Petition to Food and Drug Administration, Dr. Scott Gottlieb, Dr. Jeffrey Shuren
FDA: Ban Torture of People with Disabilities and #StopTheShock
The Judge Rotenberg Center (JRC) in Canton, Massachusetts is a “treatment center” that uses their own, non-FDA approved electric shock devices on disabled people, primarily autistic people with and without intellectual disabilities, as a way of controlling their behavior. Children and adults at the JRC wear shock devices all day and staff of the facility deliver painful electric shocks remotely. It is the only program in the U.S. that uses these devices as punishment. The United Nations Special Rapporteur on Torture determined that the use of these devices is not treatment -- it is torture. In 2012 the American public became aware of what was going on inside JRC when video of Andre McCollins being shocked was released. Andre was a teenage resident of JRC. In 2002, he one day refused to take his coat off. The staff responded by placing Andre in restraints for 7 hours and shocking him 31 times. After this torture, Andre was in shock, comatose, and suffered burn wounds on his arms and legs. The trauma that he went through continues to negatively affect his mental health to this day. In 2014 the FDA held hearings about these devices. In April 2016 it drafted regulations to ban contingent shock -- but it has not implemented them. It is time for FDA to release the regulations. What happened to Andre McCollins is not an isolated incident at JRC. The Judge Rotenberg Center claims that the electric shocks keep people from hurting themselves or others, but residents at the JRC are shocked for everything from swearing to standing up. Furthermore, electric shocks do not work to help people with disabilities avoid self-injury or aggression -- positive supports do. For every person being tortured at the JRC, there are many more people with the exact same disabilities, dealing with the exact same issues, being successfully supported in their communities without the use of dangerous and painful punishments. The worldwide autistic community and our allies call on Scott Gottlieb, Commissioner the U.S. Food and Drug Administration, to immediately ban the use of contingent electric shock in behavior modification. Additionally, we call for the state of Massachusetts to immediately shut down the Judge Rotenberg Center (JRC) in Canton, Massachusetts. Shock torture is only one of the abuses at JRC. It needs to be closed entirely, and appropriate services created in its place. All people have the right to freedom. This includes autistic people. The United States and the State of Massachusetts must protect those rights. Stop the shock, close JRC, and provide our people with the supports they need. Please sign this petition.
Petition to Christine Wormuth, Kathleen H. Hicks, Lloyd J. Austin III, GENERAL Mark A. Milley, Ramón Colón-López
Military Families Cry Foul as Tricare Changes the Autism Care Demonstration Without Notice
Exceptional Families of the Military (EFM) has reviewed the recent treatment changes issued in the latest TRICARE Operations Manual (TOM) for the TRICARE Autism Care Demonstration (ACD) program (Found here). We remain grateful to the Defense Health Agency (DHA) for their oversight of the ACD program, and their continued stewardship over the implementation of applied behavior analysis (ABA) services. However, we have serious concerns that some of these changes will decrease access to care for military families while putting the families in difficult positions. ABA in the school and community setting According to section 220.127.116.11, after May 1, 2021, no new authorizations will be given for ABA services in the school allowing BTs to deliver the 1:1 service. Rather, services in the school will be restricted to being implemented only and solely by the BCBA (8.10.15), should the BCBA deem that in school services are clinically necessary. Limiting the delivery of 1:1 services to a BCBA in a school restricts every child’s access to care. BCBAs often manage caseloads of 6 - 10 clients and implementing school-based services for a few children on their caseload would require the other clients to receive less services from the BCBA. Additionally, it should be to the discretion of the ABA Supervisor who implements the services in accordance with how the tiered model is implemented across other locations (e.g. home, school) and not dictated by a policy. According to section 8.10.11, services will no longer be authorized across community settings such as “sporting events, camps, and other settings as determined by the contractor.” Additionally, it states “any location not listed must be reviewed and approved by the contractor.” This limitation prevents the child from receiving the individualized and specific treatment consistent with their diagnosis. Families will be left to figure out how best to support their child in community events like dental appointments, getting haircuts, and interacting with their peers at sporting events. Exceptional Families of the Military acknowledges that the ACD benefit is not at all meant to supplant care provided by a nanny, caregiver, or parent. However, a child’s diagnosis is not experienced in only certain settings approved by the TOM, but in all settings that they encounter. Autism Service Navigator