of Liaison Officer in thereview of service providers bythe person

3. Role of Liaison Officer in theselection of service providersby the person

4. Role of Liaison Officer in the

review of brokers by theperson

5. Process for selection of serviceproviders under PaymentOption 2 – Direct to serviceprovider

6. Frequency of financialreporting and review

7. Frequency of outcomes review

7.1.2 Guidance and InformationIf the person chooses to self-manage the funds, they may beentering into an employmentcontract with an employee or theymay be entering a contractualagreement for services with asuitable service provider. Theywill need the skills to recruit andappoint employees and/or toinvite and award contracts toservice providers, to manage thefunds, determine the outputs andoutcomes required of the supportservices and the skills to complywith the governance reportingrequirements of the HSE.

7.1.3 Role of Liaison OfficersSome level of support may benecessary in reviewing the rangeof service providers available to abudget holder and in selecting thepreferred provider. Theexpectation is that the HSE willprovide a list of approved serviceproviders and this is reviewed by

the budget holder, perhaps withthe support of a liaison officer.Liaison officers may have a similarrole in supporting a person tounderstand and select anappropriate brokerage servicewhere they choose this paymentoption.

The person will be required toreceive training in appropriateHSE approved training modules.This will equip the person withthe skillsets necessary to selectand engage the services of asuitably qualified brokeragecompany. The person will receivea list of HSE approved brokersand will review and engage indiscussions with them todetermine which of the followingbroker service best meets theirneeds:a) Broker as the employerb) Broker as facilitator c) Broker as financial

intermediary / manager

The Person will select theirpreferred broker and brokerservice and will agree the termsand conditions with them.

Different levels of governancemay influence the role of liaisonofficers in these processes.

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7.2 Selection of service providersor employeesThe rules governing theappointment of service providersor employees will have to bedetermined. There will be rulesregarding costs, qualifications,relationship to the person, andcompliance with any relevantstandards or regulations, etc. Termsand conditions will be finalised, andcontracts developed. The serviceprovider or employee will sign thecontract with the budget holder.The service provider or employeewill be registered or vetted in linewith the National Vetting Bureau(Children and Vulnerable Persons)Act 2012 to 2016. The person willreview the terms and conditionsassociated with the options theyare considering and will choosetheir preferred service provider (oremployee).

7.3 Review and monitoringThe personalised budget user will

be responsible for the ongoingmonitoring and reporting offinancials and level of supportsreceived. Where a family member,advocate, guardian, decision-making assistant, co-decision-maker or decision-makingrepresentative is nominated to actas fund manager, they will assumethe associated reporting andaccountability responsibilities forthe fund on behalf of the person.A person may act jointly with aco-decision-maker as a fundmanager or a decision-making-representative, with authority tomake financial decisions. It isimportant to note that any personappointed as a fund manager,should act in accordance with thewill and preference of thepersonal budget-holder.

This needs to be recognised in thegovernance structures of thepersonalised budget.

Table 6: Differences in Reporting Structures

Level 1 Governance(Low)

Reviews conductedby the budgetholder and reportedto the HSE.

Level 2 Governance(Medium)

Reviews conductedby the budgetholder and reportedto the HSE.

Level 3 Governance(High)

HSE will be involvedin the reviews ofservice andperformance.

The frequency of reportingdepends on the Governancemodel applied. In developingthese proposals, the consultantsapplied a ‘phased governance’introduction to demonstrate initialeffectiveness of reporting andhelp mitigate risks at the start for

the person and for the HSE. Theconcept of ‘proportionality’ wasalso applied in structuring thegovernance requirements fordifferent levels of supportfunding. These reportingarrangements apply for all threepayment options.

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Table 7: Frequency of Accounting Reporting required

Funding up to €20k Initially once permonth for twomonths. Once peryear thereafter.

Funding of €20-50k Initially on amonthly basis forfirst three monthsand thereafter 2times a year

Funding over €50kInitially on amonthly basis forthe first two monthsand thereafter 3times per year

Funding up to €20k Initially every six-weekly for threemonths. Every sixmonths afterwards.

