NDY’s Director of Minority Outreach, Anita Cameron, was featured in some important news pieces about medical bias against autistic people and proposed cuts to Medicaid. We applaud Anita for her incredible advocacy and we are so grateful to have her on Team NDY!

https://prescottenews.com/index.php/2023/03/07/above-all-else-believe-us-doctors-biased-behavior-toward-autistic-adults-taints-treatment-cronkite-news/

“For queer and gender-diverse autistic people, their gender or sexuality may have a larger impact than their autism on their medical treatment.

“It would literally be unsafe to disclose that I’m a lesbian,” said Anita Cameron, 57, a longtime disability activist and director of minority outreach at Not Dead Yet, a disability rights group.

“You literally get treated different…. It’s a little safer to be autistic than to be a lesbian, to be queer these days,” said Cameron, who lives in Rochester, New York. “Autistic people are six times more likely to be trans and non-binary.”

Cameron, who is Black, added that Black autistic people may be perceived as threats, due to others misinterpreting their behavior as dangerous. She notes the deaths of Black people with developmental disorders in encounters with police, making her careful of how she presents herself to health workers, even while living with chronic pain.

“If I go up in that emergency room crying and screaming … at the very least, I’ll get mocked,” Cameron said. “At the very worst, I will be escorted out of the emergency room or even arrested.” ”

https://spectrumlocalnews.com/nys/capital-region/politics/2023/03/08/advocates-want-medicaid-cuts-to-home-care-eligibility-blocked-in-budget#

“Anita Cameron, of Rochester, is visually impaired, and has issues related to autism and diabetes.

The 57-year-old currently qualifies for home care under the state’s Medicaid rules because she needs help with medications, house cleaning and bill payments, but would not qualify for one of the seven approved activities under the new law because she’s mobile.

Advocates worry the changes will force more people into nursing homes or adult-care facilities.

“Although I have mobility issues, I can transfer, I can maneuver — I can turn myself over in bed,” Cameron explained. “So under the proposed changes, I wouldn’t even get attendant services. I wouldn’t even be able to attempt to apply for services.”

Cameron, who works as a disability rights activist at events across the state, says the cuts will likely result in her being sent to an adult-care facility when she spends time in the hospital for medical care throughout the year.

“I have a job part-time, but I have a job,” Cameron added. “I wouldn’t be able to work from a nursing home.” “

Video link: https://youtu.be/h9hOudlBKmI

This week, we’re taking a look at the assisted suicide bills currently being considered in states across the country. Learn what’s happening and how you can get involved. Want to get involved in activism around this issue? Fill out this quick form: https://secure.everyaction.com/8FDj6L…

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TRANSCRIPT:

Hello and welcome back to the NDY vlog! My name is Jules Good, I use they/them pronouns, and I’m the Assistant Director and Policy Analyst at Not Dead Yet. I’m a white person with short wavy brown hair wearing pink-rimmed round glasses, a blue blazer, and a cream colored shirt.

The legislative session is in full swing in states across the US, and it is jam-packed with assisted suicide legislation and related bills. The status of bills can change daily, but these updates are current as of 2/15. If anything important happens between when I record this and when I post it to the YouTube channel, I’ll make note of those changes in the video description below.

Let’s dive right in with the state that has FOUR bills this year: Connecticut! The first two, HB 5487 and SB 188 are companion bills, meaning they contain the exact same text but one is introduced in the House (or as it is called in Connecticut, the “General Assembly”) and the other is introduced in the Senate. Usually, legislators in the House and Senate team up on companion bills to promote simultaneous consideration in both chambers and to drum up more support for a particular piece of legislation. The House Bill currently has 28 legislators sponsoring or co-sponsoring it, all of whom are Democrats. The Senate bill has one lone sponsor. Unfortunately, neither bill has been fully drafted yet, so it is too soon to tell if they will be exactly in line with current assisted suicide legalization statutes or if they will contain any unique elements. All we have to go off of right now are the proposed bill summaries, which are pretty vague. There is also a second legalization bill coming through the House, HB 6530. Comparing its summary with that of HB 5487, there does not seem to be a huge difference. 6530 specifically mentions physicians and their role in the process, while 5487 does not, but both bills seem functionally the same at first glance. We shall see what differences arise between them once full drafts are published.

