Study Finds Autism Can Be Financially Devastating
In the study, some parents reported paying as much as $30,000 a year for ABA therapy. Parents whose child with autism was destructive also reported paying compensation and replacements costs for items that were destroyed.I hope to interview author Deanna Sharpe, associate professor of personal financial planning in the MU College of Human Environmental Sciences, to find out more about her recommendations. Meanwhile, however, I have to wonder how any family not already making hundreds of thousands of dollars per year could possible "plan" to find an extra $30-$50,000 annually for therapies and other costs.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.
In areas where behavioral and other intensive therapies are not underwritten by the state or by insurance (that is, in most of the world), parents are left with miserable options. They can sell everything and dedicate all their resources to autism therapies. They can drop everything and dedicate their lives to becoming full time therapists to their children with autism. They can opt to take what's offered through the schools and hope for the best. They can hire lawyers and advocates, and hope that their expenditures wind up being reimbursed. And all of this must be done during a time of huge emotional trauma and upheaval.
That any children with autism receive appropriate treatment and live in a stable, financially solvent home is an extraordinary testament to those families who have been able to make it work.
Have you been able to combine appropriate treatment, financial stability and a stable home? Do you feel you would have benefitted from working with a financial planner immediately following your child's diagnosis? Share your story!
Comments
HA! A financial planner would had taken one look at mine and said “sorry, you have no finances to even plan with”!!!
I never went beyond my means. It’s awfully hard to even know what is appropriate treatment at any given stage and I could not see going broke to provide things that just may not for sure help. So not knowing which treatments to go for, I’m not sure how any financial planner could help plan to afford it, and then would you be subjected to their idea’s of treatment plans? When my child was diagnosed, the doctor in the paper work suggested 40 hours of intense ABA. Although that was never going to happen, after researching it, I decided that was not something I wanted for my child any way but I certainly would not spend $30-$50,000 annually out of pocket even if I had it to begin with.
The choices I made, some maybe were not so good, many were. My child’s progress shows well without ABA ever, and without spending beyond my means. We were fortunate that our insurance covered Speech and O.T, and I credit much of my child’s progress to those 2 private therapists for 4 years and his one special ed teacher he had for 3 years.
While parents of autistic children are stressed financially by the costs of therapy, many are stressed further by the impossibility of both spouses working. One spouse often cannot work, as the child may often be out of school sick, or therapists can’t work with the children after school. Even if the “caretaker” spouse finds work, it may be hard for that spouse to have the level of employment that he/she had before the problems due to autism surfaced. Then if you miss too many days taking your child to the doctor, meeting with school officials, etc. you’re job is toast… Sometimes a spouse may wonder why bother with the job altogether… It is especially tough if the “caretaker” spouse had a fulfilling career/job before the problems with the child’s autism surfaced. Many people gain not only financial returns from their careers/jobs, but also benefit from personal satisfaction and interaction with other high-achieving adults. When a spouse leaves the financial rewards and personal satisfaction from a career cold turkey to take care of an autistic child, it can be tough. Friends that you may have had at work suddenly don’t know how to be friends anymore, and the ability to spontaneously have friends over or go visit friends is often limited, perhaps even stopped completely. The impact of isolationism related to raising an autistic child is scary. Most days I can get through it, but sometimes I just wonder why.
