General Election 2020 - Inclusion Ireland...General Election 2020: A Manifesto for Disability Inclusion January 2020 This document is written in font 12 Verdana in line with Inclusion

General Election

2020:

A Manifesto for Disability

Inclusion

January 2020

This document is written in font 12 Verdana in line with Inclusion

Ireland plain English guidelines

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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.

The vision of Inclusion Ireland is that of people with an intellectual

disability living and participating in the community with equal rights.

Inclusion Ireland’s work is underpinned by the values of dignity, inclusion,

social justice, democracy and autonomy and we use the United Nations

Convention on the Rights of Persons with Disabilities (UNCRPD) to guide

our work.

Introduction

Ireland is holding a General Election on the 8th of February 2020. This

election gives people with disabilities, their families and interested

community members an opportunity to vote for candidates to represent

them in Dáil Éireann.

Elected representatives (TD’s) in this forthcoming election have an

opportunity to show that people with disabilities matter, and they will put

issues related to disability on their agenda when they are elected. This

paper sets out what actions elected representatives can take in relation to

disability under three key themes:

1. Ensuring the Rights and Participation of People with Disabilities

2. Supporting Community Inclusion

3. Addressing the Causes of Poverty

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1. Ensuring the Rights and Participation of People with

Disabilities

United Nations Convention on the Rights of Persons

with Disabilities

With the UNCRPD being ratified in 2018, Ireland is at an important

juncture where leadership must be shown by Government and all elected

representatives on its implementation. One important aspect of this

leadership is the implementation of the Convention across all Government

Departments. It is therefore important that the lead role is taken by the

Department of the Taoiseach in respect of the UNCRPD. Having the

responsibility placed within the Taoiseach’s Department will ensure that

issues related to disability will not be viewed separately but rather as the

responsibility of each Government Department.

Further to implementation of the Convention is the ratification at the

earliest opportunity of the Optional Protocol. The Optional Protocol is the

complementary enforcement mechanism to the UNCRPD.

The benefit of the Optional Protocol is that individuals or groups of

individuals can take complaints against their State for violations of their

rights under the UNCRPD. Organisations and individuals can lodge a

complaint which can then be followed up by an inquiry undertaken by the

UNCRPD Committee. The majority of European countries have ratified the

Optional Protocol.

Inclusion Ireland is asking all elected representatives to ensure that the

UNCRPD is implemented and that during their term in office, they vote

with the UNCRPD in mind. This year’s election is a significant opportunity

for elected representatives to show a commitment to promoting the rights

of people with disabilities and their families.

Inclusion Ireland Asks:

Ratify the Optional Protocol of the UNCRPD within one year of the

formation of the next Government

Locate the responsibility for implementation of the UNCRPD within

the Department of the Taoiseach

Departments Responsible:

The Department of the Taoiseach and All Government Departments

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Assisted Decision-Making

The Assisted Decision-Making (Capacity) Act 2015 was enacted at the end

of 2015. Full commencement is the next critical step to ensure that individuals with disabilities have the support to exercise decision-making

and choice in their lives.

The National Disability Inclusion Strategy committed to establishing the Decision Support Service (DSS) in 2017, to commence the Assisted

Decision-Making (Capacity) Act, to develop the associated Codes of Practice, and to promote and provide training in early 2018.

The establishment of the DSS is crucial to compliance with the UNCRPD,

in particular the right to legal capacity (Article 12). Although the DSS was established in October 2017, progress has been painfully slow and at

present there is no expected date for the DSS to be operational. In the

interim period, people are being made Wards of Court at alarming rates.

The urgent need for the DSS has been well established and it is a crucial element in complying with Article 12 of the UNCRPD. It is essential that

the Director is given adequate resources to execute her functions, including promoting public awareness, providing information, supervising

compliance by decision-making assistants, co-decision-makers, decision-making representatives and attorneys and carrying out investigations.


Adequately fund the Decision Support Service and fully implement

the Assisted Decision Making (Capacity) Act


The Department of Justice and Equality

Participation People with disabilities have the right to participate in public and political

life and in decisions that impact on their lives. However, they continue to face barriers to their full participation on an equal basis with others.

A lack of accessible information, negative or stereotyped attitudes, physical and environmental barriers all act as barriers to participation and

inclusion. To comply with Articles 291 and 302 of the UNCRPD, all public

1 Article 29, UNCRPD 2 Article 30, UNCRPD

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services must actively promote an environment that supports and enables participation.


