I received a call from a woman yesterday wanting to know the process of turning over custody of her son to her parents. Typically when I get such inquiries it’s because a mother is entering the military or an inpatient substance abuse facility. This mother wasn’t. Instead the rationale for her request was that her parents’ health insurance coverage was better than her husband’s (and her husband works for a well-paying local company) and their son was incurring thousands of dollars a month in unreimbursed medical treatment for his autism. I have represented parents of autistic children before and the current protocol of aggressive early treatment–hours of weekly play therapy along with physical therapy, occupational therapy and speech therapy–can achieve remarkable results, allowing these children to be mainstreamed by kindergarten. However the cost of this therapy is more than many South Carolina families earn and insurance policies cover differing amounts of these costs.
In most Western democracies the populace considers this type of extraordinary medical care for children to be a social responsibility rather than an individual responsibility. Despite this, these countries manage to provide equal or better health care results by most measures–infant mortality; life expectancy; chronic disease rates–at a lower cost. In Canada or Western Europe this family wouldn’t be left with the awful choice between relinquishing custody of their child or forgoing their son’s medical care.
I don’t think anyone, even Barack Obama, likes every aspect of the recently-passed health care legislation. But I would love to see the vocal critics of Obamacare currently running for political office in South Carolina explain to this woman what actions they would expect her to take to treat her son’s illness and preserve her family if they get their wish and repeal the health care legislation. I would further love to see them explain how the choice our political system has left this mother fits into their vision of “family values.”
8 thoughts on How would Obamacare critics respond to this family?
There is a special form of Medicaid that is available for autistic children. It does NOT take the parents’ income into consideration, just the child’s assets. Keep the child’s assets under $2000 and he is eligible for this program. I can’t remember the name of the program, but I will try to get it for you. The doctors and therapists treating this child should know about this. It fills the gaps between regular insurance and the cost of the treatment. So this issue is already covered absent the Obama care. It was in place before Obama was even elected. MJ
The woman informs me that Tefra does NOT cover ABA therapy. Since the ABA therapy is the bulk of most unreimbursed expenses for autism, Tefra is not the solution.
There are typically four therapies for Autistic Preschoolers. They generally have two to three hours a week of occupational therapy, speech therapy and physical therapy. Insurance covers a good portion of these expenses. The kicker is ABA play therapy. This is typically 25-40 hours a week of one-on-one interactive therapy, typically costing $10-15 an hour. The play therapist is supervised by someone who typically charges $75 an hour. This extensive regime, if followed, allows most autistic children to attend regular kindergarten. Most insurances still won’t cover play therapy.
I share your sentiments. In fact, I think the problem (with the political windbags) is that they aren’t even striving for a consistent, workable solution for society, just a quick-fix articulation of soundbites and facile simplifications that hold just enough water to make the news and the election, but crumble when inspected or implemented. (Of course, those guys would have an equally facile label for this observation, without having to — gasp!– offer any evidence or reasoned argument).
So I’m sure they’d *say* something about the woman or Obamacare, but I’m equally sure it wouldn’t actually make sense.
Thank you for the good information. I do not believe that the Medicaid waiver- is it called Katie Beckett?- is available in all states. It is not available in Texas. Despite recent legislation that was passed in our state that requires insurance companies to cover autism-related services, it is only available for about 20% of autism patients according to recent estimates. Companies that have self-insured insurance plans, which is now the norm, are excluded. Military and Federal Government workers are the only families I have met that have coverage here. In case any other desperate parents like me google your post and find this comment, we have been able to find some guidance on how to start our own ABA program at home through rethinkautism.com (for now). It’s better than nothing and, as I know we’ll never be able to afford the recommended 40 hours per week, we’ll be forced to use it to supplement whatever we cannot afford to have done professionally. There are waiting lists for most programs and the rest don’t begin until the child is age 3, wasting precious time. $10 an hour? I am getting quotes of $70 to $130 per hour. Any students willing to do this have been long snatched up. Still sending flyers to the university programs, but no luck. There is a “window” of language acquisition until age 4 or 5 where ABA therapy can help the child be able to sit still and have a few skills in order for the other therapies to “take hold”. And yes, all of this is personal experience. As soon as I get my child’s program set up and help her to a point where she is not crying in pain, I am making it a personal mission to make the employer and insurance company very sorry that they ever did this to my family. Insurance exists precisely for conditions like this- illness in children that is unavoidable and severe. My 2 and a half year old has never said her brothers names and “speaks” 5 words a day or less, by which I mean repeating after me. She is my 3rd child. I am an excellent, well-educated mother who has never touched drugs, rarely touches alcohol, and my other children are excellent students and happy children with no sensory issues. Why is no one talking about this? Why is there such a long wait to get into pediatric specialists? When your child has a suspected seizure, you should not have to wait 6 months to get on a waiting list! I had NO IDEA this was this bad. The places we go to are filled with other children like this. I have no agenda here, I vaccinated my children and I think Jenny McCarthy and her ilk have some credibility problems. Autism is like the new polio and no one is helping parents. People had better wake up and understand that young parents cannot afford 100K a year in care. Especially those of us with family that is unwilling or unable to help. Help me fight for my child, please, so that your taxes don’t have to pay to institutionalize her. None of us want that.
