Autism treatment: UK vs. US? - Mothering Forums

Forum Jump: 
 
Thread Tools
#1 of 8 Old 03-26-2013, 02:01 PM - Thread Starter
 
deannanmc's Avatar
 
Join Date: Feb 2011
Posts: 16
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

Hello all! My husband and I have a big decision to make. We found out that we were approved for a two-year extension visa extension for his job in the United Kingdom last month, which coincided with our almost-four-year-old's classic autism diagnosis. It's a lot to process! We're going around in circles trying to decide whether to stay in Yorkshire or move back to our home office in Baltimore, Maryland, and we keep coming back to the same issue: we have NO idea what the American system is like. 

 

Some important points:

1. She is verbal

2. She will need occupational therapy

3. We are not in military service but while we're on overseas assignments we can utilize base medical services and possibly get an American IEP established through a base school

4. In the UK she receives these services free through the NHS and the county: speech therapy (not weekly, but we have stacks of exercises to do at home), occupational therapy (same), social pragmatics group (weekly), and a 1:1 aide during her one full day of private Montessori preschool (she does half-days Monday and Friday and a full day Wednesday). They do extensive social pragmatics and fine motor work with her at school. We could not afford an equivalent private school in the United States. She will do "Reception" (Pre-K) there.

5. We have been corresponding with a lot of autistic adults and because of their stories (many feel it was tantamount to abuse), we have serious reservations about behavioral therapy. We also are a little strict about how doctors speak to and about our daughter: we refuse to allow them to use the words "deficits/splinter skills," and we don't find terms like "high-functioning/low-functioning" to be useful language to describe autism. This is just by way of saying...we might butt heads with professionals. :)

6. We don't really know much about what special education looks like in our local elementary, but we are assured by the therapists that our neighborhood school is a stand-out in a town of good elementary schools.

 

We love it here in the UK. It's been an amazing experience for our family, and the additional income from overseas benefits packages allows me to stay home with my children--something we don't think we could afford to do in Maryland where the cost of living is so high. But we know that in Baltimore we would be so close to Kennedy Krieger Institute and other amazing resources (...for a price).

 

That said, and knowing that services vary wildly even by towns within counties within states, and vary even more wildly by child...help! Share your stories! Are you constantly fighting with insurance companies or schools? If you homeschool, do you find there's local support (we haven't ruled that out)? We have meetings soon with a developmental pediatrician and with all the therapists, but we need US data points to help make our call! Thanks!!


Mom to my blondie girl M1 (April 2009) and my gingersnap girl M2 (November 2011)

deannanmc is offline  
Sponsored Links
Advertisement
 
#2 of 8 Old 03-28-2013, 08:19 AM
 
RiverTam's Avatar
 
Join Date: May 2009
Location: St. Louis, Missouri, USA
Posts: 929
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

My insurance has not paid for any treatment of my child with HFA/ASD. We paid out of pocket for speech therapy and social skills classes and a psychologist. We paid privately for all of his assessments. My son was in a private Montessori school and did not receive any accommodations from the school or any support from the public school system while he was there. He is now in a public school and gets 1/2 hour  of speech per week and 1/2 of social skills class per week. 

 

It took awhile to diagnose him. He is 2E (gifted and something else).  The competing DXs were MERLD/ASD. Insurance would not pay when he had the MERLD DX. The school system responsible for providing services at the private Montessori stated that he was not eligible for an IEP or educational DX, mostly because of the giftedness. I could have fought that but a lawyer would cost as much as just paying for the therapy. After the ASD diagnosis was confirmed, we submitted our therapy bills to insurance and they refused to pay them because we were past the time for submitting them. 

 

Both my husband's employer and my employer stopped offering employee health insurance completely. We are now purchasing a high-deductible health plan that doesn't pay for therapy. 

 

Good times.

RiverTam is offline  
#3 of 8 Old 03-28-2013, 09:01 AM
 
Peony's Avatar
 
Join Date: Nov 2003
Posts: 15,914
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 5 Post(s)

We have a similar experience to RiverTam here in the US. Insurance covers nothing for us. He does receive  some services through the school district but they are limited and sub-par. We will lose those once he turn 5 because I am refusing to send him to his local routed, over crowed elementary school. We go private on everything because well, we have to. DS2 is also higher functioning but his medical/therapy bills cost us 20K last year. We are in a situation where we could make it happen but it has come at a serious cost to us. We've had no choice but to go into debt for him to improve his quality of life. 


There is no way to happiness, happiness is the way.
Peony is offline  
#4 of 8 Old 03-29-2013, 03:41 AM - Thread Starter
 
deannanmc's Avatar
 
Join Date: Feb 2011
Posts: 16
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)

Oh wow. We had no idea. Autism wasn't even on our radar until we were already in England so we only know the NHS. What you both are going through sounds so hard; I'm so sorry.

 

I know in Maryland if you have an autism diagnosis there's a state law that says your insurance has to cover "treatment," which is nice in theory.  But in practice, who knows how much, what kind, or how well that actually works (ditto IEPs). A lot of people in a different forum local to the DC suburbs of Maryland are telling us to stay in England. We're really leaning that way.


Mom to my blondie girl M1 (April 2009) and my gingersnap girl M2 (November 2011)

deannanmc is offline  
#5 of 8 Old 03-29-2013, 05:46 AM
 
livinglife's Avatar
 
Join Date: Jun 2012
Posts: 210
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 4 Post(s)

There's a law in Mass where I live that also says autism treatment has to be covered by insurance as if it is a medical condition.  However, in practice, for us, it has proven a hollow promise.  The gold standard of diagnosis in schools is a neuropsych evaluation done by a psychologist which is what we used to diagnose.  Our insurance refused to re-emburse us for social skills therapies because an MD did not make the diagnosis.  (If we had used an MD the schools would have required the neurospych evaluation on top of it...more money out of pocket by the way, because the best neuropsychologists usually only accept partial insurance payments and the rest has to be paid by a family) 

 

They also refused payment under the grounds that his school system provided this work under his IEP.  Of course, best practices dictate that repetition and is very important in learning for a child is on the spectrum.  It is best practice to repeat the social skills work he gets in school but the insurance company didn't see it that way. 

