Disability Futures

You equate the Canadian physician-assisted suicide proposal with the Oregon, Washington State and Vermont laws. The differences show how far down the assisted-suicide slippery slope we have gone.

First, Canada does not require a diagnosis of a terminal illness or condition, but only suffering that the patient finds “intolerable.” This certainly takes the physician off the hook. A spurned young lover thinks that life is over. Do we really want society to assist him to end his life?

Second, Canada does not require a physician to predict death within six months, but only that death is “reasonably foreseeable.” As subjective as the requirement in American states with aid in dying laws that death be expected within six months, Canada loosens it much more. Let’s hope that the assisting physician is prescient.

Third, there is no mandate for a physician to require treatment or palliative care. What’s next in this slope?

There are some misleading statements and omissions in the article “Sides deepen in Iowa’s death with dignity debate” [April 17]. Contrary to the article, every major national disability organization that has taken a position on the issue opposes legalizing assisted suicide. The reference to the Disability Rights Legal Center does not refute this fact. DRLC is now run by Kathryn Tucker, former in-house attorney for Compassion and Choices, the assisted suicide lobby group, for over 15 years. DRLC’s primary claim to being “national” is two assisted suicide lawsuits she has led in New Mexico and New York. For a listing of the legitimate national disability organizations that oppose legalizing assisted suicide, see http://notdeadyet.org/disability-groups-opposed-to-assisted-suicide-laws.

Why are they opposed? This is not about people’s option to commit suicide, which is not illegal. This is about how the health care system upon which we all depend responds to a person who says they want society’s agreement with their suicide and the means to do it. We are worried about health care cost-cutting pressures. Assisted suicide by doctors is a deadly mix in a profit-driven health care system.

We are also worried about putting lethal drugs in the home of a seriously ill person in a society where one in 10 elders are abused, mostly by family. The claim that there are “safeguards” doesn’t make it so.

As a result, in part, of a lawsuit filed by Justice in Aging, GLBTQ Legal Advocates & Defenders (GLAD) and Foley Hoag LLP on behalf of Plaintiffs Hugh Held and Kelley Richardson-Wright and a proposed nationwide class, the Social Security Administration (SSA) has issued a new policy that provides a significant win for individuals receiving Supplemental Security Income (SSI) benefits who are married to someone of the same sex but whose marriages were not recognized by SSA when they should have been.

SSI is a benefits program that provides for basic necessities for very low income people over 65 and people with disabilities. SSI recipients married to someone of the same sex were being asked to pay back “overpayments” caused by SSA’s failure to recognize their marriages. Under SSA’s new policy, they should now be able to receive a waiver, or forgiveness, of those overpayments even, in most cases, without having to formally apply for relief.

These overpayments were caused by SSA’s continued application of the Defense of Marriage Act (DOMA), which unconstitutionally disrespected these marriages, for many months, and even years, after that statute was struck down by the U.S. Supreme Court in Windsor v. United States. SSA calculated eligibility and benefit amounts for these individuals as if they were single, even though they were married, which resulted in overpayments. When SSA finally recognized these marriages, the agency asked them to pay back thousands of dollars they did not have and which SSI rules did not allow them to save.

Hiba Al Sharfa has become the Gaza Strip’s first teacher with Down’s Syndrome, after a lifelong effort to achieve the dream.

Al Sharfa teaches at Right to Live, an NGO based in the Gaza Strip that supports and cares for children with Down’s Syndrome. It works to help educate and rehabilitate children with the condition, with the aim of helping them integrate into mainstream society.

Reports say Al Sharfa is close to her students and able to better meet their needs because she understands their experiences having lived through similar struggles herself. More than 400 children are educated at the Right to Live Centre, who participate in classes including dance, crafts, and life skills.

Nabil Aljaneed, director of rehabilitation at the Centre, said there is still a great deal of work to do in supporting people with Down’s Syndrome in Gaza. “We do numerous workshops and awareness programs for the local community, because honestly until now the local society is very poor when it comes to accepting the kids and young people who have this disorder,” he said.

As someone with autism spectrum disorder, John Elder Robison knows what it's like to feel emotionally removed from situations. Robison tells Fresh Air's Terry Gross that throughout his life people have told him, "There's this emotional language you're missing. There are stories in people's eyes. There are messages."

Robison didn't fully understand what they meant until he received transcranial magnetic stimulation, a noninvasive procedure in which areas of the brain are stimulated with electromagnetic fields to alter its circuitry.

