NDIS: is the fairytale real, an explanation of the NDIS from a parent's perspective

Now to be honest in the interest of disclosure I need to admit that I am skeptical, I am not sure I have any faith that this Insurance scheme might be the answer to the funding issues we experience. Let me discuss how it feels to be denied, to be told sorry your son doesn't fit our criteria. No we can't register your son. No we can't help you, no no no. Hearing that word over and over again. While carrying a burden in your heart to fight for your child, know that they are suffering and in a sense you are helpless to relieve it. To feel that you are waiting for a downpour of rain, a thunderstorm and all you get is a sun shower. Up until now I have had to fight for every small part of therapy and funding that we get and to be honest it's not a lot. I know there are a lot of other parents in the same position, desperate, exhausted and dry. I know this story is echoed through many households in this country.

The challenge for me when thinking about the NDIS is to have an open heart and a open spirit, not to dismiss it before it has had a chance to show whether or not it will be of help to the thousands of households and families that are crying out for help. 

Where do we start, I started at a NDIS workshop held last weekend. I have provided a slide on this process for the visual people. This is the information that I was given about the application process (quoted text is in italics):

1. The person contacts the NDIS for assistance and can conduct their eligibility assessment. This can be done either via phone or through the citizen portal online from April 2013
2. If not eligible , they can still access tier 2 supports (please see N.B at the end of this process) 
3. If they are eligible, they have a planning and assessment conversation with someone from the National Disability Insurance Agency. Eligibility is confirmed, the person can explain their goals and context, and they can have a assessment of their support needs. This process is done a strengths basis, not a weakness basis. The present system relies on Carers and Parents to paint the bleakest picture possible to be even thought of being eligible for funding. 
4. Once assessed, the person chooses the supports needed to meet their goals and discusses how they will manage their plan.
5. The person then manages and implements their plan, monitors outcomes and asks for a review if anything changes. 

N.B Now to explain this further there are three tiers of support through the NDIS, the first tier is mainly about awareness, the second tier which provides information for those with a disability and their family and carers. Providing general information about the most effective care and support options within generic and community support groups and services. 

Tier 3, which targets 400,000 people who need specialised supports. Such as specific supports and facilities in the community, according to an agreed plan and resource allocation for each person.  Tier 3 is where it's really going to happen for most people for example for those who need their child/adult in residential care or need round the clock medical care, or for someone who has a significant physical disability. 

Please click on the above graphic for the original article this graphic was taken from

The statistical side At this point I need to bring up my first big issue with the NDIS, in my research (and hubby helped) we researched the Bureau of Statistics on how many Australians are living with a disability. 

"Just under one in five Australians (18.5% or 4.0 million persons) reported having a disability in 2009. A further 21% had a long-term health condition that did not restrict their everyday activities. The remaining 60% of the Australian population had neither a disability nor a long term health condition. Of those with a disability, 87% had a specific limitation or restriction; that is, an impairment restricting their ability to perform communication, mobility or self-care activities, or a restriction associated with schooling or employment." National Bureau of Statistics

Not sure if you are as good at maths as me:) out of all the people that are needing services the funding support which is the biggest issue us carers and people with disability have. The government are catering for only 410,000 needing funding support. There are two likely outcomes and assumptions one can make either the government will go over budget or that the criteria is likely to be too tight and a lot of people will miss out on assistance.  Given that the statistics tell us that over 4 million have a disability the funding that the NDIS will provide represents 9.7% of the population who have a disability. 

In reference to early intervention funding for example on my estimates (that is all I can give you) is that 13% of all children with a disability aged 0-14 have autism which is around 22,180 if you divide that in half and assume that these may be in the age of 0-6 needing early intervention, that is roughly 11,050 that have autism and may need early intervention funding. So in accordance with the statistics from the ABS this is in line with 1 in 8 statistic, so roughly 10,000 of the 80,000 figure for early intervention could be for Autism related disorders. The complex issue remains is that these figures are known to not truly reflect the rate and statistics of those with autism. "Recently, the Minister for Health in Australia stated: “There is no national data on the diagnostic profiles of people with autistic disorder and/or Asperger’s syndrome and/or pervasive developmental disorders.” (Campbell 2003, page 16680) and “the Government does not plan to establish central registers for autism, Asperger's syndrome, or pervasive developmental disorders. The provision of health and disability services for people with these disorders lies with State and Territory jurisdictions as is the responsibility for ensuring sufficient attention is made available from treating clinicians.” (Campbell 2004, page 19851)" Taken from Autism/ASD Diagnosis rates in Australia by Bob Buckley Evidence suggests that with the advances in diagnosis that this figure could be on the rise and continue to multiply. 