 

AND, after the law was passed, our insurance which is with a major well known carrier, actually hired a professional consultant to sort through autism therapy claims who functioned as a barrier to treatment.  The worst of it is, that, separate Mass law also states that if an insurance company does not spend at least a certain sum of money on you in relation to your premiums, they must return some of your premium to you at the end of every year in a re-embursement check.  The year we were denied 2,000 dollars in payment for social skills groups, our insurer gave us an end of the year rebate of 500.00.  The irony was just astounding to me.  So is a normal family going to spend even more money to hire a lawyer?  Their response to the law was to hire a consultant to obviously act as a barrier to treatment and set legal precedents for how to deny claims under the new law.  They have yet to run into a deep pocketed family who is willing or able to challenge their response to the law which was enacted almost 3 years ago.

 

It royally stinks....

 

I am another person who says, stay in England! 
 

livinglife is offline  
#6 of 8 Old 03-29-2013, 11:18 AM
 
Peony's Avatar
 
Join Date: Nov 2003
Posts: 15,914
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 5 Post(s)

Yeah, insurance is mandated to cover autism here as well, but it just doesn't work that way. There are loopholes everywhere. Stay in England! 


There is no way to happiness, happiness is the way.
Peony is offline  
#7 of 8 Old 03-31-2013, 01:53 PM
 
RiverTam's Avatar
 
Join Date: May 2009
Location: St. Louis, Missouri, USA
Posts: 929
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 0 Post(s)
Quote:
Originally Posted by deannanmc View Post

Oh wow. We had no idea. Autism wasn't even on our radar until we were already in England so we only know the NHS. What you both are going through sounds so hard; I'm so sorry.

 

I know in Maryland if you have an autism diagnosis there's a state law that says your insurance has to cover "treatment," which is nice in theory.  But in practice, who knows how much, what kind, or how well that actually works (ditto IEPs). A lot of people in a different forum local to the DC suburbs of Maryland are telling us to stay in England. We're really leaning that way.

 

I live in Illinois. Our insurance is mandated to cover autism tx, but because of the delay in diagnosis, it didn't cover anything. 

RiverTam is offline  
#8 of 8 Old 03-31-2013, 02:53 PM
 
Linda on the move's Avatar
 
Join Date: Jun 2005
Location: basking in the sunshine
Posts: 10,613
Mentioned: 0 Post(s)
Tagged: 0 Thread(s)
Quoted: 82 Post(s)
Quote:

Originally Posted by deannanmc View Post

 

....We also are a little strict about how doctors speak to and about our daughter: we refuse to allow them to use the words "deficits/splinter skills," and we don't find terms like "high-functioning/low-functioning" to be useful language to describe autism. This is just by way of saying...we might butt heads with professionals. :)

 

6. We don't really know much about what special education looks like in our local elementary, but we are assured by the therapists that our neighborhood school is a stand-out in a town of good elementary schools.

 

We love it here in the UK. It's been an amazing experience for our family, and the additional income from overseas benefits packages allows me to stay home with my children--something we don't think we could afford to do in Maryland where the cost of living is so high. But we know that in Baltimore we would be so close to Kennedy Krieger Institute and other amazing resources (...for a price).

 

That said, and knowing that services vary wildly even by towns within counties within states, and vary even more wildly by child...help! Share your stories! Are you constantly fighting with insurance companies or schools? If you homeschool, do you find there's local support (we haven't ruled that out)? We have meetings soon with a developmental pediatrician and with all the therapists, but we need US data points to help make our call! Thanks!!

 

My vote is to stay where you are because your whole family is happy there and she is getting what she needs.

 

Long term, you may find it easier to raise a child with autism in the US than in the UK because IMHO there is a less of a stigma here in the US (my DH is British).

 

We've raised our DD in the US and Canada, and we've had great experiences here in the US. Our insurance has paid for a ton of stuff, and what we've had to pay for out of pocket has more than been compensated for by the lower taxes and lower cost of living. For us, we are better off in the US. We've been blessed with teachers and schools who really were open to doing whatever worked for our daughter.  None the less, if you are getting what you need now where you are, there is no reason to come back here to get it.

 

We homeschooled for a long time and I honestly found that I had FAR less support as a homeschooler with a special needs child than I did with my DD in school. In school, she has a team and I have real breaks. With school, I also was able to connect with other moms of special needs kids. Other families have different experiences, though.

 

As far as high-functioning/low functioning, I've never heard a single person say "low functioning."  Does that phrase get used in the UK? Here, I've heard "profound" or "moderate" as other descriptive terms. "High functioning" used to rub me the wrong way, but it doesn't any more. My DD is now 16 and can talk about how she feels about being on the autism spectrum, and she doesn't have a problem with it, so I've let go of that. We've had great experiences with nearly every professional we've dealt with. I find that most people who have experience with kids with autism and CHOOSE to spend big chunks of their waking hours with them are pretty awesome as a group of people!


but everything has pros and cons  shrug.gif

Linda on the move is online now  
Reply

User Tag List

Thread Tools
Show Printable Version Show Printable Version
Email this Page Email this Page


Forum Jump: 

Posting Rules  
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Trackbacks are On
Pingbacks are On
Refbacks are Off