CALD Participation Barriers in NDIS Planning

JOINT STANDING COMMITTEE ON THE

NATIONAL DISABILITY INSURANCE SCHEME

6 September 2019

53 Prospect Road, Gaythorne, QLD 4051

PO Box 2065, Brookside Centre, QLD 4053

phone 07 3354 4900 fax 07 3355 0477 email info@amparo.org.au web www.amparo.org.au

ABN 56 876 279 925

INTRODUCTION

AMPARO Advocacy is a small non-profit community based organisation which provides independent, individual and systemic advocacy with and on behalf of vulnerable people from culturally and linguistically diverse backgrounds (CALD) with disability. We welcome this opportunity to provide feedback to the Joint Standing Committee in relation to NDIS Planning.

AMPARO is governed by a voluntary management committee the majority of whom are themselves people from a CALD background with disability and is funded by the Queensland

State Government Department of Communities, Disability Services and Seniors. AMPARO

Advocacy’s vision is for people from a CALD background with disability are accepted and respected as part of the diversity of Australian society, with access to information, services and benefits, so that they can be included, participate and contribute in family and community life.

AMPARO’s advocacy addresses issues of social and economic isolation, unfair treatment and discrimination. We represent those who are least able to defend their own interests, and who may not have close family or friends who can support their aspirations or speak on their behalf.

The majority of individuals that AMPARO works with are from a refugee background experiencing multiple and complex layers of disadvantage and have generally missed out on accessing specialist disability services, including early intervention for their children. They are often marginalized, and isolated from their own communities and have fallen through the gaps.

Since January 2018 AMPARO has provided intensive support to Queenslanders from people new and emerging communities and refugee backgrounds to access the NDIS in the Brisbane, Logan and Strathpine areas. AMPARO has witnessed the enormous difference the NDIS can make in people’s lives when they are well supported to undertake preplanning and to navigate this complex new system.

CALD PARTICIPATION RATES AND ADDITIONAL BARRIERS

However we are also well aware of the many obstacles and barriers that people experience in accessing and participating in the NDIS. The latest NDIS Quarterly Report for June 2019 shows a slow increase in the numbers of NDIS participants from a CALD background..

The NDIS estimates that nationally approximately 20% of participants should be from a CALD background, and at the state level, 15% of Queensland participants should come from a CALD background. In examining the most recent data, there is clearly a need f

However the active participation rates of people from CALD background as of the June 2019 Quarterly Report to CAOG are:

   Nationally –  8.4%

 Queensland – 5%

These rates are reflective of a number of issues, foremost is the failure of the NDIS to prioritise and adequately resource the implementation of the Cultural Linguistic Diversity Strategy

It is imperative that the NDIS develop and implement targeted access and equity measures to address current barriers in the system as a matter of priority, to increase participation levels.

Through our work we have identified several factors that impact on whether CALD Participants and their families are able to effectively participate in NDIS planning processes and whether as a result they receive a plan that is comprehensive with the appropriate supports to meet their needs.

Pre-Planning Issues 1.1 Lack of pre-planning support and information

Critical to a participant receiving a good NDIS plan is the pre-planning process, and for people and their families from CALD background this is often not available. Most people from a CALD background have not previously been accessing or connected to specialist disability services and have no access to preplanning support.

They usually will have no assistance to think through what their needs for support are and what supports and strategies will help them to achieve their goals. This means they often attend NDIS Planning sessions with little idea as to what supports, capacity building, therapy or equipment they would benefit from receiving.

Once a person receives access to the NDIS, they are sent NDIA documents that are intended to help them to plan for their planning meeting. The NDIA has translated this information into some languages, but there are few resources translated into languages of new and emerging and refugee communities. Furthermore many individuals have had limited or no access to education in their countries of origins and are not literate in their own language. Without direct support to explain information in these documents they are of little value.

However through our work AMPARO Advocacy has been able to meet participants from a CALD background with disability and/or their family and with the certified interpreters have face to face

discussions  to  provide  important  information, answer  their  questions and  assist  with

preplanning. All of the individuals and families we have worked with required significant support in the preplanning process to:  Understand their rights  Explore what a good life for a person with disability can look like  Understand the opportunities available under the NDIS  Identify their specific needs for support/ therapy/ equipment/ capacity building  Understand complex terms and language of the NDIS.  Document this information to take to their planning meeting

1.2 Processes to arrange planning meetings do not meet the needs of participants and their families from CALD backgrounds

Unfortunately process the NDIS and LACs are engaging in to arrange planning meetings is not meeting the needs of CALD participants. NDIA and LAC planners will not leave a message for a participant or family member if they don’t answer the phone, unless the family has included their surname on their voicemail message. The individuals and families from CALD backgrounds we work with usually have a generic voicemail as they may not know how to do create their own message or may not have adequate English proficiency. Therefore they rarely have a message left by the NDIA to advise them of their planning meeting. Additionally planners will attempt to contact the person three times, so when they haven’t been able to reach the person, the result is that people from CALD backgrounds with disability are falling through the cracks and without additional support, not accessing the NDIS.

