NDIA Accountability Project

Intellectual disability market navigation, support coordination challenges and service provider transparency

‹ PrevPage 1 of 10 · Source p. 1Next ›

IDRS SUBMISSION TO THE JOINT STANDING COMMITTEE ON THE NATIONAL DISABILITY INSURANCE SCHEME

NDIS Market Readiness Submission

IDRS is a not-for-profit community legal centre that specialises in providing legal advice, advocacy and education for people with intellectual disability.

People with Intellectual Disability are entering the new era of disability service access through the NDIS. In many cases our clients are engaging with the NDIS as complete novices. The requirements of setting up budgets, understanding NDIS language and engaging services for themselves is a complex process, particularly without support. This environment has seen many clients of IDRS struggling to find assistance and support to help them navigate the NDIS market. This report will examine key themes that have arisen from those people’s experiences.

For further information contact:

Janene Cootes Executive Officer

Paper prepared by: Mitch Mulqueen and Dominique McGovern

IDRS SUBMISSION TO THE JOINT STANDING COMMITTEE ON THE NATIONAL DISABILITY INSURANCE SCHEME

NDIS Market Readiness Submission

Terms of reference for this submission

This inquiry by the committee is about the implementation, performance and governance of the NDIS, the focus is on the market readiness for provision of services under the NDIS.

The following categories will be explored in this report:

  • a. the transition to a market based system for service providers;
  • b. participant readiness to navigate new markets;
  • c. the development of the disability workforce to support the emerging market

THE TRANSISTION TO A MARKET BASED SYSTEM FOR SERVICE PROVIDERS

The transition to a market based system for service providers as part of the NDIS has created many complex issues not only for service providers but also for consumers of the scheme.

Our clients are experiencing many difficulties engaging with the market based model which is affecting how they are accessing and engaging with the scheme and its service providers.

From the perspective of IDRS clients

  • a. ISSUE: Service Providers are lacking in Transparency

    The market is competitive and service providers are locking some of our clients to their service giving them less choice and control. Our clients are reporting that there can be a lack of transparency with regards to NDIS Plan charges. Service providers are not readily providing a breakdown of costs and sometimes are locking participant funding.

    For example, one client began with an NDIS plan with a provider who locked their NDIS funds for the duration of their NDIS plan, which was 12 months. As the provider spent the funds the participant realised that they would really like to try a different therapist. The participant then enquired to see if they could try a new therapist from a different provider but their funds were locked to their service provider. Re-negotiating the service agreement was beyond this particular client’s skill set and it was very difficult for them to access the appropriate training or capacity building within the service so they could re-

1

negotiate their contract. When a breakdown of plan charges was requested, the service provider took months to provide this information.

SOLUTION: Service providers should provide information to their clients about how they can re-negotiate their contracts so they can have choice and control. Service providers that are inflexible should become more malleable to assist clients with their specific needs and offer other alternatives. Locking a client’s funds for 12 months is not a positive solution and causes stress for clients with intellectual disability who do not have the skills to negotiate their service agreements. Assistance should be available to participants to assist them to navigate this situation. For example, via advocacy.

  • b. ISSUE: Incomplete Service Agreements

    Some of our clients have been provided with incomplete signed contracts from their service provider where the service provider has not included a schedule of fees for the cost of each service they are providing. Some contracts are not referring to which item numbers the service provider is charging as per the NDIS Price Guide.

    We are unsure whether providers are poorly informed regarding the drafting of their service agreements or whether they are lacking in resources and time to provide completed service agreements to their clients.

    SOLUTION: It would be beneficial if the service agreements were not only completed accurately and in full but also included an easy read option and larger font for clients with intellectual disability and also for clients who are vision impaired. Again, people with intellectual disability, particularly those who have no natural family support need assistance to understand contracts.

  • c. ISSUE: Spent Money Showing in Portal as Unspent

    Some of our clients have been questioned at internal review by the NDIA as to why they have unspent money on their portal. Some service providers are failing to make timely payments for their services when charging to the participant’s portal. This in turn shows a non-reflective participant budget of how much NDIS money has been spent on services.

    One of our clients asked their provider why it had taken nearly 12 months to process the large payment. The service provider responded that they just did not have the administrative support for their large client base so they made a decision to charge to plans annually. This service was operating in a rural area in NSW.

    SOLUTION: Service providers should have proper accounting practices and the appropriate software in place in order to manage their clientele and their budgets. There should be a regular turnover of charges to the client portal. Services particularly in rural areas might require more training and education with regards to accounting practices that are suited to the NDIS realm.