In section 6.1 and beyond, the role of the Autism Service Navigator (ASN) is discussed at length. The ASN will be the mandatory single point of contact for the military family. This individual has the sole responsibility for creating a comprehensive care plan (CCP). The CCP is required to be developed prior to ABA services starting and is to include a discharge and transition plan. The TOM does not specify whether or not this plan is specific to ABA services but implies such information. Moreover, the TOM does not specify that they are required to have training or certifications to develop the CCP, which includes identification of a treatment trajectory for the child receiving services. The ASN is responsible for reviewing and incorporating all autism assessments into the care plan. The TOM provides the ASN with a 90-day window to complete these activities. This must occur prior to the beneficiary starting ABA services. This requirement coupled with the requirement for beneficiaries to first be enrolled in the ECHO program poses additional and significant delays to access to clinically necessary care. Diagnostic Criteria to Begin ABA In section 18.104.22.168, it indicates that a diagnosis must be made using one of their “validated assessment tools” from the provided list. What is not specified is whether or not starting ABA services is contingent on completion of one of the assessments. Some of them are time and labor intensive, requiring the diagnosing provider to have a particular set of clinical skills as well as resources. The current TOM, in section 8.2.5, reflects that if the specialized diagnosing provider was unable to complete one or more of the outcome measures at the time of the initial diagnosis, that a year is given to allow for the outcome measures to be completed, but that services could begin. New Outcome Measures Required In section 22.214.171.124 and 126.96.36.199, there are two new mandatory parent assessments are being required to monitor the parent and parent-child relationship. We are concerned with how this information will be used in relation to the service member’s career in the military. The Parenting Stress Index, Fourth Edition (PSI-4) and Stress Index for Parents of Adolescents (SIPA) are required to be administered to the parent every 6 months. These assessments will also evaluate the stress between the parent and spouse/partner. TRICARE is requesting ABA providers deliver these assessments and report results to the ASN. TRICARE does not specify how this information will be used or if the information will be shared outside of the ACD program.
SPLC – Recognize Autism Speaks as an anti-autism hate group and track anti-disability hate
From SPLC's website: "The Southern Poverty Law Center defines a hate group as an organization or collection of individuals that – based on its official statements or principles, the statements of its leaders, or its activities – has beliefs or practices that attack or malign an entire class of people, typically for their immutable characteristics. An organization does not need to have engaged in criminal conduct or have followed their speech with actual unlawful action to be labeled a hate group." They further say in response to the question, "Can organizations operating in the mainstream be hate groups?" (link): "Yes. In fact, it's even more important to call out groups that demonize others while having a foothold in the mainstream. It's easy to recognize the hater in a white sheet and pointy hat for what he or she is. It's the wolf in sheep's clothing that's harder to identify." In 2009, the 1969 United States federal hate-crime law was expanded to include crimes motivated by a victim's actual or perceived disability—this was the same expansion which included crimes motivated by perceived or actual sexual orientation and gender identity. In the year following the 2009 expansion, SPLC began monitoring anti-LGBTQ+ organizations and groups. Similarly, science suggests that conversion "therapy" does not work and can leave its victims traumatized. The co-founder of gay conversion therapy is also the founder of autism conversion therapy, called "Applied Behavioral Analysis" or ABA. When "homosexuality" was removed from the DSM (Diagnostic and Statistic Manual of Mental Disorders) in the 1970s, the co-founder left gay conversion therapy to focus on autism conversion therapy at least partly because of a lack of funding for gay conversion therapy. In the same way many anti-LGBTQ+ and racist hate groups claim they are "pro-family" or "pro-religion" or concerned with something called "white culture", many disability hate groups and organizations claim they are about support for parents and family of disabled people. Some institutions will get shut down after years of complaints from their disabled patients, but others continue to operate. It is not a competition between which marginalized group has it worse—homosexuality was removed from the DSM in the 1970s and there is still conversion therapy being practiced to this day—but hate against disabled people has been called the "Invisible Hate Crime" ... who called it that? The Southern Poverty Law Center for one in their article, "The Invisible Hate Crime". Content warning for descriptions of extreme violence in that article. Disabled people are more likely to