Topic

Disability Rights

253 petitions

Update posted 2 days ago

Petition to Andrew M. Cuomo, New York State House, New York State Senate, Sue Serino, Didi Barrett, Carl Heastie, Jeffrey Dinowitz, Aileen Gunther, Angelo Santabarbara, Latoya Joyner, James Skoufis

Bailey’s Law now! Hold criminals accountable for victimizing the developmentally disabled!

 Please Support the Passage of #BaileysLaw We cannot allow criminals to get away with the death of their victims. My 19 year old autistic son, Bailey, committed suicide on 7-31-17, my birthday of all days. After nearly 20 years of complete family devotion and cultivating our lives in support, contemplation and preparation of his each new life phase, new stage, new challenge, and new triumph our lives were completely and irrevocably upended in the span of 8 minutes. Bailey had many friends. He was kind, funny, caring, generous, gentle, down to earth, and creative. He was an artist, a lover of history, and had compassion for all living things. He was a teacher his whole life as much as he was a student of it. Bailey made me stronger, made me determined, made me timely, made me adjustable, made me more understanding...and it was Bailey that made me an advocate for kids with special needs for all these years. Of course, his 3 siblings also helped make me, and him, over the years...we all made each other. Our family has always been very tight. Being a single mom the last 16 years enabled me to make my children my world, and show them we are a team. I’ve tried to give them everything I am and everything I have within me, with intention. But despite everything I’d, we’d, put in over the years my son, their brother, is gone...less then 8 minutes after leaving my side. Bailey resorted to suicide 7 days after being a victim of a financial crime, 4 days after I realized he was victimized, and less than 5 hours of being asked to ID one of the perpetrators. He was preyed upon, betrayed, and taken advantage of by a girl he knew for years and had recently befriended him. This girl connected her male friend to my son under the guise of helping them cash a check. From what I’ve been told by State Police, Bailey was hesitant to help them, unsure of whether or not the request was legitimate, and she assured my son that the request was fine and then promised him, I believe, $200 from the proceeds for his assistance. I suspect Bailey provided them with his bank card and his PIN number. On 7-24-17 the male deposited a $1675.00 fraudulent check at an atm in Highland, NY and then immediately withdrew $200 (the amount fronted with a check hold); this was caught on atm bank video. I realized there was a problem on Thursday the 27th when I noted on our joint account both the deposit and withdrawal as well as the $200 withdrawal ultimately being pulled from my separate account. Bailey was learning banking and I would transfer his disability money to the joint account so he would learn about money management, budgeting, grocery shopping, etc. Bailey was devastated over the loss. We connected with local police on the 27th, who then directed us to the nearest state troopers on the 28th, who in turn directed us to State Troopers in Highland on 7-29-17 where we filed a complaint. Later on that Saturday, my youngest son told me he overheard his brother Bailey on the phone after hearing of the banking problem on Thursday, extremely upset over the financial loss and insisting on the return of funds. On Monday, 7-31-17 the investigator came to our house at 12:30 to see if Bailey could ID the male in the bank video. Bailey claimed he did not know the person and by his reaction I believe he didn’t. At 5:16pm he left our home stating he was going for a walk to draw; this was not unlike him as his executive processing speed is slower than many and he’d use walks or drawing to manage stresses. By 5:30 I heard the emergency response sirens and ran down our street, because I never wanted my kids around the chaos when EMS was in the area, and of course I wanted to count the