autism warrior momma facing cancer needs our help

 

this is melanie baldwin. melanie is a strong member of the autism community. she is also known as "booty kicker" with the thinking moms revolution, but her most important job is being mother to luke.  luke is severely affected by autism and as most of you know this means he requires round the clock care. 

 
having once beaten breast and bone (hip) cancer; she now suffers liver, spine, and bone cancer in her other hip.

 

melanie and her family need our help. please visit her give forward page to consider a donation, help share, and leave a comment of love and support to help melanie.

 

the autism bureau sends love and support to melanie and her family. please give as any amount is helpful.

 

thank you
 

Mito Madness

dear bch,

your name is eerily similar to bcw, but alas, you are a beast of a different color. you both steal children, but you seek to do it right out in the open. bcw is a sneaky evil bitch. if i had my way, you would both be six feet under, back from whence you came. the laws, the very ones you violate without consequence to you, prevent me from furthering my wishes into a makeshift plan. aaaaaaaaand....that’s not my style. i’d rather inflict the same seething misery you inflict, unto you, over a much longer period of time while i watch you suffer. think the movie seven.

let’s review. teenage girl has already been diagnosed with mitochondrial disorder, under the care of one of the world’s leading specialists for said disorder, dr. mark korson, from tufts medical center. you don’t need a link, he really is that well known.

chief of the program, director of the clinic, this leading physician had already diagnosed this girl’s sister and was treating both of them for mitochondrial disorder. girl becomes ill and is brought to your emergency room by parents seeking health care for her. they went to your facility at the request of one of her other physicians who recently had moved to your health care institution (light on the health care, heavy on the institution.) while there, she was not examined by that physician, and subsequently removed from parental custody and diagnosed with a psychological disorder. her treatments for mitochondrial disease, including a gastrointestinal intervention and her “vitamin cocktail” were discontinued. i put the vitamin cocktail in quotations as it has been presented, however, any parent with a kiddo on the spectrum or with mito, in the free world, knows that it is the standard of practice for treating mitochondrial disease. google it. not brain surgery. i digress. child is removed from parental custody, placed in a locked psych ward with extremely restricted visitation by parents and left there for.....wait for it.....a year. twelve months. during which time, child protective services has not appointed a child advocate to her case. multiple court dates, the patient’s own diagnosing physician testifies in court, and yet, the child remains in custody of the state. judge orders a child advocate. sure, because that’s really helpful now. child’s condition deteriorates as she is not receiving treatment for her already diagnosed complex multi-system disease, and therefore is suffering, decompensating and her life is in danger. we don’t know what psychotropic medications the physicians “overseeing” her care are prescribing, so they may be contraindicated for her with her metabolic insufficiency and actually adding to her already tenuous health status. in other words, they could be killing her. now, to complicate matters, the judge seeks to put a gag order on the parents just as this case starts to get some press. (hmmmm.....interesting. because i’m pretty sure if you stole my child and then tried to kill him, me talking about it would be the least of your worries, however, her parents are much better citizens than i.)

now...i have to say it. blessed be the child’s parents who have not already sold every last possession in order to raise enough money to hire some black ops style recon crew to bust their child out of there and then escape with their family to another country, killing the physicians and cps workers with stray bullets, on accident in the process. however, if that’s the plan, there’s a few overtime shifts with my name on them and a modest size donation. but because her parents aren’t murderous lunatics, like yourselves, they have chosen the righteous path. they have complied with every cockamamie stipulation put unto them. right up until the point where her dad spoke on a national news channel violating a gag order that was based on some law made up in your own head that removes a person’s freedom of speech if said freedom of speech discloses the kidnapping, drugging and violation of civil rights, and criminal activity that you, and the judge, sanctioned. but....only in that case....otherwise,speak away.