be victims of violence compared to currently-abled people. Disabled people with cognitive disabilities such as autism are over four times as likely to be victims of violence than currently-abled people (57.9 per 1000 compared to 12.7 per 1000 for the years between 2011 and 2015). The Southern Poverty Law Center should track disability hate groups, even if those hate groups claim to be in our best interest. Autism Speaks was founded in 2005 and has been decidedly anti-autism from its founding. One cannot be against autism without also being against autistic people, but Autism Speaks goes far beyond simply pathologizing our existence. Here are some highlights of their hateful rhetoric and some of the harm they have brought to especially the American conversation around autism: Autism Speaks frames and views autism as a disease to be cleansed from the human race. Autism Speaks recommends autism conversion therapy to be started as early as possible for autistic children, ages as young as 12 months old. The specific versions of the conversion therapy they recommend all are recommended at over 20 hours per week, and most are over 25 hours per week. Through their government lobbying, they have made autism conversion therapy covered by state insurances in all 50 states of America. Through their government lobbying, they have shut down legislation with their primary complaint being that there was not enough conversion therapy included. Aside: This lobbying can be seen in the records of Virginia's legislature hearing public opinion on a proposal for more teaching training. There was impassioned argument to provide additional support for teachers to help autistic students, followed by a few sentences of the proposal not specifying the teachers would receive what they call "evidence-based treatments" for autism. This is one of their dog whistles to refer to ABA. Evidence for that was provided by the same person who gave evidence that gay conversion therapy worked too. The legislator responded by killing the bill until they could discuss further with the "experts". Autism Speaks are not the experts on autism any more than NARTH were the experts on LGBTQ+ people. Autism Speaks has a track record of releasing anti-autism propaganda campaigns that frame autistic children as burdens who will tear apart your family. In their propaganda, their officers have expressed views of wanting to murder their autistic child and this is framed as being understandable. Their propaganda is sympathetic towards filicide-ideation and creates a hostile environment for autistic people. Their propaganda contributes to some of the major stigma about autism and faced by autistic people, contributing to the increased violence done to autistic people and the suicide rates of autistic people. You can watch their 2006 film "Autism Every Day" on YouTube. There is a 13-minute version that includes their Vice President of the time talking about wanting to murder her daughter and kill herself while her daughter is in the room with her during the interview. The longer 40-minute plus version was screened at the Sundance Film Festival. I do not recommend watching it as it is quite horrific, but one copy of it is at this link at the time of writing: "Autism Every Day". Their 2009 "I Am Autism" campaign is also available on YouTube. Directed by Alfonso Cuarón, it is a little under 4 minutes. Again, I do not recommend watching it as it is quite horrific, but one copy of it is at this link at the time of writing: "I Am Autism". Autism Speaks perpetuated anti-vax conspiracy theories about autism for years after it was clear that vaccines do not cause autism. They released one statement during the 2015 measles outbreaks saying that children should be vaccinated, but continued to support anti-vax theories and research until at least 2017. The original study that the MMR vaccine caused autism was withdrawn in 2010 and the author lost their medical license. It has been disproven, yet even if one accepts that it was true, their opposition to the measles vaccine frames autism as being worse than death. They always refer to "environmental factors" of autism, which is both a dog whistle referring to vaccines and many other dangerous conspiracy theories and associated "cures", while also offering support for conversion therapy making someone somehow not autistic. Autism Speaks directs parents of newly-identified autistic children to seek out other parents who have tried older "cures" for autism that have "worked" for their children in the same paragraph as admitting those "cures" have been found harmful. They frame themselves as being the "experts" that should be trusted on autism, referencing their .org domain name for their website and establishing branches of "Autism Speaks U" at universities across the country. They have incredible influence at all levels and branches of government. They also have the backing of millions of dollars for lobbying and research they want. Autism Speaks creates a climate of understanding murdering disabled children, implying our deaths are better than our lives would be and that it is somehow out of "mercy" to put us out of our suffering, while also telling new parents that half of all autistic children are "wanderers" and the number one cause of death for autistic children who wander is by