Patti's Blog - Advocate for Elders, People with Disabilities and Their Families

Autistic Writer/Blogger/Activist Amanda Baggs Facing Life-Threatening Discrimination in Vermont Hospital

Excerpt from: Not Dead Yet (click for full article)

 

Amanda Bagg’s name and work should be familiar to a lot of people in the disability community.  A lot of people might remember reading her blog essay “If I am killed” on our old site, where it was reproduced with permission – and will be  put up again in the near future.  Many more will remember seeing her youtube video “In My Language.”

Amanda Baggs is an autistic woman who writes brilliantly, doesn’t use speech as her primary mode of communication and also lives with a variety of conditions, one of which has become quite serious in terms of being life-threatening.  Her friend Laura T, aka “webmuskie” around the internet, wrote us that after the last of several bouts with aspiration pneumonia, Amanda had been admitted to the hospital to treat the effects of the gastroparesis that was at the root of the problem.  The understanding going in was that this would involve the placement of a feeding tube, which would help her increase her food intake and lower the risk of aspiration.

Suddenly, They’re All Gone

Excerpt from: The New York Times (click for full article)

 

I have my life back now, but that fact is less simple than it was before. When I look at the mementos I’ve inherited, the crumbling photo albums, cookbooks that smell of cigarette smoke, ’50s furniture and cut glass, I also see where they used to sit, in other places and rooms. I miss the quiet afternoons, the houses that eventually came to feel like home, in cities I’ll never again have reason to visit. I miss it all. I miss them.

Sometimes, when I’m out, I catch a glimpse of a short, gray-haired man in a baseball cap or a skinny old woman in a tailored bright jacket and my heart stops. I see my old people everywhere, which only reminds me that I’ll never see them again.

The New, Nasty Sibling Rivalry

Excerpt from: The Global Mail (click for full article)

 

Parents are living longer. The 85-and-over age group is the fastest growing in Australia, and more have dementia. They are staying at home longer, dependent on family care for extended periods.

There are more children from those big, post-war families to wrangle over decisions: who is the primary carer, who has financial control, who is mismanaging Mum’s money, who isn’t pulling their weight ...

And a parent’s death doesn’t end the fighting; the value of the parental home has increased so dramatically over the decades that more siblings consider it worthwhile going to court over the estate, destroying whatever skerrick of good will may have survived.

“Thirty or 40 years ago, it was a huge thing to dispute a will, and only the rich did it,” says Rodney Lewis, a specialist lawyer and author of Elder Law in Australia. “With increasing wealth we’ve become more litigious and this is one of the areas it’s manifest.”

Prepaid Funeral Plans and Medicaid- What You Need to Know!

Everything Elder Law (click for full article)

 

A prepaid funeral contract is a legal agreement that allows a person to pay now for funeral services that will be needed sometime in the future. This contract may include the funeral, burial, cremation, and other related services. A prepaid funeral contract may be revocable or irrevocable. Irrevocable means the contract cannot be canceled. Only an irrevocable funeral contract is an exempt asset for Medicaid purposes.
 
Medicaid does not pay for funerals, but it does have rules that allow you to set aside money for your own funeral, burial, or cremation without having that money "count" as part of your assets when Medicaid determines your eligibility for long-term care coverage. Medicaid allows you to put money aside, in a separate account, to pay for your funeral and burial expenses. Qualified funding vehicles, such as funeral insurance policies and trust accounts are allowed, provided they are irrevocable and non-refundable, and cannot ever be used for purposes other than funeral expenses. When the proper funding vehicles are used to prepay a funeral, the value of the prearranged funeral contract and the funding vehicle are excluded as a countable resource in determining SSI & Medicaid eligibility.

Canada: CBC Interview with Norm Kunc About Disability Rights Advocates’ Opposition to Legalization of Euthanasia/Assisted Suicide

Excerpt from: Not Dead Yet (click for full article)

 

"Well, I’m trying to make it known that the disability rights community has serious concerns about the legalization of euthanization. When you cut through the arguments on each side, there is one fundamental difference. Those people in favor of legalization believe that they can have a choice to end their own life without having an impact on disabled people. The disability rights community, we say that’s naïve; If we legalize euthanasia based on anecdotal end of life experiences, there will be systemic repercussions in terms of our health system, our legal system – it will have a profound detrimental impact on people with disabilities."

A Mother's Death Tested Reporter's Thinking About End-Of-Life Care

Excerpt from: NPR (click for full article)

 

"You never need to rush the decision-making," he told me. "It should always be about making the right decision for the patient and the family. ... We have plenty of money in the U.S. health care system to make sure that we're supporting families in coming to a decision that they can all feel good about. I feel very strongly about that."

 

Weighing the End of Life

Excerpt from: New York Times (click for full article)

 

With dying humans, similar situations arise every day: hospital stays that fix the acute problem and worsen the chronic ones; emergency department visits that yield diagnoses but require weeks of recovery from the waiting and testing; surgeries that are themselves minor but provoke major confusion, complications and hated nursing home stays. On the other hand, there are the relatively simple problems that might be addressed by a doctor if only seeing one didn’t require an ambulance for transportation, or time off work by an adult child, or more taxi fare than remains in the Social Security check, or more effort than seems worth the while.

And sometimes it’s even more complicated than that. Last year, a patient of mine with 15 major medical problems, including a form of leukemia, decided he didn’t ever want to return to the hospital, do chemotherapy, or try any of the other treatments we discussed. But for weeks after that, he railed and fumed at the prospect of palliative care, because he wanted very badly to live.

Belgium: “Double Euthanasia” of Deaf Twins Losing Vision and Reactions from a Deaf-Blind Blogger

Excerpt from: Not Dead Yet (click for full article)

 

I agree with Coco – the Deaf-blind organization in Belgium should speak out on this.  In fact, I think it would be a big mistake for organizations and individuals outside of Belgium not to speak out about this double-killing.  Otherwise, the discussion will be dominated by Belgian euthanasia apologists, euthanasia advocates of all stripes, and bioethicists talking out the “problem” of “extreme” cases.  And then everyone will forget – until the next and more extreme killing comes along.

Planning in the Digital Age

Excerpt from: Social Science Research Network (click for full article)

 

Abstract:     

Recently, a new subdivision of property has emerged that many people label as “digital assets” such as accounts used for e-mail, professional and personal data backups, banking, investment, and shopping, domain names and web-hosting accounts, social networking accounts, and avatars for online games. While estate planners have perfected techniques to transfer traditional types of property, many estate planners do not address digital assets when preparing their clients’ estates.

This article aims to educate estate planning professionals on the importance of planning for the disposition of digital assets, provides those planning techniques, and discusses how to administer an estate containing digital assets. The appendix contains a sample form which may be used to organize digital assets.

Preparing for a Loved One to Die at Home

Excerpt from: New York Times (click for full article)

 

“What I see that prevents people from being able to stay at home [to die] is not their medical needs but the needs of their caregiver — can the caregiver really help, are there resources to help, or is that person going to be overwhelmed?” Dr. Morrison said.

There is professional help available. But before we get to that, here are what specialists say are the most common kinds of equipment and preparations you may need – though, of course, every person’s medical and emotional condition is different, as is every person’s home.

1. Make room for the bed.

2. Don’t forget curtains for privacy.

3. Get tools that keep them moving. 

4. Fix their favorite chairs.

5. Experiment with earphones.

6. Make the existing bathroom safer.

7. Good lighting is critical.

8. Bedside commodes are a delicate matter.

9. Make breathing easier.

10. Are pain pumps or intravenous drips for pain helpful?

11. Should you order a hospital bed?

12. Consider hospice