The Waiting List World
Family life is many times more complicated if your child has a disability, and it can feel like so much is out of your control. Over the years we struggled to get the services and equipment needed for our son Lewis. We frequently found ourselves frustrated by the bureaucratic rules that constrained the extent to which services and programs could be flexible to meet our family’s needs. Too many restrictions or red tape often rendered services next to useless.
For too long (15 years) we had to rely on whatever services local agencies could provide. We used a mixture of disability specific services (early intervention, in home support through our local council, out of home respite, home help, recreation programs) and universal services (kindergarten, after school care programs, vacation care). At times our choices were limited as we had to fit within an agency’s criteria in order to receive a service. We also spent years on waiting lists, waiting to receive a service rather than actually receiving one. Lewis was on waiting lists for ‘Early Choices’, ‘Making a Difference’ and ‘Linkages’ for several years before finally receiving a small Linkages package.
All families are unique and many are dealing with life cycle changes (like caring for elderly parents, birth of a baby, death of a family member) as well as caring for their child with a disability. A family’s circumstances can change dramatically overnight and throw you into crisis. To assume that organizations know what is best for your child or your family is paternalistic and wrong. My experience throughout Lewis’ life was that no one knew our son better than we did as his parents, and no one knew our family’s needs and stresses better than us. We had more invested in finding workable solutions to complex problems because it was Lewis’ welfare and our family functioning that was at stake. No case manager was ever going to be as invested in finding a solution as we were.
Managing Our Money
Lewis was granted an Individual Support Package (ISP) from the Department of Human Services (DHS) in 2009 and our lives changed for the better. We developed a ‘Person Centered Plan’ identifying Lewis’ broad goals for living and his support needs. Being allocated an ISP enabled us to have a greater say over the services we used, how they were delivered, and how the dollars were spent. This was liberating for us and we valued the sense of control it provided. I finally felt that I was back in the driver’s seat of my own life. It enabled increased flexibility and we were able to be creative in how support was provided. We decided to take a worker with us on our annual family holiday to Phillip Island which enabled us to relax and actually have a holiday as well. We also arranged for a trusted worker to take Lewis away for the weekend which provided an enjoyable time for Lewis, and an alternative form of respite for us.
When Lewis was granted an ISP we were given the option to self-manage his funding package (Direct Payments) and I jumped at the opportunity. If you can manage a family budget, pay rent or mortgage payments, utility bills, insurance premiums, undertake home repairs, buy food, save for a holiday etc. you can self-manage an ISP. It’s not that complicated as long as you’re organized, run a spreadsheet and keep your receipts. We opened a separate bank account with a cheque book attached and this ensured that our family income did not get mixed up with Lewis’ funding. Agencies sent invoices for their staff’s hours which I paid by cheque and purchases were made using Eftpos. With internet banking it would now be even simpler. It took some time each month to make the payments and keep accurate records however it also meant that you knew how you were tracking each month with the budget. If you needed some additional care one week/month you knew whether you have the funds available to cover it. For me the benefits far outweighed the time spent managing the funds.
In 2010 we took part in a pilot program organized by DHS (called Direct Employment) which enabled us to directly employ workers to support our son. This gave us more control because we could choose our own carers. We’d been used to having a passing parade of carers as staff came and went from agencies. It was great to have the ability to recruit and retain our own workers. We employed three workers, two of whom stayed with us for years. Instead of ringing an agency and requesting a worker for an extra shift I rang the workers directly to see if they were available. This was a whole lot simpler because the worker would tell me immediately if they were available. I didn’t have to wait around for hours or days to hear back from the agency. (And what about those agencies that don’t get back to you!) The whole process became more straight forward and immediate.
I can understand that Direct Employment may not be for everyone as you need to feel comfortable and confident taking on the legal responsibilities of being an employer. You need to recruit staff, understand the important section of the relevant Awards, negotiate salary, calculate pays on a fortnightly basis, withhold tax and forward this on to the ATO every quarter, make superannuation contributions to the fund of their choice and meet the OH&S obligations. Clearly not all parents would want to take this on.
For me however the attraction was being able to stretch the funds further. It’s amazing how many more hours of service you can purchase if you pay the worker directly as you’re not paying the administration costs and overheads associated with running a disability organization. We always paid our staff above award rates as we wanted to retain them. You have to be willing to contribute your own time doing the wages, keeping records and meeting the tax obligations and you need to have the skills to perform these tasks. You aren’t allowed to reimburse yourself for this time however getting increased hours of support/care provides you with benefits in another way. We maintained a connection with two agencies for when we needed assistance and our workers weren’t available.
Taking Back Control
The benefits we experienced from self-managing our son’s ISP were increased control and flexibility, an opportunity to do things differently and tailor support to his needs and our family’s needs. We also had a greater knowledge of the budget and how we were tracking each month. The benefits from Direct Employment were the ability to choose support workers and train them for Lewis’ specific needs, better relationships with workers, increased flexibility, increased hours of support, and better value for money.
Overall the benefits were in the reversal of the power dynamic. We were no longer the ‘clients’ in receipt of services. We no longer had to ring agencies in a time of crisis to beg for a few extra hours. We held the funds, had our own budget and employed our own workers. This was a fundamental shift as we were now the ones in control.