Cathy Ludlum’s Outstanding Letter Published In the Hartford Courant

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Head and shoulders photo of Cathy Ludlum, a woman in mid 50s with glasses and wheelchair headrest.

Assisted suicide does not increase personal choice

We at the grassroots disability organization Second Thoughts Connecticut object to a sentence in a recent story [Dec. 14, courant.com, “Former state GOP chairman takes job as Connecticut Catholic Church lobbyist“].

The sentence reads: “Culhane also lobbied successfully against other bills the church opposed, including repeated attempts over the past few years to pass legislation that would have allowed terminally ill patients to seek a doctor’s help in ending their lives.”

There are many reasons to oppose assisted suicide, and most of them have nothing to do with religion.

The repeated defeat of these proposals came about because members of the disability and medical communities approached legislators with practical concerns. These include the likelihood of abuse or coercion, misdiagnosis or wrong diagnosis. There is also clear evidence that wherever assisted suicide becomes law, it gets harder for patients to receive life-saving procedures — because death will always be the most cost-effective treatment.

Perpetuating the stereotype that most opposition comes from the religious community not only does a disservice to all of us who have spent years fighting assisted suicide. It distorts the issue.

Instead, we should be educating the public about the many ways assisted suicide does not increase personal choice. Quite the contrary.

Cathy Ludlum, Manchester

Anita Cameron: In Disasters We Lose

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I have been involved on a voluntary basis in emergency management and preparedness for 15 years in various areas around the country. My passion is getting people with disabilities involved in disaster preparedness because our community knows that during those times, we lose.

Why? Because jurisdictions do not include people with disabilities in their disaster plans. At best we are an afterthought. Because of this, we lose–we are displaced, unnecessarily institutionalized, often far from home, and we die–deaths that could have been prevented but for reaching out and including us in preparedness planning before, during and after disasters.

On the federal level, there are several bad actors responsible for people with disabilities being discriminated against and suffering needlessly during disasters. The Federal Emergency Management Agency FEMA), the American Red Cross, and the Centers for Medicaid and Medicare Services (CMS) are three big players who must be held accountable.

FEMA

According to its mission statement, The Federal Emergency Management Agency is responsible for helping people before, during and after disasters. Unfortunately, this doesn’t include disabled folks. FEMA recently disbanded almost it’s entire cadre of Disability Integration Specialists, who are responsible for ensuring that the disability community is served during this time. In fact, Linda Mastandrea, Director of the Office of Disability Integration and Coordination, effectively told attendees at the Getting it Right 2018 National Inclusive Disaster Strategies Conference in Washington, DC, that we were on our own. Puerto Rico was still reeling from Hurricane Maria and we were getting ready for the season that would include Hurricanes Michael and Florence. To hear this was frightening, indeed! With the subsequent unnecessary deaths of disabled people in those disasters, FEMA has blood on it’s hands and must be held accountable!

American Red Cross

The American Red Cross provides disaster relief, but is best known for running shelters across the United States where people go to when they need to leave their homes during disasters. These shelters are supposed to be accessible to people with disabilities, but we are often turned away, either because the shelter is not wheelchair accessible or shelter managers mistakenly turn away people with service animals. Often, those with complex disabilities are turned away or sent to segregated medical shelters.

Centers for Medicare and Medicaid Services (CMS)

The involvement of CMS is especially egregious. They recently expedited the ability of shelters in South Carolina to send disabled people to nursing facilities, often far away, when shelters can’t handle us and our needs. Once in a nursing facility, it is very difficult to get out. This is in violation of the 1999 Olmstead Supreme Court decision that says unnecessary institutionalization is discrimination under the Americans with Disabilities Act. That CMS is colluding with an agency that actively discriminates against disabled folks is beyond belief!

ADAPT and FEMA

FEMA was to have a meeting on their Strategic Plan (https://www.fema.gov/strategic-plan) with various stakeholders, including some disability groups, however, that plan was written without input from the disability community. In fact, but for a picture, there literally was no mention of us!

