Wednesday, August 7, 2013

iacc and medical discrimination


our kids’ count.i know i lack basic writing skills so you probably overlooked that meaning. i really wanted our kids’ count. how many are we? well, let me look, 1 in 50. so how many is that? it says 1 in 50 “school kids” so i’m assuming that means school age children between the ages of 5 and 18? whatev, that’s a lot of kiddos. it’s two percent.  i looked up the latest population stats and two percent is really about 1.3 million kids. okay. hang tight. then i saw these reports…

“one in fifty kids is diagnosed with cancer”

“one in fifty kids has diabetes”

“one in fifty kids is diagnosed with hiv.”

oh wait, no i didn’t. because it’s not happening. it’s just our kids with autism. omg!!! did she just compare autism to hiv?!?! damn straight i did. if your kid has hiv, they actually know what’s going on. if your kid has autism, ninety-nine percent of mainstream medicine has no idea what’s going on with your kid.  but that’s not why i bring it up….totally. what if your kid has autism and hiv? you’d never know it because your kid, by design, does not get any medical diagnostic testing, how about autism and a brain tumor? nope. i mean they both have a neurologic symptom but autism doesn’t get checked out so if your kid has the world’s worst evil luck and they have both, that brain tumor is gonna go undetected. (actually happened, true story)   why do they do that, you say? because they can. who’s stopping them?

is it negligence that over one million children have autism and somehow nobody knows what causes it? really? how much common sense does that make? if you work in medicine, you know what i’m talking about. if you can breathe, you know what i’m talking about. let’s think of all the medical advances we have. nanotechnology, minimally invasive surgery, robotics, vaccines in a chip, but autism, frickin mystery. can you name one other disease, syndrome, whatever you like to call it, lump them all together, can you name one other “thing” that has a ratio of 5:1 gender bias that scientists cannot figure out? not me. okay, let’s go here…..there’s no biomarker. right. well let’s just close down the factory because lord knows there’s not a whole bunch of other shit that is diagnosed by exclusionary criteria. and truth be told, most of us didn’t even get a simple frickin blood test. wtf?  ok, enough about that. get to the point.

dear medical complex

it’s over

your long run of “we will ignore the medical side so that we won’t do any simple basic medical testing so that we won’t find the basic answer which we already know has to do with vaccines and immunological dysfunction and toxic load and all that other shit and we’ll lock them out of the system altogether”…..days are over. over!!!!!!!!!!!!!!

here’s why. you are so stupid that you let our numbers get so big that now we are actually a large separate population. and one that has a child with a disability…..and rights, disability rights….and votes…..and lawyers. you’ve made it so difficult for us to access healthcare for our kids that we have gone to great lengths outside of your system, to try to get them well. and that has cost us money, jobs, homes, marriages, family, friends, our own health. it has devastated us as a community. what happened, simple sociology here, simple math. we hooked up. yep. somehow in this fucked up mess baby jesus put people together like me and kelly peters…..can you say swear off? how about jeanna reed and amanda lochbaum? better get your game face on that mandee looks all sweet but she will cut you and jeanna will record that shit for later. lj goes and dawn loughborough…….umm…..they come with a complimentary small pack of tissue so you can clean yourself up off the floor. and thousands of other “autism hook ups” that really make us all just one big population of fearless people who would die for their kid, have nothing to lose, and are as angry as hell. good job einsteins.

so why do other parents with sick kids get to take their kids to a doctor that’s covered by insurance? when they go to the hospital, they get tests. and if their child is chronically ill, they get a social worker, and a case manager, and a child life specialist, countless specialty physicians, all the nurses are thoughtful and caring and supportive. why not us?

because we have not yet flexed our ‘patient rights’ muscle. if you’re not sure if you have one, scrape the crusted almond flour off your sleeve, we know you haven’t showered today, and check it………it’s there. probably extremely underdeveloped, it may be covered by your large poopisode muscle. well, i am here today to tell you, we are one. one big patient rights organization. we are patients…….we have rights…….and we are fairly organized. we are already there people.

let’s get down to business. do you know your patient rights? if not….check them out here

do you know your disability rights related to health care? if not check them out here

and when was the last time you took your disabled child to a health care provider who attempted to communicate with him/her in the manner they are accustomed to? no?! did you know that was a violation of their civil rights? well it is. this is from the national association of the deaf. but our kids aren’t deaf!!  i know, i know. check out title ii and iii below it.



doctors, nurses, dentists, specialists, therapists, and other health care providers must communicate effectively to provide appropriate, effective, quality health care services.

federal disability discrimination laws mandate equal access to and an equal opportunity to participate in and benefit from health care services, and effective communication with individuals who are deaf or hard of hearing. these laws include:

o    section 504 of the rehabilitation act of 1973 – applies to federal health care services and facilities; and health care providers who are also recipients of federal financial assistance, usually provided by direct funding (such as federal medicaid funds) or by grants (such as a federal research grant).

o    title ii of the americans with disabilities act – applies to all public (state and local) health care providers.

o    title iii of the americans with disabilities act – applies to all private health care providers.

title iii of the americans with disabilities act (ada) prohibits discrimination against individuals with disabilities by places of public accommodation. 42 u.s.c. §§ 12181 - 12189. private health care providers are considered places of public accommodation. the u.s. department of justice issued regulations under title iii of the ada at 28 c.f.r. part 36. the department’s analysis to this regulation is at 56 fed. reg. 35544 (july 26, 1991).


title ii highlights


vi. communications

state and local governments must ensure effective communication with individuals with disabilities.

where necessary to ensure that communications with individuals with hearing, vision, or speech impairments are as effective as communications with others, the public entity must provide appropriate auxiliary aids.