2

  • d. ISSUE: Support Coordinators influencing clients to lodge an internal review for further support coordinator funds

    Some of our clients report that Support Coordinators spend a lot of time with the participant trying to obtain further support coordinator funds. This can be problematic when the support coordinator is taking the client through the internal review process and is spending the support coordination funds with the goal of obtaining more funding.

    SOLUTION: It should be the participant’s wishes to go through the review process and this should not be determined by the support coordinator. When support coordinator budgets are low, a potential conflict of interest arises if the support coordinator is taking the participant through the appeals process whilst spending their remaining support coordinator budget. The participant should be guided through the appeals process by a disability advocate or a support worker from a separate organisation so there is no conflict of interest. However, it must be noted that some of our clients have also received positive results at internal review from obtaining assistance from their support coordinator at the client’s request. It would be beneficial for all participants that the organisation that provides the bulk of a person’s services should not be the support coordinator. This would create impartiality, and reduce risks around bias and conflicts.

  • e. ISSUE: Support coordinator convincing client to change supported accommodation to a rental that is owned by the support coordinator’s friend

    Case Study – Troy - 25 years old

    IDRS received a call from Troy who mentioned that he had a new support coordinator for the NDIS. After obtaining support coordination, Troy then signed a service agreement to the service provider that also ran his support coordination. The support coordinator introduced Troy to a friend of the support coordinator. The friend had multiple rental properties available and offered his rental to Troy. The rent payable was at the extreme end of Troy’s budget.

    IDRS suggested to Troy to find a local advocate to assist him – he did so and the independent advocate questioned the support coordinator about the matter. The advocate suggested a meeting to discuss and find a property more within the client’s budget.

    The support coordinator became angry that the advocate had spoken with Troy first and not himself. The support coordinator called IDRS saying that Troy’s rights had been violated. IDRS contacted Troy who quite clearly said he did not want to move into the expensive house, and that he wanted the support coordinator to cease calling him and telling him to move out of his present group accommodation.

3

Troy said he felt threatened by the support coordinator and said that he had given his mobile phone to his group home’s staff in an attempt to stop the calls from the support coordinator. Troy and his advocate managed to find a new support coordinator with a different service and ceased contact with the old support coordinator by obtaining a new telephone for the client.

SOLUTION: Services that offer support coordination as well as other NDIS support services should only be able to provide support coordination or services. Conflicts of interest arise when support coordinators sign clients up to their service for other supports. The NDIA or the Quality and Safeguards Commission should monitor policies and procedures of providers and their implementation. This would prevent providers taking a financial interest in the client and not representing the client’s wishes by pressuring the client into arrangements that does not benefit them and puts them at risk.

PARTICIPANT READINESS TO NAVIGATE NEW MARKETS

Our clients are reporting that they are finding it very difficult to navigate the new markets created by the NDIS. They are not only finding the NDIS hard to access but they are finding it very difficult to access services for their particular needs and choices.

These are the following difficulties that our clients our facing:

  • a. ISSUE: LAC model not connecting clients with services and support coordination is required for many people with intellectual disability and cognitive impairment –

    People with intellectual disability require assistance to enter the market. Currently the LAC model which was created to support NDIS participants and link them up with supports is failing for our clients. This is particularly evident for our clients who have not been provided with support coordination in their plan.

    We have many clients who should have been provided support coordination but they have not. This in turn has meant for some of our clients that their NDIS funds remain unspent at the end of their annual plan duration due to a lack of support and assistance. This then can negatively affect their next annual NDIS plan because the NDIA are of the opinion that the participant does not require the funds because they have not spent the money.

    SOLUTION: NDIS participants who have intellectual or cognitive impairment should be provided with support coordination. If the scheme cannot financially afford to fund support coordination to every participant with intellectual disability and cognitive impairment, then it should be prioritised to those who have higher needs and are lacking in support.

4

For the people with intellectual disability and cognitive impairment who are not granted support coordination, they should be provided assistance by a Local Area Coordinator who are willing to assist them to link with services to suit their needs. Providing lists of names is not enough. If they need further support which is extensive in nature then the LAC should support the participant to contact a disability advocacy service.

  • b. ISSUE: Some Support Coordinators are not experienced with working with clients with intellectual disability. There is a lack of initial contact made between support coordinator and client.

    One of our clients was referred to IDRS for help with his access application to the NDIS. This was because there was no-one to help him with his application. Enquiries to the NDIS revealed that this man already had an NDIS package for 6 months. He was totally unaware of this due to his disability. He had been appointed a support coordinator who had made one or two attempts to contact him by phone but no other follow-up.