Funding of €20-50k Initially on amonthly basis forfirst three monthsand thereafter 3times a year

Funding over €50k Initially on amonthly basis forthe first threemonths andthereafter 4 timesper year

Funding up to €20k Initially once permonth for twomonths. Every two monthsafterwards.

Funding of €20-50k Initially every twoweeks for the firstmonth andthereafter 12 timesper year

Funding over €50k Initially on a weeklybasis for the first-month followed byfortnightly reportingfor two months.Thereafter 12 timesper year




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In general terms, it is clear thatunder Level 3, the highest level ofgovernance and oversight, there isa requirement for more frequentreporting and review ofaccounting and outcomes than atthe other two levels. Similarly,where higher amounts of fundingare approved there are morestringent reporting requirements.

7.4 Conclusions andRecommendations7.4.1 ConclusionsService providers and supportworkers recruited from apersonalised budget should havecompleted relevant training inrelation to delivering supports to

people with disabilities. Thisshould be aligned to the qualityframework that will be publishedunder Transforming Lives.

For the purposes of audit and toensure that minimum standardsare met, the Task Forcerecommends that the HSE create,maintain, and regularly update alist of approved service andsupport providers with whom apersonalised budget can be used.This register should be used toverify that the support purchasedwith a personalised budget is paidto a person or organisation that issuitably qualified, Garda vettedand tax compliant.

Table 8: Frequency of formal reviews of the Outcomes for budget holder

Funding < €20k Year 1 – 1 reviewYear 2 – 1 review

Funding €20-50k Year 1 – 1 reviewYear 2 – 1 review

Funding over €50kYear 1 – 1 reviewYear 2 – 1 review

Funding < €20k Year 1 – 1 reviewYear 2 – 1 review

Funding €20-50k Year 1 – 2 reviewsYear 2 – 1 review

Funding over €50k Year 1 – 3 reviewsYear 2 – 2 reviews

Funding < €20k Year 1 – 3 reviewsYear 2 – 2 reviews

Funding €20-50k Year 1 – 4 reviewsYear 2 – 3 reviews

Funding over €50k Year 1 – 4 reviewsYear 2 – 4 reviews




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• The governance of personalised budgets will follow theguidelines outlined in Chapter 7 of this report. The levelof governance will vary depending on the fundingoption and on the amount of the personal budgetapproved. (Recommendation 5)

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As indicated in the internationalevidence review presented inChapter 2, the introduction ofpersonalised budgets in otherjurisdictions has in some instances,given rise to unforeseen additionalcosts, threatening the long termsustainability of these fundingarrangements. This risk was notedby the Task Force at the outset andexpert assistance was sought fromthe Department of Health’sResearch Services Unit to assessfinancial sustainability from ahealth and social care policyperspective.

8.1 Financial Sustainability -backgroundThe World Health Organizationconcludes that, while there is littleclarity or consensus on adefinition of financialsustainability, the issue is oftendescribed as the ability ofgovernments and others toadequately finance health care inthe face of growing costpressures. Population ageing, newtechnologies and consumerexpectations of healthcarecoverage and quality are the three

most commonly cited challenges(WHO, 2009). The WHO cautionsagainst viewing financialsustainability as a policy objectivein its own right as it may place thepolicy focus on achieving fiscalbalance, without regard for theconsequences and this maydistract attention from otherfactors contributing to fiscalimbalance, in particular efficiencyproblems. However, focusing onthe attainment of health systemobjectives, subject to therequirement of financialsustainability, provides policy-makers with a range of criteriawhich can inform decisionmaking. Specifically, presenting achoice of options within aframework of financial constraintscan highlight the explicit trade-offs which may need to be made.

8.2 Risks that may affect financialsustainabilityThe additional or new costsassociated with administering apersonalised budget is a key issueregarding financial sustainabilityof personalised budgets. It isdifficult to estimate this cost and

Financial Considerations for Personalised Budgets

8

this will vary depending on thechoices made regarding paymentoptions, governance levels, etc. Important factors to beconsidered in relation to staffinginclude: industrial relations issues,difficulties in recruiting personalassistants (which may result inhigher costs), risk of a two-tierworkforce with regulated andunregulated personal assistants.