drowning. Autism Speaks encourages all parents to get genetic testing of their already-diagnosed children and submit genetic information to ongoing studies. They have stated goals of getting earlier and earlier identification of autistic children. If the children are already born, this is with the intent that conversion therapy can start as soon as possible. Autism Speaks has influenced the conversation around conversion therapy for autistic children to the point that objection to conversion therapy is framed like being anti-vax and anti-science; ironic, as they are one of the biggest reasons why anti-vax conspiracies are so prominent in today's society. Autism Speaks refers to autistic people using pathologizing language and frames the choice of the majority of both autistic and disabled people to refer to themselves as autistic people and disabled people as being misguided and not scientific. They cling to saying "person with autism" and say they do so because that's the medical term. This is just the highlights, but I believe this is more than enough to consider Autism Speaks as a hate group against autistic people by definition. Even before that, SPLC should track hate against disabled people and anti-disability hate groups the same as it tracks other types of hate. They have an entire category for "hate music" that currently has a little more than ten organizations. Autism Speaks is an organization that has branches across the country and a reach that is growing to be international and is influencing the spread of autism conversion therapy to other countries now. SPLC has done a lot of good work fighting gay conversion therapy, if their recognition of Autism Speaks and the harm they have done can give pause to one additional legislator that they may not be the real "experts" on a new bill or stop one family from uncritically accepting AS's advice to ignore the harm they can see in conversion therapy of their one-year-old, then it will have been worth this petition. SPLC was involved in the white paper, "Hate-Free Philanthropy: Identifying Opportunities and Obstacles to Safeguard the Sector". In that paper, they have the quote, "At a bare minimum, screening practices and policies should be implemented against organizations and activities that contribute to a climate of fear and risk for vulnerable and targeted communities, as the role of hate propaganda in fueling violence is well documented." I agree, SPLC. I hope you do as well. Thank you for reading,
Petition to U.S. House of Representatives, U.S. Senate
Help individuals with Autism and related disorders get help during crisis situations.
* For more details of our story, visit our Facebook page “A Voice for Joshua” * This petition is for changes in mobile crisis response, treatment options available, changes in the admission process for individuals seeking acute treatment for aggression and self-Injurious behaviors and permanent residential services once it is recognized as the best option for these individuals. We are seeking these changes after our family sought help for our son over a period of several years to no avail. Joshua has severe aggression and self-injurious behaviors and is also diagnosed with cerebral palsy, seizure disorder, autism and behavioral disorders. We was told multiple times by mobile crisis that they couldn’t help our son because he wasn’t suicidal and he was so low functioning that they wasn’t prepared to help a child like our son. We are not the only family that has been told this either, multiple families that have contacted us through our page has had the same responses from crisis. Treatment options are also limited in our state due to funding cuts and limits put on licensing facilities to care for these patients. Families are also waiting days, weeks and even months in Emergency rooms just to get admitted into a treatment facility. The admission processes are a bottleneck that delays these individuals in getting the treatment they so desperately need. Mental health professionals and insurance companies recognize that special needs patients; especially those with severe Autism, will withdraw and not act out when they have a sudden change of environment (this is what happens when they are sent for treatment, it’s called a “honeymoon period”) This is one of the main issues our family and other families have run into. Our son was sent for treatment for 12 days and then he was sent home due to not having outbursts, 4 days later he was in extreme rages again. We called seeking help and was told that we had to start the entire process all over again. These processes take months and that was in May of 2017 and we didn’t get help until my son had a very severe outburston 2-12-18 and I received severe injuries from trying to keep him from hurting hisself. It can take years of waiting and jumping through hoops just to get help for these individuals and with the severity of the aggression some have, it puts families in desperate and dangerous situations without any help. I’m asking for legislation to correct these deficiencies in programs and protocols that are supposed to protect these individuals and their families. This is a widespread and very serious issue that needs to be addressed on state and federal levels. THESE FAMILIES ARE BEGGING FOR HELP! IT IS TIME TO FIX THE ISSUES!
