Source document: https://docs-lawep.s3.us-east-2.amazonaws.com/1697750378181.pdf (Ireland)
Submission to the Select Committee on Budgetary Oversight On disability funding and disability proofing Budget 2019 April 2018 This document is written in font 12 Verdana in line with Inclusion Ireland plain English guidelines.

1 1.

About Inclusion Ireland Established in 1961, Inclusion Ireland is a national, rights based advocacy organisation that works to promote the rights of people with an intellectual disability.

Inclusion Ireland uses a human rights-based approach to its work.
This recognises persons with an intellectual disability as rights holders with entitlements, and corresponding duty bearers and their obligations.

Inclusion Ireland seeks to strengthen the capacities of persons with an intellectual disability to make their claims and of duty bearers to meet their obligations.
The vision of Inclusion Ireland is that of people with an intellectual disability living and participating in the community with equal rights as citizens, to live the life of their choice to their fullest potential.

Inclusion Ireland’s work is underpinned by the values of dignity, inclusion, social justice, democracy and autonomy.

2.

Introduction Inclusion Ireland welcomes the opportunity to make a submission to the Committee on the issue of disability funding and disability proofing Budget 2018.
Inclusion Ireland also welcomes the work that the Committee have been doing with regard to equality budgeting and the positive steps that have been taken, such as the establishment of a Parliamentary Budget Office and the publication of an equality budgeting policy paper by the Department of Public Expenditure and Reform in Budget 2018.
People with disabilities experience inequalities across a range of areas from poverty, employment, education, health and wellbeing to housing, social inclusion, parenting and access to justice.

 They are more likely be to living in poverty and deprivation than non-disabled people.

 They are more likely to experience poorer educational outcomes (16% of people with disabilities finish school at primary level and 22% at secondary level compared to 5% and 15% of the general population)1.

1 CSO (2011).
1 CSO (2011).

Census 2011.

Figures cited are for people aged 15-49.

2  They are less likely to have the financial security and sense of inclusion that having a job brings (17% of working age people with an intellectual disability in employment in 2016 compared to 66% of the general population)2.

 Parents with an intellectual disability are more likely to have their children taken into care and less likely to receive parenting supports3.
Equality proofing budgetary decisions provides a way to address some of these inequalities.

This paper looks at three issues: 1.

Poverty and economic inequality experienced by people with disabilities 2.

How the current budget for disability services can work better to meet equality goals 3.

Advancing the process of disability proofing budgets more generally 3.
Poverty and disability Inclusion Ireland believes in a fair and more equal distribution of resources and that poverty and social exclusion among persons with intellectual disabilities needs urgent addressing.

Consistent poverty among persons with disabilities is at 26% compared to 8% among the general population4 and more than half of adults with a disability experience multiple quality of life challenges – more than any other societal group5.
Economic costs associated with having a disability mean that people with disabilities are more likely to experience poverty and social exclusion than others.

There are two elements to cost of disability.

Firstly, people with disabilities are less likely to attend further education or be in employment.

If they do have a job, they are likely to have lower earnings.

This ‘earnings handicap’ is the indirect cost of disability.

2 CSO (2016).

Census 2016.


Health, disability and carers 3 See Coulter, C. reports for Child Care Law Reporting Project cited in Inclusion Ireland (2018).

Submission to DCYA on review of the Child Care Act.

4 CSO (2017).
The Survey on Income and Living Conditions 2016 5 Department of Social Protection and the ESRI report entitled ‘Social Risk and Social Class Patterns in Poverty and Quality of Life in Ireland’ 3 Secondly, people with disabilities generally have extra costs associated with having a disability; costs such as home adaptations, higher costs for energy and transport, higher medical costs and disability aids as well as the costs associated with buying additional tickets for social events where a person requires support to attend.
These are the direct costs associated with disability.

In an Irish context, the direct economic cost of disability has been estimated at between 35.4% and 54.5% of income or between €207- €276 per week for the average disabled household6,7.

This varies by severity of disability and number of people with disabilities in the household.
Addressing cost of disability is an equality issue - people with disabilities have lower incomes than the population as a whole and have to spend more of their income to achieve the same standard of living as everyone else.
3.1 Addressing poverty be through equality budgeting 3.1.1 Better data As the Committee is aware from its engagement to date with other stakeholders, the lack of data and disaggregated data in particular, is a significant barrier to assessing the impact of budgetary measures on people with disabilities.
Although poverty is one of the areas in which data is available, standard measurements of poverty based on income underestimate poverty among people with disabilities since for a given income level, people with disabilities have additional costs not taken into account.

Having accurate data on the number of people with disabilities experiencing poverty and the level of poverty experienced is key to implementing effective policies on cost of disability.
Introducing disability-adjusted poverty and inequality estimates and equivalence scales would increase the accuracy of this data.

This involves 6 This is determined using a standard of living approach.

Assumption is that a household’s income determines its standard of living.

For a given income, a disabled household must spend more on disability related costs.
The figures quoted are an estimate of the additional income that would be required for households to attain the same standard of living as the equivalent non-disabled household.