Double-running costs(implementing personalisedbudgets alongside traditionalsystems) can arise as well asadditional cost factors fromunmet need, a risk of cherry-picking by private providers, useof personalised budgets to pay foritems previously paid for out-of-pocket, family carers displaced bypaid carers and potential fraud inboth the assessment and paymentphases.

Fraud in respect of personalisedbudgets may arise in relation to theassessment stage or during theimplementation phase. Theevidence indicates that fraud levelsoverall tend to be low and thatunderspending is more commonthan overspending. Measures suchas clear criteria and providing goodtraining to assessors can reducefraud at the assessment stage

while online systems of paymentand audit measures can minimisefraud during implementation. Theresearch evidence suggests thatwhile a high level of regulationdoes not necessarily enhance fraudreduction, it can act to dissuadeparticipation in a personalisedbudget due to a burdensome levelof administration.

Service users face potential riskfrom a possible decrease in HSEand HIQA oversight of the qualityof care delivered by an increasingnumber of service providers.Notwithstanding a commitmentto facilitate uptake by serviceusers with all levels of supportneeds, the experience in theNetherlands suggests that there isa risk of introducing inequity withbetter educated / higher incomeservice users or their familiesbetter positioned to access andnavigate personalised budgetsystems.

From a service providerperspective there may be loss ofeconomies of scale where asignificant number of existingservice users opt for a personalisedbudget and move to non-traditional providers. Similarly, sunkcosts into existing systems andinfrastructure may not be easily

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recovered if the number of serviceusers and associated block grantdecreases. Further risks can arise inrelation to the number and/or skillsmix of staff employed onpermanent contracts.

8.3 Planning for initialdemonstration projects - Costsand Financial SustainabilityconsiderationsThe initial demonstration projectswill be important not only guidingon necessary systems, structuresand processes, but also ininforming the costs involved andfinancial sustainability. Factors foranalysis in the initialdemonstration projects includethe range of services providedthrough a personalised budget(from a limited choice, to suite ofcore services, to an extensivechoice of services), the quality ofthe services provided, whetherthe services are centralised ordecentralised, the flexibility andchoice for users and the speed ofaccess to these services.

As staffing and associated pay-related expenditure are thebiggest cost component issues toconsider, the volume of staff alongwith factors such as location(centralised vs decentralised), typeand grade of staff (which in turn is

dependent on decisions aroundtype of services, level of choice,access, quality etc), substitutionand skill mix, quality and choiceshould all be monitored indemonstration projects.

Research suggests that a potentialdownward force on costs inrelation to staff may be seenthrough substitution of staff fromhigher to lower grades. However,existing contractual arrangementsfor employers may mean that theyhave limited flexibility in theshorter term to substitute staff inhigher grades doing work whichcould be delivered by others at alower grade. In the mid- to longer-term this would typically be lessof a constraint.

A key consideration in relation tocost will be ‘who’ is doing thegovernance. If the budget holdercan manage their own governancearrangements the per-hour costswould be expected to be at thelower end of the scale. Ifgovernance is supplied through athird party or a governance‘expert’ (e.g. a charteredaccountant with specific andrelevant experience) the per-hourcost and total cost would beexpected to be at the high end ofthe scale. If governance

arrangements are high-involvement, i.e. involving manyhours occurring periodically, thiswill increase total costs but willhave lower risk.

8.4 Suggested indicators to guideplanning and evaluation ofdemonstration projectsWith respect to financialsustainability, appropriate datacollection and informationgathering in the initialdemonstration projects canprovide valuable information on:• The impact of service user

take-up of personalisedbudgets on the system andhow this impacts costs ofservice delivery.

• The impact of changes indelivery of services to serviceusers by providers on theircapital costs, capitalinvestments, pay costs andnon-pay costs of serviceprovision including identifyingthe reality of unbundling, andthe administrative costs andchallenges of doing so.

