Building Systems to Reduce Disabling Experiences for Enhanced Equality

BUILDING SYSTEMS FOR REMOVING DISABLING EXPERIENCES W A R R E N F O R S T E R W A R R E N F O R S T E R B A R R I S T E R A N D R E S E A R C H E R B A R R I S T E R A N D R E S E A R C H E R 2 0 1 7 N E W Z E A L A N D L A W F O U N D A T I O N 2 0 1 7 N E W Z E A L A N D L A W F O U N D A T I O N I N T E R N A T I O N A L R E S E A R C H F E L L O W I N T E R N A T I O N A L R E S E A R C H F E L L O W N E W Z E A L A N D D I S A B I L I T Y N E W Z E A L A N D D I S A B I L I T Y S U P P O R T N E T W O R K S U P P O R T N E T W O R K 2 4 S E P T E M B E R 2 0 2 0 2 4 S E P T E M B E R 2 0 2 0 W W W . F O R S T E R . C O . N Z W W W . F O R S T E R . C O . N Z

STRUCTURE OF PRESENTATION Reducing Disabling Experiences Reducing Disabling Experiences Legal mechanisms (anti Legal mechanisms (anti- -discrimination, systemic barrier removal and rights based) discrimination, systemic barrier removal and rights based) How these work in practice (housing) How these work in practice (housing) Implementing a person Implementing a person- -centred centred rights rights- -based system that is enforceable based system that is enforceable A way forward A way forward Where to from here Where to from here Thank you to the New Zealand Disability Support Network Thank you to the New Zealand Disability Support Network

REDUCING DISABLING EXPERIENCES

DISABLING EXPERIENCES Disabling experiences are the negative experiences of Disabling experiences are the negative experiences of persons with impairment when we are impeded from full and persons with impairment when we are impeded from full and effective participation in society on an equal basis with effective participation in society on an equal basis with others. This can be contrasted to the wider idea of the others. This can be contrasted to the wider idea of the disability experience that includes ideas of identify and disability experience that includes ideas of identify and belonging to a community. belonging to a community. The key policy goal for the future must be to reduce and The key policy goal for the future must be to reduce and ultimately remove disabling experiences through a series of ultimately remove disabling experiences through a series of legislative systems that are co legislative systems that are co- -ordinated across our society ordinated across our society

THE THREE SYSTEMS FOR REDUCING DISABLING EXPERIENCES An anti An anti- -discrimination system (already in existence) discrimination system (already in existence) A barrier identification and removal system (currently in A barrier identification and removal system (currently in development) development) A rights A rights- -based system for all disabled people (the dormant volcano): based system for all disabled people (the dormant volcano): healthcare, personal accommodations and supports, income support, habilitation and rehabilitation.

ANTI-DISCRIMINATION SYSTEM The existence of discrimination and failure to provide reasonable The existence of discrimination and failure to provide reasonable accommodations requires action from another individual or organisation to accommodations requires action from another individual or organisation to remove the disabling experience by: remove the disabling experience by: stopping the discrimination or stopping the discrimination or providing the reasonable accommodation and providing the reasonable accommodation and if harm is suffered as a result of the discrimination, then this might if harm is suffered as a result of the discrimination, then this might be compensated. be compensated. This system puts the disabled person in direct conflict with the person who This system puts the disabled person in direct conflict with the person who they are trying to influence and causes them to fight about whether the they are trying to influence and causes them to fight about whether the accommodation is reasonable . accommodation is reasonable . This process is not user friendly and its largely ineffective in addressing both This process is not user friendly and its largely ineffective in addressing both individual cases and systemic issues. individual cases and systemic issues. This system urgently needs review and reform. This system urgently needs review and reform.

BARRIER IDENTIFICATION AND REMOVAL SYSTEM Barriers are: Barriers are: negative features of an environment typically cause disabling negative features of an environment typically cause disabling experience for many of our people with impairments. In this experience for many of our people with impairments. In this context, the reason that the feature is negative is because it context, the reason that the feature is negative is because it interacts with a person s impairments to prevent people from full interacts with a person s impairments to prevent people from full and effective participation in society. and effective participation in society. The legislative framework model for identifying and removing barriers The legislative framework model for identifying and removing barriers has been designed in another research project which complements my has been designed in another research project which complements my international research fellowship. international research fellowship.

