Science Daily just published news of a study indicating that raising a child with autism can be financially devastating to families. The study said: "Some families quoted in the study reported skipping meals to be able to afford therapy for their children. Others talked about robbing their future by depleting savings, emptying their 401K plans, selling stocks and even filing for bankruptcy. More costs are added to some families who need counseling and medication for themselves in order to cope with the stress of raising a child with autism, further straining the family budget." What are some of the other costs of raising a child with autism that you have experienced? The added expense of hiring "trained" personnel for babysitting or respite care. Special equipment, special needs toys, expensive foods for special diets, travel to medical specialists, un-reimbursed medical expenses......What else do you spend money on? How do you save for the future and also provide financially for the current needs of your child? What are parents to do? What do you think?
AWETISM wrote this reply on Mar 03, 2008 6:26 am
I do sooo agree with you. This is why I answered the way I did tonight about the Lottery question. I am so blessed to have met my friend who stated GLAD . Her heart is to not charge families for INFO that should be free. The cost of conferences is nuts alot of the time too. I feel somtimes like the Austim world is becoming a industry.With so much out there it's not always easy to make the best choices.
carmel66 wrote this reply on Mar 03, 2008 5:34 pm
It is unimagible to think that people don't understand how expensive it is to have a child on the spectrum...how services are so expensive, schools don't have the money or expertise. Doctors don't have the expertise and the ones that do don't take insurance. Just the expense of diapers for years and years is immense. Forget the money or time for counseling for other family members...!We spend money helping to support our schools, DAN visits/calls, supplements, TD secretin, special therapies. Luckily we have some sort of income. I cringe when I think of families with little or no income and have to choose whether to treat their ASD child beyond what school will offer. I think advocacy and financial support are key to getting this generation through this hump. We need to find someone who have time and money b/c it, unfortunately, often is not us (the ASD families).
6boys1hfa wrote this reply on Mar 03, 2008 9:26 pm
I for one have seen the pocket book depletion! I had to cancell our childrens insurance since they were not covering anything! say for example an appointment cost $300....My cost a month to PAY for this insurance is $180.... $30 co-pay for this visit. Well they were covering only $150!!! So I with 30 co-pay and insurance cost was paying more than each appointment!!! Plus since my sons HFA diagnosis they dropped my sons prescription coverage. his meds cost $65 a month! His neurologist says it will only get more costly as time progresses! SOOO I am now seeing if I can get him on MC for kids. My son needs food therapy, and sensory integration therapy (Doc recommended) but the old insurance wouldn't cover therefore his doc wouldnt' reccomend a therapist for him. He said it would break us! My son also has sleep issues he is 5 and never has slept through the night! A weighted blanket was suggested by his doctor with pollyfill beads so as to be non-toxic. YEAH! They cost a BUTTLOAD!!! LOL!!! I have 5 other boys to provide for and our money is going to one child! I feel so guilty!!!!!!
- shannonj wrote this reply on Mar 03, 2008 11:03 pm
Wow--I wonder if the study even took into account the needs of the siblings....and the fact that many siblings also have spectrum issues, like ADHD or medical issues like IBS, asthma, allergies etc....
- janneane7 wrote this reply on Mar 07, 2008 1:47 pm
Allie had (has) sensory integration disorder and had ALL KINDS of learning problems in school right from 1st grade. (She was in a self contained class from grade one through 3) These problems were directly related to the SI disorder, which wasn't caught, until I recognized what was wrong, when she was 11 1/2!Allie also had an early childhood seizure disorder which she thankfully outgrew.
- janneane7 wrote this reply on Mar 07, 2008 1:53 pm
Allie had (has) sensory integration disorder and had ALL KINDS of learning problems in school right from 1st grade. (She was in a self contained class from grade one through 3) These problems were directly related to the SI disorder, which wasn't caught, until I recognized what was wrong, when she was 11 1/2!Allie also had an early childhood seizure disorder which she thankfully outgrew.
- Mrs.H. wrote this reply on Mar 05, 2008 2:06 pm
This a big concern for me as well. As I head for my RDI training, I suppose I'll be learning the ins and outs of being a consultant. I have been wrapping my brain around the concepts of working pro bono and offering sliding scales for a while now. I know that I have the costs of my training, as well as all the paraphernalia that goes with it, but really. The fees of the OTs, SLPs, therapists and other assorted personnel run in the hundreds per hour. Really. I could not, with good conscience, withhold services because of financial restraints. My families don't have deep pockets. Their costs are overwhelming. My naive question for the day - I'm only allowed one is: are there supports being developed by the "big" organizations (Autism Speaks, Autism One, Cure Autism Now, for example) to help provide and promote better "support" coverage for families than what is available? In the meantime, what? Do therapists start to look at their costs and fees? Do we advocate to get government support or private grants? I become worried when I think it may be a case of supply and demand. It will be interesting to see what I learn.
