SUBMISSION TO THE JOINT STANDING COMMITTEE ON THE NATIONAL DISABILITY INSURANCE SCHEME CAPABILITY AND CULTURE OF THE NDIA

INTRODUCTION

I am the mother of a 37-year-old man with intellectual disability, autism and epilepsy. My husband Randall and I have been his chief carers all his life and he lives with us at home in Sydney. He is a tall, nice-looking, personable man with a number of interests and developing abilities since his epilepsy has been brought under better control. Currently his weekly program is organised by us, using individual support workers funded through the NDIS and specialists in other areas of skill development. He attends a Day Centre once or twice a week.

Our aim is to maximise his development in cognitive, social areas and daily living routines, so that he is much more independent and can take his place in society and enjoy a good quality of life. We would like him to make some contribution of his own to others. And we would like to be able to gradually reduce his dependence on NDIS funding.

Even though is improving, he is far from being an independent person, who can make his own choices, carry out daily living skills, understand the complexities of money and engage with others in normal conversation. He has improved a great deal since his epilepsy has abated and with the extensive input he is receiving from support workers (NDIS funded) and individual programs set up and paid for by us.

We believe that our son can learn and does learn but he has to be taught well, indeed by the best!

As we are ageing parents, the need to find a home away from home is critical. Also, there is a need to find someone who will “look out for him” when we are gone. He has immediate family members in Sydney, Melbourne and Brisbane, but in all cases either their remoteness from Sydney and/or the fact that they already have responsibilities for someone in their own household with medical/disability issues, makes it unrealistic for them to have oversight of situation on more than an occasional basis.

I outline below the difficulties we are facing, bearing in mind that our experience is of intellectual disability and that the situation may be different in cases of physical disability only.

CAPABILITY AND CULTURE

The mission of the NDIA is to create the very best insurance scheme possible. NDIA promotes the idea of person-centred practice, with respect for and inclusion of persons with disability in areas of decision making relating to their life. The stated aims constantly refer back to the “clients” having choice, being treated as equally participating members of society, with dignity and fairness, and essentially being at the centre of creating a good life for themselves. However, in our world of intellectual disability (which is only one part of the NDIA brief), the person-centred model falls away, as there are so many limitations/exclusions placed upon disabled people. Organisations decide on most aspects of how a person can be included (hours, social acceptability, making or not making allowances for “difference”) and there is little mentoring for the person with a disability. This means that they cannot participate in a so-called “normal” life. We, as parents, have to do it. These limitations/ exclusions include:

Lack of access to mainstream institutions

Examples: Exclusion from mainstream sporting teams.

It would be almost impossible for our son to be included in some way in an ordinary basketball team. Even though he enjoys basketball and is currently being trained by a basketball enthusiast, he would never be allowed to become part of a regular group. It would require adjustment by the coach and team members. The reason always is: that he does not fit in and he holds others back. Just being included in practice sessions could be an option but the fear of receiving a negative response is always there. This applies also to education and social options.

With one sporting body, I actually booked the whole large hall for an hour a week for a term so that my son could go along. We welcomed anybody else to use the hall freely and without payment while we were there.

He does a lot of “one-on-one” with private coaches, such as tennis and music. Occasionally a generous person will also play with him. Most “friends” are paid personnel. The normal group social interactions cannot be developed

Lack of access to a range of work opportunities. is ready to engage in work, unpaid or paid. However, the choices available to him are limited. Work for people like my son usually consists of piece work to meet contracts. Hours are set and workers are expected to comply. There does not seem to be a way of moving forward or of attending only part of the time. The disabled person is not at the centre of decision making as set out by NDIA goals.

Training and mentoring in other areas such as motor mechanics, building construction, libraries and trades such as bricklaying, carpentry, house painting are difficult to find. Big grocery stores will take people with disabilities. However, from my experience there is no training by the grocery store.

Generally, when people with disabilities are engaged by an organisation, the person and support worker are left to their own devices. No attempt is made to offer further training with a view to being able to do other jobs within the organisation.

Lack of time for parents to search for other opportunities Even though we receive substantial core funding in current NDIS plan, we do not have time to do the necessary research to find other work, education, sport and social options for our son, nor most importantly, a good group home for the near future.

Our time is spent - till late at night, managing day to day activities, so that life runs as smoothly as possible. This means organising, supervising and helping with daily routines, attempting to attend to health problems (such as epilepsy, chronic foot and toenail issues, sleep disorder, etc.), payment of bills, making changes to support worker hours, inducting and training new support workers, jumping in when a support worker is not available and often going with a support worker so that there are no problems relating to some difficult behaviour that might unexpectedly display.

Lack of good support workers The time factor is related to the difficulty of finding good support workers who understand disability and who also have a vision beyond being a driver or passive companion. We are

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always looking for support workers with good skills to offer and the ability to go out in public with our son without some problem occurring.

We use support workers who are either self-employed or come from an agency. It appears that in general, support workers do not have to have any qualifications. They are screened for a police check and some interview process creates a profile. The hourly pay rate for a support worker during normal working hours is approximately $32 to $35. It is considered an easy job to get into. Support workers last between 1 and 3 years with a client. It is not an easy job and there are many skills which must be learned in order to be a successful support worker. Lack of the need for qualifications and the low rate of pay for what is in effect a specialist job means that the quality of care varies from excellent to extremely poor (and sometimes dangerous for a client).