7 Cullinan, J.

& Lyons, S. (2015).

The private economic costs of adult disability.

In Cullinan, Lyons & Nolan, the economics of disability.

Manchester: Manchester University Press.

4 adjusting downwards, the incomes of households/individuals with specific needs.
3.1.2 Implement a cost of disability payment Allowing for the problems with measurement, there is still much that can be done to ensure budgetary decisions decrease the income inequality experienced by persons with disabilities.

One such action is the implementation of a cost of disability payment.

A cost of disability payment is a cash payment to people with disabilities to address the extra, unavoidable costs faced by people with disabilities in their daily lives.
A cost of disability payment is not limited to people in receipt of social transfers but should be open to all people with disabilities to make a claim8.

Unfortunately, the language of ‘cost of disability’ is creeping into discourse as meaning an extra few euro in social welfare payments, with many of the political parties ahead of Election 2016 making commitments to increase social welfare as a measure to address the ‘cost of disability’.
This step would not address the cost of disability for many disabled people.

A cost of disability payment was first recommended by the Commission on the Status of People with Disabilities in 1996.
In 2004 the NDA called for the introduction of a cost of disability payment, arguing that: “A cost of disability payment would help equalise the cost of living experienced by people with disabilities, whether they were in employment or not.” As well as a cost of disability payment, the Commission also recommended a Disability Pension to compensate for the reduced earning capacity of people with disabilities.
Some countries, such as the Sweden, New Zealand and the UK have introduced cost of disability payments.

The Personal Independence Payment (PIP) in the UK is one example.

The rate a person receives depends on their support needs.

It is made up of two parts – a daily living part and a mobility part.

Whether a person gets one or both of these and how much they get depends on how severely their condition affects them.

Rates range from £22 to £144.10 per week.


People can apply for a PIP whether they are working or not – it is not means tested and not taxable.

8 Fanagan, S. & Conroy, P. (2001).

A reflection document on a cost of disability payment.

Dublin: Ralaheen Ltd & The Forum of People with Disabilities.
5 The CRPD Committee commented on the UK Personal Independence Payment in its country report and noted that the predecessor lacked consistency in the way it supported disabled people with similar support needs and that the PIP was a more transparent and sustainable benefit that has a more objective assessment of individual need.

Individualisation is a key component of an independence payment.
3.1.3 Social transfers and taxation Aside from income supports such as Disability Allowance, the state provides direct cash payments to some people with disabilities to allay some of the extra costs they or their families face.

These include Domiciliary Care Allowance, the Carer Support Grant and the Home Adaptation Grant.

Access to most state supports is dependent on income or some other criteria being met.

People with disabilities often cite transport as a significant extra cost.
However, in 2013 the Government closed the Mobility Allowance and Motorised Transport Grant schemes to new applicants and a new scheme has not been forthcoming as yet.

Although VAT refunds can be made on some aids and appliances used by people with disabilities, some goods and services remain beyond reach because of up-front expense or do not qualify for refunds.

In addition, some items, classified as ’luxuries’, such as adult incontinence pads, are in reality medically needed.
Equality proofing budgetary decisions might include exempting the VAT on such items, the cost of which impacts more on disabled and/or elderly people.

3.1.4 Supports in kind At a broader level, making society less disabling will reduce poverty among people with disabilities.
Supporting people with disabilities to access a decent job and affordable housing, improving the accessibility of public transport and increasing access to assistive technologies would all improve the standard of living of people with disabilities.

Many countries provide ‘supports in kind’ to improve access to healthcare, transport and assistive technology for people with disabilities.
For example, access to free or highly subsidised healthcare is an important consideration for people with disabilities given that they experience poorer health outcomes in general.

Many countries offer free or highly subsidised healthcare.

Out of-pocket contributions as a 6 percentage of total healthcare financing are 7% in France and 10% in the UK, compared to 17% in Ireland9.

Some countries, such as Finland, Canada, Germany, France and Luxembourg offer access to social health insurance schemes10.
In the Netherlands assistive technology is provided free of charge in most cases.

In the UK, the NHS provides disability aids for free, without a means test although some aids provided through local authorities may be subject to a means test11.

Many countries provide assistance to cover the costs of transport.

Unlike Ireland, in most jurisdictions, this is not limited to people in receipt of welfare payments and is not means tested12.

4.
4.

Reforming the current disability spend Services for people with disabilities are funded mainly through the provision of block grants to large service providers.

These grants amounted to around €1.7bn in 2017.

With around three quarters of the total budget allocated to residential and day services, much of this is spent on models of service provision that do not support disability policy goals of community inclusion, choice, control or independence for people with disabilities.
A relatively small amount of funding is allocated to supports to help people live independently, such as Personal Assistance, home support or disability aids and appliances.

Many people with disabilities, families, service providers and expert bodies, have expressed dissatisfaction with how disability services and funded and provided.

The need for reform in disability funding has also been clearly identified in various policy documents.
In 2012, the Department of Health published an extensive report on the effectiveness and efficiency of disability services in Ireland.

The Value for Money and Policy Review of Disability Services found that despite ever greater sums being allocated to disability services, in terms of outcomes, 9 OECD (2015).