• The aggregate impact on thedelivery of the system ofdisability services.

8.5 Conclusions 8.5.1 ConclusionsAll of the evidence reviewed

highlights the need for transitionaland set-up funding to develop newsystems, train staff and to test andevaluate the new processes.Change should be introduced overa fairly long period of time using astrategic and phased approach witha focus on depth and quality ratherthan scale.

A single national system ofpersonalised budgets is likely toprovide economies of scale incomparison to multiple local orregional systems. In addition, insome countries with adecentralised funding and decisionmaking model there was someinequality in access to services.

A key finding from theinternational experience is thatpersonalised budgets systems canbecome financially unsustainableif introduced without adequaterisk mitigation measures.

Market development may need tobe undertaken by the systemfunders if service users are to beoffered meaningful choice. Inorder for brokerage services to becost effective an adequatenumber of service users and ageographical focus may need tobe considered.

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9.1 What the next steps towardsimplementation should beThis report records the wide range of conclusions andrecommendations that the TaskForce were able to form as aresult of its work. A framework isrecommended that sets out thebroad principles that are requiredto underpin the introduction of anational system of personalisedbudgets. There are also a number

of areas where further data andresearch is required before finalconclusions can be made.

9.1.1 Demonstration ProjectsIt is the view of the Task Forcethat there will need to be anumber of initial demonstrationprojects to test the variousgovernance and payment modelsfor personalised budgets outlinedin this report. It will only be

Moving Forward with Personalised Budgets

9

Task Force Recommendations

Development of supporting infrastructure

Initial demonstration projects

Evaluation of initial demonstration projects

Subject to a positive evaluation

Agreement of final design

Implementation Plan

Table 9: Sequencing of Initial Demonstration Projects

possible to complete the financialsustainability piece of the workallocated to the Task Force oncethere are real models available inan Irish context, with acomprehensive set of data tomeasure the outcomes against.Table 9 sets out the sequencing ofthe development of the initialdemonstration sites. This processis projected to take in the regionof two years to complete.

9.1.2 Evaluation of initialdemonstration projectsThe Task Force is of the view thatthe final design of any system ofpersonalised budgets in Irelandcan only be decided upon oncethe initial demonstration projectshave been evaluated and thefindings assessed, alongside theoutcomes achieved by the personand the financial sustainability ofthe system as a whole.

Detailed variables to consider aspart of demonstration projectsinclude service-usercharacteristics, schemecharacteristics and othermeasures such as outcomes,geographical variations,substitution, price variation andcompetition etc. Thedemonstration projects shouldreflect the challenges relating to

rural areas and communityinclusion. As well as informationon the operational costs of apersonalised budget, data shouldbe gathered on user experience,improved quality of life outcomesor greater flexibility. The design ofthe demonstration projectsshould also include systems forevaluation from the outset.

There will be initial set-up andtransition costs in introducing amodel of personalised budgets.The initial demonstration projectswill need to track the cost ofnecessary systems andinfrastructure in place to manage,monitor and measure all aspectsof personalised budgets. Theseconsiderations should bereflected in the evaluation of thedemonstration projects, whichshould also include consultationwith the key stakeholdersinvolved in the projects.

Education and training andcapacity building will be critical tosupport and sustain any model(s)of personalised budgets.Therefore, it will be important toconsider the infrastructure,systems or resources that need tobe put in place, the lead-in time todeliver same, and to consider howthese might change over time.

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The supports will need to beflexible and capable of beingadapted to reflect the nature of adisability and the level of need,including being capable ofadapting to acquired disabilitiesand progressive, episodic orchanging needs.

As there are currently no purebrokerage models currently inplace in Ireland, there is a need formarket development in this area.This will need to be monitored toassess the costs and effectivenessof difference brokerage services.

“Unbundling” of funding fromexisting services remains asignificant challenge for thedisability services, and it will needto be considered further as part ofthe demonstration phase.

