New campaign for autism coverage

Many autistic children in the Cayman Islands are going without crucial developmental therapies because the expense is not covered by their health insurance, campaigners have warned. 

Now parents are putting together a series of letters to government outlining the costs of treatment for their children. They want to see new changes to the law compelling insurance companies to provide essential coverage for children with special needs, in line with what many states in the 
US now cover. 

Roz Griffiths, of the Special Needs Foundation of the Cayman Islands, said it should be mandatory for essential therapies to be covered. At the moment, some policies do 
include some level of coverage, but many do not. 

“We have devised a petition which will go to the health minister and we are asking parents to detail what therapies their child needs and what it costs,” Ms Griffiths said. 

The range of treatment required for children with autism varies depending on the severity of the condition, with costs running to $100,000-a-year in some cases. Speech and language therapy and occupational therapy typically costs $100-an-hour, with a minimum of two hours a week required for most children. An intensive course of applied behavioural analysis therapy is also recommended in many cases. 

Most parents accept that not all the costs can be covered by insurance, but argue that some coverage would help. 

In the US, 34 states have specific autism mandates, which require insurers to provide coverage for autism spectrum disorder, including speech and language therapy, up to a certain amount.  

Florida, for example, requires the first $36,000 of annual treatment costs to be covered. Of the remaining states, most mandate some level of coverage. Only three states have no specific guidelines on autism coverage. 

Ms Griffiths said she hoped the Cayman Islands would look at the coverage mandated in the US and provide similar help to parents here. 

Health officials say they are sympathetic to the concerns of parents but have to tread a fine line between ensuring adequate coverage and keeping premium prices under control for the average person. 

Health Minister Mark Scotland said there are no plans to add treatment for special needs to the Standard Health Insurance Contract. He said the ministry was working with the department of education to get a better grasp of how many children suffered from autism in Cayman but no legislation was planned. He said adding coverage to SHIC would raise the cost of the plan too much. 

“Some children require this therapy all day or some have it two or three times a day and we certainly could not cover that under a Standard Health Insurance Contract,” Minister Scotland said. 

Emma Donaldson, co-administrative director of the Special Needs Foundation, said government could mandate that insurers offer policies that included coverage for autism spectrum disorder without having to include coverage in the standard plan.  

“The major hurdle for families accessing the interventions needed is primarily the lack of coverage provided by Cayman Islands health insurance,” she said. “It is this issue which adds financial burden and further stress to families with a child with special needs.”  

Ms Griffiths, a senior speech and language therapist, said early diagnosis and intervention could, in many cases, reduce costs in the long run. 

“If children don’t get therapy early they are not going to change, they are going to be behind in school, they are going to have social problems and they are going to need more expensive intervention later on in life,” she said. “Children with special needs, need help and parents shouldn’t be required to carry the full burden.” 

The Special Needs Foundation is asking for changes to the Health Reform Law to ensure the essential therapies are covered. Right now, coverage depends on what individual parents can afford. 

Morne Botes, whose 3-year-old son was diagnosed with autism last year, pays for a full-time ABA therapist. He said he was willing to spend the money now as intervention in the early years has the most impact. 

“We are feeling that we will spend what we need to now to give him the best possible chance,” he said. “We’ve been fortunate because we have the money to do it.” 

He said many families without the same resources would be unable to afford to go through the three-month process required to get an autism diagnosis, let alone get treatment. 

Another parent, who pays for a full-time therapist for her 3 year old, said the costs of getting her child the intensive therapies required ran to $80,000 a year. She said she did not expect the full amount to be covered, but felt some of the treatments, including speech therapy and occupational therapy, should be at least partially covered. 

“I appreciate that given the level of expense for these things there is a limit,” she said. “What I have a problem with is that as soon as you mention autism nothing is covered. 

“If a child has a car accident and they need 18 months of therapy to recover their speech that is covered,” she added. “If a child has never had speech because of autism and needs that same therapy, he can’t get it.” 

