On occasion, Pink Sweatpants will be posting to my blog when it comes to topics that aren’t related to the GF-CF diet. Since I’m a squirrel, issues that are not food-related are of no interest to me.
I thought the World of Down Syndrome was overwhelming. Ha! The World of Autism could be better described as The Super Secret Black Hole of Autism. Said in my whiniest voice possible: Whyyyyy does everything have to be so DIFFICULT???!!! Down syndrome is so much more straight-forward. It’s a syndrome that’s been around for a long time and as “syndromes” go, it’s the most common. But autism is still so new, so mysterious. And suddenly, EVERYBODY’S GOT IT! The new statistics from the CDC say ‘as many as 1 in 50 American children have autism.’ That’s an absolutely terrifying statistic. In my mind, we’re talking about an epidemic. I wasn’t sure if pandemic would more appropriately describe it, but it turns out that “pandemic” refers to more of a worldwide outbreak, while an “epidemic” describes something happening more on a national level. I don’t know what the worldwide statistics for autism are, but I’m sure that the rate of its occurrence are highest in the US. And why? Is it genetically-modified food? I don’t know, and I only kind of care. My biggest concern is treating MY SON’S autism. I’ll leave it up to the scientists to figure out its cause.
If you’ve got a child with autism and you live in Massachusetts, you have a new best friend and her name is ARICA (Ah-REE-kah). ARICA is not a person; she’s an acronym for An Act Relative to Insurance Coverage for Autism. And she’s a law in Massachusetts so yeah, she’s kind of a big deal. ARICA essentially forces insurance companies to pay for treatments and therapies related to autism. But, of course, it’s far more complicated than that. I mean, aren’t ALL legal terms complicated?
It seems like the most recommended treatment for autism is ABA, or Applied Behavior Analysis. The specifics of ABA don’t interest me. All I care about is that my son gets as much of it as he needs. My new pal ARICA forces my insurance company to cover Jack’s ABA. But wait! I spoke too soon because, as it turns out, MY insurance company DOESN’T cover ABA and yours might not either. How is this possible?
I was fortunate enough to attend a conference this past weekend called “Parenting a Child with Autism: Putting the Pieces Together”.
The morning began with a Keynote Address from Margaret Bauman, MD. If you have a child with autism, you should know that Dr. Bauman is basically Queen of the Autism Community. If her lecture had been 10 hours I would’ve sat there, fascinated, for 10 hours while she talked. But alas, she was only scheduled to speak for an hour and I got to the conference about 30 minutes late (had to drive from York, Maine to Endicott College in Beverly and didn’t expect Endicott College to have sooooo maaaaany buildings! Took me forever to find the right one.) so I missed a lot of great information. But the first workshop I attended that morning was “Understanding Insurance Benefits for Children with ASD” by Amy Weinstock. That may sound boring to you, but I COULDN’T WAIT to hear Amy speak. I’m having trouble getting my insurance company to cover ABA for Jack and I wanted to understand the ARICA law better so I could figure out WHY we were having problems getting coverage. Let me tell you, Amy Weinstock is hilarious. I don’t know how to describe it, but she’s just got this way of speaking that makes her incredibly interesting even when she’s talking about something like insurance laws. Amy was a big part of creating the ARICA law and getting it passed in Massachusetts. One of the slides in her slide presentation contains a quote from Dr. Robert Jarvik:
“Leaders are visionaries with a poorly developed sense of fear and no concept of the odds against them.”