The implementation ofpersonalised budgets should bemonitored and the learningshared through the NationalDisability Inclusion Strategy(NDIS) reporting mechanisms.Implementation of this Strategy isoverseen by a Steering Groupchaired by the Minister of State,with representatives of relevantDepartments and agencies and ofdisability stakeholders.

9.2 Additional considerationsIt is important that a personalisedbudget have a sound legal basis toensure that monies frompersonalised budgets are not seenas income for tax purposes,means assessment etc.

One question that has arisen ishow a personalised budget wouldbe treated for the purposes of ameans test for social welfarepayments. In our view, apersonalised budget, as currentlyenvisaged, should not beconsidered as income support as itis effectively an alternative todirectly provided HSE-fundedservices. Any payments providedshould not be regarded as incomefor the purposes of socialprotection payments, medical cardor other income related supportsand this should be reflected wherepossible in legislation. The TaskForce is of the view that this is alsotrue for the purposes of Revenueconsiderations. This may alsoimpact on how a system ofpersonalised budgets wouldinteract with court awards forcompensation or insurancepayouts.

If a direct payment model ofpersonalised budgets is rolled outin the future, it is the view of the

Task Force that this paymentshould be into a separate bankaccount from the personal bankaccount held by the person with adisability for governance andoversight purposes. This shouldalso assist in ensuring that onlytransactions associated with thepersonalised budget are recordedand are easily distinguishable forboth practical and audit purposes.

In cases where the value of apersonalised budget exceeds thethresholds laid down for publicprocurement, (e.g. if there is arequirement for advertising on e-Tenders or in the OJEU17) this wouldadd a significant administrativeburden and may need to bemanaged centrally by the HSE.

At this point, it is unclear whatrole, if any, HIQA will play inrelation to personalised budgets.Ongoing engagement with HIQAwill be required as there are anumber of supports that are mostlikely to be purchased using apersonalised budget that are notcurrently regulated by HIQA, butmay be in the future (e.g. draftinterim standards are in place forday services, but these are notcurrently inspected by HIQA).The Department of Health is

developing a new scheme that willimprove access to the home careservices that people need, in anaffordable and sustainable way.The Department will alsointroduce a system of regulationfor home care so that the publiccan be confident that the servicesprovided are of a high standard.The way that the new scheme andregulations will interact withpersonalised budgets will have beconsidered.

It is recognised that current HSE-funded disability supports aretypically provided through fundedservice providers as provided in legislation. Regulations orguidelines to support the directpayment model may need to beconsidered at a future date,depending on the outcomes ofthe initial demonstration projects.

9.3 Areas where members of theTask Force held differing viewsMembers of the Task Force helddiffering views on whether someflexibility should be allowed for asmall amount of discretionaryspending. While this spendingmight align with the goals of thesupport plan it would not feature inthe agreed spending plan or mightfall outside of the typical areas on

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17 Details of thresholds that apply to various types of contract are available at www.etenders.gov.ie.

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which a personalised budget couldbe used. It was agreed that thiswould be kept under review forfuture phases of the roll out ofpersonalised budgets.

The Task Force also did not hold ashared view on the topic of hiringfamily members with personalisedbudget monies. Some members ofthe Task Force felt that this shouldbe permitted, some felt that itraised governance issues,potential conflicts of interest, andpotential to undermine whosechoices are being made – theindividual with a disability or thefamily member's. In the absenceof an agreed approach, this willnot be permitted in the case of

the initial demonstration projects.

9.4 Potential areas for futureexpansionWhile the initial focus is onpersonalised budgets in lieu ofdisability services for adults, theTask Force recommends thatsubsequent phases of workexamine extension to other areas ofpublic service, including disabilityservices for children, building onthe work of this Task Force.

A separate paper has beenprepared to note views in thisregard that emerged over thecourse of the project that areoutside the scope of its work.