safety of my chicks. The area they were responding to is a nuisance area that has had more than it’s fair share of fires....but there was no fire truck, only medical response. My son had hung himself in the woods less than a block from our home. The next day I was presented with a note he’d written; he clearly believed he’d done something very wrong in trusting the wrong person. No law enforcement involved in this case believes that Bailey had the faculty to understand what was happening, or the complexities that he was a victim, and neither does any of his family nor his longstanding therapist. There is no doubt in my mind that he merely thought he was helping someone. Both accused, at this point, will only be charged minimally; one with grand larceny 4th and the other with Endangering a disabled person 1st, both class E non violent felonies. Theoretically they could each get probation. They have each since been arrested for other crimes; her on drug charges in October 2017 and him for killing a 16 year old with his car after an argument in Yonkers in December 2017. The male is being held without bail in Westchester and has yet to be charged for our case. The female was arrested and arraigned for this case but was granted release on $2000 cash/$4000 bond. I am sickened over what may be obvious to you at this point, that the charges do not reflect their role in the death of my son. People with disabilities, including autism, are among our most vulnerable community members. It seems so unjust that a charge of endangering specifically relates to affecting the mental well-being of a vulnerable person yet they are not charged with the actual consequences of this criminal action. I’m currently working with our local representatives to start the process of pushing for new legislation in the state to hold perpetrators fully accountable for the consequences of their actions. The law for Endangering in NY currently states: “Under our law, a person is guilty of Endangering the Welfare of an Incompetent or Physically Disabled Person in the First Degree when he or she knowingly acts in a manner likely to be injurious to the physical, mental or moral welfare of a person who is unable to care for himself or herself because of physical disability, mental disease or defect. The term "knowingly” has its own special meaning in our law. I will now give you the meaning of that term. A person KNOWINGLY acts in a manner likely to be injurious to the physical, mental or moral welfare of a person who is unable to care for himself or herself because of physical disability, mental disease or defect when that person is aware that he or she is acting in such manner. Actual harm to the incompetent or physically disabled person need not result.” Currently under our criminal laws culpability for a persons suicide rests on the aspect of “aiding and abetting”, or, in practical terms, specifically aiding, directing or encouraging the suicide. This MUST change. Those that would intentionally cultivate an environment and/or circumstances specifically to use people with disabilities to commit a crime, need to be held accountable for the full range of actual damages they cause, including the death of their victim. We need #BaileysLaw to firmly establish... If a defendant is charged with endangering in the first degree, or another crime related and/or connected to a charge of endangering in the first degree (as in coconspirators/codefendant), whereby the events result in the victim’s suicide within reasonable proximity of the crime, defendants should be criminally charged for the victim’s death. This area of law, as it specifically relates to endangering, also needs to be updated to incorporate the disability standards of the Americans with Disabilities Act and Social Security Administration in trials. As it stands, the question of a successful trial seems tied to whether or not the victim has an IQ over 40, and can dress and feed oneself. This is an extremely low threshold for a successful trial against a perpetrator charged with endangering and is not in line with current state and federal laws to protect the disabled. There are an enormous number of people with autism, and other disabilities, who have a high IQ and can feed and clothe themselves but cannot fully meet their own needs in a manner that could be characterized as independent living. Bailey’s Law should protect anyone that can be considered a vulnerable person by including the state and federal standards of disability.   