In conclusion let's consider the facts the government has worked together to pass this bill recognising the lack of funding for this generation of disabled people and for those gone before us. Secondly they are at least making the decision to do something about it. My greatest fear however is that it won't be enough. I fear children just like mine will continue not to receive help because they are not disabled enough or don't fit a neat criteria box. However I am so overjoyed for the families living with a disability of someone who in the past has not received enough assistance and will now qualify for some real assistance in their home. They may able to access resources they never could be, this is a good thing. For any parent real funding that will help their child achieve their goals and meet their needs is a bit of a fairy tale one that we might read about, but may never become a reality. But... do we stop believing no! Like any fairy tale the happy ending is always preceded by a struggle, hard times and a villain (whoever you interpret that to be), we all hope that we might get the happy ending we are striving for!

Our Journey of Selective Mutism has joined twitter!

Hi all, just letting you know that I have joined twitter, yeah I know I have taken my time. Please check out this blog's name: @oursmjourney I will be tweeting new blog posts as they happen. Watch out for a blog on:

- Follow up post on the NDIS

- What really goes on in our heads when we discover that our child has special needs

the origins of the ultimate fairytale

For anyone reading that is not from Australia, please be patient with me whilst I discuss a Australia specific topic. To start with, I need to tell a background story, how we come to discussing the NDIS.  Some time ago there was an inquiry into the state of disability services and funding in Australia. There is no surprise what was found when they delivered the results of their inquiry on the 10th August 2011. Some of the key points that they delivered were:

• Most families and individuals cannot adequately prepare for the risk and financial impact of significant disability. The costs of lifetime care can be so substantial that the risks and costs need to be pooled.
• The current disability support system is underfunded, unfair, fragmented, and inefficient, and gives people with a disability little choice and no certainty of access to appropriate supports. The stresses on the system are growing, with rising costs for all governments.
• There should be a new national scheme - the National Disability Insurance Scheme (NDIS) - that provides insurance cover for all Australians in the event of significant disability. Funding of the scheme should be a core function of government (just like Medicare).
• The main function (and source of cost) of the NDIS would be to fund long-term high quality care and support (but not income replacement) for people with significant disabilities. Everyone would be insured and around 410 000 people would receive scheme funding support.
• The benefits of the scheme would significantly outweigh the costs. People would know that, if they or a member of their family acquired a significant disability, there would be a properly financed, comprehensive, cohesive system to support them. The NDIS would only have to produce an annual gain of $3800 per participant to meet a cost-benefit test. Given the scope of the benefits, that test would be passed easily.
• It would be the assessor and funder, but not the provider of care and support. Services would be provided by non-government organisations, disability service organisations, state and territory disability service providers, individuals and mainstream businesses. Increased funding, choice and certainty are the key features of the recommended scheme. Advocacy would be funded outside the scheme.
• People would have much more choice in the proposed NDIS. Their support packages would be tailored to their individual needs. People could choose their own provider(s), ask an intermediary to assemble the best package on their behalf, cash out their funding allocation and direct the funding to areas of need (with appropriate probity controls and support), or choose a combination of these options.
• The NDIS would cover the same types of supports currently provided by specialist providers (but with sufficient funding), give people more opportunity to choose mainstream services, and encourage innovative approaches to support.
• The Australian Government currently provides funding to the disability sector of around $2.3 billion, while state and territory governments provide funding of around $4.7 billion - a total of over $7 billion.
• A separate scheme is needed for people requiring lifetime care and support for catastrophic injuries - such as major brain or spinal cord injuries. Currently, many Australians get poor care and support when they acquire such injuries because they cannot find an at-fault party to sue.

For families living with a disability the summary findings of this inquiry are no surprise. As parents we live knowing our children have a diagnosis that the government both state and federal are providing token efforts at supporting them, in the end costing the country far more. Not many families are ever financially prepared for the cost of having a child or family member with a disability, I wonder if we could ever be. 

In the past I have discussed the lack of services for my children, the peak organisation that is supposed to support and fund services for disability in Western Australia has such strict criteria that most families living with disabilities are rarely offered the support they so desperately need. The issue of a strict budget associated with increasing need is an issue most governments have not had the wisdom to approach must less solve. Within speeches and policy statements the resounding message of a band-aid solution to the worst issues within the health and disability industries in our states. 

The conclusion, the disability services that are provided and funded for in this country are often of a third world standard. I say this because we live in a flourishing country, we are blessed. However our children struggle to speak because of the lack of funding for speech therapy, those with permanent neurological conditions such as autism lose funding for services when their child turns six. In a country were we are wise and we know what to do, we are disabled by our lack of funding and initiative to do no further harm. In the next post I will discuss how from a carer's perspective the NDIS may impact you and your family. 

another way of treating Selective Mutism. Beware it's contraversial!