- janneane7 wrote this reply on Mar 07, 2008 1:57 pm
Autism Speaks... well I don't think they will ever do anything that will directly benefit families in their day to day lives...BUT I do know the National Autism Association is trying to help. They have a grant program for families to help them pay for therapies and biomedical treatments. But with so little money there is only so much they can do.
- carmel66 wrote this reply on Mar 04, 2008 4:38 am
Yes, my daughter (NT) has pseudo - asthma, triggered by certain viruses. She has been hospitalized once, and pneumonia several times. Nebulizer, meds, supplements. She's only three and pretty damn healthy --- but just the one hospitalization and extras put us in the hole over $2000 this year (nothing compared to her brother) but just an indicator of things to come that she has inherited from our genetic line.
- shannonj wrote this reply on Mar 05, 2008 1:55 am
Our NT daughter has asthma as well, and allergies, and some un-determined intestinal issue. She has had her share of labs, doctor visits and procedures as well....
Simranmg wrote this reply on Mar 04, 2008 5:57 am
WOW this is sooo true. I know alone we have the DAN doctor, the special ed attorney, suulements, special foods, toys. meds and the list goes on. I'm trying really hard not to deplete everything. I have another child and she deserves the best too! But I am already conteplating getting another job or my husband will.
cjkellie wrote this reply on Mar 04, 2008 12:55 pm
I do know the hardship of being a low income family. I am a single mom that has raised two boys on my own now for many years. I work around Chad's needs so my hours are limited. I have been able to find grants and scholarships for many of his therapies. Also my boyfriend has paid for many sevices for Chad. My dad is wonderful and will pay for the things I feel I have to have for Chad. As far as saving money I just can't. Don't have it to save but I do have life insurance and hope I don't have to use it soon...lol..
Ladylawlawyer wrote this reply on Mar 05, 2008 2:51 pm
It's amazing. I'd just written to someone else expressing this very reality that exists for so many parents challenged with autism. It is very expensive providing the treatments that would and, in many cases, could make a tremendous difference in the lives of our children. And so many people/parents are being forced to make very unfair choices. Many times the choice is only - no treatment. You ask what are some of the costs...? For some, there is no cost because there simply is no money. For many people you don't save for the future because your only choice is to provide for the here and now. Don't forget that many people don't have insurance, work low income jobs, don't have support, can't stay home to assist with the needed services and therapies. Many people don't have time go to support group meeting because they have to work. We forget that everyone doesn't have the financial ability to help their children. We are blessed, many of us to be able to do something for our children. But there are so many people that are really fighting this battle alone.
janneane7 wrote this reply on Mar 07, 2008 2:02 pm
If we were wealthy I would take Andy to NY, Florida or Texas to one of the TOP NOTCH DAN Doctors and spend at least a month there getting him evaluated and tested and developing a treatment plan. I truly believe that with the right medical interventions Andy's life could be improved dramaticly.BUT with no money (I mean I am driving a 1989 rust bucket) we can't help him. I SO WISH health insurance would cover the medical treatments for our kids. I don't much care about medical insurance covering educational treatments like ABA but at the very least they should cover the medical testing and at least some of the treatments!
- shannonj wrote this reply on Mar 08, 2008 1:48 am
Hi-We have BC/BS insurance and for the most part, they have covered almost all our biomedical treatments. The one thing they don't usually cover in full is the initial visit to a DAN doctor because the visit is usually over and hour (sometimes 2-3 hours long) and can cost over $400 and that is beyond the allowable amount. But, after that, if the charges are coded correctly by the MD, then the insurance companies will cover them. For example, my son sees a DAN doctor and on her bills she doesn't code the diagnosis as autism, she codes each medical issue directly--like (I'm looking at one of the bills right now) 348.30 Encephalopathy, unspecified is one diagnosis, and 782.0 Disturbance Skin Sensation is another code. Doctors can code for Dysbiosis, Malabsorption, Vitamin Deficiency, etc....depending on the particular issues of your child. I hate to think that you are not getting the medical care that Andy needs because insurance won't pay. Have you contacted your insurance to see what their policy is for covering specific medical issues--not "autism"?...Okay, and you are in MA, right? You should call around to the DAN doctors around your area and talk to the billing clerk in those offices and see what information for billing they can offer...Don't give up if you really think there is medical help out there.