"auxiliary aids" include such services or devices as qualified interpreters, assistive listening headsets, television captioning and decoders, telecommunications devices for deaf persons (tdd's), videotext displays, readers, taped texts, brailled materials, and large print materials.

a public entity may not charge an individual with a disability for the use of an auxiliary aid.

telephone emergency services, including 911 services, must provide direct access to individuals with speech or hearing impairments.

public entities are not required to provide auxiliary aids that would result in a fundamental alteration in the nature of a service, program, or activity or in undue financial and administrative burdens. however, public entities must still furnish another auxiliary aid, if available, that does not result in a fundamental alteration or undue burdens.


title iii highlights

vi. auxiliary aids

a public accommodation must provide auxiliary aids and services when they are necessary to ensure effective communication with individuals with hearing, vision, or speech impairments.

"auxiliary aids" include such services or devices as qualified interpreters, assistive listening headsets, television captioning and decoders, telecommunications devices for deaf persons (tdd's), videotext displays, readers, taped texts, brailled materials, and large print materials.

the auxiliary aid requirement is flexible. for example, a brailled menu is not required, if waiters are instructed to read the menu to blind customers.

auxiliary aids that would result in an undue burden, (i.e., "significant difficulty or expense") or in a fundamental alteration in the nature of the goods or services are not required by the regulation. however, a public accommodation must still furnish another auxiliary aid, if available, that does not result in a fundamental alteration or an undue burden.


how many places have you taken your child where you arrived and they had a whole policy in place, or protocol to follow so your child’s disability is accommodated? none? remember alex spourdalakis. i asked loyola several times what their policies and protocols were regarding caring for autistic patients. so did fox news chicago. here’s what i got. love the “re: your other question”. after speaking with me on the phone i think she felt that when dealing with me, the less words, the better. i’m not sure though. you could always call and ask her.


here (attached below) is the statement we provided to the media.

re: your other question:

our approach to patient care is based on the needs of the patient.


anne dillon
director of pr/media relations loyola university health system
708-216-8232 desk

708-441-7651 mobile
708-216-7981 fax


and in regards to his treatment at their facility ……..according to them, this explains everything:


loyola university health system statement

june 10, 2013

patient safety and privacy in police investigations


one of our highest priorities as a health system is to ensure that our patients are safe and that their privacy is protected in accordance with federal hipaa laws and the wishes of the patient.  we cannot speak to a specific patient situation without the patient’s permission. in circumstances that involve police investigations, we work collaboratively with law enforcement and other state and federal agencies to help support these inquiries.


really? because i was doing some reading and i found this under title iii

ii. overview of requirements

public accommodations must --

provide goods and services in an integrated setting, unless separate or different measures are necessary to ensure equal opportunity.

eliminate unnecessary eligibility standards or rules that deny individuals with disabilities an equal opportunity to enjoy the goods and services of a place of public accommodation.

make reasonable modifications in policies, practices, and procedures that deny equal access to individuals with disabilities, unless a fundamental alteration would result in the nature of the goods and services provided.

furnish auxiliary aids when necessary to ensure effective communication, unless an undue burden or fundamental alteration would result.

remove architectural and structural communication barriers in existing facilities where readily achievable.

provide readily achievable alternative measures when removal of barriers is not readily achievable.

provide equivalent transportation services and purchase accessible vehicles in certain circumstances.

maintain accessible features of facilities and equipment.


so. what does all this mean for us? well, it means that everything to provide our children with comprehensive medical care covered by insurance is already in place. it means that our kids deserve the same treatment as all other patient populations. we deserve the same accommodations, multidisciplinary teams, support services, and treatment with respect. it means that a committee like the iacc, who uses funding to meet for one day four times a year cannot do anything productive for a patient population of 1.3 million children. especially since they only decided just this year to ask a few doctors to attend. their responsibility is to make recommendations. why don’t they recommend we stop being discriminated against? why don’t they recommend that a medical standard of care be developed?  it really means it’s up to us. yes. yet another frickin thing on our long list of shit we have to take care of. but the great thing is now we have our “hook up”. and here’s how we are gonna roll.

step one

realize we are not gonna change the painfully obvious avoidance of the real issues our kids face without making our presence known. every fucking time. i’ll use the same theory i use with my husband. i’m in it for distance and irritation. go to the iacc meeting if you can. once you’re there, you realize you really need to be there. these are our kids they’re talking about. if not…..send your child. that’s right. send your kid to iacc. to see how….go to step two.

step two

send me a two page letter explaining how your child is sick, and they didn’t get the medical care that they needed. please don’t send more than two pages or i won’t be able to include it. realize, i will be using this information for more than just the iacc meeting so do not include any personal information that you are not comfortable with sharing. that doesn’t mean i’ll post it on facebook, it just means if i get an elevator ride with an attorney, you better damn bet i’m pressing that emergency stop button and whipping those bad boys out to show him. and if i should happen to be speaking with one of the student organizations at south texas law school, i will want to use your stories to make my point. and if i just happen to be in dc for a congressional hearing and someone in congress is within my perimeter……you guessed it….distance and irritation. so if you’re reading this blog, this will serve as my disclaimer. on the flipside, your kid’s story will go to iacc. because all of our kids count. every last one.

please send your two page story with picture, if you like, to

i will not be able to return them. but i promise i will make them count. promise.

now……you should also submit them to written public comment to get them into the public record. it’s very very very very very easy. all you need to do is send it in an email to


step three

take my survey. please. do it. the results will accompany our information and help demonstrate our need for appropriate access to healthcare. it's 23 yes or no questions.

that’s it. now……bitches

let’s ride

peace out