Then a meeting with ADAPT was scheduled for November 6th, and we provided our conference call number. But FEMA Administrator Brock Long preferred that we use FEMA’s number. On October 29th, 30th and 31st, ADAPT members from all ten FEMA regions contacted Administrator Brock Long, asking that he postpone the original stakeholder meeting because the disability community was not consulted. Our request was denied so, in good faith, we went ahead with the November 6th call, hoping that at least, we could give input that FEMA would act on.

Administrator Long controlled the call so that we could not speak unless he opened each line. When we were finally permitted to speak after 20 minutes, we told FEMA our grave concerns and chided them for having us on a call where they had no intentions of listening to us. At that point, the call was abruptly ended by FEMA. If there was any doubt that FEMA cared for disabled people or wanted to address disability issues in disaster preparedness, that phone call more than confirmed it!

READI Act

On November 29, 2018, S. 3679, the READI (Readying Elders and Americans with Disabilities Inclusively) for Disasters Act, was introduced by Senator Bob Casey, (D-PA) after hearing from his constituents. It would ensure that older adults and individuals with disabilities are prepared for disasters, and for other purposes.

It will also coordinate efforts between federal, tribal, territorial, state, local and non-governmental agencies during the preparation, response, and mitigation before, during and after disasters.

The READI for Disasters Act will redefine how our government reviews the use of disaster response funds, will create training, and disability and aging technical assistance disaster centers, as well as a program to examine specific issues related to people with disabilities and older adults. This bill will create a National Commission on Disability Rights and Disasters, including Department Of Justice involvement and oversight Committee to review all ADA settlement agreements related to disaster response activities for the years 2005-2017 and to also direct the Government Accountability Office to investigate whether past federal funds have been used to ensure accessibility to emergency programs and services.

The READI Act will be reintroduced in the 116th Congress. Hopefully, due in part, to the hard work of the disability community and our friends in Congress, it, and a House version will pass, it will be signed into law and people with disabilities will no longer be losers in disasters.

Please share this information to help save lives in future disasters.

NDY Files Public Comment on Proposed “Public Charge” Rule Change

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On December 7, NDY joined many other national disability organizations (e.g. NCIL, ASAN, AAPD) by filing our own public comment against a proposed rule change by the Department of Homeland Security. The rule change would significantly ratchet up the obstacles to lawful immigration facing people with disabilities, including children, seniors and the families who love them. Comments are due Monday and can be filed online at the government website.

Below are some potential scenarios described by attorney Lisa Blumberg, who took the lead in developing NDY’s public comment.

[The proposed rule change] “would interfere with family members helping each other in the way that strong families often do. For example, a family of modest means whose members have contributed to the country for years might not be able to invite an elderly or disabled relative still in their country of origin to live with them. This could be so even though they have no thought of looking to the government for assistance. Indeed they may even be counting on the relative to provide afterschool childcare so that both parents would feel comfortable about working full-time. The proposed rule could also be used to bar a newly graduated engineer with spina bifida or another physical limitation from entering or staying in the country because at some point in the future she may apply for a Medicaid waiver to get in-home support so she can work until retirement age.”

“For instance, the presence of a medical condition considered ‘likely’ to require extensive medical treatment or institutionalization, or that may interfere with the ability to provide for oneself, or to attend school or work, would be considered a heavily weighed negative factor. Conclusions could differ widely as to whether this factor is present, for example, in the case of a person with moderate cerebral palsy with entry level bookkeeping skills who currently has no general health problems. As most people with disabilities can attest to, prejudice against people with disabilities is extremely prevalent and medical predictions about the future can be notoriously inaccurate.”

To read the whole comment, please go here.

Changing Images On the International Day of Persons With Disabilities

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Today, as part of the National Disability Leadership Alliance, NDY is proud to share the first images from The Disability Collection, a dedicated collection of images that authentically portray people with disabilities in everyday life.

Smiling young female adaptive athlete getting advice from adaptive basketball coach during practice on summer evening
Three lovely women spending time enjoying coffee at the cafe and using sign language as a way of communication.
Boy with Down’s syndrome  in the bath with his two year old brother. He has blue eyes and blond hair. They have fun and play with the water. 