The fourth bill of interest in The Constitution State is HB 5486, which our colleagues have nicknamed the Death Certificate Accuracy Act. Shoutout to Stephen Mendelsohn at Second Thoughts Connecticut for his great work on this bill! This would ensure that if someone dies by assisted suicide, the cause of death on their death certificate reflects that. In many states where assisted suicide is legal, a person’s underlying illness is listed as the cause of death, not assisted suicide. This is mainly because of suicide clauses in life insurance policies, which withold payout of benefits to the deceased person’s beneficiaries for 1-3 years after the policy is purchased, depending on the insurer. These clauses are meant to dissuade someone from intentionally taking out a life insurance policy right before they plan to die by suicide, as a protective measure for insurers. Death certificate accuracy is particularly important in terms of stopping beneficiaries from coercing someone into pursuing assisted suicide to access their money. Here’s a real-life case of potentially coerced assisted suicide for economic gain, as reported by DREDF:

“Thomas Middleton was diagnosed with Lou Gehrig’s disease, moved into the home of Tami Sawyer in July 2008, and died by assisted suicide later that very month. Middleton had named Sawyer his estate trustee and put his home in her trust. Two days after Thomas Middleton died, Sawyer listed the property for sale and deposited $90,000 into her own account.[16] It took a federal investigation into real estate fraud to expose this abuse. Sawyer was indicted for first-degree criminal mistreatment and first-degree aggravated theft, partly over criminal mistreatment of Thomas Middleton. But the Oregon state agency responsible for the assisted suicide law never even noticed.”

If Middleton’s death certificate had accurately stated that he died by assisted suicide, Sawyer’s access to his assets may have been restricted, which could have dissuaded her from [allegedly] coercing Middleton to die prematurely. Hopefully, Connecticut won’t legalize assisted suicide so we don’t have to worry about how it’s reported on death certificates, but this is great backup legislation if CT joins The Dark Side.

Let’s move on up the coast to Massachusetts, which is considering assisted suicide legalization again this session with SD 265 after failing to pass it last year. MA’s process runs a little behind many other states, so it’s hard to predict when we might get a public hearing on this bill at the moment. Right off the bat, the bill has a clause that is not included in any currently codified law: “A patient shall not qualify if the patient has a guardian”. While guardianship is a whole other topic that deserves its own video, what you need to know for our purposes here is that guardians are typically appointed to make important legal and medical decisions for people deemed incapable of making those decisions for themselves. You may remember the recent guardianship controversy with Britney Spears, who was finally freed from her abusive guardian last year. In no other state is being under guardianship listed as an automatically disqualifying factor for pursuing assisted suicide, possibly because these bills purportedly require the person to be able to make healthcare decisions. This clause is likely meant as a safeguard to prevent abusive guardians from making decisions about their ward’s death, perhaps to emphasize the capacity requirement. The Massachusetts bill also requires that a patient’s physician must refer them to a psychological professional for an evaluation and receive a written go-ahead from that person in order to move forward with prescribing lethal medication. Referral for psych evaluation is recommended in many states, but not mandated. Aside from these two notable exceptions, SD 265 is pretty much a copy-and-paste of current assisted suicide statutes from other states.

Rhode Island is also considering an assisted suicide legalization bill this year after a failed bill last year. HB 5210, named the LILA MANFIELD SAPINSLEY COMPASSIONATE CARE ACT, is currently awaiting a hearing in the House Judiciary Committee.This bill is functionally identical to current assisted suicide legalization statues, but it does emphasize the point that physicians need to inform patients of alternative options such as palliative care more than many of its predecessors.

New York has a set of companion bills for assisted suicide legalization which are currently in the House and Senate Health committees, respectively. They are functionally in line with other bills, but contain one unique clause that reads: “(vi) an insurer shall not provide any information in communications made to a patient about the availability of medication under the article absent a request by the patient or by his or her attending physician upon the request of such patient, and any communication shall not include both the denial of coverage for treatment and information as to the availability of medication under the article”. Translation: insurers can’t mention assisted suicide to patients unless the patient asks about it. Insurers also cannot notify patients that coverage has been denied for treatment AND give information about assisted suicide in the same message. The idea behind this clause is one that disabled oppononets of assisted suicide have been bringing up for decades. If a patient is denied coverage for treatment, they may feel like their only option is to pursue assisted suicide, which is a form of financial coercion brought about by our broken healthcare system. While this safeguard sounds nice in theory, like so many others it is very difficult to enforce. Who is going to monitor communications between insurers and patients to be sure this type of communication doesn’t occur? How will patients know that it is illegal for an insurer to give them this information? Who would this even be reported to? These questions are intentionally left unanswered in the law– if they gave us a way to enforce this safeguard, it would be harder to reframe it as a barrier and rescind it later.