Petition to Marvel, The Walt Disney Company, Walt Disney, Jeremy Renner, Kevin Feige, Marvel Studios, Hailee Steinfeld
Make "HAWKEYE Season 2" & give super-fan w/ autism, a cameo as young/teenage Clint Barton
TO: Marvel Studios - Walt Disney CompanyKevin Feige - The cast & crew of HAWKEYE (specifically): Jeremy Renner & Hailee Steinfeld OVERALL PETITION GOAL: Give #1 biggest Hawkeye fan, THOMAS MEEHAN (who suffers from autism & type 1 diabetes) a cameo as young/teen Clint Barton during a flashback in HAWKEYE Season 2 BACKGROUND INFORMATION/STORY: Hello there. My name is Thomas Meehan. I'm 19, well actually I just turned 20 the other month, and I have Autism, Type 1 Diabetes, ADHD, OCD & Celiac disease. I'm also quite literally the biggest/#1 Hawkeye fan in the world. Specifically in regards to the Hawkeye from the MCU (Marvel Cinematic Universe) portrayed by the one and only Jeremy Lee Renner. Now first things first, what is this petition actually petitioning? The title gives a brief overview of this petition's goal, but I would like to expand on it a little further. Essentially it's exactly what the title says, if I get enough signatures on this, my crazy, literal dream, could actually become a reality. That dream that this petition could actually make a reality is for me, Thomas H Meehan, the biggest Hawkeye fan in the world, to have a cameo as young/teenage Clint Barton, aged around 16-20, in a 5-15 minute flashback during Hawkeye Season 2. As of right now, it's not even confirmed that Hawkeye will get a season 2, but I sure hope it does. So this petition, will not only give me my cameo/scene but will also ensure that Hawkeye season 2 does happen, well at least that's the goal. This petition will also, hopefully, allow me to be introduced to have a special meeting and photo op with both of the stars in the show, Hawkeye, played by the amazing Jeremy Renner & Kate Bishop, by incredible Hailee Steinfeld. So, just a few reasons why this is not only possible but would actually make a lot of sense for Marvel/Disney from a marketing standpoint. First off, allowing me to have this role would remind the public of & reinforce the true ideologies that Disney was built on, the idea that "dreams do come true". This is an ideal that was shared with both Walt Disney himself, but also the creator of Marvel, Stan Lee. Both of these figures truly believed this, which is why they literally spent their entire lives trying to uphold this principle. This also would be great for "representation" which seems to be very important nowadays. After all, I would be THE FIRST actor in the MCU to have diabetes (however this wouldn't be shown on screen as I can easily remove my Dexcom & insulin pump while shooting. In addition to this, I would also be the only or one of the only actors in the MCU to have autism (the only other prominent actor, at least that I can think of, would be Sir Anthony Hopkins who portrayed Odin). The same goes for MCU actors with ADHD & OCD. The next thing is because this would be a way to really show the fanbase that Disney & Marvel actually do care about their fans. This is something that would be very powerful because lately many fans, including myself to some degree, are starting to believe that Disney only cares about money & profit, and while that is obviously true to some degree, I truly believe that there are people at both Disney & Marvel that value the fans more than just their money, specifically people like Kevin Feige, Jeremy Renner, Hailee Steinfeld, and of course the late Walt Disney & Stan Lee. I know better than anyone this feeling because I've experienced it firsthand. As I said, I'll go into more detail on it later but essentially, I wanted more than anything to go to the LA premiere of HAWKEYE but I did not receive a ticket, despite the fact that, with all due respect, I honestly deserved it much more than half of the people that were invited. Everyone kept saying "this show is only possible because of the fans" and "we couldn't have done this without them" but while they said this, I was there. I was literally 100 ft away on across the street. It felt like a cruel joke. Thanking "the fans" for making the show a possibility, meanwhile, "the fans" (me) were watching it all unfold. A feeling I will never forget, my dream, so close, yet so far. I was a mere 100 ft away from it while at the same time I felt 100 miles away. Ok, so I went off on a bit of a tangent there, but I'm pretty sure you get the picture. We need to be reminded that Marvel, that Disney, actually do care about the fans. No not "the fans" who are super-models & TikTok famous, I mean the real everyday fans. Also, this would finally give Hawkeye/Clint Barton & fans of Hawkeye, like