A DESIGN FOR EFFECTIVE ACCESSIBILITY LEGISLATION To remove accessibility barriers, we have developed legislative framework that To remove accessibility barriers, we have developed legislative framework that includes: includes: an Act, an Act, a regulator, a regulator, a tribunal, a tribunal, accessibility standards, and accessibility standards, and a way to notify the regulator of barriers. a way to notify the regulator of barriers. The framework would meet New Zealand s obligations under the Convention on The framework would meet New Zealand s obligations under the Convention on the Rights of Persons with Disabilities and the Treaty of Waitangi ( the Rights of Persons with Disabilities and the Treaty of Waitangi (Te Waitangi). Waitangi). Te Tiriti Tiriti o o Making New Zealand Accessible: a design for effective accessibility legislation (draft currently out for consultation)

A RIGHTS BASED SYSTEM: PERSONALISED ACCOMMODATIONS, SUPPORTS AND HEALTHCARE Personalised accommodations, supports and healthcare Personalised accommodations, supports and healthcare are those provided by the state through a centralised are those provided by the state through a centralised administrative system for people with impairments. These administrative system for people with impairments. These include income, social and habilitative and rehabilitative include income, social and habilitative and rehabilitative supports, and healthcare. supports, and healthcare. Modification, adjustments and support in a particular case, Modification, adjustments and support in a particular case, to ensure to persons with impairment the enjoyment or to ensure to persons with impairment the enjoyment or exercise on an equal basis with others of all human rights exercise on an equal basis with others of all human rights and fundamental freedoms. and fundamental freedoms.

A RIGHTS BASED SYSTEM (CONTINUED) These are provided through a rights based framework must be These are provided through a rights based framework must be provided in a person provided in a person- -centric manner and this report focuses centric manner and this report focuses primarily on developing a system to do this and then primarily on developing a system to do this and then implementing this system over the next 20 years. implementing this system over the next 20 years. The idea behind this is that certain requirements in the The idea behind this is that certain requirements in the Convention on the Rights of Persons with Disabilities must be Convention on the Rights of Persons with Disabilities must be provided by the New Zealand to our people in a way that can be provided by the New Zealand to our people in a way that can be enforced against the government. enforced against the government.

EXAMPLE OF WHY WE NEED SYSTEMS Many of our people need to live in an accessible home. Many of our people need to live in an accessible home. Disabling experiences impact on people lives because of Disabling experiences impact on people lives because of housing. housing. The Government was asked by the UN to provide the following to The Government was asked by the UN to provide the following to the UN: the UN: Strategies and resources allocated to ensure accessible housing for persons with disabilities that are affordable for all persons with disabilities, in all housing sectors, and legal requirements and duties of accessibility for private constructors in the development of housing projects;

GOVERNMENTS RESPONSE TO UN We do not have any Government strategies to ensure that there are accessible and We do not have any Government strategies to ensure that there are accessible and affordable houses for disabled people. affordable houses for disabled people. There are no legal requirements for private constructors to build accessible housing in There are no legal requirements for private constructors to build accessible housing in housing projects. housing projects. The Government can proactively source accessible accommodation when providing The Government can proactively source accessible accommodation when providing short short- -term accommodation along with tailored social support for people in immediate term accommodation along with tailored social support for people in immediate need. need. Housing NZ Corporation provides state housing. They require houses they build to meet Housing NZ Corporation provides state housing. They require houses they build to meet basic accessibility standards including wide hallways wherever possible. These houses basic accessibility standards including wide hallways wherever possible. These houses need to be easily modified for a range of user needs in line with universal design need to be easily modified for a range of user needs in line with universal design principles. As the Government builds and upgrades more public houses, we are principles. As the Government builds and upgrades more public houses, we are considering how to ensure that these provide suitable environments for disabled considering how to ensure that these provide suitable environments for disabled people. people. Housing NZ Corporation is a Crown agent that provides housing services for New Housing NZ Corporation is a Crown agent that provides housing services for New Zealanders in need. Zealanders in need. Government response to list of issues

INDEPENDENT MONITORING MECHANISM Accessible housing is critical for disabled people to be healthy, safe and secure Accessible housing is critical for disabled people to be healthy, safe and secure and to participate in their communities. There are simply not enough suitable and to participate in their communities. There are simply not enough suitable homes available for the people who need them. homes available for the people who need them. The recommendation from the IMM: implement legislation requiring all newly built The recommendation from the IMM: implement legislation requiring all newly built housing to conform to universal design standards housing to conform to universal design standards IMM Making Disability Rights Real 2020

REMOVING DISABLING EXPERIENCES REQUIRES: 1. Accessible housing to be available in the rental market (Accessibility 1. Accessible housing to be available in the rental market (Accessibility System) System) 2. A person must have enough money to enter into a residential 2. A person must have enough money to enter into a residential tenancy agreement (rights based system for income support) tenancy agreement (rights based system for income support) 3. A landlord must not discriminate (anti 3. A landlord must not discriminate (anti- -discrimination system) and provide an accessible application process (accessibility system). provide an accessible application process (accessibility system). 4. Any modification for the house are either reasonable 4. Any modification for the house are either reasonable accommodations (landlord) or provided by the rights based system accommodations (landlord) or provided by the rights based system (supports and (supports and personalised personalised accommodations) accommodations) 5. Any barriers that exist in this system must be identified and 5. Any barriers that exist in this system must be identified and removed by through the accessibility system. removed by through the accessibility system. discrimination system) and

THREE SYSTEMS MUST WORK IN UNISON TO REMOVE DISABLING EXPERIENCES Anti Anti- -discrimination and/or accessibility system alone discrimination and/or accessibility system alone will not remove disabling experiences. will not remove disabling experiences. A rights A rights- -based system must include healthcare, social based system must include healthcare, social support, income support, rehabilitation and support, income support, rehabilitation and rehabilitation. rehabilitation. There must be coordination across the system and the There must be coordination across the system and the regulator in the barrier identification and removal regulator in the barrier identification and removal system has a critical role. system has a critical role.

