By Meghan Schrader
Meghan Schrader
Meghan is a disability instructor and a member of the EPC-USA board.
As I’ve said, the Final Rule, a 2024 update to Section 504 of the Rehabilitation Act, especially Sections 84.56(a) and (b), contains some of the best regulations that the euthanasia prevention movement has had at its disposal in decades. Along with new opportunities for everything from home care to internet access, the Final Rule’s regulations elucidate what medical providers must do to make things like x-rays, mammograms, surgery suites, clinics, hospitals and other medical services accessible to disabled patients.
And in a substantial boost to euthanasia prevention, the Final Rule contains prohibitions on futile care laws, infanticide, and doctors “denying or limiting medical treatment based on the provider's belief that the life of a person with a disability has a lesser value than a person without a disability, or that life with a disability is not worth living.”
Yet, in the time since my last blog post about the Final Rule, there have been additional indications that these protections are at risk. As with the Final Rule’s protections for general internet access and better grievance system for disabled people struggling to access home care, the requirement that medical providers make their websites and apps accessible to disabled people has been delayed by the US Department of Health And Human Services.
The government has also indicated that it intends to “reconsider the substantive requirements” of the 2024 Final Rule more broadly. This suggests a risk that all of the Final Rule’s new healthcare accessibility requirements will be rescinded, just as HHS rescinded the Final Rule’s requirement that nursing homes maintain enough staff to prevent residents from experiencing bedsores and malnourishment.
This lackadaisical approach to healthcare accessibility is an absurd blow to euthanasia prevention.
HHS Secretary Robert F. Kennedy has said that Canada’s euthanasia program is “abhorrent.” That’s great, but the government he serves seems happy to dismantle bulwarks against euthanasia.
This is not a partisan statement. Leaders from across the political spectrum make budget cuts and policy decisions that harm people with disabilities. I would write the same things about current disability policies regardless of who controlled the government.
Meanwhile, seven states continue to press ahead with the Texas vs. Kennedy lawsuit, which seeks to repeal the Final Rule, especially its community integration mandate. This mandate is intended to prevent the unnecessary institutionalization of persons with disabilities. It does not require states to close institutions, but it does require them to institute new supports for disabled people at risk of being institutionalized. The plaintiffs are hoping to have a federal judge grant their petition without a full trial.
Texas, Florida, Alaska, Kansas, Louisiana, Missouri and Montana, the states that remain involved in the Texas vs. Kennedy lawsuit, base some of their argument on “states rights.” The states’ attorney generals contend that the Final Rule’s integration mandate encroaches on their “budgetary and policymaking discretion.” They decry the Final Rule's “mandate for states to redesign their Medicaid programs.”
This is an argument for convenience. Texas and Florida, for instance, have some of the highest numbers of institutions in the US; those two states would have to do a lot of work to implement the community integration mandate. Even if there are some people who require institutional care, these states lock disabled people in institutions who don’t need to be there so that the staff can keep their jobs. And the attorney generals in those states wish to export their states’ dysfunction to disabled people across the country, because in their opinion, the best policies serve what’s best for their states, not disabled Americans.
This is what moral theologian Charlie Camosy and Pope Francis call “throwaway culture.”
Euthanasia opponents come from all religions and no religion at all. But I am now going to draw on passages from the Bible because I know that a lot of euthanasia opponents view it as the guidebook for their lives.
In Ecclesiastes 3:16, Solomon writes: “And I saw something else under the sun: In the place of judgment—wickedness was there. in the place of justice—wickedness was there.”
Ecclesiastes 3:16 is a statement about the reality of human injustice. It observes that corruption and wickedness frequently occur in places meant for fairness and righteousness.
That is what is happening when leaders say they oppose euthanasia while dismantling social structures that prevent euthanasia.
Before “MAID” supporters start congratulating themselves on how much more sensitive they think they are to injustice, allow me to direct them to my previous blog post “Many MAiD Proponents Want Credit For Fixing Problems They Ignored For Decades.” Often “MAiD” proponents shout that their cause is a “social justice issue,” yet they have a history of ignoring disability justice.
That’s why they’ve helped create a world where disabled people are offered “MAiD” instead of support.
As I ponder the actions of policymakers who view disabled people as acceptable collateral damage, I find myself reflecting on Ecclesiastes 1:9-“What has been will be again, what has been done will be done will be done again, there is nothing new under the sun.”
This pattern of regressive disability policy decisions is not new; disabled people have been experiencing the same ignominy for generations.
Of course there is a possibility that the Final Rule will not be repealed. Perhaps damage to the USA’s disability inclusion infrastructure can be prevented or repaired. I hope euthanasia opponents will work toward these efforts.
I urge readers to resist cruel policies that consign disabled people to what disability studies scholar Paul Longmore called a “social death.” Instead of allowing disabled people to be abused and ignored, society should base its disability policies on Isaiah 61:1-“He has chosen me and sent me to proclaim good news to the poor, to heal the brokenhearted, to proclaim release to captives and freedom to those in prison.”
Author Note:
It may still be possible to save the healthcare non discrimination regulations, and other parts of the Final Rule.
For information about how to contact your attorney general to ask them to drop out of the Texas vs. Kennedy lawsuit, see this link.
To write to the US Department of Justice, use this link
To write to the Department of Health and Hunan Services, use this link.
For a quick explanation of what Section 504 of the Rehabilitation Act is, see this Drunk History video about the history of the law.
For a compelling film about the harms of unnecessary institutionalization, watch the 2014 movie Love Land.
You can find a 2023 video of Pope Francis discussing the inclusion and dignity of people with disabilities at this link.
To read the Euthanasia Prevention Coalition’s statement against the Texas vs. Kennedy lawsuit, see this link.
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