The Washington Post had an enlightening article on how Medicaid forces people to remain poor to receive any benefits.  The article discusses a bipartisian fix co-sponsored by seventy senators and by 359 members of the House called The Achieving a Better Life Experience (ABLE) Act of 2013.

Medicaid does have one huge flaw, which hurts millions of people living with disabilities, injuries, or chronic illness. You have to live, officially at least, as a pauper. With important variations across the states, most recipients are forbidden from having more than two or three thousand dollars in the bank.

The ABLE Act was introduced last year to fix this problem.  The Act will allow people living with disabilities to establish accounts that can be used for educational expenses, housing, transportation, assistive technologies, and other basic needs.  For many people, this reduces the need for complicated record-keeping and paperwork. It’s cheaper and easier than the complicated special needs trusts many of us have spent thousands of dollars to create and manage. It provides tax advantages. It legitimates what families are often already doing in less transparent and efficient ways.

“Although more remains to be done, the ABLE Act promises to be a humane and valuable contribution to public policy. In an era disfigured by mean-spirited and polarized gridlock politics, this is no little thing.”

The insurance expansion under the Affordable Care Act will cost $1.383 trillion over the next decade, more than $100 billion less than previous forecasts, according to the nonpartisan Congressional Budget Office.

The nonpartisan budget office’s report, an update to projections from February, shows the law costing less than in previous estimates in part because of the broad and persistent slowdown in the growth of health care costs. The news is welcome to deficit hawks but Republicans are still complaining about the law because it is an election year (Lowrey, New York Times 4/14).

 

14 year old Marie Freyre was suffering from seizures and cerebral palsy. After being denied home health care by the Agency for Health Care Administration, Marie was forced to go to a nursing home in Miami, 5 hours away from her Tampa home. A judge had previously ordered that Marie be returned to her mother to be cared for, but the Agency for Health Care Administration refused to pay for this manner of care. During Marie’s transport to Miami, she was not given food, water, or her seizure medications. Such poor treatment, in her fragile condition, led to Marie’s death 2 days later.

Up until recently, Marie was able to have stabilized care from her mother. Being forced into unfamiliar and incompetent hands ultimately led to her wrongful death. Her case highlights a growing conflict between Florida healthcare regulators and the U.S. Department of Justice. In spite of a binding court order, health care providers has the callous audacity to refuse to comply with federal laws. Large healthcare corporations should not be allowed to break a judge’s official ruling. The Agency for Health Care Administration needs to be held responsible to such a degree that they do not continue to look at the bottom line, rather than what is best for a patient.
 

Emma Banks is a a wife, mother, and one of the primary caretakers of her widowed father. She was kind enough to offer to write an article advising other caretakers.  Hope you enjoy her writing.

Fun for Seniors

As we’re all getting older, our parents are aging as well, and their lives, like ours, are changing in monumental ways. I just got married three years ago, and my mother passed away two years later. It’s been extremely hard on everyone, including my brother and I, but it’s been especially rough for my father. He’s been struggling to adjust to life on his own, without his best friend, and I’m doing everything I can to keep him engaged with everyday life. My brother lives out of state, so it’s just me and my dad now. Here are some of the fun activities I’ve been trying to set him up with in his new ‘senior citizen’ life (he hates to be called that!).

Exercise

My dad has always been big on exercise. He loves the outdoors, so I try to spend a lot of time with him outside whenever I can. We go on long walks together as often as possible. He was also big on biking when he was younger. My dad was the king of mountain biking, and would explore all kinds of trails wherever he went. That’s why when his birthday rolled around this year, I picked up an exercise bike for him! He keeps it in the den and uses it all the time, watching TV or reading a book or magazine while he cycles. It’s great for keeping him in shape—since staying active has always been so important to him, it was definitely something he wanted to keep in his life, even as he ages!

Social Stimulation

You may think I’m crazy, but I also set my dad up on Facebook recently. Yes, it’s true—Facebook is getting more popular with senior citizens. How do you ‘Like’ that? My dad loves it! He has reconnected with tons of his high school buddies from the rugby team, plus tons of his fraternity brothers from Dartmouth. My dad is pretty tech-savvy, but even if your parent is not, Facebook is user friendly and easy to learn! It’s an exciting tool seniors can use to stay in touch and keep some kind of social interaction going. Definitely worth a shot!