IMPLEMENTING A PERSON-CENTRED RIGHTS BASED SYSTEM THAT IS ENFORCEABLE AGAINST THE GOVERNMENT

PREVIOUS PRESENTATIONS TO NZDSN Many have heard me speak over the past few years about a principled based expansion of the ACC system to cover all of our people with impairments: 2018 Conference: Towards an inclusive disability system that does not discriminate based on cause 2018 AGM 2019 Conference: A model for an integrated system for supporting our people with impairment and reducing the disability experience in Aotearoa New Zealand The idea and the vision hasn t changed very much but the work has focused on how to bring this to life.

MY RECOMMENDED WAY FORWARD 1. Create the interim structure for expansion (2021/2022) 2. Build relationships with stakeholders (2021/2022) 3. Build funding model (2021/2022) 4. Plan Transition of existing systems (2022 2026) Administrative model for service delivery Transitional plan to transition current systems to future systems 5. Debate and plan the expansion roadmap (2022 2026) By Impairment or age By Pillar (health, social, income and rehabilitation) Geographic location Individual choice A rights based social investment approach 6. Determine policy settings (2023 2026) 7. Build capacity (2023-2030)

FIRST WE MUST REACH AGREE ON THE VISION The vision: The vision: In the future we will have a universal integrated system for supporting our people with impairment and reducing the disability experienced by our people in Aotearoa, New Zealand. Who needs to agree? Who needs to agree? New Zealander s leaders in all levels of government, in iwi, in disabled persons organisations, in politics and in business must decide on whether they agree with the vision and whether they are committed to achieving it.

THE DORMANT VOLCANO The ACC/Disability Space is seen by some politicians and The ACC/Disability Space is seen by some politicians and their advisors as a dormant volcano . their advisors as a dormant volcano . Politicians say that our people are not asking for this to be Politicians say that our people are not asking for this to be done and they are implying people don t want it. done and they are implying people don t want it. It is perceived to be politically unpopular. It is perceived to be politically unpopular. Until the volcano erupts and people demand change then Until the volcano erupts and people demand change then politicians will let the volcano sit dormant. politicians will let the volcano sit dormant.

A RECENT VALEDICTORY SPEECH Some thoughts of someone with the luxury of not seeking reelection. Some thoughts of someone with the luxury of not seeking reelection. ACC is a taonga and we don t know how lucky we are to have it. ACC is a taonga and we don t know how lucky we are to have it. But we politicians have decided that ACC should be limited to covering But we politicians have decided that ACC should be limited to covering injury whereas illness is covered by the health system. injury whereas illness is covered by the health system. I will never forget meeting with a constituent who lost three limbs to I will never forget meeting with a constituent who lost three limbs to meningitis and she rightly pointed out that if she lost those limbs in a meningitis and she rightly pointed out that if she lost those limbs in a car accident, she would have been considerable better off financially car accident, she would have been considerable better off financially and would have received superior treatment and support. and would have received superior treatment and support. That is impossible to justify. That is impossible to justify. Health should also be run as a social insurance scheme and New Health should also be run as a social insurance scheme and New Zealanders should expect the same support whether they are injured or Zealanders should expect the same support whether they are injured or ill. ill. Hon Iain Lees-Galloway, August 2020

WHERE TO FROM HERE My report will be launched in the next few months. My report will be launched in the next few months. The disability community and the people who support that The disability community and the people who support that community must decide if they want to support this future system. community must decide if they want to support this future system. The political parties will not make any commitments prior to the The political parties will not make any commitments prior to the election (except the Greens who have committed to the key ideas). election (except the Greens who have committed to the key ideas). There is a chance that this is included in negotiations as the next There is a chance that this is included in negotiations as the next government is formed and if not then nothing will happen until the government is formed and if not then nothing will happen until the dormant volcano erupts. dormant volcano erupts.

THANK YOU TO THE NZDSN Thank you for your support over the past few years. I have done my best to Thank you for your support over the past few years. I have done my best to progress this. Now others must decide whether or not they want this system and progress this. Now others must decide whether or not they want this system and whether they are willing to fight for it. whether they are willing to fight for it. I can be involved and help in the future, I can help by building a legislative model, I can be involved and help in the future, I can help by building a legislative model, but the next step is for the disability community to decide whether they want this but the next step is for the disability community to decide whether they want this system and what action they are prepared to take to demand this from their system and what action they are prepared to take to demand this from their politicians. politicians. warren@forster.co.nz warren@forster.co.nz