now, i thought of including the diagnostic criteria here for the psych disorder you picked, somatoform disorder, but really what difference does it make. we both know it’s bullshit. if you look it up for yourself you can clearly see that in order to meet the criteria the patient would have to be void of any other known medical condition that could cause the same symptoms. this child went to the emergency room for fluid resuscitation during a flu-like illness, a very expected treatment for a child with mitochondrial disease, and was kidnapped, locked against her will, denied medical treatment, and drugged. locked in seclusion. this case alone, violates so many rights and laws meant to protect not only patients, but people in general i am bewildered as to how it could go on for so long. i know we all are. and yet it did and it does. here’s the even bigger implication. after this case, what parent, in their right mind, would willingly take their child to the emergency room for treatment of mito symptoms from now on? bch has single-handedly denied medical care, based solely on fear, to thousands of children across this country. this was not some obscure disease with only one physician from some unknown hospital or private practice physician with his own ideas. this was a well-known, well documented, previously diagnosed disease by a leading physician in our country from a well-established big name medical center and university. what could you possibly tell a parent, now, to convince them that their child will not suffer the same fate? what‘s the outcome of that? a mitochondrial crisis during illness can be fatal. how can we, as parents, be asked to be in that position? take your child to the hospital to save his life, but risk losing him and having treatment withheld and possibly end his life because of it?

if i went out tonight and drank and smoked some crack and robbed a gas station and on the way to jail told the police i was having chest pain, they would take me to the emergency room. and i would get a chest pain “work up” to make sure my sorry ass wasn’t having a heart attack. and if i was, i would get treated. but at no point would they lock me in a psych ward and drug me. although it sounds goofy, it really does happen. because criminals, and drug addicts know the two complaints that will buy them a trip to the er and quite possibly an admission. chest pain and abdominal pain. swallowed some batteries...er. ate some glass...er. swallowed some razor blades...er. crushing chest pain after snorting that last line...er. so, i mention this to demonstrate two things. one, crack heads get great health care and kids with mito don’t. and two, some people just know how to work the system.

wadda mean?

well, just after i got done thinking to myself, why would bch do such an egregious thing? i mean, we all know we (parents with kids who have made up medical diagnosis) won’ t stop until there are criminal charges filed and someone’s sorry ass is in jail where they may or may not fall on a knife. then i saw this...

“children who are wards of the state may be included in research that presents minimal risk…or greater than minimal risk with a prospect of direct benefit.”

...posted on the blaze. and i started to think. because, probably, this policy is present at many, many institutions and it’s just being publicized because of this case. but it reminded me of this frickin douchebag, tool...

http://www.kennedykrieger.org/patient-care/faculty-staff/lee-wachtel

and how part of her research includes denying children who are autistic and have severe health problems, adequate health care and re-naming it “catatonia” so it can fit into her research protocol where kids who clearly have gastrointestinal disease get shocked with electroconvulsive therapy instead of getting treatment...

dr. wachtel is also pursuing -- with colleagues at kennedy krieger institute -- the combined usage of psychopharmacological and behavioral treatment modalities in the resolution of severe problem behaviors, such as self-injury and aggression, in children and adults with various forms of developmental disabilities.

(note to self…..to avoid incarceration in a federal prison do not ride an elevator with this woman where there are no cameras)

and then it occurred to me that possibly there’s a research protocol going on that we just don’t know about. hence the long hospitalization. only recently has this child been moved to another facility, which is strictly for psych treatment. and in order for her participation in the research protocol to be completed (we,as autism parents know about how if you pull your kid out of the research protocol half way through, they can’t use your shit...we’re just smart like that), she had to be kept inpatient for that long. because, honestly, does anyone stay inpatient in acute psych for a year? no. we all know that doesn’t really happen. they would have looked for someplace for her much sooner...ya know...if her parents didn’t have a problem with all the illegal stuff, and abusive nature of the program and all.

so what do we do now? how do we reconcile this most unbelievable and tragic chain of events that started with parents bringing their sick child to the emergency room for emergency treatment? well...there is only one thing we can do. pray.

i pray that this child remains stable enough until her parents can rescue her from the oppressive violation of her being, perpetrated, willfully by individuals employed by your healthcare organization.

i pray that the judge sees that he has done nothing to help this child and is risking her life by keeping her from her parents and her doctors.

i pray when those physicians and psychiatrists lay their heads down at night that they wake up in the depths of hell, suffering every moment for all of eternity. nothing they could ever do good, can undo the bad they have already done.

i pray that all those parents scared to bring their sick kids to the doctor and to the emergency room, overcome their fear and know that not all doctors are bad, and some really do care. because the alternative, can be devastating.

i pray that Jesus will watch over this child and keep her safe until she can be saved.

i pray that other families come forward and tell their stories of their children so that one more child can be saved from this travesty.

i pray that every person that reads this horrendous writing will say a prayer for this child, and maybe pick up the phone and make a call, or sign a petition, or make a donation to help this child.