Amy likes to say that they were too naive to realize that what they were trying to do was IMPOSSIBLE. Forcing insurance companies in Massachusetts to shell out cash for therapy to treat a condition that 1 in 50 children have?! That’s insane! Very few states have a law like this, so if you have a child with autism and you live in Massachusetts CONSIDER YOURSELF FORTUNATE. But as wonderful as ARICA is, it does have its limitations and these limitations may effect you and your child:
1. If you have MassHealth or CommonHealth, you have a problem because ARICA only applies to private insurance policies. It doesn’t even make sense to me that a law in Massachusetts DOESN’T apply to insurance funded BY Massachusetts, but that’s the reality. Hopefully in the near future, MassHealth will agree to cover ABA as well, but for now . . . nope! HOWEVER, there ARE ways you can get autism services covered by MassHealth. Stick with me and I’ll explain how:
EXIBIT A: MassHealth
Does your child have MassHealth? Because if (s)he has autism, (s)he needs it. Bottom line. “But”, you say, “that makes no sense because you just said that MassHealth won’t cover ABA. So why on earth would my child NEED MassHealth?” –OR– you say “I already have private insurance so I don’t need MassHealth.”–OR–you say “I’m a billionaire and I make soooo much money that I wouldn’t qualify for MassHealth.” Well congratulations on having private insurance and/or being a billionaire, but despite the fact that you already have private insurance and/or make too much money to qualify for MassHealth, your child’s disability makes him/her eligible for CommonHealth, which is a division of MassHealth. So click on the link below and fill out the application RIGHT NOW:
IMPORTANT: If you already have MassHealth, have you completed the MassHealth Child Disability Supplement form? YOU NEED TO. Here’s the link:
Now we’re one of those “billionaire” families that’s just oozing money and we have more disposable income than we know what to do with (aka we rent an apartment from my dad and I wear shoes that have chew marks made by the rabbit we had 6 YEARS AGO), but we have CommonHealth as our secondary insurance. It’s not free. In fact we pay nearly $200 a month to have CommonHealth, IN ADDITION TO what we pay for our private insurance. So why bother having it? Well, Jack’s been hospitalized several times over the past few years and he’s had two sinus surgeries with an admission fee of $500 a pop. CommonHealth pays that $500 that your primary insurance company won’t pay. Jack’s been on antibiotics for (literally) years, as well as a thyroid medication, reflux medication, and a steroid nasal spray. CommonHealth pays the remainder of the pharmacy fee that our primary insurance won’t pay. CommonHealth also pays for all of Jack’s copays, as well as the PediaSure that our private insurance refuses to pay for. So the bottom line is, if you have a child with a disability you NEED to sign up for MassHealth or CommonHealth. There are instances where signing up for CommonHealth costs more than its worth, but if you have a chronically ill child or a child with multiple diagnoses, CommonHealth will save you money in the long-run.
EXIBIT B: MSCPA
Okay, so you’ve got MassHealth or CommonHealth and your child has a MassHealth or CommonHealth ID number. NOW YOU NEED TO SIGN UP WITH THIS PROGRAM! MSCPA stands for “MassHealth Standard/CommonHealth Premium Assistance Program”. I honestly don’t know how it works if you have MassHealth, but here’s how it works with CommonHealth: So Dave has money taken out of his paycheck to pay for our BlueCross/BlueShield PPO. That’s our healthcare premium. And now we’ve got Jack enrolled with CommonHealth, which isn’t cheap. Well the Premium Assistance Program helps offset some of that cost. So instead of having to pay $200 a month for Jack’s CommonHealth, we pay $170 a month. For more information, click on this link:
EXIBIT C: DDS
And the acronyms continue! The State uses so many of them that it’s downright confusing and annoying. DDS is the “Department of Developmental Services”. IF YOU HAVE A CHILD WITH AUTISM WHO IS OVER 3 AND ALREADY ENROLLED WITH MASSHEALTH OR COMMONHEALTH, YOU NEED NEED NEED TO ENROLL THEM WITH DDS! I CANNOT stress this enough. DDS is the key that opens so many doors in Massachusetts. I’ll explain ‘why’ in a bit, but for now I want you to head on over to this website, scroll aaall the way to the bottom, click on the “Application Form for Autism Division ONLY Eligibility”, print out the ridiculously long application, and send it in. Yesterday.
So let’s recap: 1) Enroll you child in MassHealth or CommonHealth, 2) Sign up for Premium Assistance, 3) Enroll your child with DDS. Once you’ve done all of that (Which takes time and paperwork. Lots of paperwork.), NOW you’re ready for:
EXIBIT D: PCA! PCA! PCA! PCA!
This is why it’s SO SO SO SO SO important for your child to have MassHealth or CommonHealth: PCA! If you’ve got a child with autism, you need help. It’s exhausting. The PCA Program (Personal Care Attendant) does just that. A state agency (in our case, it was the Northeast ARC) comes to your house and assesses how many hours per week your child would qualify for. They take into consideration whether or not your child can dress, bathe, or eat independently. Whether they’re a safety risk and would require an attendant while going to-and-from doctor’s appointments (in our case, Jack would always unbuckle his seatbelt while I was driving), etc. It’s up to you to find your own PCA (we use family members, but you can find PCAs online), but the state pays them to come in for the predetermined amount of hours per week that your child qualifies for. Yeah, it’s awesome.
