Financial Struggles Plague Special Needs Families

Canada
February 29, 2008 5:34pm CST
I know this first hand as my son's private therapy is very expensive however we have no other option as early intervention is key with Autism and he is still only #29 on the list where the government would cover this....He has been on this list for over two years now and started out at #98...This is all very frustrating!!! We were fortunate to get several charities to help out in 1997 but as of the first of January those funds ran out and now we are paying ourselves...Money is depleting! Thankfully we are still eating normally and able to pay our pay our bills as we have been living pay check to paycheck but for how long..... Can't keep this up much longer!!! Not only is there this special therapy but also my son has orthodics ($350) Thankfully paid for by a charity. Also, we pay a respite worker so that we can have a much needed break :) It is all very expensive.....Here is an article that I ran across from my In box that sparked my wanting to post this: http://munews.missouri.edu/news-releases/2008/0228-autism-finances-sharpe.php So, for those with special needs children...No matter what the disability whether physical or mental...How do you deal with these added expenses? Do you have help from government, Charities, or other family members? Are you all on your own in this? Have you second mortgaged your home? (We rent so we can't do this! But I know other parents with autistic children that have to cover cost of therapy and special diet etc.) Have you taken out a loan or line of credit? How do you keep all the regular bills paid and cover all these added costs of therapies, equipment, special foods, etc? Appreciate your input here :) ~Heavens~
4 people like this
5 responses
@weemam (13377)
29 Feb 08
As you know our son Ross has CP pal , There is not much going for this country at the moment but I must admit we had lots of help with Ross from the National Health Service , It must be really hard for you , I think it is hard enough to have the worry of a disability in the family without having to worry about medical bills too, God bless you pal xx
3 people like this
• Canada
1 Mar 08
Thanks so much for your care and concern :) If you read my response above to cookie you will see that I do receive some financial assistance each month and his diapers are fully paid for of which I am truly thankful :) I do not know what we would do without this money coming in each month however, it just does not cover the astronomical cost of his therapy! :( HUGS ~Heavens~
2 people like this
@violeta_va (4834)
• Australia
1 Mar 08
I know how much things are and man is that a sad fact knowing that lots of kids have to miss out. My son has problems with his speach doctors were very quick to put it down to Autism we simply can not belive this because it was done in a rush and procedures were not followed (only the speach pathologist examined him for 10 min no pediatric doctor and no psychologist). Speach therapy is $75 per 30 min but we cant use it right now as my son has issues with his ears and untill he has his adnoids and tonsils out its a waste of time and money. he went from saying 80 words to over 300 in 3 weeks just by having his ears cleaned. I am lucky the goverment gives me pension to look after him, they regulary give us a bonus to help with this and that, we are covered by the public system for lots of things and I have friends and family to help me when I need help.
2 people like this
• Canada
1 Mar 08
My Boy does not go without as we sacrifice for his therapist to continue coming to work with him as the benefits are huge! As for your son having Autism...that is what my son has and if yours got his ears cleaned and jumped that hugely in his vocab then you are likely right unless of course there are other difficulties with him like eating, sleeping, toe walking, tantrums, flapping, inappropriate play for his age,repetitive behavior, etc. Thankfully here in Canada Speech therapy and Occupational therapy are covered by the government but my son's ABA Therapy is not and is $26 an hour!!! We get a monthly check for $420 and my baby bonus is much larger than everyone elses but it is just not enough! :( We make do though but I don't know how much longer qwe can do this for! Unfortunately we don't have any friends or family who are able to help :( HUGS ~Heavens~
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• Australia
1 Mar 08
No he dosnt have any of that that is why we dont belive he has it.
2 people like this
• Canada
1 Mar 08
My suggestion is that you keep on fighting for the correct diagnosis and get a second opinion...I would ask to see a developmental pediatrician if I were you :) they will do blood work and then maybe point you in the direction of a proper specialist who can diagnos properly. ~Heavens~
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@mummymo (23707)
4 Mar 08
I know that this doesn't help you sweety but when I hear of this situation I am so glad that I live in the UK and have the National Health Service there for all to use! Niamh while not actually special needs has had many 'extra' needs over the years including speech therapy, physiotherapy, occupational therapy and orthotics! These are all covered by the NHS and i dread to think how we would have been able to live without it! I think it is a disgusting situation that in a country like the US there are so many struggling to get and pay for the treatment that their children need! I mean lets face it what is the point of being one of the richest countries in the world and a superpower if you cannot make sure that the help and support of those most vulnerable in society are not met! i do so hope that you could get the help you needed NOW! If I had the money I would pay for everything you need myself - if I ever win the lottery you will be one of the first to hear from me! Keeping you in my prayers my darling heavens! xxxx
2 people like this
• Canada
4 Mar 08
Thanks so much my dear Mummymo *HUGS* My sons speech therapy and occupational therapy are all covered here in Canada and his orthodics were paid for by a charity. Another charity is covering all James' diaper costs until he is trained or reaches the age of eighteen which is a huge help! :) what isn't covered is his specialized ABA Autism therapy which is one on one and intensive and occurs in the home...He has been on a wait list for government assistance on this for over two years now and started out at #98 back then...Now he is #29 and until he reaches the top it is on us to fund this however we can...Thanks so much for your offer and I know you would as you are such a wonderful friend of which I wish was much closer to me at times.... Love and Hugs to you ~Heavens~