I urge you to support Bailey’s Law. It will not help my family but it will help many others. PLEASE, sign this petition to help me get it passed!  To view or VOTE YES on the #BaileysLaw bill (NY S.8541) you can visit https://www.nysenate.gov/legislation/bills/2017/s8541  - there is a link at this location for the identical Assembly version as well. To learn more about my beloved Bailey you can visit the guestbook at https://m.legacy.com/obituaries/poughkeepsiejournal/obituary.aspx?n=&pid=186269333&referrer=0&preview=True To follow our journey, visit https://m.facebook.com/DearBaileyLoveMom/ & http://BaileysBridges.org/baileyslaw/ Sincerely, Gae Marie Cannon, Poughkeepsie, NY *6-17-18 Update: Our bill for Bailey’s Law passed in the NY Senate on 6-11-18 with a vote of 44/17. The bill is now in the NY Assembly (A.10874) and I’m pushing to have it passed before the end of the legislative session on 6-20-18.  The Ulster County Court has declined to take on the female’s case (the facilitator of this crime), and referred it back to the Town Court. This means that HER CHARGES WILL BE REDUCED from felony to misdemeanor or less- because Town Courts CANNOT process felonies. It is looking more and more like she will get 3 years of probation... To put this into context- a DWI, WITHOUT LOSS OF LIFE, can result in 3 years probation, over $1000 fine and revocation of drivers license...  I am disgusted.... these people KNEW they were committing a crime. KNEW they were targeting someone with a disability, and their actions resulted in the DEATH of their victim......  Please, please share our petition... This is just not right..  Targeting our vulnerable loved ones breaks a sacred social contract in our society and we must prevent this from happening to someone else...  8-15-18 Update: Our bill for Bailey’s Law is currently stuck in the Codes Committee of the Assembly but I am pushing forward with public support signatures as well as organizational and legislator support. Our bill now has 4 Assembly sponsors: Didi Barrett, Christine Pellegrino, Angelo Santabarbara, and David McDonough. This is immensely helpful but until this bill passes in the Assembly and is signed by Andrew Cuomo, we cannot stop pushing for more bill support.  Our next court hearing for the female’s case is on August 28th. It’s expected she will be offered a plea bargain of a reduced charge (felony Endangering in the 1st to misdemeanor Endangering) with a sentence of 3 years probation. THIS IS NOT JUSTICE FOR AN INTENTIONAL CRIME THAT RESULTED IN DEATH.  The male has not yet been brought up to our county for arraignment; he is still pending trial for Murder 2 in Westchester County in an unrelated case.  9-21-18 Update: Our last court appearance for Teator did not go as expected, thankfully. But know I have no idea what’s going to happen. Our next court date is Tuesday, 9-25-18. See update for more details.  What you can do to help:1. SHARE the petition and Bailey’s story, in person and online2. Go to our website and print free flyers for local venues and local bulletin boards in your town, and deliver them to all the neighbors on your street 3. Call agencies that support the disabled and/or elderly and ask them to join our coalition of support. You can give them the website address as a contact. 4. Stay informed. The blood and guts of this journey is on our Facebook page Dear Bailey. Thank you so much for your support, your caring messages (yes, I read them all), and I hope you’ll stay with me through this process of fixing the law. With gratitude, Gae Marie 

