A possible new approach to the NDIS?
Question-Why did an individual with a disability or their family approach the state-run disability services? Answer- To resolve an issue relating to a disability.
Question-Why does an individual with a disability or their family approach the NDIA? Answer- To get a funding package.
Like everyone interested in disability services, I have been following the public debate about the ballooning costs of the National Disability Insurance Scheme (NDIS) and the attempts to implement measures that would contain them.
Many of the problems now being encountered have their origins in the very design of the NDIS and the inevitability of its becoming a dependency- making programme. I understand there is not going to be any return to the previous system, but believe it is important to find ways to ensure the NDIS meets it stated goals and is not a vehicle for exorbitant costs and soul-destroying dependency making.
The system we had pre-NDIS in South Australia
From 1982 until 2006, I was the CEO of the Intellectual Disability Services Council (IDSC), the South Australian Government service mandated to plan, develop and fund services to people with an intellectual disability. We developed an integrated approach to case management that used a systems approach, called
“Strategic Community Work” (SCW), very similar to the Local Area
Coordination programme that operated in Western Australia.
SCW identified the individual with intellectual disability as part of a societal network that might be made up of the immediate and extended family, an information network, local communities, generic service agencies, clubs, sporting and recreational bodies and disability service providers. There was recognition that the broader political, cultural and economic systems impact on the individual and his/her family and that these need to be recognised by those working with him/her. A key requirement for success is getting to know, and understand the desires, wishes and aspirations of, the individual.
The SCW approach also acknowledged the role of the case manager as an agent of change within the broader system. Information gathered by workers was used to inform needs-based planning, state-wide planning of services and advocacy for those many individuals whose needs were not being met.
In the SCW context, the task of the case manager involved working with the individual and his/her family to bring about change within any or all of these networks. This resulted in the individual finding solutions to problems as well as having greater opportunities for social interaction and a better quality of life.
In the SCW model, the solution to an individual’s needs did not always, and perhaps not even usually, result in a package of funding or the provision of a “disability service.” It used a tiered approach with an emphasis on as “light” a touch as possible. The hierarchy of interventions that were used always had the intention of assisting by intervening as lightly as possible and included: Providing information Strengthening natural networks Building links with the individual’s community Linking with mainstream services in their local community Linking with disability services in their local community Providing funding to purchase specific services Linking with specialised disability services
To demonstrate how this worked, here are some real examples of how SCW worked in practice.
Simon was diagnosed at age 4 with Williams Syndrome, a rare genetic disorder that is caused by the deletion of genetic material on chromosome 7. Typical characteristics include distinctive facial features, mild intellectual disability and an overly sociable personality. Simon’s parents were distraught and anxious. Their case manager referred them to the IDSC library, which was a key part of the services system. The librarian provided them with recent information on Williams Syndrome and put them in touch with the Williams Syndrome Association. Armed with this information and without any specific issues presenting, the family required no further intervention. The case worker provided information about educational options and family resilience strategies and closed the case, advising the family that they could contact her again at any time.
Later, when it was obvious that existing information was inadequate, the IDSC Library was restructured into an Information Resource Unit and published information on a wide array of topics. In its last year of
operation, approximately 400 people with disabilities and families accessed this service.
Ron was a 22 year old man with a mild intellectual disability when his mother approached the local IDSC office because he was becoming verbally abusive and was starting to push her around. The case worker assigned had skills in family dynamics and recognised Ron’s behaviour as delayed adolescence and his dysfunctional attempts for some independence. As well as giving his mother some strategies to defuse situations, she also connected Ron with the local Aktion Club developed through a partnership with the Kiwanis Club movement in South Australia. These clubs have all the components of Kiwanis Clubs fellowship, formal meetings and most importantly community service. Membership might see Ron and other people with intellectual disabilities taking on the responsibilities of running a meeting and keeping minutes or helping the Kiwanis to paint a local Kindergarten or resurrect the back yard of a recently windowed resident. It enabled people to develop new skills and in some ways the “service” provided to participants was enabling their service to others. IDSC staff were available to the Kiwanis for referrals and to assist with disability-specific issues the Kiwanis could not be expected to resolve (See appendix A)
Ben, a young man with Down Syndrome, was leaving school and indicated to our worker that he would like a job. A traditional response might have been to assess, and/or refer to an employment support organisation. Our worker’s first question to him was, “Well, what sort of job would you like?” His response was that he did not know - a response not terribly dissimilar to that of many young people.