Excellent post, Greg.
There is a special form of Medicaid that is available for autistic children. It does NOT take the parents’ income into consideration, just the child’s assets. Keep the child’s assets under $2000 and he is eligible for this program. I can’t remember the name of the program, but I will try to get it for you. The doctors and therapists treating this child should know about this. It fills the gaps between regular insurance and the cost of the treatment. So this issue is already covered absent the Obama care. It was in place before Obama was even elected. MJ
It is TEFRA Medicaid coverage that is available. Here is a link. Her doctors really should know about this: “Katie Beckett” TEFRA Children
MJ-
The woman informs me that Tefra does NOT cover ABA therapy. Since the ABA therapy is the bulk of most unreimbursed expenses for autism, Tefra is not the solution.
I don’t know what ABA therapy is, but I hope she finds some help. Autism is hard enough to deal with, without having to worry about money, too.
MJ–
There are typically four therapies for Autistic Preschoolers. They generally have two to three hours a week of occupational therapy, speech therapy and physical therapy. Insurance covers a good portion of these expenses. The kicker is ABA play therapy. This is typically 25-40 hours a week of one-on-one interactive therapy, typically costing $10-15 an hour. The play therapist is supervised by someone who typically charges $75 an hour. This extensive regime, if followed, allows most autistic children to attend regular kindergarten. Most insurances still won’t cover play therapy.
I share your sentiments. In fact, I think the problem (with the political windbags) is that they aren’t even striving for a consistent, workable solution for society, just a quick-fix articulation of soundbites and facile simplifications that hold just enough water to make the news and the election, but crumble when inspected or implemented. (Of course, those guys would have an equally facile label for this observation, without having to — gasp!– offer any evidence or reasoned argument).
So I’m sure they’d *say* something about the woman or Obamacare, but I’m equally sure it wouldn’t actually make sense.
Thank you for the good information. I do not believe that the Medicaid waiver- is it called Katie Beckett?- is available in all states. It is not available in Texas. Despite recent legislation that was passed in our state that requires insurance companies to cover autism-related services, it is only available for about 20% of autism patients according to recent estimates. Companies that have self-insured insurance plans, which is now the norm, are excluded. Military and Federal Government workers are the only families I have met that have coverage here. In case any other desperate parents like me google your post and find this comment, we have been able to find some guidance on how to start our own ABA program at home through rethinkautism.com (for now). It’s better than nothing and, as I know we’ll never be able to afford the recommended 40 hours per week, we’ll be forced to use it to supplement whatever we cannot afford to have done professionally. There are waiting lists for most programs and the rest don’t begin until the child is age 3, wasting precious time. $10 an hour? I am getting quotes of $70 to $130 per hour. Any students willing to do this have been long snatched up. Still sending flyers to the university programs, but no luck. There is a “window” of language acquisition until age 4 or 5 where ABA therapy can help the child be able to sit still and have a few skills in order for the other therapies to “take hold”. And yes, all of this is personal experience. As soon as I get my child’s program set up and help her to a point where she is not crying in pain, I am making it a personal mission to make the employer and insurance company very sorry that they ever did this to my family. Insurance exists precisely for conditions like this- illness in children that is unavoidable and severe. My 2 and a half year old has never said her brothers names and “speaks” 5 words a day or less, by which I mean repeating after me. She is my 3rd child. I am an excellent, well-educated mother who has never touched drugs, rarely touches alcohol, and my other children are excellent students and happy children with no sensory issues. Why is no one talking about this? Why is there such a long wait to get into pediatric specialists? When your child has a suspected seizure, you should not have to wait 6 months to get on a waiting list! I had NO IDEA this was this bad. The places we go to are filled with other children like this. I have no agenda here, I vaccinated my children and I think Jenny McCarthy and her ilk have some credibility problems. Autism is like the new polio and no one is helping parents. People had better wake up and understand that young parents cannot afford 100K a year in care. Especially those of us with family that is unwilling or unable to help. Help me fight for my child, please, so that your taxes don’t have to pay to institutionalize her. None of us want that.