EXIBIT E: Now here’s where it doesn’t even make sense, but you still want to know about this!
Alright, so now you’ve got a DDS Service Coordinator and you’d like to know if there are any programs, events, or activities in your community that could benefit your child. DDS will then refer you to a local agency that provides such things. These local agencies can also provide funding (I’ve been told around $500 per year per family) for things that you would normally have to pay for out-of-pocket. In our case, we needed a stroller because Jack was outgrowing his umbrella stroller and we needed something bigger that he’d be able to use for a long time. Our DDS Service Coordinator referred us to LifeLinks in Chelmsford, and they recommended a special needs website where we purchased the stroller, and then they reimbursed us for the cost. They also offer discounted music therapy and other special events. They CLAIM that they can provide money for respite (where you essentially have someone come in and babysit your child so you can have a life), but these are state-funded agencies and the state is broke. Don’t hold your breath when it comes to receiving respite. The way I explain it to people is that DDS is SO huge that they out-source to smaller, community-based facilities. So even though you have a DDS Service Coordinator, you probably won’t be calling them for very much; you’ll be calling whatever community agency they refer you to instead. I don’t know if that’s an accurate explanation of how it all works, but that’s how I interpret it!
EXIBIT F: CBHI and CSA’s
CBHI stands for “Children’s Behavioral Health Initiative” and it’s available through MassHealth and CommonHealth. This program is where you can get ABA services if MassHealth is refusing to pay for them (since they don’t have to abide by the ARICA law). Of course, the terminology is different. Instead of calling it ABA, we’re calling it “In-Home Behavioral Services”. For more information, click on the link below and scroll down to the subheading In-Home Therapy*.
The way this program works is that Massachusetts contracts with 32 different Community Service Agencies (or CSA’s) that would provide these CBHI benefits. You would use the CSA in your area and In-Home Therapy (what MassHealth essentially calls ABA) would be provided by a company called Beacon. Here are the CSA’s in Massachusetts:
EXIBIT G: ICC
If you read the information on the website 2 links above, you’ll stumble across a subheading entitled Intensive Care Coordination (ICC). Because Jack is SUCH a complicated case, we have Intensive Care Coordination. Their goal is to provide what’s known as “wraparound services” for challenging children. Your child does NOT need to be a total trainwreck for you to need Intensive Care Coordination! If you’re overwhelmed and you feel like you need more help, call your DDS Service Coordinator and ask them which local agency provides Intensive Care Coordination. They’ll contact that agency and a case worker will come to your house to consult with you. In our case, Fidelity House is the agency that provides ICC in our area.
2. Now that I’m so exhausted I can hardly think straight, we’re bringin’ it back to ARICA! The beginning of this post discussed how MassHealth and CommonHealth don’t have to abide by ARICA laws. There’s a 2nd reason you may have trouble getting your insurance to cover ABA, and it’s the reason we’re having trouble getting ABA insurance coverage for Jack. So we have AWESOME insurance. BlueCross/BlueShield PPO . . . of Ohio. Yep, Ohio. Since Ohio doesn’t have to abide by Massachusetts’ ARICA laws, they can refuse to cover Jack’s ABA. In fact, in our case the representatives out in Ohio had never even heard of the CPT codes (medical diagnosis codes) I was giving them to check if they provided ABA coverage! So, end of story? As Amy Weinstock said: ”‘No’ never means ‘no’.” I could give you a long explanation about how we’re going to resolve the situation (because it can be resolved and we will most likely end up getting BlueCross/BlueShield PPO of Ohio to pay for Jack’s ABA), but it’s a long, boring story and I’m exhausted. The short answer is this: The NE Index/UMASS Medical School Shriver Center called up Amy Weinstock and asked her if she’d like to head up an Autism Insurance Resource Center. So thanks to them, if you’re having problems getting your insurance company to pay for autism treatment all you have to do is call 781-642-0248 or click on the link below and you can talk to a real PERSON who will help you get coverage.
As if Bostonians aren’t proud enough of where we live, ARICA is another reason to be very, very proud!