Making Medicaid More Transparent: A Question From A Utah Legislator

I was asked to get opinions on this idea by a Legislator.  I will be sharing your comments with this Legislator, so now is your time to allow your ideas to be heard.

 When struggling with accountability within the welfare system the lack of transparency (where the money is going and on whose behalf?) makes it difficult for legislators and the public to have any oversight into whether the uses are for appropriate safety net purposes or improper lifestyle hammocks uses. Federal law likely doesn’t allow disclosure, but if it did, what would you think about more transparency?

I asked for clarification with the terms ‘transparency’ and ‘safety net vs. improper lifestyle hammock uses.’

The response I received:

  • An example of the hammock would be a college student driving a BMW while having Medicaid pay for the birth of his baby.

  • Another example would be a hospital, in trying to lure Medicaid dollars their way, offering free pedicures and manicures to it’s new mothers.  (This example was given to me by Dan Liljenquist)


One simple example of greater transparency would to publish an annual report identifying the name, city of residence, and amount of money by service (Medicaid, food stamps, etc.). This might allow folks to better understand the welfare needs of some people and might also help them identify folks living a life inconsistent with claiming welfare (those cases like the BMW-driving student on Medicaid or the person living in a million dollar home with a $60K boat living on welfare).

The Utah Legislature is looking for those receiving public money to first be doing all they can for themselves.  If you are capable of working, but would rather sit at home collecting a monthly check, that would be example of not being as self sufficient as you could be.

In my experience I have no clue how a family with a medically fragile child with special needs could scam the system.  I believe this Legislator understands that too.

This isn’t a fully formed concept.  It needs some opinions and ideas to help flesh it out.  Your opinions and ideas, which I hope you will share in the comments section.

To be fair, I will share my thoughts on this.  The money Parker receives via his waiver comes from the taxes of someone else.   Our family recognizes this and  treats Parker’s waiver with respect and gratitude.  In our own way, we try to tread as lightly as we can on Parker’s waiver:  blenderized diet, cloth diapering, paying out of pocket for disposables, things like that.  No, it’s not much.  It is our way of trying to show respect.

If being more transparent helps the Utah Legislature and the citizens of Utah feel better about social safety nets, then I’m all for it.  Place our family at the top of the list.   My goal is keeping Parker alive.


My husband is paid by tax dollars.  His salary is listed online.  (If you choose to look it up, please remember that most sites list his compensation by adding both his actual salary and his benefits package together.  You’ll need to subtract close to 40,000 to come close to what his actual PRE TAX take home pay is. Just sayin’.)

Why shouldn’t the legislature be allowed to be transparent in this same way for those who receive Medicaid?  The only negative I could come up with is that there could be those who would ‘turn someone in’ out of spite or trying to stir a pot of some sort.  There could be those who feel humiliated by others knowing they receive help from social safety nets.  I got over that long ago.  Again, my goal is to keep Parker alive.

Your opinion may be different than mine.  That’s okay.  I hope we can respectfully discuss this topic in the comments section below.

PS:  I added any bolds in this post,  in case some visitors didn’t want to read the entire post, but just get the most important ideas.



About Tammy and Parker

Special Needs Blogger, and homeschooling Mom, heavily involved in advocacy for all kids with special needs in Utah.


  1. Sarah Ince

    Okay so they are wanting to list the people on medicaid as in names? you will run into federal laws that will prohibit it. ACLU will have a fit. they should probably stop now and not bother.

    Let alone the whack job that decides to take out all the people on FS as an example..shoots them one by one because now their names are out in the open…it won’t be that hard to find their addresses. They do not work for the city/county/state.

    What would be helpful is for the state legislature to be actually have to go and be interviewed for foodstamps, TANF and medicaid. fill out the paperwork..bring all their SS#’s, birth certificates, bank account information, shot records, ect.

    While we are at it have them go apply for SSI too and have them find out what it’s like to jump through those hoops..have all their 401k info, their car info. Have them think in their heads..hey you just lost your job..but the car you own looks too expensive..better sell it so you don’t look like a schmuck so you can put your wife on Medicaid.

    P.S. did you tell them that you actually can’t qualify for any welfare if you own a boat?? Unless they are doing it fraudulently…that is a resource..a pretty darn big one. Heck that should be registered. All one would need to do is have the registration office computer system mix with the medicaid/FS system so that you know what Welfare Recipient owns to make sure that they are telling the truth.