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@mummymo (23707)
4 Mar 08
So sorry I said US instead of Canada - I do know you live there but I will insist it is the US! Canada too is a wealthy country with a lot of power and I think it is beyond comprehension that all of James needs are not met by the government! If we here in the UK can do it I am sure that the Canadian authorities could do the same if they so wished! I too wish I were closer , maybe one day we will get to meet you never know! Can you imagine if I brought weemam and came for a visit! Niamh would adore james as I am sure Niall would too - they both love younger children and Niamh would want to do everything for him which I am sure he would not like! Oh well maybe one day we will get to see them meet! Would have to have someonesmom there too though , right? xxx
2 people like this
• Canada
4 Mar 08
Oh yes, the four of us would be absolutely wonderful!!! And I really hope it happens somehow some day :) I know that it is awful how Autism treatment is so expensive and so many have it and the government just does not do enough for us here!! If he had any other disability everything would be covered!!! It is so sad because really all these children need is to be taught by a special method and it is beyond my comprehension why the government here can not do more to fund ABA Therapy and keep these children out of the "Homes" and able to contribute to society when they grow up...I do not understand why the government does not want this!? So many families I know have put second mortgages on their homes and drawn out huge bank loans etc. to fund this for their children....Only we do not own a home but do have a line of credit at the bank but to go into debt.....No family should have to do that for their child it is just so sad!!! I truly do thank you for your love and support my dear friend! :) *HUGS* ~Heavens~
1 person likes this
@someonesmom (5765)
• Canada
4 Mar 08
My dear friend, mummymo, I just had to jump in here, and thank you from the bottom of my heart, for your love and concern, for 'my family.' I would so much love to meet you, your kids, weemam, and any of her family that care to join us. I sincerely wish that 'all of us' could visit you in 'bonny Scotland,' but it seems to be (sadly) only a dream. I don't even like to fly anymore, but would 'have to' make an exception, if this were a reality. Of course, I'd love to see you all visit Canada too. Thanks once again, for being such a true, and dear friend.:) xxx
• Canada
4 Mar 08
Hi heavenschild, I do hope this ends up 'in the right place.' I was not going to do a separate response, after what happened.:( I've read through your entire discussion, with great interest, and everyone seems to have drawn the same conclusion. It is so very unfortunate, and just plain wrong, that 'our Canadian government' views autism in this manner. I believe that awhile back, a group of parents of autistic children, 'marched on Parliament Hill,' regarding this situation, but to no avail. Our laws need to be changed, so that autism will be recognized, the same as other special needs in children are. While it's a good thing that James has moved closer to the top of that list, #29 is still too far off, for sure. I am praying and hoping, that another 'new charity' will take on some of this burden for you. There 'has to be' a way, as he 'must' continue this! Love and hugs to you.
2 people like this
@mummymo (23707)
4 Mar 08
Someonesmom my loving, special friend you had me in tears with this! I DO care so very much about you and your family and I do hope that one day we will all get to meet up - I would love to visit Canada again and to know it would mean seeing you and giving you a 'real' hug would make it extra special! It will happen one day - I am sure of that! I can't help but agree that the Canadian government is letting down and failing so many autistic children and their families and really feel that something should be done - pressure has got to be applied to the government to make them see sense on this issue! Hugs and Love sweetheart! xxx
2 people like this
• Canada
5 Mar 08
My dearest Mom and Mummymo I am here after a long day at work and grocery shopping and I just finished my dinner @ 10:30 PM and you have me in tears now as I love you both so much!! I do hope that you are right mummymo and we do all get together one day :) Take care both of you and have a wonderful sleep! Just want you to know also mom that I have read your E-Mails tonight and hope to talk to you again soon :) As for our children not getting treated properly by our government...well you know where I stand on that and I was so upset when I heard that the March on the Hill did nothing to help our children!!!!! Love and Hugs, ~Heavens~
@mamasan34 (6521)
• United States
2 Mar 08
I don't have a child with disabilities at all, unless laziness is considered one. I really feel for you guys that are under this kind of financial strife. It's hard having to dole out cash here and there and still have to pay bills. My friend has an autistic child and they are broke all of the time. In fact they really don't have the means to help their child with her autism. They have to do the best they can on their own. They are fortunate however taht her autism is minimal and not an advanced case.
2 people like this
• Canada
2 Mar 08
Unfortunately for us our son was diagnosed nearly two and a half years ago as severe with Developmental Delay and so we had to get aggressive therapy ASAP but could only afford six hours a week and then got a bunch of funding from a charity and upped him to nine hours and now he gets six hours one week and nine the next depending on his school schedule...However we are out of that funding now and have spent the last two months funding this ourselves as it is so beneficial! Recommended therapy is twenty to thirty hours a week however one could never afford this!! We are very pleased with our son's progress as he has had this private therapist now for a year and a half and she is an absolute miracle worker!! He is verbal though not clear and can't carry on a conversation but the tantrums are virtually non existent and he knows all of his colors and shapes....He can count to thirty and sing the alphabet song...He is excellent at putting puzzles together and loves to look at books. He can put on his boots/shoes and put on his coat and zip it up independently...this is mostly thanks to his therapist! What an excellent investment in his life this is....I must continue to find the money to continue this! ~Heavens~
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