The worker spent some time showing Ben a variety of jobs to enable him to develop an idea of what work was about and the types of jobs that might be suitable. When he decided that he would like to do clerical work, the worker went to the local council to see if Ben could be given some work experience in the council’s offices. The council agreed and, because Ben had a disability that the council staff could not reasonably be expected to understand and cope with, he was supported (with brokerage funds) to integrate into that work environment.
This worked well and in time the worker asked the council whether it would be willing to consider Ben for a temporary position. Again, the council agreed and the staff support was continued so that this integration could continue. Down the track, the council agreed to make Ben a permanent, full-time employee and decided that it did not need the
additional support as he could be supported through the same structures that supported other staff. Our worker continued to be available to assist the council to deal with any disability-related issues.
Ben has just completed 30 years of service with the council and is buying his own home unit and is an enthusiastic amateur actor. Apart from the initial investment of the worker’s time and the small amount of brokerage funding all of this has happened without the use of any “disability” funding whereas one of his peers working in a sheltered workshop might always
require some thousands of dollars each year to support his/her
employment. Ben is also fully involved in the social activities of his work colleagues.
Sam, a 9 year old girl, had steadfastly rejected her mother’s suggestions about joining a swimming group for children with intellectual disability. She wanted to “kayak.” Her case worker rang a kayaking club which expressed some concern at its ability to support Sam. The case worker was able to access some short-term brokerage funding to engage a worker to support Sam in her kayaking. After 6 weeks the kayaking manager rang the case worker to let her know how well Sam was doing, how well liked she was by the other kayakers and that “we don’t need the support worker if that saves some money.” Sam’s mother reported that she often talked about the kayaking and her new friends and that she was much happier and settled.
Lynette was a 25 year old woman with a moderate intellectual disability who desperately wanted a relationship. Her involvement with an older man resulted in her pregnancy and instant abandonment. The case worker assigned to support her was part of a network of staff interested in supporting mothers with intellectual disability. They had developed a training programme which is conducted in groups. These is the most effective way to teach the skills mothers like Lynette will need if her child is not to be automatically removed by Child Protection.
Case managers in various regions reported the unconscionable conduct of some telecommunications companies in their high pressure marketing to people with intellectual disability, signing them up for services they did not need and could not afford. This was taken up at the IDSC’s Legal Issues Committee and then taken up with Consumer Affairs.
If this system was premised on “intervening lightly” it could also act quickly and robustly. In the late 1990s, senior IDSC staff shared a roster to deal with the occasional emergencies that might beset people with
intellectual disability and their carers. I received a phone call one night at about 1am from the police in a regional town, to inform me that they had ‘discovered” two men with severe and multiple disabilities in a farmhouse outside town. They had visited the property at the request of the local hospital where a woman in her 60s had been admitted and was expressing huge anxiety about “her boys.” These men and their mother were totally unknown to the service system.
I rang the IDSC regional manager who immediately attended the property to ensure that the men were in no immediate danger. She arranged with a local service provider to send some staff to be with them over night. The next day, she organised for them to be transferred to a vacant respite house and then met with the mother in hospital to work out some longer term solutions.
The state system also had a regulatory element. On a Saturday afternoon, the manager of a rural branch of a state-wide service provider rang the mother of one of her residents to inform her that son had allegedly been assaulted by a staff member. The mother asked if the staff member had been stood down and was told that, because of staff shortages, he hadn’t been. Standing down staff members in such situations with pay and without a presumption of guilt was standard practice in the sector. The mother then rang the regional manager of the Disability Services Office (DSO), the successor of the IDSC to inform her what had transpired. The regional manager then rang the service manager to insist that the agreed protocol be followed. She was also given the staff shortage argument to which she responded that the manager could do the shift herself. When it was clear that there was to be no chance of attitude, she rang the DSO’s Director of Funding who, in turn, rang the CEO of the service provider. His support of his manager’s stance only changed when he was told that he was putting the organisation’s funding status in jeopardy.