    I have a feeling if they actually went and applied and just went to see what it was like..they might get a grasp of how much flipping information you are already handing the state. How much pride you are losing and that asking the state to hand out your name like it’s a smartee is beyond appalling. Let alone most of these names are going to be CHILDREN. Seriously. Tammy they won’t be putting your name…they will be putting your son’s name out there. Do you really want your sons name up for grabs??? Pretty sure as well violation of HIPPAA is going to be in play for all medicaid as well. As Utah just told people how much your son cost in medical dollars..and Utah has to follow HIPPAA.

    I’ll have my medicaid guru’s get back to me on the specific laws they will break by doing so (cause fairly certain this will be a big medicaid no no). But tell them, that instead of trying to rub the noses of the poor in the dirt, they ought to learn what it’s like a little bit more, to apply. I think they will “get it” just a titch better.

    • Tammy and Parker says:

      Sarah, I already put out so much info on this blog, that for us it wouldn’t be that big of a deal. That is why other opinions were needed. :)

      Plus, each year we already have to fork over all that info to the state when they go to see if Parker still qualifies for his waiver.

  2. Kristina says:

    Utah isn’t the only state that has a Medicaid waiver program. Perhaps they should be benchmarking other state’s programs that are running well instead of trying to reinvent the wheel. I am NOT interested in having my daughter’s information put out there for anyone to see, so I’m glad our state doesn’t mandate that. What I’ve seen of Utah’s program from your blog here makes me really wonder about your state – what happened to taking care of our vulnerable children? Perhaps looking at other state programs will give them hard facts and information to use to evaluate their own program.

    • Tammy and Parker says:


      Thanks for your comment. I think this would be addressed more towards those on general medicaid rather than medicaid that goes towards kids with disabilities. A way of trying to reform Medicaid while making it sustainable AND making sure it got to those who needed it as a safety net.

  3. Sarah Ince

    Okay here is more info for them

    Straight from my wonderful medicaid guru’s mouth:

    I discovered that IL had an online list of the most expensive kids in IL Medicaid–listed by number not name–and my husband reported it to them and they had to remove it. That is totally against HIPAA.

    Under the US Health Insurance Portability and Accountability Act (HIPAA), PHI that is linked based on the following list of 18 identifiers must be treated with special care:[1]

    All geographical identifiers smaller than a state
    Dates (other than year) directly related to an individual
    Phone numbers
    Fax numbers
    Email addresses
    Social Security numbers
    Medical record numbers
    Health insurance beneficiary numbers
    Account numbers
    Certificate/license numbers
    Vehicle identifiers and serial numbers, including license plate numbers;
    Device identifiers and serial numbers;
    Web Uniform Resource Locators (URLs)
    Internet Protocol (IP) address numbers
    Biometric identifiers, including finger, retinal and voice prints
    Full face photographic images and any comparable images
    Any other unique identifying number, characteristic, or code except the unique code assigned by the investigator to code the data

    So sad to say……….not…….that idea gets shot down before they even try it. And even though your comfortable putting your son name out in the public..fairly certain Utah is in no mood to have thousands and thousands of parents suing them because they put their children’s names out in the public domain. The ACLU will have a field day with this as well. Along with Guardian ad Litem cause that who has legal custody of the adult who is severely disabled…seriously do they ever think more then 5 seconds ahead with these things????

    I’ll go ask my special ed doctorate sister..see how many more laws I can round up for you.

  4. Danielle says:

    I am VERY much against anyone knowing my name/kids’ names on some public list like that. It is hard enough for me to know I need it; I don’t want a million people seeing our names on a list like that and making even more judgments against me. I do think, however, that homes should be surprise-visited and people who are in a sudden financial need for state aid after being wealthy should have to sell all their assets and downgrade first. Nobody NEEDS a Lexus SUV or a 9 bedroom mansion. Also, ALL adults in a house should have to provide income verification. If someone has 3 or 4 adult roomies but are only claiming themselves as having income, that is cheating the system. If you have multiple roomies, said roomies should be contributing to bills/rent. If you need Medicaid-D for someone, and you make a good income, you should have to pay a small premium every month for it. Just a few ideas.

  5. Hmm. Wow tough issues here. I’m not familiar with all the laws, but I know here in Texas there are government programs with extremely long waiting lists (15-years) for benefits and also monies provided for assistant caretakers and adaptive equipment and the like. People with Down syndrome usually qualify to have the assistant caretakers paid at $10.00 an hour, and it often amounts to little more than babysitting. I mean, that’s wonderful for the recipient, but I don’t think a taxpayer should have to pay for the babysitter for my child, whether he is 5 or 25. If it was for nursing care that my kiddo couldn’t live without, that would be completely different. But if I choose to have my adult child with Down syndrome (or another disability) living at home with me, and I want to go out shopping or to the movies and need someone to stay with him, why should my neighbor’s tax dollars pay for it?