Now in the past I discussed the decision I have made in regards to medication in "to medicate or not to medicate" and I have been thinking recently on how I haven't thoroughly discussed the role of medication in treating Selective Mutism and at what point is it best to actually start down this mode of treatment. As my blog describes Selective Mutism is a journey and we all hope it is a journey that has an end, successes and some failures but we all hope that our children will recover, so what we do when it's not working? I think a parent needs to consider the following:

- Is the intervention program in place

Firmly I believe for one to embark on the medication route it is SOO important to make sure that your child has the appropriate support in place. This includes a few things a school program (sliding in), the support of a psychologist and a paedatrician, parent intervention and exposure,  an awareness of the complexities of Selective Mutism with all those working with your child. 

- An assessment of where your child is at

To know how far you have come, I think it is vital to know where they have come from using a tool such as the anxiety inventory scale that I have discussed before will be beneficial to assess how they are going. Also it helps us to identify where the focus of intervention should be placed and where the child is at in the stages of communication.

Most importantly I think we need to look at the symptoms of Selective Mutism that are present.  I found this link from the SMART Centre really helpful and thorough, it even enlightened me a little please check this out and mark/highlight the symptoms that are seen in your child "What is Selective Mutism". If we identify the symptoms then we can see when they disappear and watch the transformation of the child. 

- Is your child willing
This is not the be all and end all, but I think knowing where your child is at will help you in your decision. How do they talk about SM are they wanting to speak or are they reluctant. This can help you make your decision about cognitively if they are able to understand what is happening inside of themselves, their mind and how they can overcome their condition.

Once you have considered these factors I think the next thing that is helpful for any parent is to look at the research and experience of others in treating Selective Mutism with medication.

While researching for this blog I come across this question and answer newsletter from the Selective Mutism Foundation he discusses medication and how it works with Selective Mutism, you can read the full newsletter here (I have included it below this post). It is wise to take your research further, what I found interesting was the majority of studies in Selective Mutism and medication they refer to fluoxetine also known as Lovan. Some studies that have been carried out on the effectiveness of fluoxetine and Selective Mutism are:

Selective Mutism: A Review of Etiology, Comorbidities, and Treatment this article discussed Selective Mutism and the different models of treatment. The Author discusses the studies that have been undertaken in how medication can be used to treat Selective Mutism.

Selective Mutism: A primer for parents and educators 

Amongst other information this author discusses that when behavioural interventions have not been successful"Given these cautions, fluoxetine, or Prozac, is an antidepressant medication that has been shown to be quite beneficial in treating Selective Mutism, particularly when combined with other learning or behaviorally based therapies. In most, if not all cases, the medication can be discontinued after the child begins normal speaking because the child’s speaking will be maintained by reinforcement in the natural environment."

We can keep going as I discovered when I researched it, there is a lot research into the effect of medication in it's treatment of Selective Mutism. Now I have to admit there is a lot of negative press about medicating children. Some will tell you it is outright wrong. This I will say the opinion of a honest parent who wants the best for their child takes priority over other opinions. I don't believe for a second that a parent would medicate their child unless it is needed (maybe some).

There comes a time when a parent of a child with Selective Mutism may need to consider medication and is it something that will help their child. This is not a simple decision. But one I believe needs to be made with deep thought considering the impact on their lives and the commitment to the progress that is needed. Medication without a intervention program in place before it is commenced is lazy and ill advised at best. The effectiveness of the medication is reduced if we as parents aren't taking the steps necessary to enable our children to overcome their fear. 

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"You answered my question about Prozac in a previous newsletter. I’m ready to start looking into treatment for my twin 8 year old daughters. My question is: Who do I need to tell that they are on medication? Should I share this with their older sister, stepsister and stepbrother? I know of a teenager who was on Prozac when a friend found out, the whole school knew and teased her. Prozac has gotten such a bad “rap” I’m not sure who to share this with. 

Confidentiality is important. Nobody but parents and doctors needs to know anything about the psychiatric treatment of your children. Even in our relatively enlightened modern times, there is still stigma attached to treatment for mental disorders. We all wish it were not so, but this is a fact of life. It may be difficult to hide the fact of medication treatment from family members, so a parental discussion with siblings about the importance of confidentiality and privacy may be a good idea. Teachers and classmates do not need to know details of treatment or medications and it should be the parent’s decision who is told anything about a child’s treatment. It is a private matter between doctors and patients and should be treated as confidential medical information as required by law. 