    SOLUTION: Support Coordinators should be trained to work with people with intellectual disability. The Support Coordinator in the above case study should have persisted in contacting the client and pursuing multiple ways to get in contact with him.

  • c. ISSUE: Support coordination funding diminishing fast due to administration costs –

    Our clients that have support coordination included in their budget report that their support coordinator funds are quickly diminishing because they are being used for administration rather than results based outcomes for clients.

    SOLUTION: Support Coordination that is administration heavy wastes government money on vital and necessary support required for people who require support. If the NDIA require support coordinators to partake in large amounts of administration and paperwork then this should be taken into account in the support coordination funding and increases should be made to each level of support coordination. Support coordinators should be provided with further training and resources in order to be able to navigate their workloads and reduce administrative burdens.

  • d. ISSUE: People with Intellectual Disability can see Support Coordinators as case workers funding is being spent on telephone calls and general conversation –

    Some support coordinators are also not explaining to clients that their telephone calls will be charged to the support coordination budget. Many of our clients need to communicate via telephone rather than email due to their disability.

    Many of our clients are seeing the role of support coordinator as being similar to the case manager ADHC model. This is causing support coordinator budgets to diminish quickly when support coordinators are communicating with clients regularly without having appropriate plans of actions in place to produce prompt results for the client.

5

One of our clients reported that her whole support coordinator budget was spent and the support coordinator had never asked for her NDIS plan. This reveals that the participant was not guided by the support coordinator for a prompt resolution.

SOLUTION: Recognition that there is poor workforce capacity to provide skilled support co-ordination. This role is key to the success of the NDIS. Support Coordinators may require further training in order to know how to explain to clients with intellectual disability the support coordinator role. They will also need to explain how costs can add up quickly. Support Coordinators need to develop strategies in order to manage many calls and direct callers to other organisations and mainstream support services like advocacy organisations. By building in capacity amongst their clients the support coordination budget can be used more effectively and will reduce the over-reliance that some clients have for support coordination.

THE DEVELOPMENT OF THE DISBAILITY WORKFORCE TO SUPPORT THE EMERGING MARKET

  • a. ISSUE: Some Service Providers do not have sufficient experience and enough support workers to properly care for people with Intellectual Disability and associated high needs in supported accommodation -

We have a number of clients who claim that their service providers do not have sufficient experience and enough support workers to run accommodation for people with intellectual disability with associated high needs.

Case study Example – Bobby – 30 years old

Bobby has an intellectual disability and is non-verbal. He has very high and complex needs. He lives in supported accommodation run by a NDIS approved service provider. His first NDIS Plan resulted in his state funding for 1:1 care being reduced to 1:4. After a review of the decision, Bobby resumed his 1:1 funding.

The disability support workers that work at Bobby’s current group home are not experienced with assisting people with complex disabilities. Since transitioning from being in a unit alone with 1:1 funding to an accommodation setting with two other adults, Bobby’s care and lifestyle has substantially reduced. He no longer actively communicates, is becoming bowel incontinent, has sustained unexplained injuries and is currently being accused of physically assaulting another resident. The service provider claim that Bobby is receiving 1:1 funding however the family and therapists have witnessed on multiple occasions that Bobby and two other residents are with one support worker.

Currently, Bobby’s provider cannot keep up with his level of needs. The family are requesting that he obtains weekly access to therapy such as behaviour support and speech therapy in addition to his 1:1 care. They have been placed under extraordinary pressure from NDIA to accept a reduced frequency of therapy and level of care despite this level of support historically meeting his needs.

6

The family have also had to make a complaint to the NDIS and the Ombudsman as there have been a number of occasions that Bobby’s family have noticed evidence of neglect and possible abuse such as soiled underwear, urinated pants, his bedroom smelling of urine, Bobby wearing worn out shoes when he had new shoes in his possession, food around his face when out in public and unexplained scratches on his body. Bobby also lost a considerable amount of weight in a very short amount of time. This led to him having reduced energy falling asleep on couches for extended periods and in the car during trips. Staff reported Bobby was easier to manage during this time.

The staff continued to medicate Bobby at the same rate and did not consider his dramatic weight loss and the impact it may have in potentially overdosing him. His family took him to see a psychiatrist who had to reduce the dosage of his medication across three subsequent visits. Staff also put Bobby to sleep at 7pm when he used to go to sleep at (9:30pm when living at home. He wakes up multiple times during the night.