Health at a glance 2015.

Chart 9.8 10 Fitzgerald, E. (2016).


Making Work Pay for People with Disabilities – a Review of the International Evidence Background paper to Report of the ‘Make Work Pay’ group.

Department of Social Protection.


11 Ibid 12 Ibid 7 the current system of funding does not support choice, control and independence for individuals.13 The need to rethink how services are funded and provided is also outlined in ‘Future Health’, the policy framework for the reform of the health service (2012), which contains a commitment to establish a Healthcare Commissioning Agency.
The Public Service Reform Plan 2014-2016 includes a commitment to change the funding model for the provision of human, social and community services and to move to an outcomes-oriented model.

HIQA have called for the introduction of a commissioning model as a way to address “ineffective use of public funds, service inefficiencies, inadequate planning and poor oversight of service performance” in health and social care services14.
Most recently, the Committee on the Future of Healthcare, in its Sláintecare report, expressed the view that the use of funding for residential care due to the absence of appropriate accommodation and supports in the community “has a negative impact on the wellbeing of people with a disability and militates against independent living…it is also an inefficient use of public money”15.
Disability service providers themselves have acknowledged that much more could be done to promote inclusion, choice and independence from the current disability spend.
In 2015, Inclusion Ireland and the CEO’s of twenty-two disability service providers, who between them receive in excess of €500m in exchequer funding, joined Inclusion Ireland in calling for a percentage of the funding they receive under their annual service agreement with the HSE to be ring fenced for innovative, person-centred community-based models of provision.
We wrote to the then Ministers for Health, Leo Varadkar, Public Expenditure & Reform, Brendan Howlin, Minister of State, Kathleen Lynch as well as Director General of HSE, Tony O’Brien and National Director HSE, Pat Healy.

Inclusion Ireland and the disability organisations asked for an explicit requirement within the Service Arrangement framework to annually grow 13 Department of Health (2012).

Value for money and policy review of disability services 14 Hiqa (2017).
Submission from Hiqa to Oireachtas Committee on Future of Healthcare 15 Committee on Future of Healthcare (2017).

Slaintecare report.

8 the proportion of individualised, person-centred, community-based arrangements.

However, no such action was taken.

It is not the purpose of this paper to seek additional funding in Budget 2019 for disability supports.
However, ring-fencing a portion of the existing disability spend for personalised supports is one example where reforming current practice rather can work better across a range of desired outcomes, such as increasing social inclusion and providing greater choice and independence for people with disabilities.

5.

How can budgets be disability proofed?


Sections 3 and 4 outline some measures that can be taken to address the inequalities experienced by people with disabilities in the areas of poverty and inclusion in the community.

This section makes some recommendations as to how the process of equality proofing budgets might be advanced more broadly.

1.

Involve people with disabilities Any process of equality proofing should involve the people concerned, rather than just representative organisations.
In our consultation with people with disabilities as part of our Budget 2018 campaign, this emerged as a key issue.

Participants told us: “There needs to be focus groups of people who are all affected in different ways by disability to look at the real cost to people's lives the budget can have.16” “It should also ensure there is a panel in charge of…equality proofing...consisting of at least 60% people with disabilities17.” 2.
Build on the Public Sector Duty It is important that there is a whole of government commitment to equality proofing.

All government departments should have the knowledge and skills necessary to equality proof policy proposals in their relevant departments, with monitoring and oversight provided by the 16 Inclusion Ireland (2017).

Submission to Department of Public Expenditure and Reform on Budget 2018 17 Ibid 9 Parliamentary Budget Office and the Oireachtas Committee on Budgetary Oversight.
While many ‘grants’ from departments have ‘non-discrimination’ clauses, this is not the same as proactively ensuring equality measures and is also not consistent across all departments.

As well as ensuring that budgetary decisions don’t impact more negatively on one social group or another, each department has a broader duty to develop policies that promote and support rights and equality and to ensure that government expenditure promotes inclusion.
All government departments should include reference to how they plan to meet their public sector duty in their departmental strategy statements.

3.

Advance the work of the Parliamentary Budget Office The Parliamentary Budget Office should seek to engage experts in disability equality to assist with the development of key outcomes and indicators and determine what data is needed to measure progress on these.

The PBO should also publish an equality statement alongside Budget 2018 6.
Conclusion It is clear that people with disabilities experience inequality across many aspects of their lives.

Disability proofing budgetary decisions provides an opportunity to redress the balance and to ensure that budgetary and policy decisions act to promote equality and rights rather than entrenching inequality.

Equality proofing budgetary and policy decisions poses a challenge to government departments and much work needs to be done on gathering data and developing tools to support the process.
However, the complexity of the process should not act as an excuse to delay action.

There are some concrete steps that can be taken in Budget 2019.

Inclusion Ireland respectively asks the Committee to consider the recommendations outlined in this paper as a contribution to advancing equality budgeting for people with disabilities in Budget 2019.

10 For more information, contact Inclusion Ireland at: Email: info@inclusionireland.ie Phone: 01 8559891 11