NDIS Planning Issues 2.1 Planners not understanding the right to advocacy and benefits of their involvement.

Unfortunately, there were several instances where planning meetings were held without the advocate from AMPARO being informed or invited to these meetings despite being listed on the Participants file with their consent, as a ‘contact person’ and someone to be invited to the planning meeting.

In instances where this happened participants did not receive a plan that met their needs, receiving less core support and either limited or no support coordination. Some planners are welcoming of the involvement of advocates when consent has been provided, however some appear to have little understanding of people’s right to advocacy support and less appreciation of the value of the advocate’s involvement for the person. When the advocate asked the LAC why they hadn’t been informed of or invited to the participant’s planning meeting, the LAC stated that: “ they didn’t need an advocate, the planning meeting went well”, contrary to this assertion the person’s plan had inadequate core support and no support coordination.

2.2 Planning Meetings or Pre-planning meetings? A major confusion for many Participants has been the use of language by LAC’s in referring to planning meetings as “pre-planning meetings”. This meant some participants did not recognise the importance of this meeting and were not sufficiently prepared, as they believed it was not their official planning meeting. AMPARO Advocacy has been in discussion with both the NDIA and Carers Queensland about this issue and understands that Local Area Coordinators (LACs) have been advised by the NDIA not to refer to planning meetings as pre-planning meetings, because of the confusion that this causes.

2.3 Accurate communication and the need to engage Interpreters

NDIS Planners and LAC’s often have to be reminded by AMPARO of their obligation to book onsite NAATI certified interpreters for planning meetings when this is needed. Most individuals we work with require this language support for effective communication.

Prior to May this year, requesting a face to face interpreter for planning meetings was extremely difficult, however since the NDIS has updated their processes and information regarding participant’s rights to access interpreters, AMPARO has found this has improved. Unfortunately however the NDIS has not widely promoted these improvements and new information, NDIA staff, LACs and Early Childhood Early Intervention (ECEI) services often require prompting to provide onsite interpreters. Staff have often not had any training in knowing how to engage and work effectively with interpreters and regularly provide inaccurate information on this process to participants, and their families. They are often unaware of their obligation to have plans translated into the person or their family’s language if this is required, citing that this is “not possible”.

New NDIS information on language services refers to the right of participant’s to request specific interpreters when issues of confidentiality and continuity of care are a concern for them or their families. Due to issues of confidentiality and stigma attached to disability in some communities, many people with disability and/or their families prefer to use a specific interpreter who they have had previous contact with and trust. However in practice this is difficult to do.

The NDIS and TIS National have developed a memorandum of understanding to provide access to interpreters for NDIS participants, however the process to request a specific interpreter

through TIS is administratively time consuming and cumbersome. Because of this we have found LACs can be reluctant to do this, even when requested by the person, their family or advocate. This can make the planning meeting an even more stressful experience for the person with disability and/or their family member as they may be asked to share very personal information with a new interpreter that they lack confidence in.

2.4 Plan Decision Maker Not Present at Planning Meetings

The planning process is a question and answer session, conducted over a two hour period, by an LAC or NDIS Planner. When a LAC conducts the planning meeting, they see themselves as an information gatherer and report that unfortunately do not have the final say on whether or not their recommendations for support are approved. It is the planner from the NDIA who approves the participant’s plan despite never having met the person with disability and or their family.

We see this as a significant flaw in the system, as they do not hear directly from individuals about their needs for support in the different areas of their life. Despite this they are charged with making powerful decisions about the types of supports the person with disability needs and often refusing requests for support coordination even though without this, participant’s plans are not being implemented or implemented poorly.

2.5 Lack of support coordination in participant’s plans  It is AMPARO’s experience that many LACs are reluctant to argue for support coordination in Participant’s plans, as they may not have knowledge had experience in working with people from CALD or refugee backgrounds, to fully appreciate the needs of this cohort.

LACs regularly justify why the person doesn’t need support coordination, stating that they can help the person /family to implement their plan. Unfortunately AMPARO has not seen good evidence of LACs providing the necessary time and culturally appropriate support that is required to effectively implement plans, and find many people are disadvantaged by LACs limited capacity to do this work well.

The NDIA are also allocating much less in core support than has been justified as necessary in planning meetings, that they have not participated in. Where the planning meeting is held with an NDIA Planner this seems to occur less and there it appears that support coordination

is  better understood as  important and  often necessary. However LACs seems  to

predominately undertake planning and often people receive inadequate or no support coordination and generally expending any that they may receive in their plans well be a review is due.

 Children from CALD backgrounds who are accessing Early Childhood and Early Intervention (ECEI) services are generally not receiving support coordination to ensure their plans are being implemented. AMPARO receives requests to assist families to implement plans for their children, however we do not have funding to support this work. ECIE workers advise that they only receive 10 hours over 12 months, to meet with the child and their family, develop a plan and provide assistance to commence implementation. If you factor in working with an interpreter for all communication, this equates to a maximum of 5 hours per year. This is unfair and fails to recognise the additional language and cultural needs of these children.

