An inclusive approach to shadow reporting on UNCRPD

By Chloë Trew, Policy and Research Assistant Manager, Scottish Consortium for Learning Disability

The Scottish Consortium for Learning Disability has been supporting a group of people with learning disabilities to contribute a shadow or parallel report to the Committee on the Rights of Persons with Disabilities on the progress of implementation of the CRPD.  Over the last year, group members from across Scotland have been meeting together to understand and discuss the Convention, including their views of how real the Convention rights are for people with learning disabilities.  You can read the group’s report to the UN Committee here.

Ronnie from West Dunbartonshire explains why the group wanted to write the report to the UN Committee. “We’re the voice of experience; we know what it’s like to have a learning disability, so we’re the best people to tell the UN Committee what we think is happening.” Like other members of the group, Ronnie is concerned that there are many people with learning disabilities who don’t get the chance to speak up about their lives, and views the reporting process as an opportunity to act as an advocate.

Members of the group have come together 8 times over the last year, beginning by discussing the Convention as a whole and then choosing which articles they wanted to discuss in more detail.  These included the right to equality (Article 5), awareness raising (Article 8), the right to accessibility (Article 9), the right to live independently in the community (Article 19), the right to work and employment (Article 25) and the right to an adequate standard of living (Article 28).

Key messages from the group are that while there have been significant strides forward for people with learning disabilities in Scotland, much remains to be done, not least building awareness of the Convention itself.  Group members felt that neither people with learning disabilities, nor public authorities, demonstrated high level of awareness of the Convention.  Although the group were very pleased that the UNCRPD is mentioned in the new Scottish Government learning disability strategy ‘The keys to life’, they were also disappointed that there has been no systematic attempt at making the UNCRPD rights real through this vehicle.  Perhaps the central message from the group is the power of working together with public authorities to bring down some of the barriers to the fulfilment of human rights, but that such work needs to be meaningful and truly inclusive in order to achieve the desired effects.

With regard to specific rights, the group were very concerned that people with learning disabilities and other disabled people were not getting the right support to enable them to live independently in the community. For one member of the group, Donna, there was a very real tension between the rights set out by Article 19 and her experience of moving from a group home to her own tenancy. “I didn’t get to choose where I lived or who with. I wasn’t included from the start and I had to get some support from advocacy to make sure this happened. I think it’s really important to be able to choose where you live and who you live with.” Other members of the group Mark, Linsay and Ashley are worried about people with learning disabilities living in non-community settings and want to be able to find out more about how many people might be in this type of situation, and what the barriers are to supporting people in the community.

Changes to welfare benefits, eligibility criteria and charges for services combined with the barriers to employment mean that people with learning disabilities often experience poverty and hardship, further placing the right to live independently in jeopardy. However, there is some positive news following the Scottish Government’s recent decision to create a Scottish Independent Living Fund, which will safeguard payments to existing users and open the fund up to some new users.

Sandy from Oban wants to highlight the inequalities experienced by people with learning disabilities in work and employment. Current statistics show that fewer than 10% of people with learning disabilities known to Scottish local authorities are in employment. Sandy says “I feel that it’s not right that sometimes people with learning disabilities don’t get a fair crack at interviews and good support and information to get a job.” Ronnie agrees and points to the importance of good personalised support to secure employment.  “People are like tortoises – they have all these skills and they need them brought out, by working with the person.  Find out what they like doing and what their skills are get them a job that way.”

The group have also been involved in the development of the Scottish National Action Plan for Human Rights and are pleased that many of the issues they have raised during the project chime with the themes and actions set out in the plan.

Chloë, who facilitated the group on behalf of SCLD, wishes that there had been more time and funding available to discuss the Convention in even more detail.  “It’s challenging because there is so much depth to the articles in the Convention and you have to make sure that people have as much time and support as they want to understand what the Convention sets out. So we didn’t get a chance to speak about all of the rights, including for example Article 12, which is obviously at the forefront of the current debate around supported decision making. I would have really liked to be able to get the group’s perspective on the Committee’s recent General Comments on this issue.  But although we have only been a small project, I feel that we have tried to work really hard to capture the inclusive spirit of the UNCRPD and I hope that comes through in the report.”

The National Disability Insurance Scheme – Australia gets ready

By Christina Ryan

The National Disability Insurance Scheme (NDIS) represents a major victory for disability rights activists, and particularly for those of us who are people with disabilities. The NDIS was envisaged by service providers and the parent / carer lobby but how it will look belongs to us.