For those of us who have chosen courses of medication to treat fairly severe cases of Selective Mutism, how long would you keep a preschooler on fluoxetine without significant improvement before you decide that a different medication should be tried?
The answer to these questions is not simple. In my practice, I have never encountered a preschool-aged child who did not respond to fluoxetine (Prozac). First, let’s define what is meant by “significant improvement” with treatment. Some clinicians and parents might view this as meaning completely well, with no signs of any emotional or behavioral problems. However, in research settings, it usually means that outcome measures showed statistically meaningful improvement with treatment, even when patients might still have “significant
improvement” with treatment. Some clinicians and parents might view this as meaning completely well, with no signs of any emotional or behavioral problems. However, in research settings, it usually means that outcome measures showed statistically meaningful improvement with treatment, even when patients might still have significant symptoms and not be considered well. I shall use it to mean something in between these two extremes: a child whom everyone involved agrees is functioning much better, even if some mild symptoms persist. 

There are several possible explanations why a young child on medication might show inadequate response. Perhaps the lack of response is due to a dose that is too low. Some children have side effects, which necessitate using lower doses, but most children tolerate Prozac 20 mg per day very well, and I try to get all kids up to this dose, regardless of age. However, doctors with less experience treating young children may be overly cautious, and never raise the dose to the effective range. This is perhaps the second most common reason for the lack of pharmacologic response in proven psychiatric treatments in general. The most common reason is that the patient does not actually take the medication as prescribed and does not tell the doctor that they are not taking it, leading the doctor to conclude that the drug is not effective for the patient. 

Another explanation is the time needed for medication response of social anxiety and mutism. Our first study of Prozac at Columbia University only measured treatment effects for 9 weeks. Many of the children were showing “reduced” social anxiety at the ninth week, but had not yet overcome the mutism in important settings like school. Dr. Black’s study at NIMH also found only partial improvement after 12 weeks. Our second study, designed to overcome this problem of time, examined effects of Prozac for 17 weeks. This study and clinical experience have shown that it may take 4 to 6 months at a reasonable dose to see a good response to Prozac, where a child is beginning to talk in school and has few symptoms of anxiety. 

If neither of these reasons is true of the case in question, I would consider raising the dose and adding a behavioral treatment plan. If an increased dose is not possible, due to side effects, I might consider trying a different medication if a child has no improvement after 6 months on Prozac. However, this has never happened on one of my preschool-aged patients, so I do not have any experience with other drugs for very young children. 

What drugs other than fluoxetine have been used successfully with young (pre-school) Selective Mutism kids?
As mentioned above, I do not have direct experience with other medications in very young kids. I do not know specifically of studies to examine the safety or efficacy of other medications in children under school age. Most research review boards have traditionally been reluctant to approve psychotropic medication studies in preschoolers, and our formal studies only went as young as age 5 after we showed the Institutional Review Board that Prozac appeared to be very safe in the 6-12 age group. In non-research settings I have used Prozac in children as young as four with good results. Other medications to consider include Luvox (fluvoxamine), which is similar to Prozac, phenelzine (reported in a single case report of a six-year-old with Selective Mutism). Anafranil (clomipramine), and some of the newer psychotropic medications for which use in anxious children has not yet been reported din the medical literature. Each of these has pros and cons as the next choice and none are formally FDA-approved for this use or age group (but neither is Prozac). Talk to your psychiatrist about these issues. 

Are there any studies available (or even in progress) that discuss the long-term effects of fluoxetine?
There are not specific studies in children, to my knowledge, which address this question systematically with a long-term follow-up design. Prozac has been the top-selling antidepressant worldwide for many years now, and has been used by many millions of people. Post-marketing surveillance by the manufacturer reports of adverse effects of Prozac (as required by the FDA) has not detected any serious long term problems from the medication, even in patients maintained on it for several years for illnesses such as Obsessive Compulsive Disorder and depression. There are studies, which indicate that it does not increase risk of birth defects in pregnant women, an importing fining supporting its safety in general. There is no evidence to date that it has any long-term harmful effects.

I have twin eight-year-old girls (fraternal) both with Selective Mutism. In kindergarten, they went for “play therapy”, I was told they would grow out of Selective Mutism, just keep “gently encouraging” them. Now they are in third grade and attending therapy. This doctor is trying relation therapy. They will both talk at home to parents, siblings, and relatives. They will talk at relatives houses. They will talk to friends at our house. When they visit friends, they will talk to them, but not the parents or other siblings. They will not talk at a friend’s birthday party. They will talk at family parties, or their own birthday party. They won’t talk at activities outside school such as Brownies, or gymnastics. They won’t talk to their friends in school, not even at recess. They will whisper to their teachers, when the teachers request a verbal response. I have heard other children have been “cured” with Prozac; can you explain the pros and the cons? At what age or point would you recommend oral medication? Can you recommend another form of therapy for us to try? 