Food Freedom

My mother always did most of the cooking, but recently, my dad has been trying to pick up a few tips and tricks so he can cook for himself! I’ve actually signed him up for cooking classes, too, at the local senior center. They offer some basic introductory courses to teach older folks simply, easy-to-make meals. It’s certainly an adjustment cooking for one—I remember having to do that when I first got my own apartment, and it was tough! I also go over to his house as much as I can to help him out with meals. Cooking is always more fun together! I also help him by delivering groceries making sure that he has a nice variety of snack, food for meals, and some treats for now and then.

Being a senior citizen (or having an elder parent!) doesn’t have to be scary. It can certainly be lonely and isolating at first, but there are ways to combat that. Between exercise, socializing, and staying healthy, your elder parent can definitely live a good life! Whether it’s an exercise bike or a group exercise class, making a Facebook account or joining a church group or poker-playing group, there are plenty of ways to fill their time and make things fun as a senior citizen. Plus, don’t forget the senior citizen discount! That’s why I love shopping and going out with my dad.

Last fall, the New York Times posted an informative blog article discussing the pros and cons of families placing hidden cameras to protect loved ones from being abused or neglected in nursing homes. Certainly, many of the most shocking cases of abuse which have been discovered have come to light due to exactly this scenario: The family starts to suspect something is wrong. The clues are not always obvious, but they raise concern. Maybe their mother has a few new unexplained bruises, or grandpa is suddenly fearful of strangers. Trinkets might go missing, or baths or meals might seem to be skipped. Worried, the family reports their concerns, but receives only verbal assurances and no change in care. They can’t prove what happens at night, but they just feel that something is wrong, so they place a camera to verify that their loved one is safe, only to discover that they are being neglected or abused.

Video evidence is certainly powerful when it comes to light. Allegations of abuse can be glossed over as unreliable, a paranoid family, a delusional resident. Physical wounds can be blamed on an innocent fall instead of a physical attack. Psychological trauma can be blamed on medication, mental deterioration, and other diagnoses. Video footage of a resident being abused or neglected by staff however cannot be disputed.

Oklahoma, New Mexico and Texas have explicitly given state residents the right to place hidden cameras in facilities. Others are debating privacy issues, and some are concerned that the workers should be given notice that they may be recorded. The issue remains contested, but hopefully state governments will put in place standards which equally protect both the safety and the rights of nursing home residents. See NY Times Blog.

Often this blog focuses on things going wrong in the nursing home and elder care industries. Today though, the focus is on a groundbreaking facility in Holland that seems to be getting a lot of things right. De Hogewayk is a special home built for residents with severe dementia. Dementia patients are known for their tendency to become confused and wander off, looking for something, someone, or just because they don’t understand why they need to stay close to care givers. Due to this, many dementia wards employ lock downs, medications, and alarms to help keep the residents safe.

De Hogewayk, or The Dementia Village, takes a different approach. The facility is set up like a small burg, with streets free from cars and buses, shops like a grocery store and hair salon, and houses, where several residents stay together with a few live in care givers who wear street clothes, not scrubs. It has been compared to a miniature version of “The Truman Show,” a movie where Jim Carrey discovers that he lives in an artificially constructed town. The village is completely self-contained, so the residents may wander as they please and participate in the little tasks, like picking up milk at the store, joining a club or hobby group, or visiting a friend down the street, that make them feel useful and happy. The staff is instructed not to correct the residents as they describe their delusions, but does not lie to them if they ask questions about where they are or how the village runs.

The idea came from a conversation between two workers in a traditional dementia ward, who both agreed that they were glad that their recently deceased mothers had passed on quickly, instead of having to be in a place like the ward where they worked. Once they realized what they had said, the conversation turned to what a dementia facility could be like, should be like, and how to make it happen.

Giving residents freedom and a sense of normalcy has been a big hit within the community and the waiting list for the facility is very long. The project was completed with funds from both the government and the community, and does not cost much more than traditional dementia care options in Holland. Similar facilities are being planned and built in Switzerland and the US. It is encouraging to see a facility striving so hard to treat the residents as normal people who have different needs, instead of as patients who need to be medicated and locked up for their own good. The model won’t work for every community, but forward-thinking innovation like the idea that brought about The Dementia Village is key to changing the landscape of how elder-care facilities are planned and run.

 

For more information, see The Guardian and Gizmodo.

The Wall St. journal reported that recalls of defective medical devices nearly doubled in the decade from 2003 through 2012, according to a Food and Drug Administration report. The total number of recalls rose to 1,190 in 2012, up from 604 in 2003. There was a sharp increase in recalls where the defective product carried a reasonable probability of death.  In 2012, there were 57 of these so-called Class I recalls, up from seven in 2003.