The Scheme has been shaped within a human rights framework, aligning to key principles of the Convention on the Rights of Persons with Disabilities (CRPD). Most specifically, it uses the social model of disability to consider eligibility rather than rating people against a long list of accepted disabilities. This is a fundamental shift in the government approach to disability service provision, and represents a key victory for DPOs and Advocacy Organisations in Australia. The NDIS has a number of eligibility steps, but the key two are: 1. the level of support you require (in other words do you need a certain level of support to live with dignity, get by, etc?), and 2. is that need ongoing (is your disability with you for life).

These criteria are causing some confusion to people with disabilities and their families who are well conditioned to using diagnostic labels to navigate current service provision systems. The new criteria consider the barriers to being part of the community and living with dignity, and look at whether early intervention will increase a person’s ability to participate.

Another fundamental principle of the NDIS is individualised funding under the tag label “control and choice”. This is a radical change in Australia where “block” funding has been the standard model used. Block funding is given to service providers by government, who are then required to provide services to a certain number of people with disabilities. Most service providers are non-profit community organisations who have taken this model and used it to average services to as many people with disabilities as possible. Some of their consumers will need greater supports, and some less.

For many people with disabilities this has meant being forced to live with people they don’t choose, receive very rationed services, and generally accept whatever generic service a provider offers.

The disability movement in Australia fought hard to ensure that the NDIS would not perpetuate this old system, which has catered remarkably well to service providers, but which has left people with disabilities poorly supported and living lives over which they have no control. In fact in 2009 the Australian Institute of Health and Welfare identified that under half of people with disabilities were getting less than half of what they needed. Very few people actually had what they needed at the level they needed it. In other words, there was huge unmet demand in the disability community. When examining the need for an NDIS the Productivity Commission was clear that the current system is broken and should not simply be expanded with more money, rather a whole new disability support system must be established.

So, the NDIS will use individualised funding, where an allocation (based on assessed individual need) will be made to the person who will then make their own choices about how that money is spent.

For most people with disabilities individualised funding is such a radical concept that it will probably take years before they fully realise its potential. This will be particularly the case for highly institutionalised people whose lives have been largely managed by those around them. Many expect others to continue to do what needs doing to make their lives work and have no concept of how they might express their wishes or make their own choices. Disability Advocacy Organisations are working hard to ensure that this very marginalised group of people with disabilities are as prepared as possible for such major reform. Something that is being focussed on is increased access to self-advocacy training and supports to ensure as many people as possible are not left by the wayside when it comes to having control and making choices.

Service providers and families are working to understand how they will operate in a system that puts the person with disability as the key decision maker. Many seem to assume that nothing will change, and it probably won’t for a long time, others are being innovative and proactive in making the new vision a reality.

Australia is in for a brave new world where people with disabilities will have much greater access to supports, be more recognised as their own agents, and be more visible in the community. How this will roll out is anyone’s guess.

One of the key concerns of Advocacy Organisations is that people with disabilities DO actually have a role in making their own choices and decisions about what their supports look like. It will be very easy for everyone to just continue as they currently operate, but the NDIS is intended to be very different.

There has been some rush to get guardianship orders in place so that people’s access to their individual funding package is denied, or to ensure that their housing options (for example) comply with family and service provider preferences. This is worrying and is being monitored by Advocacy Organisations and by various arms of government involved in implementing the Scheme.

Perhaps there will be little change initially, other than increased levels of appropriate supports, but over time as people with disabilities become more active and engaged in the community we will become more in control of what is happening in our lives. As we become better practiced at making decisions about our supports we will be better trusted to do so.

Alongside this is the broader global push to replace substitute decision making with supported decision making. This concurrent activity in both areas may contribute to some acceleration as each relies on the presence of the other to make them viable. So, supported decision making will assist control and choice to be a reality, while more control and choice will reduce the perceived need for substitute decision making.

Some key areas being watched by DPOs and Advocacy Organisations are:

1. Will the NDIS result in less child removal from parents with disabilities as supports are provided in this area for the first time?

2. Will levels of violence and abuse reduce as people have better access to choices about how they live and who they live with?

3. Will employment and education levels increase because people can get out there and participate reliably?

4. Will women with disabilities finally get a more equitable share of the support dollar (at present the national rate is about 35%)?

5. Will forced sterilisation become a thing of the past once better menstruation management and supports are in place?

In short, the NDIS is keenly anticipated by people with disabilities and their supporters and we’ll be watching to make sure it fulfils expectations on greater control and choice, that it is about our rights, and that our brave new world becomes reality.

In 2014 there are four current “launch” sites trialling various aspects of the NDIS. Two further jurisdictions are about to launch the Scheme with full roll out across Australia by 2019.

About the author

Christina Ryan is the General Manager of Advocacy for Inclusion and the Chair of the Disability Advocacy Network of Australia. She is also a person with disability who uses support.