She said many parents who could not afford the required level of therapy were effectively being told, “tough luck.” She said the ABA therapy had already had a huge impact on her child and was potentially life-changing for children with autism spectrum diseases. 

Mervyn Conolly of the Health Insurance Commission, said: “We realise that autism is something that going forward we have to see how we can provide better benefits on an outpatient basis, but as soon as you start adding benefits that automatically raises the premium rates. “There is a razor’s edge between making it affordable and getting the right range of benefits. That is the challenge we have.” 

He added that there was some coverage available for mental health treatment on an in-patient basis and through the wellness benefit for out-patient therapies. 

mornebotes,carter.jpg

Morne Botes said therapy for his son Carter’s autism, which is not covered by his health insurance, costs around $80,000 a year. – PHOTO: Submitted
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36 COMMENTS

  1. for those parents there are some interesting treatments available now, I am sure you know all about these already but read a brain that changes itself as it outlines some really inspiring stories

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  2. for those parents there are some interesting treatments available now, I am sure you know all about these already but if not read a brain that changes itself as it outlines some really inspiring stories

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  3. I would like to thank the compass for the beautiful article and especially James for all the research he did and people he spoke to.

    On a funny note the most difficult part for me contributing to this article was finding a photo of me and Carter together were we are not swimming or covered from head to toe in Sunscreen.

    I have had so many e mails from supporting parents this morning. Thank you.

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  4. There also must be mechanism in place which would prevent insurance companies from singling out more expensive clients and charging them more. As we’ve seen in one of recent articles, insurance company can blame you for being a loss-making customer and charge you more. So there is no sense in getting 80,000 coverage if next year they charge same 80,000 back from you.

    Thorough and deep investigation into costs and benefits of healthcare in Cayman, by team of professionals is required to fix it properly. Too complex for government which can’t decide on much simpler things like berthing facility.

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  5. The problem is much deeper, unfortunately. For now, insurance companies are allowed to refuse coverage completely if a person has either a genetic condition or any other non-hereditary pre-existent condition. I obviously do not speak of local Caymanians, they are covered by government. Expats who fall under these categories are forced either to get coverage from government, which is no way similar to what is offered local people, it is very, very limited. Or they face a private policy which has exclusions related to their condition.
    Don’t get me wrong, I am in no way comparing the coverage for locals and expats, absolutely not. Governments need and must take care of their own. What I mean is when the person requires services after a car accident, like it was pointed out in the article, they are usually covered, but the same is not applied to people with genetic conditions. But that is also something that’s happening outside of our control! This person is not guilty of having a genetic condition!
    Unfortunately, I speak from experience here. It is _very_ expensive to try and provide these services to your child. We did it and it meant a lot of cutting back, believe me. But it made a difference and paved the way for the future, which is a lot brighter now.

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  6. Why is no one talking about WHY so many children are being diagnosed with this illness? Why are 1 in 6 boys born today have a chance to develop autism? I agree that treatment needs to be in place but can someone please start the discussion on WHY this is happening. Allow me than… Pestcides in our food, GMO crops infesting our grocery stores, poison in the 30 vaccines a child has to have before they can walk, mothers consuming diet sodas whilst pregnant… the list goes on and on but the CAUSE of autism seems to be a non issue. Wake up people!

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  7. Thank you Morne for speaking out and facilitating this article with James and the Special Needs Foundation. We too have a daughter diagnosed with autism, aged 3 in 2011. To date, insurance has paid for a maximum of 20 sessions of therapy per year at a rate of 80% of their theoretical cap of US66 per session. It’s a joke. Anyone who has therapy knows that a session of SLT, PT or OT costs approx CI85-100. It must be more than a decade since it was charged at US66. We used up our allowance by the end of February every year. Oh yes, and might I add that SLT, PT and OT are all lumped together as therapy, it is not 20 sessions of each. Anyone on the spectrum is likely to require all three therapies. Furthermore, ABA therapy, a scientifically proven treatment for children on the spectrum is not covered at all by our insurance company. Neither is OT. All children on the spectrum need to be given a fair chance and there is no reason why insurance should not be mandated to cover autism. It is discrimination. Why is it any different to diabetes? Early intervention is key to success. The saying goes ‘pay now or pay (a lot more) later’.