A Mourning Mom *
13,589 supporters
Update posted 2 days ago

Petition to Matt Hancock MP, Damian Hinds MP, David Gauke MP, Theresa May MP, Tulip Siddiq, MP Norman Lamb

Add PDA to ICD-11 urgently so the school refusal can be dealt with appropriately

My four-year-old son has been off nursery since the beginning of May due to nursery refusal. Underpinning his avoidance is a high anxiety about conforming to everyday demands and of not being in control of the situation, even the mention of nursery sends his anxiety levels off the scale.  My son's EHC plan is not fit for its purpose as it does not accurately reflect his level of need, and this is a reflection of me not being listened to and my son's needs not being understood. My son was supposed to start a mainstream school this Sep that was named on his EHC plan against my wishes and after they confirmed that they could not meet my son's needs. LA has originally rejected my request for deferment saying that it was not in my son's best interest not to start the school this September although there was and still is no plan in place on how to resume his attendance at nursery or the importance of a transition to school if attendance at the nursery can be resumed. At the TAC meeting, I have requested the network to watch the video footage of difficulties dropping my son at nursery, and his nursery refusal which was also witnessed by the Speech and Language Therapist at nursery at the end of April. As the CDT - Child Development Team refused to provide an information about my son's nursery refusal or failure of ASD interventions applied to LA despite all my efforts to communicate this EHC Coordinator made an assumption that my son is simply refusing to attend because he is 'bored'. When I set on a quest to obtain a differential diagnosis for PDA also known as Pathological Demand Avoidance ( autism sub-type ) for my son as 'typical' ASD interventions were having more of an adverse effect on him, my son already has a diagnosis of ASD since Mar last year I had no idea about the challenges that were to follow. I was puzzled by my son's autism as children with ASD I saw at special needs nurseries were nothing like him. I had a light bulb moment when I came across the PDA profile in children with autism. As a result, I have attended the PDA conference in Reading and parental program for PDA in Norwich. The CDT disagreed that my son may have PDA and refused to engage further in exploring PDA strategies, instead, I was asked to go back to my son's GP and pursue the PDA assessment myself. After a year of waiting and chasing my son's GP, a request for an assessment has finally been approved however I was told that my son can only be assessed at South London and Maudsley which specialises in mental health and has no specific policy for PDA, therefore cannot assess or diagnose PDA. The lack of support I've experienced from a variety of services means that families like mine are often relying on their own research to work out how to support their children. Thanks to LA and CDT I've been left without any significant support until mid-January while I go through an appeal process at the SEND Tribunal. Last week I managed to speak with an Early Years Coordinator from my son's nursery in the nearby park as my son would not to go in as to what actions we could take in this situation. While in the middle of a complaint to NHS about their services and after I have submitted letters about my son's nursery refusal and failure of ASD interventions applied by the Early Years Coordinator, the clinicians made a referral to social care questioning my ability to parent my son accusing me of refusing to bring my son to nursery. I am currently getting legal advice re this matter. Most recently the LA has denied SLT and OT for my son who has an EHC plan, apparently, these therapies can only be administered in his educational setting and not in the home. After joining several ASD, PDA and school refusal groups on Facebook I was horrified to see that school refusal is an ASD issue and not just a PDA issue however 70% of PDA children are out of school (the highest number in comparison to other ASD profiles). Not only parents struggle to obtain ASD diagnosis or EHC plans for their children, but they are also pressurised into imposing the attendance on their autistic children ( diagnosed or undiagnosed) which negatively impacts their mental health.  The 2018 survey conducted by the PDA Society highlights that the school environment does not work for many children with PDA. If this is the case then both children and parents should be supported appropriately and not ignored, dismissed, penalised, reported to social care or sent to attend parenting courses that do not work for children with PDA as PDA is not a parenting issue and most importantly left without support because they've reached the ultimate avoidance - nursery/ school refusal. After consulting with IPSEA - Independent Parental Special Education Advice I understand that education does not necessarily need to take place in the school setting as incorrectly advised by LA if the child's high anxiety and demand avoidant behaviour is preventing them from attending the setting as LA has a duty to provide Education Otherwise than at School under s61 Children and Families Act 2014 for such children. Thank you Dagmar I would like to thank Sidings Early Years ( my son's nursery), PDA Society and IPSEA for all their support and advice and everyone who signed this petition, much appreciated. Essential Reading: Fears vulnerable children with rare form of autism are being left behind by NHShttp://www.itv.com/news/calendar/2018-05-15/fears-vulnerable-children-with-rare-form-of-autism-are-being-left-behind-by-nhs/ Being MisunderstoodExperiences of the Pathological Demand Avoidance Profile of ASDhttps://www.pdasociety.org.uk/resources/research-summary/2018-survey Teachers Guide to Understanding PDAhttps://www.pdasociety.org.uk/education/teachers-guide Education: Stories of PDAhttps://www.pdasociety.org.uk/resources/pda-case-studies/case-studieseducation New global diagnostic manual mirrors U.S. autism criteria ( NO MENTION OF PDA )https://www.spectrumnews.org/news/new-global-diagnostic-manual-mirrors-u-s-autism-criteria/ The £70 million council costs of fighting – and losing – against parents at the SEND Tribunal https://specialneedsjungle.com/70million-council-costs-parents-send-tribunal/ Image Courtesy of PDA Bookletfile:///C:/Users/HP/Desktop/PDA_Booklet.pdf