The common feature about all of the scenarios described? None of them would now be possible!
Some of the issues with the emerging cost pressures on the NDIS had been predicted. In the mid-1990s, the IDSC put some funding into a brokerage account. Where the inclusion of a person with an intellectual disability in a mainstream programme might require some additional support, for example, some short-term assistance to help a young adult access a TAFE programme, a case manager could
apply for some funding to make that happen. It was highly effective in supporting inclusion of people with intellectual disability in a range of mainstream activities from Kindergyms to employment often with miniscule amounts of funding, often only being needed for a limited time. However, within three months, IDSC started getting requests from clients and families for “some of that brokerage funding.” The funding had become a goal in itself. The goal of all NDIS participants is to get a funding package!
The situation is further exacerbated by the provider sector. We are now seeing the disability industry acting like every other enterprise, aggressively advertising, creating demand for products they are “selling”, with a goal of maximizing their income rather than assisting people move to higher levels of independence. Indeed, providers have a vested financial interest in keeping people dependent. This is, of course, against a backdrop of people with cognitive disabilities who do not comprehend the corrosive nature of dependence. (See Dodgy Brothers Disability Services Appendix 2). There are also many examples emerging of what could only be described as price gouging.
Another issue which is not being addressed is the poor quality of services provided to many people with cognitive disabilities. Neither in the “old” disability system nor in the emerging NDIS approach has there been there any real emphasis on accountability for the provision of quality services. The NDIS Quality and Safeguards Commission ( the Commission) rightly has mechanisms to ensure that reportable incidents- assaults, sexual assaults, theft, unauthorised use of restrictive practices, etc- are reported and remedial action taken but seemingly has no mandate/interest/capacity to ensure that good services are being provided. People who have capacity are able to determine what, for them, constitutes quality service and are able to vote with their feet if they feel their current provider is not up to scratch.
For people with cognitive disabilities, the situation is not as simple. The
acknowledged “gold standard” approach to supporting people with cognitive disabilities is active support. This is premised on assisting the individual to develop his or her wishes/goals, and then to put in place a developmental programme that will enable the individual to achieve those things for themselves. For example, in a group home there are four young people and the organisation has used an institutional approach to meals, that is, that staff will decide what is to be eaten and will prepare the meals.
In the active support model, the wishes of the individuals are sought and they are then supported to implement those wishes by teaching them skills to be able to do it themselves. For example, breakfast might have been four bowls of corn flakes, four lots of milk and four lots of sugar. An active support approach would
see staff ask each individual what they would like for breakfast and then teach them the skills needed to make the breakfast of their choice. It does not take much imagination to understand that this is much more time consuming and why in many group homes, and indeed in services more generally, providers default to “four bowls of corn flakes.” Not using an active support approach ensures dependence, which is, as Voltaire observed, the worst state we can be in.
What is the role of the Commission in insisting on active support or some other methodology that enables people with cognitive disabilities to articulate their goals and give them the skills to achieve those goals? I don’t perceive it has any. If we don’t get a handle on this we will see unnecessary levels of corrosive dependence and an endless procession of disability tourists aimlessly filling time in shopping centres, accompanied by staff wholly engrossed on their mobile phones, all at a ballooning cost to the tax-payer.
Some possible solutions.
I am not advocating a return to the old service systems but believe that some of its components might be reconsidered. Some suggestions: Essentially in the SCW model, case managers triaged people with intellectual disability with responses ranging from provision of information through to allocation of funding or providing specialist disability services. Some form of triaging should occur before any planning commences to develop a funding package. Local Area Coordinators would be well placed to do that, particularly as they develop their links within local communities and, as described below, have access to funding under the Australian Disability Strategy (ADS) to initiate local, inclusive opportunities.