Los Angeles Times: Obamacare Has Led To Health Coverage For Millions More People
President Obama’s healthcare law, despite a rocky rollout and determined opposition from critics, already has spurred the largest expansion in health coverage in America in half a century, national surveys and enrollment data show. As the law’s initial enrollment period closes, at least 9.5 million previously uninsured people have gained coverage. Some have done so through marketplaces created by the law, some through other private insurance and others through Medicaid, which has expanded under the law in about half the states. The tally draws from a review of state and federal enrollment reports, surveys and interviews with insurance executives and government officials nationwide (Levey, 3/30).

 

Unfortunately, the powerful nursing home industry has influenced members of the Senate Medical Affairs Committee to block the bill that would allow family members to monitor and protect the care and treatment provided to nursing home residents.  If passed, patients could purchase and install the equipment to allow family members to monitor them, but it’s received opposition from the $115 billion dollar nursing home industry. The excuses from the opponents of the bill were ridiculous.

The first excuse was that it would violate resident’s privacy.  This is a red herring.  The video camera would only be allowed to record a resident who agreed to be recorded.  No privacy issues exist.

The second excuse is that the government should not "interfere" with a private business.  This is ridiculous.  The "private" business is paid for with taxpayer money.  The bill would make sure that those taxpayer funds were being used properly.  About 70 percent of nursing home residents are covered through Medicaid or Medicare

Sen. Shane Martin, R-Pauline, argued the government shouldn’t force a private business to do anything. Really?  The government is not forcing nursing homes to put video cameras in resident’s rooms. Rather, this bill allows residents and their families to put video cameras in their own rooms at their own cost.  The bill does not force businesses to do anything.

The third excuse is that a resident can choose another facility that allows video cameras.  Martin argued "There’s nothing barring the facilities from allowing it now, so if one nursing home denies the request, the family should just choose another, he said.  But Sen. Thomas Alexander said that’s often not possible, as families are limited in their choices."In my area, all the beds stay full. It’s not as simple as taking a loved one from one facility to another," said Alexander, R-Walhalla. Additionally, Martin assumes there is some facility that would allow it.  However, without this bill, no SC facility would allow video cameras voluntarily.

The fourth ridiculous excuse was that this bill would somehow discriminate against poor people on Medicaid.  Sen. Floyd Nicholson, D-Greenwood, questioned whether making it an option funded by families essentially discriminated against residents whose stay is covered by Medicaid, because they couldn’t afford the cost.  So Nicholson would rather discriminate against residents and families who can afford to place a video camera?  The cost of a placing a video camera is nominal.

Sen. Brad Hutto, D-Orangeburg, said he wishes the nursing home industry didn’t take such offense to the bill."They are concerned this is a ploy to catch them doing bad things to patients. That’s not what this is about. This is empowering families to take care of loved ones," he said. However, he added, "Generally, people with cameras on them behave better."

Its sponsor, Sen. Paul Thurmond, said families should have the opportunity to check in on loved ones to ensure they’re not being abused or neglected.

Charleston’s Post and Courier reported new legislation that Paul Thurmond is attempting to pass that will protect vulnerable nursing home residents from abuse and neglect; save taxpayers’  money by preventing injuries and incidents; and decrease insurance payouts by preventing and deterring neglect and negligence in long term care facilities.  Sen. Paul Thurmond, R-Charleston, said he introduced the bill after learning of similar legislation in Oklahoma.

Thanks to the courage and leadership of Thurmond, a Senate subcommittee advanced the bill that would allow for residents to place a video camera in their rooms. The bill – Electronic Monitoring of a Resident’s Room in a Long-Term Care Facility – would require facilities to make accommodations to comply with a resident’s request and penalties for staffers who tamper with the camera or equipment. The new legislation would allow electronic monitors to be placed in private rooms to record the care and treatment being provided and paid for by taxpayers. The bill has been changed since its introduction to address privacy concerns. For example, it would require a resident or the family to post a notice informing those about to enter the room that it is being monitored.

If Thurmond’s bill becomes law, a patient alleging abuse – or a family member with power of attorney who suspects as much – would have the ability to place a camera in a room. And the facility cannot stop them from doing so.

“It really puts a lot of power in their hands to be able to have oversight of their care in a way that family can be involved without being there,” Thurmond said. “The patient can interact where it’s positioned and what it’s going to capture.”

Coretta Bedsole, associate state director for advocacy for the AARP, said the organization is supportive of consumer-driven measures and of the modifications that were made to the bill that addressed privacy concerns. “It would give loved ones the opportunity to monitor what’s going on in the lives of their loved ones,” Bedsole said. “I think really it’s about consumer protection. Anything that we do in any setting really needs to be on what’s best for the resident of the facility.”