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Fighting for Luca

Sophie Price01 October 2019

BB49

When BayBuzz last spoke to single mum Ashlee, she was feeling overwhelmed, beaten down by a system that had all but forgotten about her and Luca, her nine-year-old high-needs son. 

Luca has Friedreich Ataxia – a rare, genetically inherited disease that slowly debilitates its victims – causing difficulty in walking, loss of sensation in the limbs and impaired speech that gets worse over time. 

On top of this, Luca also has cardiomyopathy, a condition that thickens his heart muscle. With every day a constant battle with the authorities just to get her son’s basic needs met, Ashlee felt she had no other option but to reach out to BayBuzz editor Tom Belford to see if he might be able to make something happen, and he began looking into the situation in April and commented on it publicly in the July BayBuzz.

In Ashlee’s initial contact with BayBuzz back in April, she told us she was a “broken mum”. “We are isolated financially, struggle and are judged everywhere. I am one person battling an overworked system. I struggle every day. I cry most.” 

The first thing BayBuzz asked Ashlee to do was to write down every interaction she had in her efforts to help her son over the course of a month. 

She did this, recording that during May this year she spoke and emailed to more than 35 different people and agencies, most repeatedly – including staff from the Hawke’s Bay District Health Board (HBDHB), social workers, school teacher’s aids, various doctor and physio clinics and a potential respite-care person. 

Over a 30-day period, we counted 30 appointments and trips of various kinds, 26 phone calls, and 32 emails and texts, commingled with plenty of form-filling. All to try and get Luca some help. 

But, like all the months before May, Ashlee was getting nowhere.

This is a battle Heretaunga Women’s Centre manager Margot Wilson knows well. Margot became part of this story indirectly – as Ashlee had arranged a support group for mothers like her at the centre. It is a coincidence that Margot is a mother, just like her.

Many years ago, Margot too raised a son with special needs. She had a similar experience with the authorities who were meant to support her. 

“I have had this journey with my son, she said. “It is a pretty lonely journey, soul-destroying really,” she said. “You are using all your energy just to survive, then you have to find the energy to fight these other battles [with the authorities] to keep on surviving.”

As “soul destroying” as this might be, Ashlee is a mum – so she keeps at it. Now though, with BayBuzz in her corner. She gave us her written consent to inquire into her and Luca’s situation with those she has been trying to reach out to for years – in the health and education sectors – to see where the help for her son was, help often promised and not delivered. 

But even with a respected magazine behind you, the overworked system that has frustrated Ashlee is not easily navigated.

Penetrating the bureaucracy

After talking to Margot on August 7, I made contact with Luca’s school, where I spoke with the acting principal. I wanted to know what the school was doing to support Luca from an educational point of view; why his physiotherapy was being done by a teacher’s aide (as opposed to a trained physiotherapist); and, which department – Hawke’s Bay District Health Board (HBDHB) or the Ministry of Education – was to supply the physiotherapy for him.

She demurred, saying she would have to talk to her school board’s Chair before speaking to the media. And the following day via an email declined to be interviewed. So there’s more to be explored on the Ministry of Education role.

Also in early August, I had also emailed Luca’s healthcare providers at the HBDHB. A letter from DHB dated June 7, 2019 spoke about the care Luca was receiving – his speech therapy, vaccinations, an MRI request, and a further appointment to assess the pain in his legs. The letter also mentioned that there was a “meeting of professionals” – social workers, speech language therapist, a school representative and a paediatrician where they discussed how they “could best support Luca and Ashlee”.

I emailed the DHB officials mentioned in the letter to confirm what was actioned at this meeting. That email was passed along to DHB communications staff, who responded saying DHB was happy to provide a written response and to “please let us know your questions and we can work from there.”

I again requested interviews with the staff, explaining that we had written permission from the mother to talk to them about what is happening (or not).

HBDHB communications manager Anna Kirk replied, saying, “It’s over to the clinicians how they want to respond. They are very busy with the clinical care of patients.” I explained to her that my interviews would not be long and could be done in person or over the phone – “whatever is most convenient and least time consuming for the staff.”