Next we have Indiana with HB 1011. It’s pretty run-of-the-mill and is currently awaiting a hearing in the House Committee on Public Health.

Maryland is considering SB 845, another copycat bill. It’s due for a hearing in early March.

Lastly (for now) is Arizona’s pair of companion bills, HB 2583 and SB 1646. Arizona proponents have been trying to pass assisted suicide legislation since 2003, and they have a better chance now than they ever have given the makeup of the legislature. These bills are also fairly unremarkable, although they are consistent with the trend of including a mechanism for overriding the 15 day waiting period for patients who are predicted to die before the waiting period ends.

A bright spot amid all of this bad legislation– Virginia introduced an assisted suicide legalization bill, SB 930, that quickly failed to pass through committee. One state down, 12 to go!

The other kinds of bills we’re tracking are those that expand access to assisted suicide by withdrawing safeguards and loosening requirements. Let’s take a look at these.

In Vermont, where assisted suicide has been legal since 2013, a bill to repeal the residency requirement in the law is being considered. As the law stands now, a patient must prove they are a Vermont resident as part of the process of determining their eligibility for assisted suicide. This bill, SB. 26, would remove that requirement so anyone from any state could pursue assisted suicide in Vermont. This is really problematic, because it essentially overrides the authority of other states that do not have legal assisted suicide.

Oregon is also entertaining a bill to remove its residency requirement, HB 2279. It had a public hearing on January 23rd, which NDY’s President and CEO Diane Coleman submitted testimony for. You can find it on our blog– I’ll put a link to it in the description.

Washington is considering a set of companion bills, HB 1281 and SB 5179, which would loosen requirements for the assisted suicide process. It would allow any “qualified medical professional”, rather than a physician only, to prescribe a lethal prescription. Any qualified medical provider who “has primary responsibility for the care of the patient and treatment of the
patient’s terminal disease” could write the prescription, opening it up to Advanced Practice Registered Nurses (APRNs) and physician assistants. If the attending professional is not a physician, they must consult with a physician. It also widens the scope of who can engage in counseling with a patient– it would no longer have to be a psychologist or psychiatrist. It could be “an independent clinical social worker, advanced social worker, mental health counselor, or psychiatric advanced registered nurse practitioner”. The bill strikes the current requirement that if a patient is living in a long term care facility, one witness to their request for a lethal prescription must be someone designated by that facility. It allows a lethal prescription to be delivered to a qualified patient by mail, which was previously prohibited. It shortens the waiting period between the first oral request and writing of the prescription from 15 days to 7 days, and provides that a patient can receive it sooner than 7 days if they are not expected to live that long. This bill would loosen requirements at almost every step of the process, inviting more room for clinical error and unnecessary death. It’s a great example of the trajectory of assisted suicide bills– they start out more restrictive, and then quietly expand over time. That’s why safeguards aren’t really safe– they can always be rolled back.

Last but not least: Hawaii. Hawaii’s companion bills, HB 650 and SB 899, would do many of the same things that Washington’s bills propose. APRNs and attending physicians could prescribe lethal medication, nurses with specialized training in psychology/psychiatry could provide counseling to patients, and the waiting period would be shortened from 20 days to 5 days. Hawaii’s bills would add a pathway to bypassing the waiting period for patients who are not expected to survive it, which its original bill did not have.

As you can see, we’ve got a doozy of a legislative session on our hands. Do you live in one of the states we talked about today? Do you want to learn more about assisted suicide legislation and what it means for your community? Please sign up for our action alerts! The link to sign up is in the description and it’s super easy– let us know who you are and what kind of advocacy you want to be involved in, and we’ll connect you with opportunities! Changing the conversation around assisted suicide and defeating these dangerous bills is going to take a critical mass of involved people. Please consider signing up– it doesn’t commit you to anything, it just lets us know that you’re interested. Together, we can protect our most vulnerable community members and affirm the value of disabled lives.

Thanks for watching! To learn more about us and what we do, please visit www.notdeadyet.org. And hey, if you want to stay updated on what we’re doing, consider subscribing to our blog. You’ll get an email when we post about an event, article, piece of legislation, etc. We promise not to spam your inbox– we generally post 1-2 times per week, max. Link to subscribe is in the video description below. See you next time!