Legislative Council Wednesday 16 September, 2020

Ms FORREST (Murchison) - Mr President, I will make a brief contribution on adjournment. This matter came to my office just a few days ago and disturbed me to the point that I asked the people involved if they would mind me sharing their story on the adjournment here and ask the Government if it is able to assist in any way.

The email and communication came from a behavioural specialist in Wynyard who works with people with severe and complex disabilities, who are funded by the NDIS.

I am going to quote her email -

I am writing to you today as a personal matter … on behalf of my long-term friend, Melissa Reyenga who is currently in my office distraught and on the edge of a complete breakdown due to bureaucratic systemic oppression that continues to traumatise and neglect her son, Josh.

Melissa's youngest son, Josh, was involved in a serious car incident nearly three years ago, which resulted in catastrophic injury.

Josh has a severe traumatic brain injury, is a quadriplegic and has lost all bodily function.

Josh was placed in an MAIB house with five other, much older clients. Josh is 21 years old.

The care within the MAIB house has been reportedly negligent and as a mother myself, absolutely heartbreaking.

Josh is peg-fed and requires 2:1 supports 24/7. Melissa and husband, Danny, are fearful for Josh's wellbeing in his current situation, and his current levels of funded supports.

Melissa and Danny have desperately pleaded for Josh to be able to move into a supported independent living unit, as the current MAIB house is inappropriate for Josh's needs.

The long-term goal is for Josh to be at home with them in a purpose-built house with adequate and appropriate care.

Josh has no voice and not even a functional communication system as MAIB will not fund any other speech pathologist apart from their own.

Melissa and Danny have put in several requests for the NDIS to partially fund the gap but MAIB are saying they will not fund in regard to appropriately qualified therapists and an appropriate accommodation setting.

Yesterday, the NDIS rejected the request for funding to supplement MAIB care so Josh can be moved into a more appropriate accommodation setting with appropriate supports.

MAIB report they can only fund partially independent support, despite several reports stating Josh requires at least 1:1 support and many activities such as transfers at 2:1 support.

The NDIS refuse to pay the gap because they say it's MAIB's obligation to fund.

Imagine being in this situation. They have attached the MAIB document which I will briefly quote from in just a moment -

Despite the horrendous things I see every day with regard to a broken system - high suicide rates, both children and adults, increasing mental illness with a lack of adequate supports or access to tertiary mental health services, the second-highest Huntington Disease rate in the world, children with severe trauma symptoms and not enough therapists to do the therapeutic work, inhumane treatment of people in group homes and ongoing institutionalised care - this is the first time I have reached out.

We don't know who else to talk to. Melissa has a great team around her although no one seems to be able to explain or fix this family's current situation which is all about funding, not person-centred supports at all.

These parents are broken. Their son appears to have fallen into a loophole between two bureaucratic systems who continue to pass the blame and no-one is willing to fund appropriate services for a 21-year-old boy who will require enormous amounts of support for the rest of his life.

Melissa and Danny are not asking for the world, however, human dignity and decency with access to appropriately funded services to adequately care for their son who will continue to require a huge amount of support for their rest of his life.

I challenge anyone to think that they would not want that for their child -

The MAIB have pointed to the fact that this family must fill the gap in supports. This will mean when Josh resides outside the current facility/share house that his family will need to fill the gap in supports of approximately 100 hours per week, including active night shifts. This will render the family to a life of poverty, unable to complete their home for Josh to return to when modified.

For the most part, the NDIS has been revolutionary for people with a disability. However, there are gaping cracks.

Melissa and Danny feel they have nowhere else to go and don't know what to do next. Surely in a system that is supposed to support people with a disability they can't refuse to fund cases that are certainly not black and white and do not fit into pre-prescribed boxes. Despite being told Josh requires level 3 complex care, his current disability support agency are only able to provide level 2 support due to funding.

This is not right, Ruth.

They go on to ask for an opportunity to sit down with me and have a chat, which I will do when I get back to Wynyard.

I want to go to the MAIB letter, which sets out Josh's requirements; effectively they are saying there are two scenarios: one scenario sees a shortfall of 67.2 hours; the other scenario sees a shortfall of 103.71 hours. I will just read the MAIB commentary on those scenarios -

Scenario 1, above, details a shortfall of 67.2 hours of required care if Joshua is to reside in private accommodation whereas scenario 2 details a shortfall of 103.71 hours. This would need to be satisfactorily managed via either gratuitous care or funded care from an alternate funding provider to be MAIB.

Further to this, there will be variables to the total fundable hours that will exist in Josh's support plan that will need to be accounted for, such as the rate at which care is provided and any temporary additional need as recommended by a qualified professional or, if treatment or rehabilitation sessions are not attended, additional attendant care will be required at these times for Joshua.

And there is at least a positive in this -

The MAIB are committed to working with you both, building a support plan for Joshua until we are able to confirm the final arrangements.

Mr President, this is a broken family. They have been dealing with this for some time now. It is the first they have come to me and brought it to my attention. What we have here is a bureaucratic nightmare with a young person with serious needs and a family struggling to care for him and provide the care they really want to be able to give. I just hope the Minister for Disability Services and Community Development - and the MAIB is a GBE with a shareholder minister who I believe is Mr Ferguson and I will be contacting him after I have met with this family, but I wanted to raise it now. It is such an urgent problem that I would be happy -

Mrs Hiscutt - Usually when something like this is raised, I send the Hansard. Would you still like me to do that?

Ms FORREST - I would absolutely like you to do that because I will not be back up in Wynyard until after next week because we are here for two weeks.

Mrs Hiscutt - When the Hansard is out, that is usually what we do, so we will do that.

Ms FORREST - Yes, that would be helpful if you could do that because I hope to be able to go to them with some sort of commitment that this will be worked out so they can be supported because it is not good enough. It could be any one of our children tomorrow or today.

Mrs Hiscutt - I will do my bit and you keep doing your bit.

Ms FORREST - Yes. Mr President, I appreciate members' time to listen to that story. It is a harrowing story and I will update members along the way, hopefully with good news, but thanks for the indulgence of the Council.