- carmel66 wrote this reply on Mar 13, 2008 12:08 pm
Our DAN in MA rewrote the billing sheet he gave me. I asked him to take the autism code (299 - I believe) off the sheet. So he did and coded it for pancreatic insufficiency which also allows for the secretin treatment. Now - I have to pay out of pocket and then get partial reimbursement so cue the credit cards....but we also have crappy insurance (cue the self-employment music) most people have better insurance. Also, our DAN does take Medicade or Medicare (I always get confused). We don't have our son signed up for Mass Health or anything yet (on the to do list). That's the only insurance he does take.
Calliesmom wrote this reply on Mar 07, 2008 8:14 pm
Sadly, I have to work ourside the home to have the income to support Callie's needs...I know she needs me at home, but there is no other way to provide the needed tutoring and therapies without me working..Mu husband does the best he can, it just takes too and lets not forget the expenses of the sibling who is in College...it is only fair to her to have what she needs too.....Monies to help would be greatly appreciated and believe me only used for the right care.....If I could just locate the grants and income, but so far, I have been unsuccessful....Kimberly
Danyell4 wrote this reply on Mar 25, 2008 3:58 pm
Well I have become a coupion clipper,sale hunter alonge with all my other more important jobs, "taxie driver"(I have a teenager), I could go on, Last night on the news "The rising cost of health care , how covering these Autism therapies would cost everyone to have higher premiums", GOOD, maby everyone will relize how defistating Autism is Now and think about the Future!
- 1_spec_Mommy wrote this reply on Mar 28, 2008 1:22 am
I also have all the job titles too. The thing with raising the insurance premiums, is that would not cost as much as the treatments do that most people pay for out of pocket and would probably greatly appreciated in comparison to paying for thier childs needs by themselves. At least I would refer it that way.
1_spec_Mommy wrote this reply on Mar 26, 2008 3:56 pm
Our family has already suffered a significant income blow, we are currently in a bankrupcy for other reasons and our sons treatments have not even begun yet. Talk about state assistance,I'm on WIC already and that helps a little. We have no insurance at the moment because husband started a new job and it hasn't kicked in yet. I have thought about getting state services, but when we have tried in the past the say we make too much money. My thoughts are if we make too much money, then why are we having trouble paying the bills and getting the things we need. I said need ,not want and with kids there is always a want!!! We also have two other children to think about. Our stituation is not unusual either. We have three children,the two youngest are in diapers, one of whom is Autistic. I try to buy in bulk and sometimes it helps cut down on the cost but not always. for example diaper
violetdragonfly wrote this reply on Aug 08, 2009 7:40 pm
Last year our out of pocket expenses for our 1 child with A.S.,
Therapist-weekly $20 ea.
O.T.-2x week $30ea.
Dr. visits- 13x @ $20ea.
Alpha Stem machine(per therapist)$800.
Extra Alpha Stem Supplies $400.
Supplements $450. per month
Specialists $150.per visit/ bi monthly
The Listening Program $350
Home Education Materials- outrageous
Full time caregiver- priceless...$30,000.year
Special sheets, clothes, shoes, computes programs, planners, ect...unknown
yme1016 wrote this reply on Sep 12, 2009 2:20 am
Now that I started looking at services besides what the school gives him I'm starting to feel the financial strain. Before it was just house hold needs like special foods because he is such a picky eater, special needs toys (that are never cheap) etc.
coffeemom4 wrote this reply on Jan 28, 2010 5:47 pm
Autism, not our son, but there is a point of where one meets the toehr the blend and then the point where our son dislikes it as much as we do, the autism, not him. Time off of work, replacing beds, ( so much for pine biunk beds before we knew what PICA is) if it's not the PICA it's the vestibular issues, the jumping, I never realized kids could destroy a bed so fast. Special foods, we tried to wing it with GFCF... I may write a short story somewhere about the horrid pumpkin soy muffin.. rocks, rpelacing toys that have that persevation stimming comfort attachment, tiem off work to help our son through therapies, change, meds, legal issues, time off work for IEPs.. burnout, it all has adollar sign, and the fruitless trail of doctors that offered nothing.We burned through 3,000 before we had a diagnosis and then she didn't do the full 14 page psych eval, she lost our papers and went to Hawaii, 9 months of heck raising later I had a copy of our son's dx. ! oh the Mom's burned out dinner account which usually includes delivery and a hunt for superwoman coffee. Saving for the future.. I'll get back to you on that ;)