Best practice at Day Program Centres Day Program Centres take clients who cannot or do not wish to work in supported employment. There seems to be little offered in terms of work experience such as working in a mechanics repair shop or at a supermarket. Clients are invited to join physical/sporting activities, go for outings and spend time at the Centre doing baking, art, music, gardening and such. Clients are not required to join in the activities and there is little attempt to teach skills in a productive manner. If there is reluctance to participate on the clients’ part, they tend to be left to their own devices, which is mostly doing their well-established repetitive behaviours. Or they wait for something else to happen, doing nothing. The old NDIS skill- development approach, followed for example by ADHC facilities in NSW, has been replaced with primarily leisure-based programs. Sometimes Day Centres are unkindly labelled as “person minding” centres. They are not set up to teach, except incidentally, and there is no emphasis on further cognitive, skills-based development nor social development.

The workers range from total beginners to experienced staff. Following best practice depends on the vision and ideas of the manager of a Centre and adequate training of workers.

Lack of a developmental path Since school ended, there has been no developmental path for tailored to his needs and level of development, with carefully structured programs in academic, life, physical and social skills. It has been spasmodic at Day Program Centres – often non-existent. We have implemented them ourselves, with varying degrees of success. However, when they are done with expert tuition and mentoring, they work and skills are developed.

Strong programs which actually teach clients to read, count, learn about the world, how to hold a knife and butter toast, how to drill a hole or use a saw are rare – if they exist at all. Post school education for those who cannot manage TAFE or were not capable of moving into supported employment programs when leaving school, are very hard to find. Therefore, a person from age 18 onwards, may be set for life to do leisure programs with few measurable results in skill, academic or physical development. However, I am aware of a more intensive 2-year post-school program which focussed on computer skills run by the Endeavour Foundation in conjunction with a university in Queensland. I have not found anything like this in Sydney.

SUGGESTIONS FOR IMPROVEMENT

Create opportunities for disabled people to be involved in some capacity in mainstream sport and social programs. Provide opportunities for elite athletes to mentor people with disabilities.
Create opportunities for people with disabilities to test a variety of work options, including mentoring and tuition. Large businesses should engage people with a disability as part of their charter. Just as ramps for wheelchair access and disabled toilets were once considered to be way beyond the financial means of an organisation and now are accepted as normal practice, so employing and mentoring of disabled people should be part of the organisation’s brief.
Introduce education/learning programs in Day Program Centres with a developmental path to engaging in further education elsewhere. Liaise and use experts in the field of education and training to teach Managers at Day Centres how to implement skills-based programs.
Most Centres run to a 9-3pm schedule. This does not allow for access by those unable to get to a Centre early. Again, the client is not at the centre of the NDIA model as it is implemented by most Centres. More flexible hours are needed. One service provider in Armidale NSW has a centre that is open till 7pm, but we have found nothing like this in Sydney
Introduce nationally recognised training requirements for support workers plus more targeted in-house training by the service provider engaging them. This would include methods: for carefully listening to and “hearing” a person with a disability, learning how to engage in structured conversation with a client, using their own input as starting points for enlarging on the conversation; ideas and knowledge of activities to pursue; how to manage communication and behavioural difficulties; and safety issues. Workers should not have to be trained primarily by family.
Create a career path for workers in the disability care industry. Often workers take on disability care as an add-on to other aspects of their lives, e.g. students, people who cannot find jobs elsewhere, new migrants with little English, people with their own disabilities. That can work well to a degree. However negative outcomes relating to poor communication with clients can occur when a worker does not have much idea what to do, or how to do it.
Offer a better hourly rate of pay for support workers to reflect the very important and serious nature of the work. $35 per hour is less than what a gardener gets for mowing the lawn.
Simplify the many forms to be filled in when dealing with disability service providers. To illustrate the problem, at present it appears that larger organisations providing disability services each have their own format for an epilepsy management plan. This means that for each organisation we are dealing with, the same information has to be entered onto a new form, in a different format from the others, and then doctors’ signatures have to be collected for each separate form, all dealing with the same issue. When periodic review and

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update of the epilepsy management plan comes around, all of this duplicated effort has to be done again. If the NDIA could create a standard form for each of the various medical and behavioural plans that are required families would only need to fill in the information and get medical or other professional signatures once for each plan. Then multiple service providers could all be given copies of the same forms.

Provide researched access to experts and Centres of Excellence where one can turn regarding behaviour management, education, work options, health, skill development. The current support co-ordinators allocated to clients do not meet these needs. Being given a list of internet addresses to research yourself does not cut it. One needs to be able to discuss issues, receive guidance and be given considered suggestions from someone who is an expert in the field.

CONCLUSION

People with disabilities need to be included in mainstream society. Not herded together into disability ghettoes where those who are different are given what can only be described as “twee” programs to keep them engaged, easier to manage and fill the time. The battle against segregation, discrimination and for inclusion in all aspects of life is no different from the long and sustained struggle for Aboriginal rights, gender identity rights, and in earlier times, women’s rights.

How can this be achieved? Through education of the populace, legislation and careful, considered work with people with disabilities so that they are more acceptable in society and hence lead a more fulfilled life. This is where the NDIS can assist. The funding is a wonderful first step. Now it needs to be tailored to achieve more worthwhile goals, and value for money.

People with disabilities need a developmental path which moves them forward cognitively, socially, physically and in terms of skill development (both personal life skills and those needed in the wider community). This can be done by using experts in the field to train beginners, more rigorous programs at Day Centres, a wider array of work opportunities and individual mentoring.

My belief is that people with disabilities have much to offer, if given half a chance.

WRITER OF SUBMISSION

Barbara Albury