This description of the symptoms of Selective Mutism in these girls is typical of children I have seen, although many children will not even whisper to teachers. This parent does not indicate whether whispering to teachers is a result of treatment or the girl’s baseline behavior. In the experience of patients who have come to play therapy, family therapy and me have not helped at all. More directive and behaviorally oriented approaches to overcoming anxiety have helped some children according to an uncontrolled case report literature (“uncontrolled” means the treatment lacked an experimental design necessary to prove scientifically that the treatment works and is more than a placebo effect). Such treatment should involve a stepwise “desensitization” plan for speaking in different settings, with rewards for each goal on the ladder, perhaps including, but not limited to, the relaxation techniques mentioned above. The idea is to start with the least anxiety-provoking new speech goal, such as speaking to a friendly neighbor, and as the child succeeds at the easier goals, gradually move toward the more anxiety-provoking goals, such as speech in the classroom. In my experience, if such behavioral treatment does not result in significant improvement in six months to a year (see the beginning of this column for my definition of improvement), it is time to try medication, since the child has not responded to non-medication treatment. 

Prozac works to reduce the excessive anxiety and inhibition, which underlies the mutism. Over time, it resets the hair-trigger for anxiety responses described above. Children under about 10 years old usually get an excellent result in four to six months. Older children, who have been struggling with the disorder much longer, and are much farther behind in terms of social skills development, seem to get the reduced anxiety and inhibition from medication, but often fail to change speech behavior in school with the same ease as younger kids. They may need additional work on behavior skills to overcome the fear of speaking and try new social behaviors, especially in school. They are struggling with more than just the anxiety; they must fundamentally change their self-concept and develop new social behaviors that other children mastered much earlier in life. It is no longer a pure anxiety problem, but has also become a character development problem. This is why I tell parents not to wait too long to try medication if other treatments have not succeeded. In the case of the twins presented above, non-medication treatments seem to have failed for several years. It is time to add medication

The cons of Prozac are the possibility of side effects, which are typically mild, transient, and easily managed with dose reduction. Most children do not have any problematic side effects if the medication is started with a low dose and gradually increased. In children with Selective Mutism, the commonest problems include excessive disinhibition (an overshoot of the therapeutic response, easily managed by lowering the dose), insomnia, stomachaches or diarrhea. Also reported in adults, but uncommon in children, are headaches, appetite suppression and increased nervousness. Rarely, as with any medication, a rash may occur which required discontinuation of the drug. "

I will

In the pressure of the chaotic moments of homework, cooking tea, getting ready for school in the morning and running backwards and forwards to therapy appointments. It can feel so crazy and busy. I took the time to listen to a song again that I heard on Packed to the Rafters, in a moment where the daughter was accepting her Dad's impending diagnosis of Dementia and the implications and changes that it was going to bring into their lives.

While watching this moment, I thought of the way it correlates to my life. The moment of realisation and surrender and acceptance, in diagnosis and the process it entails. The moments were you see the struggle in your child's eyes. The proud feeling as you know they are trying their hardest to succeed. The despair when you are dealing with less than desirable behaviour. Realising that sometimes your child has to conquer things that you never thought that they would have to face. The moment where you get a hug, or they hold your hand or they talk to you or want to spend time with you. Our children are precious. Things may change but some things stay the same, I have thought of a few things that I feel in this moment

I will fight for you to have the best opportunities in life

I will try to understand you, to know you and to communicate well with you

I will show my love for you in many ways

I will tell you as often as I can how proud I am of you

I will recognise your strengths and weaknesses and champion you on towards your goals

I will celebrate with you and I will cry with you

I will let you have a go, push you, empower you and sometimes makes things a little tough so you can grow

I will do everything I can so that others can see the potential that I see in you, it's immeasurable. 

Most of all I won't give on you, I will continue to act, move and be the Parent that you need me to be so you can be all you can be. 

Short but sweet, I have been overwhelmed by this song and how it made me feel encouraged NEVER to give up.  I feel tired, exhausted and brain frazzled some days. But oh it is worth it for my kids and it is worth it for your children too.

Be encouraged to keep going and keep laughing and loving. What you are sowing in deeds may not be realised immediately but one day yes one day it will bear fruit! As I write this I am nearly in tears, I am once again filled with purpose. What I am doing is worth the heartache, the blood, sweat and tears.