lastly

i pray that justice will be served.

amen.

bch, you may not violate every patient right, parental right, civil right, and human right because you feel like it. because you have a big name, or a judge, or cps, or a research protocol. these are people, this is a child. and you have a legal and ethical obligation to treat her medical conditions, preserve her rights, and her parent’s rights.

you will be held accountable.

regards,

mrs. r

Public Comments for IACC

october 8^th 2013

good afternoon

my name is jill rubolino and i am the mother of a ten year old son who is recovered from autism. i am here today to speak to you as a parent, a health care professional, and a patient advocate.

while i am fully aware of the time constraints regarding public comments, i ask you for some leeway. last meeting we tolerated upwards of 45 minutes listening to the most painfully inappropriate and inaccurate description of “catatonia” i care to ever witness. i had to endure a description of children who clearly suffered in some way and who were obviously demonstrating the need for medical intervention, but would receive none. instead, they would receive a label of “catatonia”.  the fact that committee members thought that presentation was a valuable addition and appropriate use of time and resource is overshadowed only by the painful realization that autistic children were being medically neglected under the guise of research. i could have thought of a hundred better uses of that time, and this audience. in addition, i cannot go forward without mentioning the outrageous suggestion that autistic children wear a flotation device around their necks, and subsequently their airway, on a continual basis so their lives would be spared from the drowning that may occur if they should elope from their home and enter a body of water. i don’t mean this comment to be facetious as drowning deaths are tragically the number one cause of death for autistic children that wander. i say this to demonstrate the absurdity that this committee, a federally funded committee, charged with making recommendations about important issues affecting the autism community, would not look at that suggestion and take pause.  thousands of parents are out there, struggling every single day to keep their children safe.  i’m sure they were all appalled, as was i, by the ridiculous and repeated suggestion of something so absurd. it begs to question the validity of the participant’s qualifications and undermines the entire format which should focus on real world, real time issues and needs with appropriate, well thought out, mature suggestions. i do not need an interagency committee for a suggestion of this caliber. that comment was an insult, and a mockery of the seriousness with which the death of an autistic child should be discussed.

autism statistically outnumbers all other pediatric illnesses and continues to do so. this problem is of a magnitude that is almost unbelievable. where do we go for help? this committee makes recommendations and determines what issues get attention and funding in the coming years. while there are huge medical associations, organizations and entire hospitals devoted to other pediatric populations,  autism has a committee with no oversight and no accountability, that meets four times a year to address the needs of over  1.5 million children and adults. the response certainly doesn’t match the need. there should be and entire staff devoted solely to autism and huge medical centers across this country with multispecialty clinics that are treating patients and doing constant research, but there isn’t.

certainly, we are not the first set of parents to endure this neglect. while you expect us to accept this as an appropriate response, these former parents, called “refrigerator mothers”, had to endure far worse. not only exclusion, and discrimination, but oppression by a medical community that’s very existence is meant to serve the patient and family. a disgraceful, epic failure of humanity and abuse of power, influence and discrimination by physicians.  in the extraordinary film “refrigerator mothers”, dorothy groomer, an african american mother of an adult son with severe autism talks about her experience with physicians diagnosing her son as “emotionally disturbed”.  he was excluded from the diagnosis of autism because, as she stated, “we did not fit the classic mold for autism”, which at the time, was children of white, upper middle class, educated parents. her doctors told her that her son, stephen, could not be autistic because he was not white, and they assumed she was not educated, and therefore he was diagnosed as “emotionally disturbed” instead. unfortunately, we haven’t come very far. while parents continue to ask their doctors to investigate their child’s physical symptoms, they are repeatedly told those can only be attributed to their child’s autism and medical diagnostic testing and treatment are withheld. just as we look back at that time and see the response as barbaric, we will look back on this time in the same light.