AMPARO’s previous experience with children accessing Better Start for Children with Disability and early intervention support through Commonwealth programs was that funding was often unspent by the time the child turned seven, and they missed out on important support, therapy and equipment. This was because they did not receive the intensive support they required to understand what supports were important or how to access them. Similarly this is happening for children under the NDIS.

2.6 No opportunity to see the draft plan and provide feedback to the NDIA

Furthermore in the current planning process there is no opportunity for the participant or their family to examine a draft plan and provide feedback before it is finalised.

In AMPARO’s experience it usually takes many visits to get to know a person well, and to gain a good understanding of their disability, support needs and aspirations for a good life. Advocacy goals are developed with individuals and their families over several meetings and produced in draft format, to be discussed and agreed at a follow up meeting, to ensure that the information that we have is accurate.

The NDIA should immediately adopt at a national level, the process of providing a draft plan to the persons and their family for comment and feedback, before the plan is finalised.

2.7 Experience and expertise of planners

Questioning techniques vary considerably between planners, often with yes / no options, such as ‘Do you have the ability to go to a festival?’ and ‘Are you fine with reading and writing?’ Little understanding is gained by these questions as to how much support someone would need to attend a festival, or whether someone has a good understanding of a simple or complex text. There appears to be a vast difference in the competencies and expertise of planners and this leads to the quality of plans varying greatly. There is often no consistency in approaches and assessments and it is clear that some planners have had little or no experience in working with people from CALD backgrounds with disability. Many planners have no experience or knowledge of how to engage and work effectively with qualified interpreters.

2.8 Planner Preparation

The NDIS often has information and reports already on file about the person with disability, but these have to be supplied again at the planning meeting. Many people would not know that they have to show these reports again, which may reduce the level of funding that they receive if they fail to provide the LAC or Planner with a hard copy.

2.9 Location of Planning Meetings

Many planning meetings have taken place in temporary offices, with little or no roadside or external signage to indicate where the offices are. Temporary computer networks had been established, which frequently dropped out throughout the assessment process. As the NDIA was not willing to conduct planning meetings in people’s homes, some people with significant disabilities had to travel long distances by public transport to their planning meetings.

Review Process

3.1 NDIS Access Reviews and Reapplications

The system is very complex to navigate and difficult for people with disability and their families from a CALD backgrounds. AMPARO has assisted several people with disability from CALD backgrounds who had previously had their access requests rejected by the NDIA to reapply. In some circumstances this was despite evidence being submitted previously that demonstrated the person met all requirements for support from the NDIS, others required additional assessments and proof of the impact of impairment on their functional capacity.

On their own individuals and families would not have been able to pursue a review of the NDIA’s decision, nor would they have completed a new access request, despite their significant unmet needs. They required intensive support to successfully complete a new access request, including support to access assessments with allied health, psychiatric or psychological assessments, collate reports and provide this evidence to the NDIS. An additional stumbling block for individuals was the justifications given by the NDIS for denying access, which were generally vague and confusing and difficult for a person to understand.

3.2 Lengthy wait times and risks of receiving less funding

Another difficulty that people from CALD backgrounds with disability and/or their families face is the length of time it takes to receive an outcome from a NDIS access review. If you submit an access review, the waiting time to receive a decision can be up to 10 months, which is an unacceptable delay.

AMPARO was advised by senior NDIA staff and our experience confirms, that it is easier to get an access request approved by gathering further supporting evidence and reapplying for access, than seeking a review. AMPARO has been successful with every individual we have supported to access the NDIS.

There is a risk that if you ask for a plan review because the amount of support a participant has received is not adequate, they may receive less funding than originally given. This is because a different planner looks at the plan and they may decide that the persons original funding does not meet their ‘reasonable and necessary’ criteria.

Many individuals did not receive the level of Support Coordination that was needed and in these situation it was better to contact the NDIS Planner or LAC and request a ‘light-touch review’ otherwise known as a ‘soft-review’. This means that the whole plan is not reviewed, only the request for Support Coordination. Wait times for a decision after a formal plan review can be up to 10 months, which is an unacceptable delay.

Conclusion

The NDIS is a complex system that is largely designed and delivered to reflect mainstream practices and the NDIA has still not developed a pathway that can meet the needs of CALD

participants and  their  families. Without targeted  culturally appropriate engagement and

specialised assistance, many individuals from a CALD background with disability and their families are falling through the gaps and either:

 not submitting an access request to the NDIS  having their NDIS access requests rejected  receiving poor plans, or  not implementing their plans at all or effectively.

There is a need for funding to assist people from with a CALD background with disability access the NDIS and effectively navigate its pathway. Every individual and family that we assisted would have had extreme difficulty in accessing the NDIS without the added assistance of AMPARO Advocacy.

AMPARO Advocacy thanks the Joint Standing Committee for the opportunity to provide input into the inquiry into NDIS Planning and hopes the information in this submission is able to influence positive changes in areas where obvious improvements are necessary.

Yours sincerely