There should be an emphasis on moving people to higher levels of independence. There is a wide literature describing the skills that people with intellectual disabilities can gain if a developmental approach is taken to service delivery.
The Commission must move beyond its seemingly current mandate of ensuring “bad” things don’t happen to also be ensuring that “good” things do happen through the provision of developmental services. Some, but unfortunately too few, organisations do this extremely well but there is no systemic approach for insisting that this is the norm. If TripAdvisor were to follow the current Commission approach, they wouldn’t report, “This is a great hotel. The rooms were comfortable and spacious and the food and service in the restaurant were excellent” but rather “This is an adequate hotel. You won’t get beaten up in the lobby and your luggage won’t be stolen.”
Somewhere in the new system, there should be leadership to lift the standard of support to people with intellectual disability. We have a good example of this in the leadership of the Commission’s Senior Practitioner in developing positive behaviour support programme to obviate the use of restrictive practice. Each person with an intellectual disability should have a developmental support plan and providers should be held accountable for its implementation.
The old system was greatly underfunded, particularly for the hard edge
services but one of the outcomes of this was innovation and
resourcefulness, now unfortunately missing in a resource rich environment where regurgitating old practices means no risk and where there is no pressure from the Commission to insist on better services and outcomes.
In the SCW model, case managers were a source of intelligence about key issues affecting people with intellectual disability. For example, some case managers reported on the unconscionable activities of telecommunications companies selling phones and plans to people with intellectual disability who could neither use nor afford them. IDSC surveyed the whole organisation, found it to be a major issue and took this up with Consumer Affairs. This leadership is currently missing and needs to be replaced.
In effect, SCW integrated the objectives of the Australian Disability Strategy (ADS) and the service-provision capacity of the NDIS at a local level and at an early point of the intervention with the individual and certainly before any decisions were made about funding. To date, funding under the ADS is disjointed and linked neither to the needs of individuals nor local communities.
Appendix 1
Does it get any better than this?
Ron is a man in his early 30s who has a moderate intellectual disability. Some years ago, his mother approached the local Disability SA office to enquire about activity programmes that Ron might join. At the time, she was concerned about some emerging difficult behaviours, which she believed had their origins in his growing frustration about living with her and having an increasingly boring life. One of the team, Angela, worked with the local Kiwanis club to support an Aktion Club, which was effectively a Kiwanis club for people with intellectual disability. Ron’s caseworker talked to Angela about the possibility of Ron joining the club.
The club invited Ron to one of their regular meetings. Angela attended with him to ensure that Ashleigh and Greg, the two Kiwanis members who supported the Aktion club, understood his disability. She was also able to support them if any of his challenging behaviours emerged. All went well and after a couple of trial attendances, Ron decided that he would like to join the club. In turn, the Aktion club members voted to accept Ron as their newest member.
The club met every two weeks and followed the format of all service clubs. They met at a local hotel, unfurled their banner and began with a meal where members were able to socialise. After the meal, the meeting proper began. Ashleigh and Greg assisted the members to deal with agendas, minutes, moving and seconding of motions and the other intricacies of meetings. This was the first time Ron had ever attended a meeting. The president, Sarah, had a gavel, presented to her by the president of the Kiwanis club, to bring the meeting to order or to signify the passing of a resolution.
One of the standing agenda items was community service. The club had decided to support three local projects. In partnership with the local Kiwanis club, they were going to paint a local kindergarten, contribute to a community clean-up of a park and support an elderly local resident whose backyard had become a jungle.
So it was that on an early summer morning, Ron and the crew arrived at the home of Mrs. Grace, a woman in her late 70s who had been widowed a year before. On the trailer they had an array of equipment including a ride-on mower, a whipper-snipper, rakes, hoes and safety equipment. In the back yard, they found a once beautiful garden totally overgrown by kikuyu and weeds, which, with help of the copious winter rains, had grown up the fence and chocked the other plants. Ashleigh and Greg assisted the team to use the equipment and, for the first time in his life, Ron used a whipper-snipper and had a chance to drive the ride on mower.