Eventually Kirk replied with a written response on August 14 from Dr Phil Moore, the DHB’s medical director Communities Women and Children Service, who she said was “responding on behalf of his medical and therapy staff”. The response, here in full, answered none of the questions I wanted to ask:

“Luca has complex health, education and disability needs. A number of agencies, including HBDHB and Ministry of Education, are involved in supporting Luca and his mother. The agencies have met together, and with the family, to develop care plans. 

“It can be frustrating and difficult for children and families with complex needs to navigate through the system. We have therefore made sure Luca, and his mother, have a key contact person in the health sector, and another in the community, that they can contact when assistance is required.

“We are confident Luca is getting the best care possible through the local public health service, and we are continuing to advocate for his needs within the education and community services.”

Dr Moore said in his email that the staff did not wish to be interviewed. 

On August 15 I replied to Kirk, thanking her for the reply – but indicated I still had straightforward questions, such as:

1. Who were the agencies that met, as Dr Moore mentions in his statement?

2. What was the outcome of the meeting?

3. How many care plans were developed?

4. Who is responsible to see that each care plan is carried out?

5. Who is the key contact person in the HBDBH for Ashlee and Luca?

6. Who is the key contact person in the community for Ashlee and Luca? What agency are they from?

7. What has the HBDHB done to date to meet Luca and Ashlee’s needs?

8. Is physiotherapy a part of the HBDHB’s plan to meet Luca’s needs right now? If so, how does this work?

9. How will the HBDHB meet Luca and Ashlee’s needs in the future?

10. What does the best possible care look like from the HBDHB’s point of view?

Kirk emailed, reiterating that patient privacy is very important. “The information you ask for below would breach that privacy … If the mother wishes to share that information with you that’s over to her.”

I responded explaining that I understand patient privacy is paramount. “But this patient has waved that right absolutely – meaning DHB staff are free to talk about this case – as per the signed letter.” I explained that I was asking these questions because Ashlee did not have the answers (at the time I was emailing Kirk). “So can I please have them answered?” I again asked. 

Kirk phoned me, and we had an extended conversation, which I recorded, the substance of which was that DHB clinicians would not talk to any third party on the grounds of patient privacy, despite the parent authorising such inquiry on her behalf. This exchange captures the gist of the conversation:

HBDHB: Our clinicians are absolutely adamant they will not talk … all I can tell you is our clinicians, and there’s a lot of people that are working to support this family, they are completely committed to providing the best of care for him. And that’s all they want to say.

BB: Well it doesn’t appear so, otherwise she wouldn’t be knocking on my [BayBuzz’s] door … Stuff is not happening for this young mother. That is why she’s at my door, not yours.

HBDHB: Like she is always welcome to discuss this with clinicians, the door is always open.

BB: She can’t get into see them, Anna.

HBDHB: And, and she has numerous people looking out for her.

BB: And this little boy hasn’t had physio for god knows how long … She wants us to talk to you about his case.

HBDHB: If she feels that why doesn’t she have this discussion with the clinicians rather than via you?

BB: She’s been trying to for a very long time.

Not a terribly productive conversation, keeping in mind BayBuzz was asked by Ashlee to help her get answers, better still, action.

Turning a corner?

On August 16, Kirk sent an email reiterating that the clinical staff would not be interviewed. Kirk said that Dr Moore would like to inform me that a meeting was held on July 29 for the professionals involved in Luca’s complex care. “His mother was present at that meeting. The agenda was ‘for everyone to meet each other, to discuss everyone’s roles, tasks and goals’. Attendees included social workers and therapists from the DHB and school staff, CCS Disability Action and Ministry of Education staff.”

She said following this meeting a table was drawn up listing 18 professionals involved in his care and a guide for Ashlee as to who to contact for specific issues. “In addition two key people were identified to help Ashlee navigate through the system.” She did not elaborate on who these key people were.

