Failure of Support Services – A Friend in Need.

I have a friend who has been put in a situation that is frightening and unacceptable. This friend is an adult with autism, who lives here in New Zealand. She qualifies for support to help her live independently. But that crucial support has been taken away with little warning and no replacement, even though her actual entitlement to it has not changed. Trying to deal with the situation has caused her great stress and anxiety, and is already impacting on her daily life, and continues to be unresolved. I want to share her story with you – with her permission of course – because I think it is important to understand how our support systems can so badly fail the vulnerable in our community, and because I hope someone who reads this can offer advice and perhaps even a solution.

To make it easier to write this post I will call the person “Jane” and talk about them as if they are female, but the real name is not Jane and I will not confirm their gender either, in order to protect their identity.

Jane has severe anxiety, sensory problems, and depression. Talking can be terrifying – she often uses computer-based communications instead – but when she is comfortable and feeling safe she can talk and enjoys it. She needs support twice a day to help with daily tasks such as showering, dressing, dishes, rubbish, and opening and shutting curtains. She also needs support twice a week for domestic chores. This support is what allows her to live an otherwise independent life. Jane regularly tries to learn new skills and try new experiences, with proper support she has been taking part in her local community. She doesn’t have the support of people close to her who could help her with these tasks, including family, so she is heavily reliant on consistent and kind carers. She is also one of the most unique, thoughtful, caring women I have had the chance to encounter online, there is no malice in her, just a kind soul that needs a bit of help to get by.

Jane was receiving these much-needed supports until a couple of weeks ago, when she was having concerns about one of her carers. As is her right, she requested for a different carer to take their place. The service provider’s response was to remove the carer at issue, but they were unable to replace them, and they then told her they’d have to take out the other carer who had been helping Jane too because they were having difficulty finding people to cover the hours. She was only given about a week’s warning that she was about to lose all her helpers, despite the agency claiming they gave her a full two weeks notice. In the time they’d given her to find new carers, the agencies responsible for helping Jane have failed to find replacement help, so now Jane is in the situation where she had no carer and it has already seriously impacted on her well-being, such as in the taking of her much-needed medication.

She has a friend from out-of-town who has very kindly agreed to come help her out for the next few days, but after that she will be back to no help, and still has no word on when such help will return. You can only imagine the enormous amount of stress this places on someone who already suffers from anxiety and struggles with changes in routine.

When Jane first told me about the situation, I desperately wanted to help her. So even though I am not in her city, I made calls to her local support service providers on her behalf to express concern and to ask what progress was being made. I did this with Jane’s full consent, and kept her informed throughout of my progress, or rather disappointing lack of progress and the barriers I encountered that she had struggled with too. When I was finally able to get hold of the person in charge of Jane’s funding and in charge of finding Jane replacement carers, I found myself talking to a rude and antagonistic woman who went straight into complaining to me about Jane. Let’s call this short-tempered woman, “Katie.”

Katie told me Jane wouldn’t stop contacting her about the situation (understandably surely), and that she was already doing everything she could to help Jane. As this was a couple of days before the long Easter break and we would later find out Katie was going to be on holiday at least a week longer than the break period, you’d have hoped Katie would show a sense of urgency and an understanding of how important the situation was. Katie not only failed to find replacement care for Jane, she failed to communicate this properly to Jane too, leaving Jane confused about if and when the situation would get resolved. It was abundantly clear from the way Katie spoke to me about Jane, that Katie does not appreciate or understand the relevance of Jane’s anxiety in their communications. Jane needed reassurance, comforting, and above all else support, she got none of those things from the people responsible for finding her a new carer.

By the end of the conversation I had with Katie, it was me doing the calming of Katie, who was so agitated and annoyed at Jane’s efforts to get the carer situation sorted. I considered Katie to be deeply unprofessional in that conversation, and in later talks with Jane my impressions of Katie as being unhelpfully impatient and rude towards Jane were further confirmed. I do not think someone who gets so annoyed and lashes out when being asked to do her job, should be in that line of work.

I have encouraged Jane to make complaints about the people and organisations that failed her after the situation is resolved - that list includes the fund holder and the person responsible there for Jane’s service provision, the care organisation that pulled her care with inadequate notice, and in all likelihood should probably include the carer who she had to request be removed in the first place.