me, the respect that we deserve. Clint Barton is easily the most disrespected & forgotten about member of the Original Six Avengers. Even after 10 years of waiting, when Hawkeye finally got his own tv show, he arguably wasn't even the main, despite the show being literally named HAWKEYE. Now, no hate for the show, as I've said, I freaking loved it, and I love Kate Bishop, but when a show is titled after a character, you would assume that said character would be THE star, not the co-star. To put this in another way, Kate Bishop actually had was supposed to be about Hawkeye, the character when Clint was finally given his own tv show, after a decade his time to shine got his time to shine, in his own tv show, Jeremy Renner receives an inordinate amount of hate, compared to almost any other actor in the MCU. Constantly made fun of called Amazing Hawkeye Season 2 would but at the same time I never felt so close yet so far away f to the thing I wanted As I've said, I was and am the number one Hawkeye fan. I supported the show, I promoted it, almost 3 years before it was even released. But the thing that really just hurt me, was the fact that in all the press, and interviews for the show, the one thing that was repeated by almost every single member of the cast, was that "The fans are what made this show possible" "we couldn't have done it without you" which is all true, the thing was, I am "the fans" Not trying to seem cocky, but I was I really did experience this feeling of just disappointment, and anger. believed as it would both provide positive publicity for the company & show, would work & further progress the story of Hawkeye/Clint Barton I have been a fan of Hawkeye for a long time, basically the entirety of my teenage years. I love Hawkeye but right now it's getting to the point that it's become all I think or talk about. I need to get this role so I can just be done and move on with my life while at the same time actually accomplishing my wildest dream and proving to everybody, to all those who bullied and teased me, to those who told me that it wasn't/isn't possible. I'm gonna sound cliche here, but I need to show people, including myself, that dreams really do come true, that anything is possible. So, the dream, the literal dream I've had countless times is, well originally it was to meet Jeremy Renner and attend the HAWKEYE premiere at the El Capitan Theatre in LA California. Long story short but that didn't pan out, not as I expected at least. If for some reason you want to hear more about this crazy journey of mine, I go into full detail about this insane adventure I took. But right now I want to tell you exactly why you should sign this petition or at least, why I'd really appreciate it if you did sign it. I like to see this as a far-fetched reality but at the same time an almost attainable fantasy. I am 19, well actually I just turned 20 on the 3rd of April, which is weird to think about cause I don't really feel that old, or look that old or even act that old...Right, ok sorry. Anyways, as you may have noticed, I suffer from, well many things actually, but most notable are level 1 autism and type 1 diabetes, as well as ADHD, OCD, and celiac disease. Now, I'm going to be completely honest here, I hate doing this type of thing, I don't normally try to take advantage of my disabilities or want people to pity me, because you shouldn't well not any more than you would anyone else. However, with this being said, there are times when I do need to remind people about all of my special qualities. I live a good life, I have loving parents/family & siblings, great friends, a nice home, and a good education. I'm not saying that this is the most important petition you can sign, not even close, all I'm saying is that after you've signed some of the more important and urgent ones, like the crisis in Ukraine or the middle east, or equality and that, after you sign those, if you have an extra couple seconds to also click on mine, it could really make this insane dream I have become a reality. Thank you so much for your time. In fact, I was so sure that I would be able to pull this off that I actually attempted to sneak into the event. This is by far the craziest thing I had ever attempted. But like I said, it was my dream and I had to at least try. So I devised a plan. Using the $500 my Nana left me in her will after she passed a couple of years earlier, I was going to buy a plane ticket to LA from where I live, MA. So literally across the entire country. Then I planned to buy a ticket to see a movie showing at the theatre the night before, and once I was in the theatre, I would find a room, like a closet or a lockable bathroom or something, and just lock myself