Neurologist Alvaro Pascual-Leone, who treated Robison, explains TMS as a "tool that allows us to introduce a small amount of current into specific parts of the brain without having to use surgery to do so. ... By introducing current in it, we can probe the function of certain parts of the brain [and] we can even modify how different parts of the brain work."

Robison says that the treatments left him with a sense of empathy that he'd never experienced before. But, he adds, not all of the changes caused by TMS were welcome. Ordinary conversations would leave him feeling emotionally overwhelmed, and, in some cases, his memories of past events were tainted.

"It's like I lost a protective shield," he says. "All these memories that hurt me because I was like the butt of a joke or something, I now realize that I just kind of went through life and people maybe said mean things about me but I never knew, so it didn't hurt. Now, stuff like that, it really hurts a lot."

Deafblind Interveners apply their skills to improve the educational outcomes for students from birth through age twenty-one who are deafblind. This program will prepare you to earn the national intervener credential through the National Resource Center for Paraeducators (NRCP).

National legislation is pending (the Alice Cogswell and Anne Sullivan Macy Act) requiring that students who are deafblind have access to trained and qualified interveners. Now is the perfect time for you to complete your certificate, earn your national intervener credential, and fill this growing need.

The program is taught as an online cohort where you follow a set sequence of courses. Each course includes lab hours, requiring you to work on your final portfolio each semester. It is anticipated that most students already work with deafblind students. If this is not the case, you will be assisted in finding a placement by the Program Director.

As telemedicine better enables care at home, it’s critical to understand what seniors think about emerging technology and how they use health and wellness capabilities from devices. From wearable monitors that track activity to sensors that can support a home health aide’s care plan, health and wellness technology is complementing .

But are older adults into the trend?

Not really, according to a recent technology report by Link-age Connect, a research and consultancy firm that conducts market research on the aging population 65+, and Aging in Place Technology Watch, a market research business that focuses on technologies and services that enable seniors and baby boomers to remain longer in their homes. The findings oppose a 2015 survey that found nearly two-thirds of seniors prefer to use self-care technology to independently manage their health.

The problem with health and wellness technology is that it’s not useful enough for seniors to want to use them, says Laurie Orlov, an industry analyst and founder of Aging in Place Technology Watch.

“[The findings] imply that trackers are not useful enough for seniors to use,” Orlov told Home Health Care News. “The wearables market is in the early stage, and hopefully it will get better. The most important thing about the tracker as seniors age is that there is some way to urge them to get up and move. Most trackers aren’t urging seniors to get up and move.”

Last week in Lansing we heard more about the long-running battle between Medicaid HMOs and mental health organizations over Michigan's $2.4 billion Medicaid behavioral health budget. It's going to be until late in the year before much more is known about how the state will proceed. And that is OK.

On Tuesday, House and Senate leaders stepped into the fray and inserted their suggestions for how to proceed into the state's proposed fiscal 2017 budget. That means the legislators essentially halted, at least for this year, Gov. Rick Snyder's effort to hand over Medicaid behavioral health funding to the health plans.

They also rendered moot Lt. Gov. Brian Calley's self-imposed deadline of mid-May to have a workgroup create replacement language for mental health services for the proposed budget, which begins Oct. 1.

The Centers for Disease Control and Protection said on Wednesday (Apr. 13) that there is now definitive evidence of a link between the Zika virus and babies born with serious birth defects. The infectious disease, transmitted by Aedes aegypti mosquitoes, has emerged as this year’s dominant public health emergency. It’s also emerged as an international spectacle–with troubling implications for the way people around the world continue to discriminate against people with disabilities.

Much of the media coverage of the Zika virus has focused on the disabilities and deformities associated with microcephaly, and on the difficulties faced by women who are pregnant with, or have given birth to, babies with the condition. These are all important subjects for discussion. But as a disability-rights scholar, what concerns me is that the language and imagery we use to discuss disability. Too often, the narrative surrounding microcephaly relies on familiar–and disturbing–assumptions about what kind of lives are worth living.

Many of the most widely-circulated photographs of babies with microcephaly follow a familiar pattern. In these images, the baby faces the camera but does not meet its gaze. This position invites viewers to look closely the child’s skull, the light playing upon a baby’s abnormal craters and ridges. The framing encourages viewers to treat the child as a curiosity. The parent is often cropped out of the frame; we see only their hands and lap, cradling the baby, revealing nothing about him or her as a person. All we know is that they have brown skin and their babies—often fairer—are sick.