9.5 Recommendations related to this Chapter

• A key action in moving to personalised budgets is toundertake a planning and testing phase. TheDepartment of Health and the HSE should establishdemonstration sites to test the delivery of personalbudgets e.g brokerage models, direct payments etc. witha view to identifying the best approach to the wider roll-out of these payment models following the initialdemonstration phase. (Recommendation 10)

• The demonstration projects should also test a range ofissues such as the costs of operating a personalisedbudget for the individual, quality assurance, employeemanagement issues, governance arrangements andfinancial sustainability in the Irish context in accordance

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with the recommendations of the Task Force outlinedabove. (Recommendation 11)

• The demonstration projects should be implemented overa two year period from the date of publication of theTask Force Report. (Recommendation 12)

• A formal evaluation of the demonstration projects shouldbe completed and submitted to the Dept. of Health atthe end of the two year period. (Recommendation 13)

• The Department of Health should assess the evaluationreport and make recommendations to Government onthe next steps regarding roll out of personalised budgets.(Recommendation 14)

• Learning from the demonstration sites should inform thedevelopment of guidelines required to enable furtherimplementation of a personalised budgets system. Thisshould include specific provisions to support theintroduction of a direct payment model of personalisedbudgets and graded levels of accountability.(Recommendation 15)

• In conjunction with the Department of Employment Affairsand Social Protection, the Department of Finance andthe Department of Public Expenditure and Reform, theDepartment of Health should examine whether legislativechange may be required to ensure that a personalisedbudget is not subject to assessment as income or means-tested for the purposes of the Finance Acts or SocialWelfare Acts, or for other income tested schemes.(Recommendation 16)

• The Department of Health should report progress on thedevelopment and implementation of personalisedbudgets under the National Disability Inclusion Strategy.(Recommendation 17)

• The outcomes of the demonstration projects should beshared with other Government Departments, who maywish to consider the potential to implement personalisedbudgets in their sector. (Recommendation 18)

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Appendices10

10.1 Supporting Documentation (available on Department of Health website)1. Advice Paper on supports to apply for and use personalised

budgets – Report prepared by the Advisory & Consultative Group2. Easy Read Version of Personalised Budgets Consultation

Questions – Prepared by ACE Communication3. Easy Read Version of the Report on the Personalised Budgets

Consultation Process – Prepared by ACE Communication4. Financial Sustainability of Personalised Budgets, A document

complied by the Research Services Unit, Department of Health, forthe Task Force on Personalised Budgets

5. Introducing Personalised Budgets for Persons with Disabilities inIreland – Report prepared by ALPHA

6. List of Membership of the Advisory & Consultative Group7. List of Membership of the Strategy Group8. List of organisations represented at the Regional meetings9. List of organisations who participated in the written submissions10. National survey on the prevalence of personal budgets – Report

prepared by the National Disability Authority11. Personalised Budgets Consultation Questions – Prepared by Task

Force Secretariat12. Project Initiation Document13. References14. Report on the Personalised Budgets Consultation Process15. Synthesis Paper on Personalised Budgets – Report prepared by the

National Disability Authority16. Terms of Reference for the Advisory and Consultative Group17. Terms of Reference for the Strategy Group18. Work Plan Developed to assist the Task Force with its mandate

10.2 Task Force Membership10.2.1 Strategy Group MembershipChristy Lynch Chair of the Task ForceSiobhan Barron Chair of the Advisory & Consultative GroupJohn Bohan Department of Employment Affairs & Social ProtectionPatsy Carr Department of Health (April 2017 – Present)Claire Collins Department of Health (May 2017 – Present)Gráinne Duffy Department of Health (Until April 2017)Anne McGrane Department of Health (Until May 2017)Owen Collumb Áiseanna TacaíochtaPaddy Connolly Inclusion Ireland Sarah Craig Health Research BoardEithne Fitzgerald Independent memberAideen Hartney National Disability AuthorityBarry O’Brien Department of Public Expenditure and Reform Judith Merimans Department of Public Expenditure and ReformGary Lee Independent memberJoanne McCarthy Disability Federation of Ireland Gerry Maguire Special Advisor to Minister McGrathMarion Meany HSE Disability StrategyClodagh O’Brien Not for Profit Business AssociationBrian O’Donnell National Federation of Voluntary BodiesJennifer O’Farrell Department of Justice & EqualityGerard Quinn NUIG Centre for Disability Law and PolicyBrian Hayes* Advisory & Consultative Group representativeRachel Cassen** Advisory & Consultative Group representativeKieran Cashman Secretariat, Department of HealthJoanne Clarke Secretariat, Department of HealthMartin Naughton was appointed to the Strategy Group in recognition of his expertise andexperience in the area of personalised budgets, but sadly passed away on 13th October 2016.Ar dheis Dé go raibh a anam.