in there until the next morning when the premiere was set to take place. Then, I would put on my Ronin (Hawkeye's alter-ego, kind) costume, which I would have carried in my backpack, and wait for the event to start. Once I had the costume on, I would find my way into the main theatre or meeting area during all the commotion. And from there I would be in. No one would notice one more guy dressed up as Ronin, and since I had the mask and hood on because I was Ronin, not Hawkeye, no one would really even see my face. Then I'd find my way through the crowd until I found Jeremy Renner & Hailee Steinfeld, either before or after the showing of the first 2 episodes. Well despite my seemingly foolproof plan, this is not how it went down. I had to tell my Mom and Dad about my quest, and not too surprisingly they reminded me that not only was that actually illegal and I might end up in jail, but also that I had never done really anything that, traveling, on my own and LA is not the place to from a then naive and inexperienced teenage like me. So after my literal presentation on why it would work and convincing both my parents that I would somehow be able to finagle my way in, they agreed to let me go, BUT my aunt/godmother would have to accompany me. I was more than willing to accept these terms and so on November 16th, I set out on a journey that would forever change my life, turns out, just not in the way I was hoping. So after a very long plane ride of around 6 hours, we arrived in Los Angeles CA. One of the biggest changes to my plan was that instead of hiding out in a bathroom for a night, my Aunt actually got us a suite at the Marriott, which was definitely better than my plan of sleeping in a closet or bathroom stall. One of the perks of being a Mariott gold member I guess. Anyways, by the time we got to the hotel, it was pretty late so we got dinner and then went to bed. The next day I woke up, in a mixture of pure excitement but also nervous and honestly pretty scared. This was the day I'd been waiting for. I wasn't dreaming this time, this was it. So after having a nice breakfast & meeting a very nice cop/security officer, who I actually told my whole plan to, I got changed into my Ronin suit/costume and with the help of the nice receptionist, we ordered an Uber to take us into the city, where the premiere was set to take place.
Adults with Autism Need a Secure Future
My brother is 18 and will be finished with high school this month. However, my brother has severe autism, aggression, and mostly nonverbal. There are only 3 day programs we could find in our city, Colorado Springs, that would be willing to take him. 2 out of 3 have months and years of a wait-list. We can't drive him all the way to Denver. My brother doesn't stop just being autistic after he gets out of high school. He needs that structure or dwindles out of control. It causes him a lot of anxiety. Adults with autism deserve more. They deserve better care. They deserve more than just put them in a mental institution. They deserve the support they get through school all their lives to be continued for the rest of their lives. Most people with severe autism don't have that choice. They don't have a voice or control over their lives. They deserve to be at home, be at a day program (school), and have all the supports they need to live with their family or whoever takes care of them. To be my brother's voice is a great honor and sad at the same time. I want legislation to enact a law that mandates that people with autism have a school they go to after they get out of high school. Just like they did their WHOLE lives. I want it to be voluntary to people with autism and parents, etc. I want a law that protects their structure and stop running into day programs that won't take them because they are too aggressive or too autistic. Adults with autism need more support and they have the right to an education. My brother and people like him deserve a school for them. If not, they get stuck at home waiting for wait-list and no structure facility to really take them during the day. Looking for resources even with state agencies is like looking for a needle in haystack. Laws need to be passed to provide the structure these individuals need. There needs to be a school with bus transportation like they had at their previous school. Someone like my brother is use to a school bus transportating him. His school district won't transport him in a school bus to his new day program. He deserves more than this and better care. Adults with autism deserve better care than this.
Petition to Board of Directors for United Church Camps, Tom Bayer
Reinstate Dr. Glenis Benson as autism specialist at Camp AweSum. This is not Okay.