The days went by getting closer to the complete loss of carers, and in that time Jane did everything she could to try to get replacement help. She saw her doctor, she requested an advocate from a mental health community group, and she asked whether I would be willing to contact a mental health crisis team if she got to that point. I only wish I could do more. The advocate is hopefully going to be coming to see Jane this week, but whether that will lead to a replacement of services and when remains to be seen.

In the meantime, Jane is not provided with adequate levels of care, care she is entitled to under our health system. The impact of the loss of that care is hard to fathom. Not only are there the necessary everyday task that she cannot do for herself, and the impact of the interruptions of routine on her physical health, there is also the enormous impact this is having already on her mental health. She feels abandoned and has even wondered whether she did something wrong to be treated this way. It breaks my heart that she’s going through this, that she would be made to feel that it’s her fault. I am scared for her well-being. And now I’m reaching out to you.

What else can be done to help Jane? What else can I do, what else should she do? Is there some agency I should be contacting that I haven’t already? I’ve tried citizen’s advice bureau, I’ve tried her fund holder, she’s seen her doctor, she’s requested an advocate, we’ve both tried to put pressure on the people responsible for making the care reappear, all of which shouldn’t have had to be done in the first place. It wouldn’t be tolerated if we left young children, the elderly, or the sick without care and without information on when care will be available, so why do we have here an example of a person with a disability and significant mental health needs who is in this situation? We listen to government rhetoric about how great it is to have people being empowered to live within the community instead of in institutions, and yet the short-fall of service provision to make that happen means they are endangering our most vulnerable citizens. Jane has the right to live independently, and it is the best option for her long-term due to the nature of some of her challenges, all she needs is support and understanding.

She knows I have written this post and it is only being shared with her approval. She says she is OK today, because the aforementioned friend from out-of-town is with her right now. She will see your comments, so please offer her your love and support and reassurance, she needs it and she deserves it. And if you can help her, or help me to help her, please reach out and let us know.

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Medicating a Child for Autism. Part Two: People’s Reactions.

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The reactions that people have had to my eight year-old son starting on medication, have been mixed and surprising. I want to start though with the reactions I had expected, based on what I hear very regularly on national radio talk-back … Continue reading

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Medicating a Child for Autism. Part One: The Decision.

My eight year-old son has recently begun taking medication aimed at easing some of his autism symptoms. This decision was a hard one, reached only after many years. It is also a controversial and widely misunderstood decision.

I’m going to do two posts about medicating a child for autism. The first – this one – is about the complexity of the decision. The second will be about people’s various (and surprising) reactions to the decision.

By subsetsum on Flickr via creative Commons.

By subsetsum on Flickr via creative Commons.

There are at least five variants at play in making the decision on whether to medicate a child for their autism – it is not a simple or quick decision, and neither should it be. What I’m going to list is based on my own observations and experiences – you may be aware of other variants I haven’t considered, please share them with me in the comments.

The first is of course the child itself. There is no single “drug for autism:” If a child has autism, that doesn’t mean they require medication. The drugs that may help autism symptoms depend on the symptoms; are you medicating to address violence, OCD behaviours, anxiety, depression? And does the child have co-morbid conditions that are going to be relevant to what drugs are suitable or unsuitable? How old is the child? Have the symptoms reached a point where their impact on the child is severe enough to require looking into medication, and do the severity of the symptoms you are addressing out-weigh the risks that come with taking medication (the side-effects). There is of course also the way the child’s own brain and body reacts to the medication once it has been started; the decision to start taking a drug is never the end point, there is a need for ongoing monitoring of impact, changing dose, removing the child from the medication for short time periods or permanently, etc. There is nothing straight-forward about this, and that’s only the first variant.

The second is the family’s own preferences. Even if the child would or would not benefit from medication, a family that is very strongly in favour of or against medication is going to necessarily have an impact on what drugs (if any) are given to the child. A family that is turned down by own physician when asking to have their child put on medication, may deliberately seek out another doctor who is free-er with the prescription pad. Which brings us to the third variant.