* Gordon Ryan is the alternate for this position, on the nomination of the Advisory & Consultative Group** Teresa McDonnell is the alternate for this position, on the nomination of the Advisory & Consultative Group

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10.2.2 Advisory and Consultative Group MembershipSiobhán Barron (Chairperson of the Advisory & Consultative Group)Sean ConneallyTeresa AccardiFionn AngusRachel CassenGordon RyanDavid GirvanPat ClarkeMichael DoyleJohn O’DohertyCathal LeonardDenis DoolanBob McCormackPadraic FlemingPaul FaganCarol O’DonnellMichael McCabe (June 2017)Teresa McDonnellGeraldine GraydonBrian HayesBrigid PikeMary DohertyJohn HanniganAnne Melly Laura EnrightSean ConnickJames CawleyStephen Cluskey (Until April 2017)Dharragh Hunt, National Disability Authority, Secretariat

10.3 Information on supports for self-managing a personalised budget

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Becoming an employer

• Basic Employment Lawincluding the responsibilitiesof being employer and saferecruitment and employmentprocesses

• Drawing up a job description

• Getting public liability andemployer’s insurance

• Setting out the Tasks

• Advertising the post

• Selection Process

• Interview Process and skillstraining

• Choosing the right person

• Doing the checks includingreferences and Garda vetting

• Health and Safety Training

• Contract of Employmenthow to draw up same

• Arranging staff induction andtraining

• Agreeing a probation period

• Getting employer’sindemnity insurance

• Data Protection

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Managing Money and HR Responsibilities

• Payroll and related topics

• How to set up a separatebank account

• Understanding matters inrelation to Statutory Leaveand payments for same thisshould include Sick Pay,Holiday Pay etc

• Reporting to Revenue, howto register for Revenue On-line, issuing P60s

• How to manage salaries foremployees

• Understanding responsibilityfor Social Insurance, Tax andPensions

• Ensuring back-up available tocover holidays, sick leave, andin emergencies

• Rosters

Performance Management

• Understanding how to ensurethat support needs aremeeting the agreedoutcomes as identified in thepersonal support plan

• Supervision of staff

• Understanding of Grievanceand Disciplinary Procedures

• Ensuring tasks are beingperformed as agreed and laidout in the job description

• Conflict Resolution

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Reporting Requirements

• How to keep an employeerecord and report on same

• Reporting on budget spendto funder

• Time sheets

• Reporting agreed outcomes

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10.4 Note from Advisory &Consultative Group on possiblefuture areas for extension ofpersonalised budgets

The Taskforce was tasked withconsidering a model ofpersonalised budgets that wouldprovide adults with disabilitiesmore control and choice withregard to how they would use apersonal budget to purchasesupports that would be fundedwithin the HSE personal socialservices budget.

While it is recognised that theconcept of personalised budgetsis not limited to health andpersonal social services and thatthe approach would mean that apolicy would commence in thisarea only, views on areas thatcould be considered in the futurewere also noted through the workof the Task Force and widerconsultation, as follows:

• Children with disabilities.• Aids, appliances and assistive

technology. • Education Supports.• Employment Supports.• Transport. • Home supports that enable

independence.• Clinical (psychology, social

work, medical) and therapy(Speech and Language,Occupational andPhysiotherapy) services, aswell as alternative therapyservices.

• Wealth accumulationstrategies.

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Notes

Notes

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