Submission 21 — VALID — Supported Independent Living | External submission

VALiD

SUBMISSION | Supported Independent Living

Joint Standing Committee on the National Disability Insurance Scheme

September 2019

Introduction

VALID thanks the Joint Standing Committee on the National Disability Insurance Scheme for the opportunity presented by this inquiry to further examine and address some of the important issues with Supported Independent Living (SIL) funding. The observations shared in this submission are based on our experience of providing direct assistance over the past six years to hundreds of people with intellectual disabilities who are participants of the scheme.

We offer this submission in good faith and with genuine enthusiasm for the success of the NDIS in making good lives a reality for people with intellectual disability and their families and communities.

About VALID

VALID is an award-winning organisation that has been at the forefront of advocating for people with intellectual disability in Victoria since 1989. Over that time, we have developed training tools, information and resources, and advocacy to help empower people with intellectual disability and their families.

VALID provides independent individual advocacy support to more than 250 people with intellectual disabilities annually, as well as self-advocacy training, workshops for around 1500 families by families, self-advocacy networks for more than 300 people, 30 peer action groups in regional and rural communities, and runs projects in partnership with disability and community organisations across Victoria. VALID is funded via non-recurrent grants from the Victorian State Government and the NDIS Information, Linkages and Capacity Building program, and is not an NDIS service provider.

Vision

VALID is committed to the vision of an Australian nation in which people with a disability are empowered to exercise their rights – as human beings and as citizens – in accordance with the United Nations Convention on the Rights of Persons with Disabilities. VALID’s vision is also reflected in the principles of:

National Disability Strategy 2010-2020
National Disability Insurance Scheme Act 2013
Victorian Disability Act 2006
Victorian Charter on Human Rights and Responsibilities 2006

Mission

VALID strives to realise its vision through a range of strategies that work to empower people with disabilities to become the leaders of their own lives. These strategies aim to:

Build the capacity of people with a disability to assert their human rights
Support people with a disability to take their place as equal citizens within their chosen communities
Empower people with a disability to assert their rights as consumers 1

KEY POINTS & RECOMMENDATIONS

The NDIS must ensure that people with intellectual disabilities are able to exercise their 1 right to choose where and who they live with, and that they are never forced to live with others in order to receive supports

Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement.

UNCRPD Article 19(a)

Recommendation

The NDIS must change SIL funding formulas to give preference to independent living without forced sharing and never default to group supports for people with intellectual disabilities

The NDIS must ensure that people with intellectual disabilities are supported to exercise 2 their right to make decisions about their living arrangements and must prevent service providers from making decisions about where people live and who they live with

States Parties shall take appropriate measures to provide access by persons with disabilities to the support they may require in exercising their legal capacity.

UNCRPD Article 12(3)

Recommendation

The NDIS must fund the support for decision-making necessary for participants with intellectual disability so that they have real choice about where they live, who they live with, and who supports them in their home – this might mean additional Support Coordination funding and the facilitation of decision-making supports (e.g. person-centred planning, Circle of Support)

Governments must ensure that people with intellectual disabilities have access to 3 affordable and accessible housing that provides for independent living, regardless of the complexity of their support needs, including increases to public housing stock and rental subsidy schemes

States Parties recognize the right of persons with disabilities to an adequate standard of living for themselves and their families, including adequate food, clothing and housing, and to the continuous improvement of living conditions, and shall take appropriate steps to safeguard and promote the realization of this right without discrimination on the basis of disability.

UNCRPD Article 28(1)

Recommendation

State and federal governments must commit substantial funding increases for new affordable and accessible housing for NDIS participants so that people with intellectual disability are not forced to accept SIL arrangements that compromise their safety, choice, and control

VALiD

TERMS OF REFERENCE | OUR EXPERIENCE

A) The approval process for access to SIL

In VALID’s experience, SIL quotes are made unnecessarily complex because providers must account for the competing needs of multiple residents as NDIS preferences funding group based support models for people with intellectual disabilities. This has resulted in long delays for participants who need urgent access to SIL supports causing extended periods of hospitalisation, homelessness, and for some clients, increased use of chemical and physical restraints while they wait.
VALID advocacy clients who are waiting on SIL quotes often have a ‘plan gap’ because other supports in their plan cannot be approved until the service provider submits the quote. VALID has advocated for participants where they have had limited, or even no access to the community for weeks or months while waiting on SIL approval or to undo an unauthorised 24/7 SIL service booking.
While providers are obliged to develop quotes by consulting with participants and key supporters about their preferences and needs, VALID has supported hundreds of people across Victoria who have not had any involvement in the development of their SIL quote, and are unaware that the provider has catalogued their needs without their input. In some cases, SIL providers have submitted quotes that have effectively prevented participants from using other services to go out on weekdays.

B) The vacancy management process, including its management and costs

It is VALID’s view that vacancy management problems exist principally because the task of choosing where and with whom people with intellectual disability live has been given to service providers, and not to participants. People with intellectual disability should have the choice to live alone, of if they want to live with others, choice of who they live with including people without disabilities, even where substantial decision-making support is required to determine their needs and preferences.
There are significant costs to providers if they are to ensure that SIL vacancy management is completed in full consultation with all existing and proposed residents. In VALID’s experience, many SIL providers make unilateral decisions about who they support and who lives in the house, regardless of the express preference of residents.
Vacancy management processes should ensure housemates are matched according to lifestyle preferences and compatibility. This typically requires extensive meetings with applicants (and supporters) and independent support for decision-making.

C) The funding of SIL

SIL funding should never have been used to prop up outdated congregate models. However, in VALID’s experience supporting more than 350 SIL residents with NDIS planning, NDIS planners have consistently confirmed their view that SIL must be used for shared supports and only through a service provider. This approach disproportionately affects people with intellectual

disabilities who have very low employment rates and when employed, are often paid below minimum wage. Under the current SIL model, people with intellectual disabilities have few, if any, other options but to accept that they will not control who they live with and may not be able to move if it doesn’t work out.

People with intellectual disabilities who move into a SIL property often do not have the decision-making supports critical to ensuring they understand their rights, the risks and benefits of accepting the placement, and the alternatives. SIL providers consistently defer to Plan Nominees, and other substitute decision-makers, without working with the participant to understand what they want.
VALID is aware of service providers who are renting and purchasing large homes for SIL- funded participants which do not have the tenancy protections afforded to people living in Specialist Disability Accommodation. People with intellectual disabilities and their families have been targeted by providers to move into these arrangements - where people do not necessarily choose who they live with - because of the absence of affordable alternatives. In VALID’s experience, the NDIS have been reluctant to fund 24/7 1:1 supports for people with intellectual disabilities to live independently, and only after multiple expensive and time consuming reports from allied health professionals which are often rejected without justification.

D) Any related issues

The NDIS provides 24/7 1:1 funding to participants who do not have intellectual disabilities to live in their own home if they want to, but default to group-based SIL supports for people with intellectual disability. This is an unacceptable and discriminatory practice that disadvantages and further marginalises participants with intellectual disabilities compared with others.
VALID has received reports from the families of participants with intellectual disabilities, who already live in their own homes (rented and purchased), that they will need to share with other SIL-funded participants to access SIL supports. Some NDIS planners have demanded to see the floorplan of the person’s private home to determine how many people should move in. This is not required of any other citizen and should never be allowed.
Forced co-habitation is the leading cause of abuse in group-home settings and cannot be tolerated. There is considerable published research that demonstrates that abuse is more prevalent where people do not have a choice of who they live with. Preventing abuse should be the key consideration for NDIS planners making decisions about SIL funding. Nobody should be compelled to live with their abuser.