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  8. I have a Caymanian son with Autism.

    I’m wondering why this person who recently relocated to Cayman – a retired person in his 30’s – thinks the CI Government owes his family anything.

    Should we rewrite insurance law (again) so more people here cannot afford coverage? Should insurance cover treatment for Autism – yes!

    Are you the appropriate spokesman – no!

    How fortunate your child is that you can afford proper care for him. Most of us are not so lucky.

    Should the CI Government give this retired person of independent means free services when they can’t meet the needs of their own kids with problems?

    This is not the US or South Africa – this is a tiny island that this person chose to relocate to – who exactly do you think should pay the 80K in services this child gets per year?

    Charity should start at home. The CI Government should help it’s own people and not a Johnny come lately in his 30’s that retired here.

    Perhaps South Africa and its health care system are calling you back.

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  9. To madazhell,

    He is not asking the CI Government for anything, he is talking about insurance coverage, which he pays into. It doesn’t matter which country anyone is from, certain things should be covered by insurance regardless of where you live. Everyone has a right to proper health care.

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  10. Madazhell,

    Why do you have to write such spiteful and unnecessary comments? You obviously have some anger issues which you need psychological help with. Also you are obviously not very intelligent or unable to read. Morne is not asking the government to pay for his son. If you read what is written you will find that he is concerned that whilst he has the means to pay, he knows full well that others do not and he is seeking the law to be changed to help those less fortunate than himself to be covered by insurance. How on earth can you turn this into a Caymanian vs expat issue? And lucky him to be able to retire in his 30s – I wish I had been so successful! What have you done to help other Caymanians with children with Autism?

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  11. This is not an expat argument nor is it a discussion about the CI Govt paying for expats to have therapy. It’s about a group of people lobbying the Govt to change the health reform law so that every child with autism (or any other special need for that matter) has access to the therapies that they require. Changing the health reform law so that insurance companies can’t discriminate is simply the right thing to do for all special needs children wherever they live. The Health insurance companies are very quick to take our monthly payments and then they get the right to choose what they cover. Morne and the Special Needs Foundation are lobbying the Govt on behalf of all of us with special needs children to improve the lives of all our children. We should be thanking them.

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  12. To shakingmyhead,
    Insurance companies are ‘for profit’ corporations. If insurance companies are forced to pay tens of thousands of dollars per year in new services those costs will be paid for by all policy holders in Cayman. Premiums that put health insurance out of reach for so many Caymanians already will skyrocket even higher. The insurance companies won’t absorb these costs they will simply pass them on to us. That is the problem with the plan.

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  13. I completely agree with having coverage for people with disabilities. Additionally, I wish to add that our healthcare system is not currently focused on assisting people with problems such as autism and brain disfunctions. The occupational therapist job at the Cayman Islands hospital only pays a mere CI54,000 per year for a certified professional that has gone through 6-8 years of schooling. That is outrageous! Especially when a beginning salary in the USA for a person with 1-2 year experience is 70,000 plus. Have they ever thought of the reason why they cannot find a proper therapist from abroad? Why are we not focused on paying an appropriate salary for specialists that can assist our children? Occupational therapists are one of the most important resources to a hospital, not only for our children but for people that have been in serious accidents, heart attack/ stroke patients, amputees, etc… Maybe it is our medical system and the CI Government that should figure out exactly what an occupational therapist does so that can encourage insurance companies to provide coverage in a way that will assist families in supporting a positive life for their future and the future of all people living in the Cayman Islands.

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  14. Dear Madazhell (Mad As Hell)

    My name is Morne Botes and I never hide behind an Anonymous internet name.

    I did not ask the CI Government for any handout. Feel free to re-read my comments in the article. My main goal is to help ALL children with special needs.

    You made many hateful remarks in your post and I will not respond to any of them on this forum as I would rather enjoy the positive comments and feedback that this article recieved today.