The Disability Collection is the first-of-its-kind partnership between disability leaders and major media companies to change representation of disability in the media. We are partnering with Oath and Getty Images to empower the media industry with better images that more accurately represent our communities. The project has already raised awareness in the industry and recently won a Shorty Social Good Award which honors leading social impact initiatives.

We are just getting started, and invite you to join us in growing the collection! Here’s how:

  1. Submit photographs to be considered for to the collection
  2. Sign up to be a model in a photo shoot or host a shoot at your organization’s location
  3. Share your feedback on how you’d like to see disability represented using #thedisabilitycollection on social media

Help change how the world sees disability. Get started at thedisabilitycollection.com.

Mike Reynolds’ Excellent Op-Ed in the Press Herald

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Maine Voices: Don’t sign petition to put flawed assisted-suicide law on state ballot

Based on what happened after Oregon legalized the practice, it’s incompatible with values held by Mainers.

BY MIKE REYNOLDS – SPECIAL TO THE PRESS HERALD
11/29/18

LEWISTON — Maine residents are being asked to sign a petition calling for a referendum on legalizing assisted suicide to be placed on the 2019 ballot. The practice was legalized in Oregon in 1997. Since then, there have been far more problematic issues and unanswered questions than any assisted-suicide proponent claims.

The Maine Legislature has voted down a number of attempts to legalize assisted suicide over the past two decades. The Health and Human Services Committee has never supported any version of this proposal, and an assisted-suicide measure has never passed the Legislature. In fact, the last time such a bill went to a floor vote, in 2017, it failed the House by 61 to 85, a larger margin than in recent history.

The proponents of this law can’t pass this it in the Legislature, so now they are trying to get it through a statewide referendum. The problem is that the proponents have short memories: In 2000, Maine voters soundly rejected a referendum that mirrored Oregon’s law. Mainers have decided time and again against assisted suicide, and we don’t need another referendum funded primarily by out-of-state interests.

If asked to sign a petition for the referendum, say “no,” and be firm. Assisted-suicide laws are the most blatant forms of discrimination based on disability in our society today. Does it make sense to tell a person who is battling cancer to consider suicide? Should we not be doing everything we can to support these people in having the best possible health care and home care so they have quality of life for however long they have?

With the experience of the laws in Oregon as a guide, the question of assisted suicide becomes, quite frankly, incompatible with Maine values. Oregon’s doctors have written suicide prescriptions for individuals whose medical basis for eligibility for assisted suicide was listed as diabetes. In Oregon, and in the referendum language, a person is terminally ill if he or she has a condition that could be reasonably considered terminal only if the patient refuses needed medication. By that definition, people could qualify as “terminal” who have epilepsy, ongoing infections and other illnesses that can be managed with medication. This petition is not limited in scope and is actually far more dangerous than the proponents want to admit.

While much of our state is relatively close to adequate hospice and palliative care, there are huge gaps in northern and eastern Maine when it comes to these services. Before considering a public policy of assisted suicide, Maine must solve the vast disparity of access to hospice services and palliative care. It is not time to even consider a flawed law such as the one this referendum is proposing. Please, decline to sign.

In Oregon, the rate of suicide is 33 percent above the national average, and the rate of teen suicide is soaring. There is a clear problem of suicide contagion.

While the proponents claim there are safeguards, there is absolutely no oversight once the pills are prescribed. Under the Oregon law, a friend or relative – even an heir – can “encourage” an elder to make the request, sign the forms as a witness, pick up the prescription and even administer the drug (with or without consent) because no objective witness is required at death, so who would know?

The method of dying that the referendum is trying to legalize involves taking 100 pills of a barbiturate, emptying the contents of each pill into a sweet solution, then drinking the solution. It can take up to 104 hours for people to die from the solution, and in seven Oregon cases, the person who took the solution woke up.

This is not “death with dignity” – it’s a desperate effort to further a dangerous law and give it mainstream credibility, with no regard for the harm it causes, and it even gives full legal immunity to any medical personnel or other person who assists in the suicide. The only real protections in the law are for people other than the patient, foreclosing any realistic potential for investigation of foul play.

For all of the reasons above, please decline to sign.

Mike Reynolds is a Lewiston resident and a member of Not Dead Yet, a disability rights group that opposes the legalization of assisted suicide.