The HSE must be funded to actively engage people with disabilities

in the planning, design, delivery and evaluation of services and

facilities and to fully implement the Plan for Effective Participation

The Department of Justice and Equality must consult and support

people with intellectual disabilities nationally in the development of

their Participation Framework

Train Departmental and public service staff to facilitate meaningful

consultation and engagement with people with disabilities. This

work should be done in line with the analysis and recommendations

in the HSE’s guidelines on the effective participation of people with

disabilities in planning and decision-making3


Department of Health

Department of Justice and Equality

2. Supporting Community

Inclusion

Housing and De-institutionalisation

One of the biggest issues facing people with intellectual disabilities in

relation to housing is the absence of joined-up services and the poor

3Plan for Effective Participation in Decision-Making (2018), Planning for Ordinary Lives in

Ordinary places

Quotes from people with lived experience

“We need to ratify the Optional Protocol right away”

“People with disabilities have rights and they should be respected”

“People shouldn’t be living in institutions anymore, that’s against what the

Convention says”

“Intellectual Disability people are seen as separate – invisible”

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collaboration between Government Departments regarding the availability

and co-ordinated delivery of houses and the support services required to

live independently.

Article 28 of the UNCRPD states that State parties must ensure there is

equal access by persons with disabilities to public housing programmes 4.

However, people with disabilities pinpoint the lack of available supports as

one of the biggest barriers to accessing housing, with people with

disabilities finding it difficult to access disability services unless they are in

a crisis situation.

A crisis could be the following:

(a) Where a person’s care needs change drastically and can’t be

managed at home

(b) Where a carer themselves becomes ill (e.g. Dementia or a

stroke)

(c) Where a carer passes away

If a person with an intellectual disability is not already in receipt of

residential support services, there is no clear pathway for a person to

attain support services from HSE Disability Services and gain access to

residential support services in their communities, irrespective of where

they are living.

As it stands, the HSE appears to have no budget for providing these

supports or pathway to them. There is also no waiting list recorded and

no stats gathered to inform future planning around housing and support

need.

Inclusion Ireland’s understanding of deinstitutionalisation and community

living is informed by the UNCRPD and the Committee on the Rights of

Persons with Disabilities General Comment no. 5 on living in the

community (Article 19)5. This acknowledges that deinstitutionalisation

involves more than just the closure of large, residential settings. It is

about removing institutional cultures and practices and ensuring that

accessible, inclusive housing, services and supports are available to

persons with disabilities in community settings.

It is clear that many services in Ireland still employ institutional practices

as defined by the UNCRPD; these have been highlighted in numerous

HIQA reports. Ireland’s policy of segregating people with disabilities was

due to end by 2018, but was watered down significantly in the 2016

program for government with the latest figures showing that 2,136

4 Article 28, UNCRPD 5 General Comment 5, UNCRPD.

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people with disabilities in Ireland remain living in large, institutional

settings6. In addition, over 5000 people are living in residential services,

many of which offer limited choice or genuine community inclusion, and

many thousands more living at home with ageing parents and limited

supports7.

Action needs to be taken to end this segregation. This goes beyond the

closure of institutions and involves putting in place the community-based

supports to ensure the full inclusion of people with disabilities in their

communities.

Inclusion Ireland asks:

The HSE must receive an adequate budget to address the issue of

support services for people with intellectual disabilities, ensure

there is a standardised process where people can apply to receive

these support services, and ensure that these applications are

recorded so that people can access housing in the community

Ring-fence 7% of local authority housing stock for people with

disabilities

Accelerate the de-congregation process so that institutional settings

are closed over the lifetime of the next government.


The Department of Housing, Planning and Local Government

The Department of Health

Ensure Accessibility

Persons with intellectual disabilities have a right to access public services in a manner that is understandable and accessible to them. As well as

their Public Sector Duty, public services have obligations under the Disability Act 2005 to ensure that their services are accessible to people

with disabilities in line with Article 9 of the UNCRPD8.

One example of this is Changing Places. Changing Places are different

from standard accessible toilets in that they provide extra space and facilities such as a hoist and a changing bench. These are features that

are not available in standard accessible toilets. Many parents are forced to change a family member on the floor of public toilets, and many people

with disabilities do not take an active part in their communities out of fear of having to use inadequate toilet facilities while they are out.

6 Time to Move on from Congregated Settings, A Strategy for Community Inclusion

Annual Progress Report (2018) 7 National Federation of Voluntary Service Providers (2019) 8 Article 9, UNCRPD

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In Ireland there are only 12 registered Changing Places toilets, with 8 in

Dublin. It is important that Part M of the Building Regulations is changed to make it mandatory for new public buildings to be ‘universally

designed’, thereby incorporating Changing Places facilities.

Accessibility should not be limited to physical access but should include accessible information as well, in line with Article 21 of the UNCRPD9.

People with intellectual disabilities should have access to accessible information in order to understand information and be included in their

communities. It is important that TD’s put an emphasis on this in their next term and that Government Departments ensure information is

provided that is accessible to all.