The family needed to alert the service provider multiple times weekly to ensure that Bobby’s health is addressed. When the family enquired as to why Bobby’s health was not being overseen adequately, they discovered that staff were not accurately documenting information, if at all and were not trained in mealtime management. There was also a high turnover of staff and casuals sent to medical appointments.

Bobby suffers from ingrown toe nails and the family have asked this issue to be addressed for over a year and a half. The NGO wanted to charge the family five hours in therapist costs to put in a Restricted Practice Application to approve a psychiatrist referral to administer Valium to reduce anxiety during podiatrist appointments. Three months later, the RPA has still not been approved nor has a medical appointment been arranged for Bobby to see his GP about his toe nails. One nail is growing around his toe. When the service provider was questioned why the RPA had not gone through, the response received included the following justification: “the medication plan was needed to be written up for the client, and the money had to come from somewhere”. This has caused the family distress because Bobby’s entire therapy budget has gone in to training staff at his supported accommodation.

Bobby continues to have toe nails that have not been cut in almost two years, he is increasingly incontinent, experiences sleepiness, has started to snatch food when eating at the family home and eating food after dropping it on the floor, he has intermittent periods of coughing and no longer actively communicates in addition to more recently being accused of pushing another resident with little information provided. No incident reports are ever made to the family when Bobby has sustained an injury. The family find out about incidents when they see an injury on Bobby and then need to request repeatedly across months to find out what had happened. Formal documentation is never provided to the family. However, the service immediately report an incident when he is accused of a behaviour of concern.

Bobby cannot easily change his accommodation provider because of the level of funding that has been provided by the NDIA and also due to the competitive nature of finding suitable supported accommodation for an individual with extensive needs.

7

SOLUTION:

The market is not equipped to meet the needs of people with high and extensive needs. NDIA seems poorly equipped to understand this level of complex need. The Supported Accommodation setting does not seem to be wholly prepared for clients with high and extensive needs. There must be safeguards in place to better protect residents living in supported accommodation, particularly residents who are non-verbal.

The NDIA or the Quality and Safeguards Commission should be overseeing NDIS approved providers. For example a community visitor’s scheme would ensure that providers are reviewed on the ground to ensure proper safeguards are in place for people with disabilities.

Some service providers managing supported accommodation do not hire appropriate staff with the appropriate experience and qualifications to manage clients with high needs. Also, 1:1 funding does not necessarily equate to 1:1 support, as described in the above case study. There needs to be more accountability as to how service providers are spending funding for clients with high and extensive needs. The NDIS Price Guide may not take into account the costs of hiring staff who are suitably qualified to work with clients with extensive needs. If this is the case, the Price Guide should be reviewed. We suspect that there are not enough available skilled workers trained and experienced to meet this level of need in the market.

Service providers should have appropriate policies and procedures in place to support their residents and provide a safe environment free from neglect. This should also be effectively overseen by the agency or the Quality and Safeguards Commission. There should be financial consequences for organisations that act unethically and do not have policies and procedures in place to better protect their clients.

  • b. ISSUE: There is evidence that in regional areas trained specialists are experiencing unfair trade restrictions by their employer whom is trying to create a monopoly for their own service. This negates a client’s choice and control and also reduces a competitive market.

Case Study – Julia 50 years old

Julia has an intellectual disability and has cerebral palsy. She requires regular occupational therapy and has been seeing the same occupational therapist for the last 10 years. Her occupational therapist has recently informed Julia that she is leaving her employment but can no longer work in the area because of the restraint of trade clause in her current employment contract.

SOLUTION: The agency should be educating support workers and therapists who work in the NDIS realm about the legalities of restraint of trade clauses and whether they are allowed. Restraint of trade clauses do not promote a competitive market and in turn better practice. This needs to be investigated by the NDIA.

8

CONCLUSION

IDRS are hopeful that the above case studies and submissions will assist the NDIS Standing Committee identify the current issues with the NDIS market that are affecting people with intellectual and cognitive impairment.

Urgent safeguards are required so this client group can be supported and free from neglect and harm. The NDIA or the Quality and Safeguards Commission must closely oversee the provision of services to ensure that all providers are offering quality services that are safe and are attracting staff who are skilled and qualified.

People with intellectual and cognitive impairment are vulnerable if they are not provided with the appropriate support and education so they can navigate the market. If suitable protections are not put in place for vulnerable participants, the scheme may lead participants down a dark path of abuse, neglect, fear and isolation. This is in complete contrast to the goals of the scheme of providing choice and control for participants and providing people with support to become more independent and included in the community.

9