    Apparently there is a one-time $10,000 max bonus for something like adaptive equipment. I have no idea if that is state or federal assistance. I have heard of that money going towards a hot tub (in the mother’s bathroom and used to alleviate the mother’s aching back and no mention of it being used for the daughter in the wheelchair). Another person had considered using it to put an elevator in thier two-story house for the 20-year-old son with Down syndrome who had no mobility issues (although if he stops getting exercise by taking the stairs, I assume he may develop some mobility issues).

    In those cases, I think some intervention and oversight is called for. At the same time, I think as taxpayers, people with disabilities are entitled to privacy and dignity. I pay my taxes and my son should be able to reap the benefits of the system if he qualifies as eligible. There is simply no way to guarantee that all the money is used in the right way. So I think there should be strict guidelines to begin with as far as what gets paid for and what doesn’t (obviously I think a vent should get paid for – an elevator in the above-mentioned scenario, not so much). But I would rather a few people get away with milking the system anonymously than every person who qualifies for assistance lose thier right to privacy and anonymity.

    In a system where all recipients’ identity is not kept private, I envision protestors, media, brutal watchdogs showing up on front lawns, humiliation, etc. for government program participants. Since the participants are presumably taxpayers, I don’t think they should have to check their dignity and privacy at the door when they receive benefits.

    Just my 2 cents. I can see the other side of it too. We work so hard for every penny, and to know that some of it is going to just sheer waste to support people who are WAAYYYYY better off than we are is maddening. I sure wish I could just send it straight to Parker.


  6. maria cordner says:

    My son some services based on disability provided by medicaid. Honestly, I don’t even have time to think cloth diapers (I run my laundry all day long and some night time too (90% id his – a 141 lbs boy that needs total supervision and is non-verbal). medicaid provides others medical services occasional. I thought is records were public allready – I don’t mind audits, the service providers have them all the time. I believe that in our case, my son’s elegibility is certainly not based in our income but in the amount of $ is saving the State from not being in a residential facility. We still supplements even the needs that are provided. I despised the mentality that countributing citizens in need cannot benefit of support. My taxes…your taxes…who cares (Look at the Greeks more than 50% don’t pay their taxes, they don’t trust their govern and are apatic towards elections and where did that take them? As long as the use is appropriate and not wasted, people should be able to draw from some help – that’s the ethical thing to do. I don’t want to be in a windown display for all to see but anybody that has a say in it should be able to access our records! I welcome them too!!

  7. maria cordner says:

    I have to have some corrections done…crazy keyboard!
    “…my son receives some…” “90% are his”….”others services occasionally”…”I thought his records are public”…”we still add supplements even to the needs that are provided”…”a window display for the general morbid curiosity”

    Sorry, it is towards the end of the day, the brain tends to shut down!

  8. I’m always baffled by these sorts of questions. Clearly, the people asking have no idea what the rest of us live with.

    We do not qualify for any aid, by a long shot, with 2 tech-type employed parents – even on a leave of absence right now, we make too much. We have a high-end (“Cadillac”) insurance plan through my employer (the COBRA premiums are as much as my mortgage on my house, which I’m under water on). And we *still* needed a waiver for medicaid to catch all the stupid things our regular insurance doesn’t manage to cover – like therapy, which we get 50 total visits a year to any type, or AFOs, or adaptive communication. We’ve fought every time we’ve had to renew. I’ve had to get state-cabinet-level employees involved, for goodness sake!

    For his waiver, I cannot save money for A to go to college unless I pay a lawyer to make a trust, basically running an end run around the legal system.

    Having medicaid means we get WIC – which provides “formula” (high cal meal replacement drinks) for A. You’d’ve thought I was trying to rob a bank when I walked into their office to apply, between making too much money for their normal process and having a preemie in the NICU who couldn’t attend their appointment who was also on medicaid and going to get benefits. Really? Because I have nothing better to do than spend 2 hours taking off work, sitting in a crowded room asking for help getting my kids what they need?

    As to the guy driving a BMW having medicaid pay for his baby’s birth….around here, medicaid apps ask for info on all parents of the child, and whether or not they’re paying support. If he’s not married to his girlfriend, he can’t put her on his insurance at most jobs (and if we could fix that little issue, that’d be awesome), and he can’t add the baby until the baby is born….but the birth costs fall solely on the mother, because they’re *her* medical issues. Want to fix that? Give that guy a chance to put his girlfriend on his insurance. Go after fathers for child support. Make birth expenses tied to the baby, retroactively, rather than the mother.