Implement the National Disability Authority ‘Code of Practice on

Accessibility of Public Services and Information provided by Public Bodies’ and the NDA Accessibility Toolkit.

Promote access and participation by people with disabilities in the

design and implementation of local services

Ring-fence funding for local authorities to install changing places in

public spaces and change Part M of the building regulations for new builds

Ensure that print and digital information about all services provided is available in accessible formats that are easy to read and

understand.


All Government Departments

Transport Accessibility

Article 910 of the United Nations Convention on the Rights of Persons with

Disabilities (UNCRPD) places an obligation on States Parties to ensure

persons with disabilities have access on an equal basis to transport,

information and services in both rural and urban areas. The UNCRPD

requires states parties to take measures to identify and eliminate barriers

to accessibility.


Ensure that future planning of transport services facilitates linkage

between different forms of transport

9 Article 21, UNCRPD 10 Article 9, UNCRPD

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Ensure that planning and design facilitates easy access to public transport transfer points by people with disabilities e.g. good

distribution of disabled parking spaces and appropriate ramps on paths

Ensure that the Health (Transport Support) Bill is passed to

establish a transport support scheme11


The Department of Transport, Tourism and Sport


Mental Health Services for People with Intellectual

Disabilities

The ratification of UNCRPD affirmed that all persons with a disability must

enjoy the same fundamental human rights and basic freedoms as those

without a disability.

A Vision for Change advocated for the development of 29 mental health

teams for adults with ID nationally and 15 for children in 2007, and these

teams would have 10 members each (290 team members in total for

adults and 150 for children)12. However, Mental Health Intellectual

Disability (MHID) services remain at 33% for Adults and 12% for children

of the level that was envisaged in A Vision for Change.

Families and people with intellectual disabilities tell us that they feel

invisible and poorly treated by the Mental Health services that they are

struggling to access any kind of service when they experience a mental

health crisis. Some areas have no MHID service or very limited service

and 47.5% of adults with an Intellectual Disability over 40 have an

emotional, nervous or psychiatric condition13. This is almost twice the rate

of mental health problems of the general population.

The HSE’s Mental Health Services has established a National MHID

Programme, and a key part of the programme’s work is the development

and roll out of a targeted funding plan to establish a minimum basic

service level. It is important that funding is immediately made available

for this programme so that all people with an intellectual disability will

have access to a basic minimum level of mental health service.

11 The two previous transport support schemes were discontinued in 2013 12 A Vision for Change (2006) 13 IDS, TILDA

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Make adequate funding available for the HSE National Mental Health

Intellectual Disability (MHID) Programme



3. Addressing the Causes of

Poverty

Cost of Disability and Poverty

The UNCRPD, is clear on the need to eradicate poverty for persons with

disabilities. Article 2814, which is concerned with an adequate standard of

living and social protection, requires States to “ensure access by persons

with disabilities…to social protection programmes and poverty reduction

programmes”.

In Ireland, people with disabilities are more than three times as likely to

experience consistent poverty as the general population15. Persons with a

disability experience much higher rates of deprivation which means they

14 Article 28, UNCRPD 15 CSO (2018). SILC


“People should be able to live in their own place in the community

“People like me should be able to access supports from the HSE to get

housing”

“There should be more accessible buildings for people with disabilities “

“It’s not easy for people to use buses and trains as they are now”

“Information should be in easy to read for people with intellectual

disabilities”

“Getting services is so hard - No-one wants us”

“I am not seen as a real person “

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go without some of the basic necessities for living. Specific measures to

address the cost of disability are necessary in order to reduce poverty

among persons with disabilities and these measures must assess and

address the extra costs that people face as well as increasing income.

Inclusion Ireland welcomed the commitment towards research on cost of

disability given by Minister Regina Doherty in 2018 and the subsequent

announcements that that this research will be finished and published by

quarter 2 of 2020. It is hoped that this research will help to determine

what the drivers of extra costs are for persons with disabilities in an Irish

context and how the extra costs can be addressed.

It is important that following the publication of this report, that action is

taken and that the recommendations from the report are implemented.

Inclusion Ireland believes that a cost of disability payment should be

available to all eligible persons with a disability, not just those in receipt

of a social protection payment, in acknowledgment of the extra costs

accrued by those who have a job.

An individually assessed, non-means tested benefit payment, similar in

nature to the Personal Independence Payment in the UK should be

introduced to support mobility and daily living.

Inclusion Ireland’s asks:

Complete the Indecon research and introduce a Cost of Disability

payment without delay


The Department of Employment Affairs and Social Protection

Education

Article 24 of the UNCRPD states that children with disabilities should be

educated in the general education system alongside their peers without disabilities. Inclusion Ireland believes that the next government must

invest in education and reform certain aspects of the current system to pave the way for children with disabilities to be fully included in the general education system.