Your question concerning anything stable and/ or appropriate is impossible with an autistic child. The entire medical society has no idea about autism and appropriate isn’t even a close description yet!!! We just hope each day that we try something and work towards something that helps or makes a “difference” to the good in their lives. YOU SEE WE HAVE TWO AUTISTIC CHILDREN!!! We had a shoe-string budget when we met and then a premie baby with reflux and then “slam” he has something no one wants to diagnose and then we are then having our next child and she starts with the reflux and then something is obviously wrong (yes, she is MORE autistic and apraxia of speech, IE mute). So finances are just not there!!! I haven’t worked for, I think, about 5 years now. I attend every therapy session (speech/OT) and have worked in our home (school help, oh yeh, they have no trained, no experienced help) to offer our children any additional help they need. OUR CHILDREN ARE PUT 100% FIRST IN OUR LIVES AND WE LIVE, EAT, BREATHE AUTISM!!!!!! And we are completely broke and in debt and need so much. We have gone over two years with running water only in the bathroom tub!!! We have no stove, sink (only a microwave and Hot Spot to cook on) and have only an appartment/ DORM size refrig and freezer (he stacked them to mimic a really cool new one!! It took 2-3 months to get even a fridge!! Yes we can laugh at some things!!!)I now have a sink in the bathroom and new stool is in too. Kitchen is in shambles, we have tore out the old and can’t seem to get the renovation (just to make liveable!!!!!!!!!) done (time constraints and his and my health (pain mostly!!) and the whole money issue too!! As usual I am awake at 1:00 AM, the only time I can get something done without the kids needing me. Sleep is something that thank GOD I seem to be able to go with only minimal. As my husband most definite CAN NOT go with less than almost the normal 8-10 hours!!! You can’t plan finances, when there was nothing there to count, plan, hold onto etc. We have problems with just the cost of trips 45 minutes both ways to speech and OT (If they go on the same day, one can only hope!!!!). We live in a rural area (at least we know they are somewhat safer!), but services are next to impossible to get out here we have learned. So, just one county over those kids get considerable more things and the families more $$$ help!!!!! And, society is at a loss as to what to do with families that have more than one autistic or special needs child!!! Our main issue has and it seems will always be respite care (help with caregiving to give me a break from 365 days a year and 24 hours a day!!!) and we can’t seem to even get that!!!!! Our marriage, hah I won’t even go there!!!!! But, our kids know that we love them to pieces and are extremely proud of them!!! He is an accelerated reader in school (reading at first grade in Prek!!) and she is started to talk (she was MUTE!! and we used pictures to communicate (when we finally could get the Pec book to her(a state issue!!!!!!!). Thanks for letting me give some information to your community. We don’t need a financial planner. The state does!!! The government does!!! And the medical society needs a kick in the @@%%***) and the coverup of all the answers and info there needs to be exposed GOOD OR BAD!!! These kids and families deserve the nations help. And the crazy thing is now it is 1 in 94 boys born and 1 in 150 (AT THE VERY LEAST) of children born daily!!! Yet, every person walks around still like it isn’t going to happen to us!!! HA HA we say, get a clue!!! Our local hospital with the statistics listed is having an autistic child born there if not daily then every few days!!! Does that scare anyone yet?? It does our family!!!
Yes, my finances are going down the drain. I’m a single mom and MUST work full time to support myself and my daughter. I wish I could be a full-time therapist, but that is impossible. So I have to leave her therapy up to third parties. The school situation in my city is laughable. We are a fairly large city, but our school district is in its 5th year of failure under NCLB, much less able to do much for special needs kids except warehouse them. Lawyer’s fees, ABA therapists, after-school fees, OT and Speech, Vision, etc., all the time I take off work (without pay). It adds up and up and up. I haven’t spent every dime, yet, but it is tight financially and I worry that our window of opportunity (my daughter is 5) to get intensive treatment early is closing. We don’t eat out, I try to keep all the lights turned off and the heat turned down. I don’t heat up my car in the am – gas costs too much. I haven’t bought any clothes for myself in years. Repairs to our house are not done unless absolutely necessary. We don’t get haircuts anymore – I cut our hair. Like others have said, one needs funds to benefit from financial planning.
We had to pay most out of pocket with some insurance help waiting for re-imbursement -always tortuous financially, and used house equity to pay for me to stay home, not working and house repairs and car purchases.
We always had to fight for codes to get insurance coverage waiting for approvals.
School districts paid for little other than a school one on one aide in elementary and 6th grade,after which we did not need one on one,limited speech, occupational therapies, or social skills. We did sensory integration, and pediatric optometry, and a reading fast forward program all with or without insurance
I even bought Lindamood Bell reading manual books for the special ed teachers at our elementary school.
Plus it costs a lot of money to buy help books and go to conferences on autism-the local library never had much info at all.
This is still true.