    Clearly, a guy with a boat who’s on welfare doesn’t technically own the boat. I suspect he’d have paid a lawyer for a trust, much like the special needs trusts we are creating for our kids’ college money, to take care of that, and I don’t know how you manage to get rid of one without getting rid of the other, but I know that if you’re old and in a nursing home, if you’ve given away assets the government can take them back to pay your bills….

    [WORDPRESS HASHCASH] The poster sent us ‘0 which is not a hashcash value.

  9. It’s a rough question Tammy! I’m here in Washington and we’re living on one teacher’s salary (and that with only 5 years experience) with 2 kids and 2 on the way. We have had a LOT of support from our families, but the state is paying for my pregnancy. I have my own insurance, but I’m thankful that the state is picking it up because there is no way we could pay for any complications with a twin birth.
    I don’t think any one would say that our family lives extravagantly (or if they did they don’t know that it’s our parents paying for some things); we have one cell phone (not a smartphone) between the two of us, Netflix is our only “subscription” other than the internet service, we do use cloth diapers too although won’t be able to with 3 in diapers (hard water). Things like that.

    All that being said, qualifying for the state aid was pretty simple. I know there are people out there gaming the system and that sucks, but I just wonder how the “state” would really police things any better than they do already. Create another oversight bureaucracy? Maybe the answer lies in doing more thorough intake interviews to be sure the person applying really presents all evidence. Things like that BMW driving student. Is it because he’s not married to the baby’s mother that he could get away with it? Those are the things that do make people mad, but I can’t see pulling the rug out from everyone (honest people included) would really help anything.

    In the end I think people get so worked up over the minority that are abusing things they can’t see the good that programs like this do. My husband is in a job he loves, helping other students who are struggling (he works at an alternative school) to hopefully make a better life for themselves. He definitely could have a better paying job and we wouldn’t need any assistance (engineering background). But what about the good he’s doing for all these students? And everyone complains we need teachers that put their hearts into their jobs… :P

    I know I’m not really answering your question, but this is where my thoughts went.

  10. Sarah Ince

    okay I had my sister work on ways to figure out how it wouldn’t work for TANF and Food stamps because I think I already established they cannot do it for medicaid. It violated Hippa

    These are your issues with regards to Food stamps. Every child that gets Free or Reduced Lunch is covered under FERPA. A great deal of those children get Food Stamps. FERPA forbids there names from being released, so in a way due to FERPA you cannot release any child name getting Food Stamps AND Free or Reduced Lunch.

    All children that are Foster Children get Medicaid, you cannot release any Foster Care children name and city ever EVER. Huge NO NO. I don’t think they are normally on FS from what I can tell, but if their Foster Parent was to lose their Job I would imagine they would be temporarily???

    Your also dealing with children often on medicaid, foodstamps and TANF that are in the Juvenile Justice System Their names cannot be released.

    For adults you have adults that have been victims of domestic abuse, that are living in shelters, giving away their general name and city gives away where they are living.

    You also have rape victims that you would be giving away there name and general city as well, making them feel even less secure then they did already.

    And every single time any state has tried to mess with the Food Stamps, TANF, or Medicaid laws, thinking state laws actually trump federal laws the ACLU gets involved drags it out makes it very expensive and they tend to not win, it’s not worth it..

    They would do themselves a big favor. Learn how it is to actually apply. Set up a database that looks for vehicles/boats/ ect. And honestly if you want to work on fraud, find out the daddy of each baby and find out where he lives. Find out who each woman coming in is living with unless she’s admitting to living with a husband or boyfriend. Because I can promise you, what is going on, is they are saying they are living on there own and they are not. I used to be an apartment manager and they would go in and say “I’m living on my own:” when boyfriend was actually living there. That is how they could get benefits..sad thing was it’s not like they were living the high life..they were barely making it as it was. It would just force more men to grow up.

    As for the car situation, in reality, as long as he owed on the car, it’s not considered a resource and there is nothing they can do about it. sucks, but that is the reality, he’s not forced to sell a vehicle he’s probably upside in. Now if he owns it outright then it would be a resource and unless it’s a really old BMW, it should be worth too much. Most of the time our cars by the time we owe them out right are worth not much at all LOL..but anyways..that is how it works. Your not obligated to sell a car, to get doesn’t do anyone much good to sell your car. And if your upside down in do you sell it??? Food for thought.

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