If the next government is in any way serious about inclusive education for

children with disabilities, they must implement the now 16-year-old EPSEN Act 2004. This gives a child with a disability a right to an

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assessment of their education needs and access to an individual education plan that addresses any identified need.

At present there is 109,61316 children educated in a class of more than 30

pupils. These super-sized classes make for a difficult environment for children with intellectual disabilities in which to learn. The next government must ensure no child is educated in a super-sized class.

Initial teacher training must contain a more robust element on special

education so new teachers have the necessary skills to teach all children. Teachers tell us that they do not have the necessary training or time to

plan for and teach children with disabilities effectively.17 The next government must introduce mandatory Continuing Professional

Development (CPD) to ensure all existing teachers requiring upskilling can avail of training that will enhance their skills to teach children with disabilities in their classes.

Children and schools have significant difficulty in accessing the various

therapy services such as speech and language therapy or occupational therapy that will improve a child’s learning experience. Many children

languish years on waiting lists missing out on the golden opportunity for early intervention.18

Inclusion Ireland’s asks:

Publish a plan to fully commence the EPSEN Act within the lifetime of the next government.

Review initial teacher training to ensure all new teachers have the necessary skills to teach all children with disabilities. Introduce

mandatory CPD for existing teachers who do not have a

qualification or recent CPD in special education. Invest in teaching posts to ensure no child is educated in a super-

sized class. Over the life of the next government, 60 therapists must be

recruited each year (total, 300).


The Department of Education and Skills


Employment Article 27 of the UNCRPD affirms the right of persons with disabilities to work, on an equal basis with others. People with disabilities experience

16 CSO, Education Statistics Database, 2019. 17 Achieving inclusive schools: the teachers perspective, April 2019, ASTI 18 Health Services Performance Profile July - September 2019 Quarterly Report, HSE

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multiple barriers to accessing employment, including financial barriers, negative societal attitudes, environmental barriers, the education system

and lack of opportunity.

Just 36% of people with disabilities of working age and 17% of people with an intellectual disability are in employment19 and this indicates a

societal problem that needs urgent addressing using the range of strategies outlined in the Comprehensive Employment Strategy for People

with Disabilities (CES).

The National Disability Inclusion Strategy includes a target to increase the public sector employment target of persons with disabilities from 3% to

6% by 2024. The National Disability Authority publishes an annual report on public sector compliance. The most recent data available show that in

2017, public bodies reported that 3.5% of employees working in the

public sector are people with disabilities20.

The Comprehensive Employment Strategy also sets out the value of individualised support from a job coach in supporting people with

intellectual disabilities to find and keep jobs. A job coach, as described by the CES, works to prepare a person for employment, makes links with

employers, and supports the person in the workplace in settling in and managing tasks21.

Job coaches are currently available through the Employability programme.

However, from our advocacy work, Inclusion Ireland is aware of people with intellectual disabilities who have not been able to access

Employability supports because they are not ‘job ready’.

The recently launched Ability Programme funds projects that are aimed at

supporting young people with disabilities who are not currently job ready through the provision of a range of person-centred supports. The projects

should be evaluated to assess what has worked and what hasn’t and those projects that have demonstrated positive outcomes for people with

intellectual disabilities should be mainstreamed.

It is important that the pilot projects are not an end in themselves but translate into real jobs for persons with intellectual disabilities, with good

support when transitioning into the open labour market.

19 CSO (2017). Census 2016. 20 NDA (2019). 2017 Report on Compliance with Part 5 of the Disability Act on the

Employment of People with Disabilities in the Public Sector 21 Government of Ireland (2015). Comprehensive Employment Strategy for People with

Disabilities 2015-2024

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Fully implement the Comprehensive Employment Strategy for

persons with disabilities Ensure people with disabilities are given the right supports to enter

and maintain employment, and that successful supported employment programmes are rolled out nationally

Ensure that workforce planning and recruitment works towards a target whereby 6% of its whole time equivalent workforce across all

employment grades will be people with disabilities Departments Responsible:

The Department of Justice and Equality

For further information, contact;

Robert Murtagh, Advocacy (Policy) Coordinator, Inclusion Ireland.

01 855 98 91 / [email protected]


“People need a Cost of Disability payment, because DA just isn’t

enough”

People with disabilities should be supported in employment and get

equal pay. They shouldn’t be discriminated against”

“People should be supported to go to college”

“Everyone has a right to an equal education”

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Inclusion Ireland receives support from the Scheme to Support National

Organisations (SSNO) for this work. The SSNO is government funding

administered by Pobal

Documents

General Election 2020 - Inclusion Ireland...General Election 2020: A Manifesto for Disability Inclusion January 2020 This document is written in font 12 Verdana in line with Inclusion