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.