I asked Ashlee about Kirk’s response. She confirmed that she did attend a meeting on the 29th and said that, from memory, others attending on the 29th included a DHB social worker, representatives from CCS Disability, the Ministry of Health’s Needs Assessment Service Coordination, DHB paediatric care, the DHB’s Continence Service, DHB and MoE physios and Luca’s school. 

Two key contact people, including a DHB social worker, were identified to help her navigate through the system, and this has proved useful. However, Luca still does not have a professional do exercises with him. And proper exercise is critical to slowing the muscle deteriorating effects of Friedreich Ataxia. So, there’s more progress to be made.

Broken system

Eighteen professionals and two helpers for navigation – one begins to understand the daunting complexity faced by this single mum. And this does not include the various non-profits, foundations, food banks, psychological counsellors and others Ashlee must pursue to get the full range of help she and Luca need. 

And when an ‘outsider’ like BayBuzz attempts to investigate and break the logjams, the bureaucracy, while populated by people of good intent, nevertheless circles its wagons, responds defensively (if at all), hiding behind disingenuous walls of ‘privacy’.

Fundamental change is required to a system that seems genetically ‘hard-wired’ to resist patient advocacy.

Margot Wilson said Ashlee’s journey is particularly lonely because she doesn’t have a support system around her. “That’s what’s really hard, and that’s where the whole thing is falling down,” she said. “I was lucky, I had an incredibly supportive partner. And we both came from big families. So, when we were really down, they came and helped and that’s what she hasn’t got.”

Margot said the system needs to address how it supports people like Ashlee – a young, single mum with a high-needs child. 

“What she actually really, really needs, is she needs some really good advocacy from someone,” she emphasises. “And that is the journey that often parents with special needs children have to walk themselves.” She said parents like Ashlee are fighting two battles – dealing with a high-needs child and then having to deal with a broken system to get the support she needs so she can continue to help her child. “Where do you find that strength? Ashlee, she has run out of fight really and yet ultimately she is the best person to look after her son, so she’s the person that now needs the support.”

Ashlee reports that while the progress is much better than before, there is still much her son needs such as better pain management, a safety and risk analysis of the home and having yearly appointments booked in advance so she didn’t have to keep chasing them up.

Ashlee reports that while the progress is much better than before, there is still much her son needs such as better pain management, a safety and risk analysis of the home and having yearly appointments booked in advance so she didn’t have to keep chasing them up. 

Ashlee has also been appointed a caseworker through Work and Income New Zealand, alerted by BayBuzz. “They have now fixed up all our entitlements and that’s all perfect now. We are in a more comfortable financial position now without the lack of WINZ support.”

However, she said without the media, she does not believe any of this would have happened. “[Since] Tom has been helping my family all agencies have been more proactive and my family has got to a point where I feel that everything is happening how it should be,” Ashlee said. “Luca will always have needs, but I feel like now when those needs are arising they are being met.”

Right now, help for Ashlee and Luca may be slow and still frustrating, but it is happening. 

The fact of the matter is, however, Ashlee – or anyone needing help from the very system that was designed to provide it – should not have to fight to the breaking point for her son, or need to approach the media in desperation to be heard.

BayBuzz will continue to watch over Ashlee’s and Luca’s progress and report on what can be done to achieve the advocacy support for her and similar cases that Margot Wilson so ably describes. 

Thank you Hastings Karamu Rotary Club

In Hawke’s Bay, people are always ready to help.

Through member Murray Cowan, BayBuzz approached the Karamu Rotary Club for volunteer help to repair an unsafe deck and porch at the home of Ashlee and Luca. These entrances posed risk to Luca, who cannot always fully control his movement. Not a problem!

Soon, on a Saturday morning about ten enthusiastic and well-equipped Rotary members, orchestrated by club prez Roger Mulvay, showed up and got the job well done in a few hours … with near military precision. Lots of laughs … far more fun than work.

Ashlee wrote: “Thank you everyone for all of the help today. We are very thankful for everything you have done for our family. I really didn’t expect so much support and I’m lost for words. Luca will benefit largely from the things done.”

Hats off to Karamu Rotary! 

Sophie Price01 October 2019

BB49

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