Comments on: Families Pinched By Cost Of Special Needs Care

By: hdemic

hdemic — Fri, 28 Oct 2011 21:05:00 +0000

What everybody else said. Where are you getting these numbers. Way to low. And I am very tired.
hdemic

By: sweetpeadreamer

sweetpeadreamer — Wed, 02 Mar 2011 05:17:48 +0000

I’m not sure where they got these figures. We are very fortunate and receive benefits through the states long term care insurance for my 6 year old. It still costs me more than the amounts the article states just to get him to therapy. We also pay for therapy he will not be able to function without for vision (around $4000) We also had to pay and advocate, plus daycare for my other child, plus extra costs for food and other conveniences, we would not have needed, so I could fight the school district to provide my son the required Free and Appropriate Education. (they refused to enroll him in school, once in school ignored his IEP then forged a document taking away necessary educational services with our initials on it indicating we agreed, they denied me access to his school records and lost a good portion of them as well, then they ignored a request for an Emergency IEP meeting, and list goes on.) This little escapade cost over $7000 to straighten out. Not to mention 5 months of lost opportunity cost for my son. We would have spent that money sending him to summer school or on an activity he loves but not this year. This year we are up around $20,000 out of our pocket for extra costs we would not have had if my son did not have a disability. That was about half my husbands take home pay. My full time job is keeping all of my son’s appointments for therapy, doctors and making sure the school is doing what they are being paid to do. I need a paying job because of the extra expenses but am unable to take that on with my responsibilities to my son and other child. I am so grateful for the services he receives through the state because I can then concentrate on his care instead of working to pay for the therapies that he then would not receive because there would be no one to take him or work with him. There is a huge opportunity cost in my not being able to work. With all the help he receives I am confident he will be a fully functional and productive adult, when at one time he might have tragically been institutionalized. The help does make a difference to these children, families and society as a whole.

By: 6trojans

6trojans — Fri, 16 Apr 2010 19:36:14 +0000

donna28, you need to read the article again, specifically:

“On average, families spent $774 annually, but the cost varied by state of residence ranging from $560 in Massachusetts to $970 in Georgia.”

These were comparative numbers from another article that had nothing to do with income. These numbers are WAY off base.

By: donna28

donna28 — Thu, 28 Jan 2010 20:44:32 +0000

This study looked at the amount of money LOW-INCOME families spend out of pocket. Without having read the study, I would suspect the figures are low because Medicaid or SCHIP picks up a good chunk of the tab and/or these kids aren’t receiving all of the services they need.

In addition, public school districts are also responsible for incurring some of these costs.

By: Kodi Wilson

Kodi Wilson — Sat, 09 Jan 2010 18:52:04 +0000

I agree about these numbers being cited are WAY too low. We track our cots every year for taxes, and they range from $8,000 – $15,000 OUT OF POCKET every single year. The numbers I see in here are WAY off. If it weren’t for fundraisers we’d have lost our home by now… like many of my special needs friends who are in this same situation in Louisiana. Some HAVE lost their homes due to out of pocket medical expenses.

By: ecurra19

ecurra19 — Sun, 20 Dec 2009 21:01:05 +0000

That should have been a no-brainer that low-income Americans who have a child with a disability spend over 3 percent of their income to meet their child’s health needs. The clear message is that the programs like Medicaid and the State Children’s Health Insurance Program (SCHIP) are not enough. The problem is that the system does not care to investigate. This finding is only for children. What are the findings about adults? The economy is going to affect even deeper with the cuts of funds to many programs as in transportation, education, etc. What the national organizations have to say about that? A situation that the territories of the United States have being facing all the time. “Families that are raising kids with disabilities are probably facing much greater burdens now.”

By: Thur Annfin

Thur Annfin — Sat, 12 Dec 2009 17:04:46 +0000

TherapyMom — My daughter is 19 now, but until she turned 18 I couldn’t get any medical insurance for her because of uninsurability. The state programs here in Ohio designed to help cover special-needs children doesn’t consider Down syndrome a qualifying condition (they used to but budget cuts…) So I know what you’re talking about — rationing care, trying to triage so that the child gets the most important medical care.

What a world of difference now that she has Medicaid!

People who only want health care made possible by the private market should consider the idea that capitalism is at heart a Darwinistic model in which the strong flourish and the weak perish.

If, it has become acceptable for us to see how this kind of predator-economy based health care targets the weak, sick, and helpless for destruction I suppose we should continue with our current dog-eat-dog private insurance system. Otherwise, perhaps we as a democratic bunch of people could come up with a better system.

By: Therapymom

Therapymom — Fri, 11 Dec 2009 21:26:40 +0000

The prices for my state are not anywhere near what we pay out of pocket for our child’s care. It is easily over 10 times what is listed. I don’t know who they polled or where the numbers were from, but it is not an accurate depiction of my situation or a lot of people that I know. I am not able to work full-time because of my child’s health needs and issues.I am selling belongings, taking extra odd jobs as able and bartering at times in between caring for my child to get what we need. Sometimes appointments get missed, because I have to have cash to take my child places. We have no insurance. We do not qualify for a waiver or any program at this time. We are “uninsurable” and there is no group plan for the hours that I do work. Our friends that do qualify for services and have them in place are not being funded for the services that they were promised nor do they have the frequency, intensity and duration that they need. When we do possibly qualify for a program will it exist or even provide the services that we need or it promises???
Our Christmas will be very basic- no frills and no presents as my hours are cut during the holidays. It’s OK. We have food, electricity and a roof over our heads. Our Faith, inventiveness and sense of humor get us through.I need to make sure my child has seizure meds. I have no reserves at this time if there is a crisis. That is scary. I am going to have to park my car in the driveway and walk because we can’t afford tires or to fill up the tank right now. Hopefully, we will get through everything. I am strong and have sidewalks most of the way where I walk. I have a good friend that will help us with a ride to the doctors. Tough times, tough choices. Trying to stay hopeful, and optimistic. God Bless.

By: dgoneau

dgoneau — Fri, 11 Dec 2009 19:16:08 +0000

I dont know who wrote this article but the facts are very wrong! Just for my son to have OT once a week its $387.00 .He goes twice a week! Not to mention speach , Neurologists,etc. I live in Virginia. Please check your sources again!

By: JustMe

JustMe — Thu, 10 Dec 2009 23:12:56 +0000

I agree that the costs cited here are too low. There are many indirect costs, like lost wages for medical appointments, attending IEP meetings, and responding to the crisis-du-jour when the school calls. And then there is the lost income of parents who lose jobs or are forced to quit due to the whiplash effect of their children’s needs: maybe a kid has anxiety issues and refuses to go to school, and the school demands a doctor note for a recurring problem, and pretty soon the truancy cops descend and now there’s a court date and a probation officer. Or maybe the child with bipolar disorder has seasonal sleep issues & can’t make it to school regularly, when expected, with same truancy harassment as a child with anxiety. Kids with disabilities have more disciplinary issues and are sent home and suspended than kids without disabilities, and parents are “suspended” from work along with their kids.

What about the extra costs of tutoring? And transportation to weekly therapies, doctors, counseling? The cost of private evaluations?

Even a kid with “just” ADHD has hidden costs, like replacement of all the lost or damaged items that are related to inattention and impulsivity. Or how do you account for the cost of replacing carpet full of burn marks when a suicidal child tries to set the house on fire to end their misery?

Disability, visible or invisible, has many hidden costs.