Session on Disability Policy

In this week’s Strategies for Change session, we had James Crawley (Policy Officer with ILMI) talking to us about disability policy. He told us that central to the way ILMI work is to make sure that policy decisions that impact on the lives of disabled people have to be directly influenced by those whose lives are directly affected. 

Policy concerning disability over the past 20 years has centered on supporting disabled people to lead full and independent lives, participate in work and society, and be free from discrimination – see Towards 2016 section 33 http://www.fedvol.ie/_fileupload/Next%20Steps/Towards2016PartnershipAgreement.pdf and to maximise their potential – see policy review document – http://www.fedvol.ie/_fileupload/Next%20Steps/ERG_Disability_Policy_Review_Final.pdf. It is also about modernising the allocation of disability funding – shifting towards person-centredness and personalised budgets – see Sláintecare – https://assets.gov.ie/9914/3b6c2faf7ba34bb1a0e854cfa3f9b5ea.pdf – giving disabled people choice and control over the supports that they need to live good lives. 

Sadly disability policy and practice are worlds apart. The medical model of disability is very much alive and kicking despite all of our policy documents endorsing the right to live like everyone else.

Our session focused on Housing and Personal Assistance policy as these 2 things are core to living the Philosophy of Independent Living. 

National Housing Strategy for Persons with a Disability

In 2010 Ireland developed a National Housing Strategy for Persons with a Disability (NHSPWD) (2011-16). This was against a backdrop of several policies recommending deinstitutionalisation, personalisation, and the equal rights of disabled people to live in the community, with choice and control equal to others – Article 19 – see – https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities/article-19-living-independently-and-being-included-in-the-community.html

The Strategy was the Government’s approach to address the housing needs of disabled people specifically. A key objective was to provide mainstream access to the full choice of housing options, as appropriate to disabled people. The vision and aims were to achieve a coordinated and integrated approach to meeting the housing needs of disabled people at a local level. This policy is currently under review, and ILMI is part of this process. As a DPO, ILMI will ensure that the lived experience is included in developing this Strategy.

Housing and Disability Steering Groups

There are now Housing and Disability Steering Groups (HDSGs) in all local authority areas. These groups are chaired by the Directors of Housing, with its membership made up of HSE personal and disability representatives. Many of these groups DO NOT have active participation from disabled people, and most of the discussions is driven by those with a charity / medical view of disability – this needs to stop! 

James tasked us to Imagine we were the Minister for Housing and write a public apology to the disabled people of Ireland on the failures of the state. I’m Sorry…

Other comments from people included:

  • It’s a “catch 22 situation when it comes to being on the housing list. There needs to be more collaboration between the county councils and support services for disabled people. You can’t get a house without having the supports, and you can’t get the supports if you have not been offered the house; a support package needs to be put in place; it needs an interagency approach.”
  • “Personal Assistant Services needs to become a right.”
  • More disabled people need to “use the National Advocacy Service to get what we want” – see https://advocacy.ie for more information 
  • Giving some “disabled people a house is like giving them a car to drive without the keys.” 
  • “All disabled people regardless of age should have a right to an assessment of need” – it needs legislation backing and funding allocation 
  • “If you get offered housing twice and turn it down, you get taken off the housing list.”
  • “The UNCRPD needs to be the bedrock of all policy and law – rights not charity and not subject to funding.” 
  • If you acquire a disability, “things need to be in place from the start.”
  • “Why can’t a house just be a house.” 

James told the group that ILMI started a Personal Assistance Service (PAS) Campaign 2 years ago. It is about inviting all local authorities to pass a motion to make the service a right to disabled people who need it – see https://ilmi.ie/key-policy-documents/ for more information about this.

All of us felt that the right to PA needs to be signed in to all related legislation. There also needs to be a whole island approach – it should not matter where you live or what you need a PA for. Currently, all human support funding comes out of the same pot – carers, home help, personal assistance.

A PA is not a carer, “they are extensions of our limbs.” Ireland can learn from other countries, Sweden has an excellent PAS see – https://www.independentliving.org/files/Personal_Assistance_in_Sweden_KW_2010.pdf for more information.