    As a parent of an Autistic child I would like to invite you to the next Special Needs Foundation meeting at Hope Academy.
    Feel free to approach me and make yourself known and we can see how we can help you deal with the difficulties of having a child with special needs, no parent or child should suffer alone.

    My wife also regularly attend the parent support group at The Wellness Centre which I would suggest you attend.

    If you feel you would like to meet personally for a private confidential chat and a coffee my email is [email protected].

    All the best to you and your family.

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  15. WOW.

    Nice to see all the friends and or family of Morne displaying their full support!

    Hateful comments? No – truthful.

    Hateful is stating you must have anger issues which you need psychological help with or you are obviously not very intelligent or unable to read.

    As I stated – you are not the appropriate spokesman. You are able to pay for your sons care – and good for you.

    If you want to help all children with special needs as you state – why don’t you use some of your non payment of tax savings and open a center for the islands Children With Special Needs.

    Bring in these qualified OT, and Speech/Language Therapists, and offer rates that all can afford. Why spend 80K on one child when you could help 4 or more?

    Put your money where your mouth is – subsidize the care of others in need. Go where the insurance companies fail to go.

    It’s unnecessary to whine when you have a plate full of cheese.

    This is most certainly not a Caymanian vs. expat issue so let’s not make it one.

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  16. For the record –

    I never stated that you asked the CI Government for a free handout.

    YOU are however, asking the CI Government to change insurance laws, and yes, not just for you.

    Where insurance fails, Governments and or States take up the slack.

    I’ve been to The Wellness Center as well as the Special Needs Foundation meetings – how do you think I know about you?

    But thank you just the same for pointing out that these services exist.

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  17. The insurance companies in most first world countries are not allowed to exclude autism and they all make a profit. Why shouldn’t the insurance companies in Cayman be mandated to include autism and also be mandated to cover ‘pre-existing conditions’? It is mandatory that we all pay for health insurance but then when it comes time to make a claim, we are denied. Why is that fair? The premiums we pay are already ridiculously high, relative to anywhere else. These companies are clearly making a lot of profit. It is ridiculous to suggest that anyone should use their own money to pay for treatment of their own children or anyone else’s for that matter. That is the whole point of health insurance. As long as the CI Government does nothing to change the current situation, these insurance companies are laughing all the way to the bank.

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  18. At least Morne is a spokesperson … Madazhell what have you done? and who are you anyway hiding behind your ridiculous pseudonym? By what right do you demand how other people spend their money?

    As it happens there were plans (by an expat to the extent that is relevant) to start such a not for profit autism centre to provide therapy for Caymanian children, but this has had to be temporarily put on hold due to having to deal with a serious health issue.

    This is a campaign not a whine … a campaign to ensure that insurance coverage includes autism treatment. If it can be done in the USA and other countries, then why should it not be done in Cayman? Why attack Morne for standing up and being involved with this? Is it because you are just jealous of his success? He doesn’t have to do any of this and does not deserve to be attacked for trying to do good for other people.

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  19. Oh Gaylene…

    We do not have the population to support this.

    Wouldn’t it be nice if rainbows sprinkled Skittles.

    Funny how many people are interested in day old news!

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  20. Dear Madazhell

    My invitation stands to help you however I can. Contact me.

    I find it hard to believe that your child has autism because you state this is day old news!
    For us living with children with Autism this is a life long commitment.
    Also everyday new families find out in Cayman that there child is autistic and when they google CAYMAN Autism they will not only find this helpful article but also all your hateful comments.

    You also state Put your money where your mouth is – subsidize the care of others in need
    I do not feel it necessary to list the monetary charitable contributions we make every month on this forum, but if you would join me one day I can go show you what we have done in our short time on the island.

    Please calm down, you are yourself a spokesperson for your child and every Caymanian as many foreigners read your posts.

    I will not be responding again on this forum.

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  21. Day old news – as in the story was in yesterdays paper!!!!

    Good for you for being charitable! We all should give what we can – Karma is real.