Dagmar Holub
887 supporters
Update posted 5 days ago

Petition to Francis Collins, Alex Azar

Increase Funding For ME/CFS So We Can Find a Cure

I am only 31, and yet, simple tasks like taking a bath completely exhaust me. This is because I am one of millions of people worldwide who suffer from Myalgic Encephalomyelitis (ME/CFS), a complex, multisystemic disease that causes disabling symptoms like chronic pain, cognitive impairment, exertional intolerance, severe weakness and crippling fatigue. Many days I am too weak to do anything but walk to the bathroom and back to my bed. Before I became sick, I was able to attend LSU, study abroad, enjoy SEC football and earn a degree in Journalism. Now, just a trip to the grocery store can land me in bed for days. I've lost my independence and take 25 pills a day just to manage the pain and symptoms of the illness. I have lost my life as I knew it. Health Agencies have dismissed this disease for decades and failed to take the health of millions of sick people seriously. There are no FDA approved treatments or cures for the disease on the horizon, which is the direct result of a major lack in funding for biomedical research. In the 2016 federal budget, the NIH allocated $6 million toward studying ME/CFS. More than double that amount was spent on male-pattern baldness. Meanwhile we are suffering, some of us bed bound, with little hope and our futures up in the air. We can do better. Please stand with me and the millions suffering with this life-sucking disease in demanding that Francis Collins keep his promise and that the NIH drastically increase their allocated funding for ME/CFS research. The burden of this disease is huge, on families and the economy. It costs our country billions every year in lost productivity because more than half of us are too sick to work. Families savings are drained as most insurance fails to cover the high cost of longterm management.  There are so many others like me; once living productive lives with families and promising careers. Now we're stuck with an orphaned disease and our pre-sick lives are just a memory. Some patients are so severely ill, they are confined to dark rooms, unable to tolerate sound, talking, or light. They cannot walk and some are unable to eat. They aren't "living" they are just hanging on. And it doesn't have to be this way. I started this petition because people suffering from ME/CFS just want our lives back, and that will only happen with an effective treatment and eventual cure. With your signature, we can hold the NIH and congress accountable for taking our disease seriously and honoring our request to increase the NIH research budget to $100 million for ME/CFS funding. We can also restore hope to millions world-wide that they may live again, including me and my dog Monty. Thank you.    #WeCanDoBetter Let's do it now. Read about my weird sick life at 25pillsaday.com  Visit millionsmissing.org for more information about upcoming protests.  

Mary Gelpi
50,681 supporters
Update posted 6 days ago

Petition to Don Davis

Vehicles for the Vulnerable

Like many families with disabled family members, transportation is a struggle with my son Jayden and me.  A wheelchair accessible van would alleviate our issues, but the cost is too high for a working mother with student loan debt and other expenses that come with daily life. Medicaid can help, but their policies make it nearly impossible to get what families need. They help with accessible vehicles in two ways. They will either pay to add modifications to an unmodified vehicle, or they will help with the purchase of a previously modified vehicle by paying the cost of the conversion toward the total price of the vehicle. Recently, I requested an already modified vehicle, and was approved but only for $7,175.00. A conversion costs upwards of $20,000. I learned that for unmodified vehicles, Medicaid pays for nearly 20 conversion items, but will only cover four items on a previously modified vehicle. Many conversion items on previously modified vehicles are necessary for even the most basic conversion. For example, any vehicle with a ramp needs a lowered floor, but that item isn't covered by Medicaid for previously modified vehicles, though it IS covered on unmodified vehicles. If Medicaid would cover the same conversion items on a previously modified vehicle as they do on unmodified vehicles, I would be able to purchase the vehicle and finance the remaining cost. I don't want to buy an unmodified vehicle because there is no guarantee modifications would be approved, and the conversion process itself takes eight to ten weeks. I have already been battling Medicaid for over three months. Please sign this petition to require Medicaid to cover the same conversion items on a previously modified vehicle that they cover on a modified vehicle. My child should not have to be confined to our home over a policy which can be revised to work in favor of our disabled children, rather than against them.

Rebecca Fontes
10,896 supporters