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Families Pinched By Cost Of Special Needs Care


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A quarter of low-income Americans who have a child with a disability spend over 3 percent of their income to meet their child’s health needs, but how much a family spends can vary greatly depending on the state where they live.

Despite programs like Medicaid and the State Children’s Health Insurance Program (SCHIP), low-income families are reporting significant out-of-pocket health-related expenditures for a child with a disability. A family of four living at the federal poverty level is spending about $1,200 a year out-of-pocket on therapy, home modifications, wheelchairs, diapers and other health-related needs, according to the findings of a study published in the December supplement of the journal Pediatrics.

“It might not sound like that much for families making $100,000 a year, but that’s a great deal of money for a family that only earns poverty level income,” says Susan Parish, an associate professor of social work at the University of North Carolina and the lead author of the study. “These are costs above and beyond any health insurance premiums or co-pays.”

The study is an expansion on research Parish and Paul Shattuck, a Washington University in St. Louis professor of social work, released last year, which found that 91.2 percent of special needs families spend out-of-pocket to meet the needs of their child with a disability. On average, families spent $774 annually, but the cost varied by state of residence ranging from $560 in Massachusetts to $970 in Georgia. (Find out where your state stands >>)

To assess the situation for low-income families in the current research, Parish and Shattuck looked at data from more than 17,000 children in the 2005-2006 national survey of children with special health care needs. They found a correlation between the income eligibility level in a given state for Medicaid and SCHIP and the level of out-of-pocket spending that families were incurring.

In 2005, the maximum income level for a family of four to quality for SCHIP eligibility varied from $19,350 to $67,725, depending on the state.

The situation for low income families with a child with a disability was best in the District of Columbia, Hawaii and Rhode Island. Meanwhile, residents of North Dakota, Minnesota, Utah and Montana were more likely to spend a large percentage of their incomes on their child’s health-related needs. (Find out where your state stands >>)

Since the recession hit, many states have made cuts to Medicaid and SCHIP meaning the situation is likely more dire that the study reflects, Parish says.

“Families that are raising kids with disabilities are probably facing much greater burdens now,” she says.

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Comments (12 Responses)

  1. dlhicks says:

    I totally agree with this article but the amounts are misleading, like in my son’s case he has several different issues and we spend over that amount on each separate issue.. We live in NC and have a special needs child who has several issues (many of which little to no coverage by our insurance). Both my husband and I work full-time jobs and my husband had to get a part-time job just to help cover all the meds and co-pays. We even had to cancel much needed therapy and psychologist appts. since we just don’t have the money to pay for them. It is sad that we are trying to do it on our own and can’t get any assistance (and all we asked for is help covering what insurance doesn’t cover). While we see people who get assistance that don’t need it and/or are not trying to do it on their own. Very depressing, and it is making my family suffer. And the sad thing is my son would be doing so much better with just a little assistance. Thanks for letting people know about this issue. This is one area where I think some health care reform is needed. If they would help these kids now they would save money in the long run.

  2. ceaster says:

    Please find the data that they collected to come up with these costs. I believe that the numbers for out of pocket expenses are way too low. What expenses are they limiting too?

  3. JustMe says:

    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.

  4. dgoneau says:

    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!

  5. Therapymom says:

    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.

  6. Thur Annfin says:

    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.

  7. ecurra19 says:

    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.”

  8. Kodi Wilson says:

    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.

  9. donna28 says:

    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.

  10. 6trojans says:

    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.

  11. sweetpeadreamer says:

    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.

  12. hdemic says:

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

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