    You have missed the point completely. If you want to help, really help – THERE ARE THINGS YOU CAN DO as I suggested not demanded.

    Asking the CI Government to change insurance law (again)is a pipe dream where your figures are concerned.

    I have been fighting this fight much longer than you.

    None of my comments are hateful – too bad you read them that way.

    Did I state that I was Caymanian? No I did not.

    Good day to you and best of luck.

    You will need it.

    Signed,

    Reality Bites.

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  22. Clunk!

    I have just figured you out!

    You can only see yourself as a victim.

    This is why my attempts to empower you have all fell flat.

    Maybe when you’ve played this game as long as I have – you’ll better understand the hand you’ve been dealt.

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  23. All parties in this discussion have very valid takes on the issue. Let’s overcome the fight and focus in the key points.

    1. Autism is not currently covered by health insurance in the Cayman Islands.

    2. Due to the number of workers in this country, autism cannot be covered by health insurance without significantly increasing the insurance premium for everybody.

    In regards of these conditions, the options could be:

    1. Offer a special insurance type for parents whose special needs children require such coverage. Yes, it’s impractical since the premium would be astronomical, and that in case the companies would be offering such coverage. To avoid getting into a new fight on pre-existing conditions loop, let’s just accept that this will not happen.

    2. Socialized medicine, which is the model that prevails in the United Kingdom (and Canada, and Mexico, and…) but I know, I know, I know… addressing this is anathema, due to the overwhelming fixation with the USA as the most desirable model… let’s not fight here either.

    So those are the items in play, and both are knocked out.

    If I were to bet, I’d say that without the existence of a foundation things will not change.

    A foundation as proposed in previous comments, one bringing Bring in these qualified OT, and Speech/Language Therapists, could work, even with the pitfalls and challenges our contemporary world, in where the crisis is over, presents. Clearly, such foundation would require powerful sponsors from abroad.

    A word of caution: when the umbrella is so wide, it fails to covers everybody. More than a foundation focused on special needs, the politically correct term that encompasses many pervasive developmental disorders, what is needed is an autism foundation. And, to even tight more the screw, a foundation focused in classically dire forms of autism, including Rett’s syndrome comorbidity. Highly functional forms of autism, Asperger syndrome included, usually don’t require this attention type. They tend to work well if home management, social support and school tolerance is granted.

    Finally, Carter will do good, because, despite of monetary or other struggles types, has a very committed father that connects with and love him.

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  24. Dear Gerardo

    Thank you for the constructive comments.

    Nigel and Gaylene have been working to put together such a service of therapies, but unfortunately their daughter had a brain tumour and this year they are fighting the cancer.
    I am sure this plan will get back on track when they catch there breath.ne

    Gaylene and Nigel was the first parents of an Autistic child that we met after Carter’s diagnosis and they introduced us to all the therapies available.
    We share our ABA therapist between 3 families to benefit all. She starts at 7:30 every morning to accommodate everyone.

    Another Mother at the Special Needs Foundation did a fundraiser to bring an MRI machine to the hospital for kids.

    There are many great people at the meetings working hard to make life easier for all.
    Hopefully the numbers will increase more at this months meeting as we need more parents who want to make a difference.

    Once again thanks for your kind words.

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  25. Thank you, Gerardo for your post. It’s apparent that you know what you are talking about.

    One point I don’t agree fully with you on is the need for powerful sponsors from abroad.

    The wealth of these islands needs to be and should be tapped into and all the big talking do-gooders need to step up to the plate.

    There is no reason people offering specialized services to special needs children cannot reduce their fees to those in need.

    Attorneys work pro-bono, doctors do voluntary work, so why not these professionals?

    There is plenty of money on this island as can be attested by 80K being spent on the care of one fortunate child.

    This article was about amending insurance law and it’s obvious by the comments that other issues are at hand.

    And in speaking to that, Nigel and Gayleen, my prayers and positive thoughts go out to your sick child.

    One of the most heart wrenching things for me to see, hear or read about, are suffering children.

    One of my charities is St. Jude Children’s Research Hospital and my next donation will be in honor of your child.