The doctor. Doctors have their own experiences, knowledge, training, and may or may not keep themselves up to date with the latest research on drugs that can assist autism symptoms. The doctor’s preferences have a strong impact on what options are available to a family. Furthermore, a doctor who highlights side-effects and a lack of research on using medication for autism symptoms on children, is going to differently impact on a family’s decision on whether to medicate their child, than a doctor who paints the drug in the light of hope and relief. Of course a doctor’s personal preferences are also impacted on by the society in which they operate, which is the next variant.

The society and country within which the child lives, has a huge impact on the decision of whether to medicate. Some countries have very specific guidelines on best practice for medicating autistic children, some countries subsidize specific drugs of choice, some countries have a free public health system that makes it easier to access, or only have private health insurance schemes that make accessing drugs impossible for some even if the family and doctor wanted it to happen. The attitudes within that country – society’s views on whether medicating an autistic child is acceptable or abhorrent – shapes the way a government and health system operate. For example, some think you can just “talk” the autism away, which brings me around to variant five.

Non-medical alternative interventions. The decision on whether to medicate a child to assist them with their autism symptoms, is made alongside a consideration of what alternatives are available, what has already being tried, and what can yet be done. Despite what the majority of the public seems to think, medication is not the “easy” option. In our case at least, we have already done years of a large variety of intensive interventions that had nothing to do with drugs, and starting our son on medication is happening alongside an extension of those interventions, not alongside a removal of them. The decision to medicate has been made in light of what else is working or not working, and how urgent the need is to remedy the impact of the symptoms on his daily life; sometimes drugs can calm a mind and body enough so that other interventions that were not making much head-way, will have a better chance of future success.

In our situation, the decision to medicate is a reluctant and very controlled one. Our son starts on a very small dose, closely monitored by family, teachers and professionals, before the dose is slowly increased if necessary. Any changes in behaviour or physiology is noted and taken into consideration. We have been informed of potential side-effects and what to do if they occur. Our son will only be on the medication for about six months, by which stage we hope the other interventions we are introducing will have helped calm him enough that the medication will no longer be necessary, and we will take him off the drug slowly – again under professional guidance – and monitor the impact of its removal too. And yet on a piece of paper and on any statistic chart, all you’d see is the notification that our child has been put on medication for his autism, and that simple statement is what we as a family will get judged on – the various factors that lead up to the decision can’t be captured in a number.

The attitudes of others – and even the surprising emotional response I had to my son going on medication – will make up my next post.

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Autism rates are up? “That’s good!”

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I had the radio on while getting through the morning routine a couple of days back, when a story came on about the increase in autism diagnoses, sitting at about 1 in 68 is the latest figure out of the … Continue reading

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Individualism Disorder

I felt compelled to put this together after recent conversations I’ve had with professionals working with both my somewhat-abnormal children, and getting frustrated with people not recognising that someone can be an individual and have or not have a neurological condition. Similarly someone can have a neurological condition … Continue reading

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Guest Post on the Deeper Meaning of Exclusion

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Today I am honoured to share a guest post by a friend and fellow mother of a child with a disability. Antonia is mother to three children, including Max who has Down syndrome. Antonia’s experience of rejection in non-inclusive school … Continue reading

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Shame on Green Bay High School

I have been following the case of Green Bay High School excluding a student who has Aspergers and other special needs, a case that the school lost in the High Court. The school lost that case for very convincing reasons. … Continue reading

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Stand-down, Suspension, Exclusion, Expulsion; what do they mean and what are your rights?

A reader (and friend) recently asked me what rights someone has in New Zealand when they want to challenge a school’s decision about what to do about a student’s behaviour. In particular, she wanted to know about the processes and … Continue reading

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The “S” Word: Attacking and Defending “Special Needs.”

Lately when I use the term “special needs” – whether in my writing or my speech – I’ve been coming up against people who attack my use of the phrase. The arguments I encounter don’t come from a singular line … Continue reading

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What Rachel Smalley, and the public, doesn’t understand about mainstreaming special needs children.

Today a reader of my blog asked if I’d read a recent article written by Rachel Smalley, up on the Newstalk ZB website. The reader was not happy about what she read there, and having read it myself I also … Continue reading

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