while other parents of chronically ill children are able to access health care, comprehensive teams and assistance, our parents have to go it alone. policies to discriminate against our children are in place. while many parents, like me, know that their children have adverse reactions to vaccinations, pediatrician practices across our nation have created policies to discriminate against parents who choose to not vaccinate or not vaccinate according the recommended schedule. texas children’s pediatrics association has 48 locations in the houston area and is one of the largest pediatric practices in the nation. several of their office locations have “office policies” that state they will not take any patients whose parents choose not to vaccinate or not to vaccinate according to the recommended schedule regardless of the reason including both religious exemption and medical contraindication. they refused to accept my child as a patient and in calling multiple locations as well as texas children’s hospital both patient relations and their legal department, i could not be provided with a written policy, an explanation, or any legal framework to support this discriminatory policy, and yet it continues. in almost twenty years of bedside nursing i have never witnessed another patient population being denied healthcare based on their vaccination status. in fact, a large majority of patients are noncompliant with their plan of care and yet still receive immediate, comprehensive care. denying children access to health care based on vaccination status is akin to not seeing a diabetic patient because they don’t follow their diet or a renal patient who misses dialysis. furthermore, denying any child access to a medical home pediatrician based on vaccination status related to religious exemption is, in fact, religious discrimination.

the discrimination against this patient population by pediatricians at the local level, physician organizations at the national level, and agencies responsible for determining the response at the federal level will have the same legal accountability as other health care discrimination. for these reasons, we request a recommendation for a fully funded legal assistance network to ensure these children receive appropriate care, recommendations for mandatory investigation of discriminatory practices of any health care organizations receiving federal funds through medicaid programs, and an immediate intervention by this committee to formulate a plan to evaluate your own lack of response to this very serious medical neglect of an entire pediatric patient population.

from a clinical perspective this leaves a large group of medically complex children without basic medical care, without referrals to specialists, and the task of coordination of care resting solely on the parents. in addition to lack of access, those children that do enter into the healthcare system, rarely get diagnostic testing and certainly are not offered the same services as other pediatric patients with chronic illness including but not limited to autism specialists, child life services, pediatric  subspecialties, therapy services, social work, case management, nutrition and parent support groups. here is a list of just a few of the things autism parents are faced with instead:

lack of informed consent

violation of patient rights

unlawful notification of child protective services

failure to treat

failure to diagnose

unlawful seclusion, restraint and sedation

failure to meet federal mandates in regards to disability and communication accommodation

discrimination against a disabled population

failure to keep the patient safe from harm

failure to assess and treat pain

not investigating physical symptoms that occur in any patient, regardless of their autism diagnosis, is always medical neglect. whether the practitioner regards autism as a psychiatric diagnosis, a medical diagnosis or holds the opinion that autism is psychological with medical comorbidities does nothing to change that. if a patient presents to the emergency room with abdominal pain, diarrhea and vomiting, the process of diagnostic investigation begins the same way whether that patient is neurotypical, autistic, schizophrenic, alcoholic, an iv drug user, morbidly obese, diabetic, hiv, renal failure, man, woman, child, even a federal agency employee…….it all begins with the first step….perform a physical assessment and diagnostic work up. when a practitioner fails to address the patient’s symptoms based on their disability, it’s called discrimination.