Mrs. Grace made a tray of sandwiches and fruit for lunch and the group lazed around planning the afternoon activities. Another three hours and the jungle had been replaced by the garden that Mrs. Grace and her late husband had developed over the many years of their marriage. By 3.30, they had finished, tired, dirty and sweaty. They had just put all the gear back on the trailer when Ashleigh reached into the esky and handed everyone a cold beer.
Sitting there in the rejuvenated garden, sipping an icy beer, basking in the effusive gratitude of Mrs. Grace and admiring their handiwork, Ron felt a sense of satisfaction he had never previously experienced. Does it get any better than this? The “service” he received was being given the opportunity to serve others!
Appendix 2
Dodgy Brothers Disability Services
In a national project I did in 2013 with a colleague, to assess the unintended harmful consequences of the NDIS and to propose strategies to address them, we heard two views that span the range of possible outcomes for people with disabilities in the NDIS service environment. A woman, a young professional with a physical disability, didn’t mince words, “I can’t wait to do my plan, get my money, make my own arrangements and get everybody the…. out of my life!” However, at a meeting with a group of self-advocates in Launceston, a middle aged man with a mild level of intellectual disability told us, “We get screwed around now and I think we’ll just get screwed around in a bigger system.” The group went on to tell us about the petty meannesses to which they were daily subjected, including one person not being “allowed” to attend a meeting of a self-advocacy group.
Our young professional has received her package. It has included funding for some minor alterations to her home and some additional personal support. This will assist her in achieving her goal of moving towards full-time employment. She used to get her support from ABC Inc. While she was general happy with their service, she didn’t like their insistence on only using staff with Certificate III/IV. She has decided to hire her own female workers and has determined a check-list of exactly what she is looking for in her support workers. She will train them in exactly how she wants to be supported and she knows that if a particular worker is not right, she can replace her. With a full-time job, made possible by these supports, she is now thinking about what comes next- an overseas holiday and perhaps getting involved in local politics. She is very clear about the outcomes she expects!
Bill, a 48-year-old man with a moderate level of intellectual disability, has also received his NDIS package. He has lived with his mother who has largely done everything for him because it has been easier and quicker than trying to teach him new skills. Although he lacks the skills of daily living, he is keen to move into his own accommodation. He has been through the NDIS process and now has his funding package of around $250,000. Bill has come to his NDIS planning meeting without any experience in planning for the future, let alone formulating goals and outcomes.
Bill, supported by his mother, approaches Dodgy Brothers Disability Services, one of the new organisations mesmerized by the huge amounts of new money in the sector and determined to get their piece of the action. They quickly understand there are two ways they could support Bill.
They could put in place a developmental programme, teaching him to cook, clean, shop and do all the other activities associated with community living. They could put in some supportive technology that will enhance his safety and security. This could be so successful that in two years Bill has such enhanced skills that he only needs a package of $150,000. Oh, wait a minute! Dodgy Brothers have just lost $100,000 of income!
Or, they could continue to have staff cook, clean, have sleep-over shifts and perpetuate a level of dependence that would see his package of $250,000 continue forever. Bill won’t mind; it’s largely an extension of the life he had with his mum. His mum won’t mind; she didn’t perceive that he had a capacity for independence. Dodgy Brothers will love it; they have a guaranteed income stream for Bill’s lifetime! The major task they will have to keep this level of income is to flim-flam the NDIA planners at the annual review. Given the quality of the NDIS planning system and some planners, that won’t be difficult!
Bill might not understand the corrosive effect of dependence but, over time, he will be less than he might have been. As Voltaire asserted “It is not inequality which is the greatest misfortune; it is dependence.” In my view, dependency making ranks with the worst type of abuse. Many of us who have been around a long time would remember the dependency making of institutions, the wasted lives and lost opportunities. We can’t assume that the same won’t occur in the new service system. It will require some new thinking and a vigilance that we have never had within disability services.