If you want an expert assessment of a new plan, who better than to ask than an expert?
Enabling Good Lives (EGL) is a ground-breaking joint programme between the Ministries of Social Development, Health, and Education which offers a new way of supporting disabled people.
It is in the demonstration stage in the Waikato and Christchurch where clients have the opportunity to become the manager, if not employer, of their own care and support needs.
In the words of EGL, this is a “new approach to supporting disabled people that offers greater choice and control over the supports they receive, so that they can plan for the lives they want”.
Life Unlimited (now known as Your Way | Kia Roha) delivers EGL programmes to clients in and around Hamilton and is reporting success stories.
Michael Pulman, who lives with Spinal Muscular Atrophy, is among the Waikato residents trialing the pilot scheme. He is a writer – though was a “terrible student” who failed English, an advocate, an activist and a commentator all in one.
He was raised in Te Kuiti, and the now 27-year-old has been in Hamilton for six years
He gives EGL the thumbs up, albeit that there have been some speed bumps.
“I’d give it a six out of 10, that sounds negative, but I do like it,” he says.
He believes it will take 10 years to get the system completely right.
“I do worry that the process will lock people into an inflexible level of care based on what they have first asked for. It doesn’t work like that – needs and requirements ebb and flow.
“Everyone is different, and the support structures will have to take in whole-of-life views. At present, we focus too much on care and hours of need. The reality is that it varies, and we need contingencies for people with evolving health needs.”
Michael entered EGL full throttle. He was initially the employer who presented his case, was given funding and then began implementing everything.
But he is not trained as a manager and had no experience with payroll. The process hit a low point when one person he employed took issue with payments – and left him in a shower while using his credit card to withdraw money.
The case is still to be resolved, but it persuaded Michael to wind back his role and let Life Unlimited take care of staffing issues.
“I remain the manager and I find the support workers I want.”
He said it felt like a step backwards, but he didn’t want the burden of the legal responsibility as an employer.
“I am articulate and can identify issues, but a lot of people will not be able to do that, and I do worry for them in this new system.”
Michael is an advocate for EGL, but says it is important the pitfalls are identified.
One of the immediate benefits of EGL was his living arrangements. He had previously been in a residential care environment that put disabled people together – but it did not give any consideration to common interests.
“They closed psychiatric units like Tokanui in the late 1990s, but these were like mini versions of them. I wanted to do what I wanted to do.”
Under EGL he lives in his own unit with his partner Jessica, who is studying vet nursing. His staff are there from 7am to 2pm and from 4pm till late.
He says it requires energetic input from clients too.
“This is about getting people out of traditional case models, but if you are not doing anything with your life, you may as well be back there.”
Michael, who is a regular blogger and has studied journalism, wants to pursue that as a career, though he would not want to be tagged as simply a writer for people with needs.