We, the Volunteers, Donors, Families and Campers of Camp AweSum call on the UCCI Board of Directors to restore our trust, by reappointing Dr. Glenis Benson as autism specialist at Camp AweSum. Camp AweSum needs the institutional knowledge of Dr. Benson to succeed. Glenis is the source of program development and the philosophy that stimulated Camp AweSum to flourish. Through her guidance Camp AweSum earned its reputation as a caring, disability friendly, safe and inclusive space for people with Autism and their families. Often, people say that anyone can be replaced, an example is every position at Moon Beach and Camp AweSum has changed occupants over the years, except Dr. Benson. Glenis is the critical element of Camp AweSum, without which Moon Beach is just another Northwoods resort. In fact, for many Camp AweSum families, Dr. Benson is the only reason they made the trip to St. Germain. We trusted Glenis; her experience, her thoughtfulness, her thoroughness. "Glenis not only learned our children’s names, but their struggles, interests and family stories. She had conversations with all of us as humans, parents and participants. She took calls and emails outside the weeks of camp, provided resources and expertise that improved the lives of our children and the education they received. And as our children grew up, she did not forget that they still had significant needs, are still our children, still live with autism every minute of their day. I feel Dr. Benson represents the best of professionals. As the most committed of autism allies, Glenis chooses to walk with us on our journey year round." Camp AweSum is not a product to us. It is collective experience; A cherished memory, A happy place, A sustaining thought, A life changing path. There is no Camp AweSum without Glenis. We now require the UCCI Board of Directors to make every effort to reinstate Dr. Benson as autism expert at Camp AweSum. We encourage meaningful dialog and support inclusive growth with-in UCCI and at Moon Beach. The Camp AweSum experience will be altered in every meaningful way without the leadership of Dr. Glenis Benson. We, the Volunteers, Donors, Families and Campers of Camp AweSum are compelled to speak and offer our support on behalf of Dr. Glenis Benson.
Petition to Tennessee State House, Tennessee Governor, Tennessee State Senate
Change conservatorship laws! Let me visit my son!
I have an Autistic son that I raised for 19 years. In 2019 his paternal grandmother picked him up from Georgia for a visit and took him to Tennessee. They never bought him home. That summer his father and paternal grandmother filed for conservatorship over my son. I retained an attorney who advised me that the judge did not have jurisdiction over this case because my son wasn’t a resident of the state of Tennessee. At the court hearing Chancellor L McMillan granted their request simply because My family was in the process of a move to Germany and a therapist that had treated my son in TN stated that she did not believe there would be autism services available in Germany. It’s been 2.5 years and I now have no rights to my son. He is currently experiencing a mental health crisis and has regressed significantly but his father “the conservator” is refusing to allow me to visit him. I flew from Germany to Clarksville just to visit my son. I have contacted attorney after attorney in Clarksville only to be told there is nothing I can do. My son has always stated that he doesn’t want to live with his father. His conservator helped him obtain a driving permit. If they believe he is he is capable Of driving a vehicle, he should be capable of choosing where he wants to live. No one is advocating for him and what he wants. There is no oversight once a person is placed in conservatorship other than the court system. There should be an oversight committee or agency. In 2019 I was forced to accept that I could not take my son to Germany with me and I did my best to live with the Judges decision but I refuse to allow anyone to keep me from my son forever. I will not stop fighting for the right to have access to my loved one. I hope that no one else has to endure a situation like this. After continued research to try to advocate for my son, I have found that the issue of visitation for people placed under conservatorship has already been addressed by Senator Rusty Crowe of Tennessee. Senator Crowe introduced the “Campbell/Falk Act," which addresses visitation rights for people under conservatorship. I am incredibly thankful that this law exists. The fact remains that there is still no oversight, and violations of this law continue to happen. There is no easy way to report violations, and depending on the severity of the situation hiring an attorney that is familiar with this law and waiting for a hearing to take place could be costly and cause undue stress to both the family and the respondent. I hope this campaign continues to gain attention and a change is made to address these concerns so that no other family has to deal with this.