 no other case of medical neglect, malpractice and discrimination illuminates my point better than the case of alex spourdalakis. alex was a 14 year old boy who suffered from severe autism and was hospitalized several times for an acute change in status related to aggression and gastrointestinal symptoms. he was kept in four point restraints for 22 consecutive days without an appropriate doctor’s order. he was given a cocktail of psychotropic drugs that was ever changing and ineffective. he had gastrointestinal disease that was never investigated. he was discharged home from advocate lutheran general hospital, in park ridge, illinois and nine days later was found dead after an apparent murder-suicide attempt. his mother, dorothy, and godmother found unconscious at the scene are currently incarcerated in illinois. i caution you to make a rebuttal comment about the impression that anyone in our community perpetuates the idea that taking your child’s life is ever acceptable no matter how difficult your road. a pristine example of everlasting devotion, dedication and meticulous care given to her child is michelle guppy and her son brandon, now 19, who at age 18 months experienced a vaccine injury and now suffers from relentless seizures and severe autism.  although she and i live in houston, the location of the largest medical center in the world, she cannot get adequate health care for her child. it is only because of her devotion to him, her faith in God and his warrior spirit, that he is alive today. this is the path we endorse, as difficult as it is.  dorothy did not follow the same path.  and before you speak out about calling for a hate crime, i suggest you check your email inbox. were you contacted to help this child, and didn’t? you see, this child was not hidden away from everyone; he was right up in our faces. he had been in and out of the hospital for months with countless requests by his mother for investigation of his medical problems and repeated reference to his gastrointestinal symptoms in his medical record, all going un-investigated. his patient rights were violated, his civil rights were violated, his disability rights were violated and he was a victim of medical neglect and malpractice. every local, state and federal agency was notified. every resource was contacted. every single agency available knew about this child, and yet, he was sent out into the world with no support and discharged to home with his mother to care for him on her own. without ever receiving medical treatment. why aren’t any of the same organizations calling for a hate crime, asking the hospital how they could safely discharge that patient?  why isn’t the state agency that was supposed to be monitoring this child being investigated? because this mom is in jail for killing her child. that doesn’t change those facts. we know those facts, we have those facts, and i am here to tell you, we will never go away. you can’t change the truth, no matter how hard you try. alex suffered the same medical neglect that all of our kids do. his mother suffered the same fate, when trying to advocate for her child’s health, doctors called child protective services. and this is the fate of so many parents. no support, no real help, and everyone covering up their part in it; their part in contributing to thousands of children being sent out into the world with parents who cannot keep them safe, or healthy because there is absolutely no appropriate healthcare.  alex was hospitalized multiple times over a period of seven months and yet not once, did he receive a comprehensive diagnostic work up. he received copious amount of psychotropic drugs and unlawful restraint. and may i remind you that restraining a patient without a physician order, and continuing a restraint that is already in place without a doctors order is considered assault and battery, every instance,  every time. but those healthcare providers won’t be prosecuted, because alex’s mom is in jail. but we won’t forget. this was a polarizing event for our community. since alex’s death, there have been more children killed by their parents.  when will it be enough? when will it be enough devastation for this committee to stand up and make some real world recommendations that address our needs?

the last iacc meeting i attended was july 9^th.  dr. frye and dr. buie gave wonderful presentations covering the need for medical investigation and treatment for our children’s medical issues. both physicians stated in their presentations that some children show tremendous improvement and even completely recover with treatment. my child is one of those. what i can’t figure out is why wouldn’t you want that? why would you not want to institute a comprehensive plan to medically treat these children to improve their outcomes?  dr. perrin from the atn and president-elect of the american academy of pediatrics was also in attendance. he stated that within the aap there was a task force already in existence working on all things related to autism. he expressed interest in working with both doctors, yet still no work has been done. since that meeting, neither physician has been contacted by anyone from this committee, the aap or the task force.  lyn redwood stressed the importance of addressing our kids’ medical issues and suggested a working group; still no work has been done. parents have come here time and time again requesting the need for addressing medical issues; still no work has been done.

i bring to you today the stories of many children, who like thousands out there, have parents who brought them to the doctor and to the hospital looking for help, but received none.  you see their pictures up on the screen and their stories are in my comments.  i encourage you to read them. their children suffer from seizures, abdominal pain, diarrhea and constipation, self- injurious behavior, relentless fevers, metabolic and mitochondrial disorders, immunological disorders, ataxia, unidentified rashes and a whole host of other symptoms. they are suffering, and yet they receive no medical care. they are being discriminated against because of their disability. this will stop. we will make it stop.

i publicly request you make a recommendation to formulate a comprehensive plan, including a working group, to address the medical needs and medical neglect of all autistic patients, children and adults. i remind you that as members of this committee you have a moral, ethical, and legal obligation to utilize the resources available to you, including federal funding, to address this need on an emergent basis.  we will continue to advocate for this patient population and will seek assistance for funding and legal representation to ensure our children and adults with autism receive the same access to medical care as all other patient populations. failure to make this a priority for this committee is unacceptable.

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

http://www.jointcommission.org/speak_up__know_your_rights/

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

http://www.hhs.gov/ocr/office/index.html

http://www.cdc.gov/ncbddd/aboutus/healthcare-disability.html

http://www.ada.gov/pcatoolkit/chap3toolkit.htm

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.

 

http://www.nad.org/issues/health-care/providers/questions-and-answers

 

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

http://www.ada.gov/t2hlt95.htm

 

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.

jill,

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

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

708-441-7651 mobile
708-216-7981 fax
adillon@lumc.edu

 

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 bringourkidstoiacc@gmail.com

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 iaccpublicinquiries@mail.nih.gov.

http://iacc.hhs.gov/public-comment/index.shtml

 

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.

https://www.surveymonkey.com/s/autismhealthcarediscrimination

that’s it. now……bitches

let’s ride

peace out

jill