    Back to the topic at hand –

    Gerardo hit the nail on the head in ruling out the options of socialized medicine and insurance covering more here.

    Gaylene, your post that states It is ridiculous to suggest that anyone should use their own money to pay for treatment of their own children or anyone else’s for that matter is disturbing.

    Our children are our responsibility. Not the Governments, not the states, OURS.

    Currently, you do not live in a place that offers socialized medicine and if that is what you want, I suggest you relocate to a country that offers that.

    You do have a choice.

    But I’m going to guess that by your family residing and working in this tax free country it outweighs the benefits you’d receive form living in a socialized country such as the UK and paying tax.

    This is a simple case of having your cake and eating it too.

    Wanting the small population of this island to absorb the high costs of medical care for a very small minority is not realistic and makes for a really important debate for Cayman and contrary to what I stated in an earlier post, this, to a certain extent is an expat vs. Caymanian issue that poses unique conflicts with Cayman being a tax free jurisdiction.

    Additionally, I would like to direct your attention to http://apps.who.int/rhl/access/en/index.html to see that the World Health Organization lists Cayman Islands as a Developing Country (formally referred to as Third World).

    You will find that we are listed along with Haiti, Malawi, and Iraq to name but a few. Yet, somehow this country is to be expected to meet the needs of millionaires who believe that anyone should use their own money to pay for treatment of their own children.

    While I have tremendous sympathy for all of these children, this entire line of reasoning just doesn’t make sense to me.

    Bearing this in mind, it’s hardly conceivable that our insurance laws could be in line with those 34 states in the US that have specific autism mandates as was mentioned in the article.

    Best of luck to all and remember April 2nd is World Autism Day Please Join Together Light it up Blue!

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  26. oh brother madazhell,

    you again spread your hate:

    Currently, you do not live in a place that offers socialized medicine and if that is what you want, I suggest you relocate to a country that offers that.

    You do have a choice.

    But I’m going to guess that by your family residing and working in this tax free country it outweighs the benefits you’d receive form living in a socialized country such as the UK and paying tax.

    This is a simple case of having your cake and eating it too.

    Would you like all expats to leave? Sure sounds that way. Well with people like you, we will leave and then what will you be left with? The Real Estate market will crash, all the banks will leave and you’ll be left with the third world country that Cayman is, without us, you will lose everything. So keep it up, you may get your wish. You won’t be able to feed your kids let alone pay for insurance.

    Caymanians move to first world countries and I can tell you this, those countries would never treat them the way you treat us.

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  27. I’m shaking my head at you!

    YOU PEOPLE ARE UNBELIEVABLE!

    Can you say M I S C O N S T R U E!!!!

    Treat you badly by speaking the truth?

    I have posted nothing hateful. Unfortunately, the same cannot be said of others.

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  28. Further more –

    Look at what you have stated, you have basically said meet our demands or we shall all flee and you will all starve to death.

    How lovely.

    Once again, have I stated I’m Caymanian? Stop implying that I did or I am.

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  29. Dear Madass

    Please contact me so that we can find you gianful employment and see how we can help in getting your autistic child all the therapies he/she needs.

    No parent has to suffer alone, there is a whole group of people on island that can lend there support to you.

    Thanks
    Morne Botes

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  30. According to the comments relating to this article, I am the following:

    Unemployed
    Treating people in a negative way
    Possibly lying about my child being autistic
    Demanding how others spend their money
    Attacking someone
    Possibly jealous of someone’s success
    Hateful
    Spiteful
    Making unnecessary comments
    Have anger issues
    Need psychological help
    Not intelligent
    Unable to read
    I am Caymanian and my thoughts and opinions represent all Caymanians

    And most astonishing is my child is not getting the service he needs.

    What a wonderful list of attributes and assumptions gleaned from personal opinions that happen to differ from yours.

    You people have missed the mark completely.

    This is a funny side of the fence to be sitting on. The view is really quite unbelievable.

    What an eye-opening experience.

    I thank you all for that.

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