Paying for long-term care

In these tough economic times, who wants to think of one more discretionary expense to add to the monthly budget? But, as this piece in the New York Times discusses, future long-term care costs for an individual could exceed $1 Million!

Long-term care insurance has been around for several decades, yet many people roll the dice as to whether they purchase it or not. Besides the statistics of one's chances of needed expensive nursing home care, the article also looks at the reasons we often choose not to obtain such protection.

While some excuses for not having insurance are incorrect or somewhat inaccurate (e.g, thinking Medicare will pay (which it doesn't), expecting our own savings to be sufficient, and counting on family members to care for us), "there is also a great deal of justified skeptism about the long-term care insurance industy."

On that skeptical side, some insurance companies are looking at raising their premiums by double-digit increases.

Wisconsin's Office of the Commissioner of Insurance (OCI) has a helpful guide on its website. Furthermore, Wisconsin is one of a number of states that offers Long-Term Care Insurance Partnership program to encourage the purchase of long-term care insurance by offering greater asset limits for Medicaid coverage. Search the OCI website for more information on all related topics.

The evolving science of autism spectrum disorder

A recent story in the New York Times describes the ongoing evolution and evaluation of medical and scientific understanding of Asperger's syndrome and similar conditions within the range of autism spectrum disorder.

Here's an excerpt:

If these experts have their way, Asperger’s syndrome and another mild form of autism, pervasive developmental disorder not otherwise specified (P.D.D.-N.O.S. for short), will be folded into a single broad diagnosis, autism spectrum disorder — a category that encompasses autism’s entire range, or spectrum, from high-functioning to profoundly disabling.

“Nobody has been able to show consistent differences between what clinicians diagnose as Asperger’s syndrome and what they diagnose as mild autistic disorder,” said Catherine Lord, director of the Autism and Communication Disorders Centers at the University of Michigan, one of 13 members of a group evaluating autism and other neurodevelopmental disorders for the manual [on psychiatric diagnoses, being revised for publication in 2012].

“Asperger’s means a lot of different things to different people,” Dr. Lord said. “It’s confusing and not terribly useful.”

Taking Asperger’s out of the manual . . .does not mean the term will disappear. “We don’t want to say that no one can ever use this word,” Dr. Lord said, adding: “It’s not an evidence-based term. It may be something people would like to use to describe how they see themselves fitting into the spectrum.”

A beautiful example of a life for others

Eunice Kennedy Shriver died this week; here's the New York Times obituary for her. Most notable in all the tributes was her founding of the Special Olympics (the site is now transformed into a wonderful tribute to her).

In pleasant contrast to the current health care reform fervor, which seems to be motivated by fear and self-interest (frequently exaggeratedly so), Shriver's concern for others, especially those who historically were marginalized because of disability, is a bright example.

We typically think of the Kennedy family as politicians, often with some ideal of public service. Shriver reminded us that we can all undertake public service for the common good.

Story-telling power of scars

New York Times writer Dana Jennings reflects on his many scars--from accidents and surgeries--and concludes that they tell his personal story and give reasons for optimism.

Here's an excerpt:

[F]or all the potential tales of woe that they suggest, scars are also signposts of optimism. If your body is game enough to knit itself back together after a hard physical lesson, to make scar tissue, that means you’re still alive, means you’re on the path toward healing.
. . .

There’s also something talismanic about them. I rub my scars the way other people fret a rabbit’s foot or burnish a lucky penny. Scars feel smooth and dry, the same way the scales of a snake feel smooth and dry.

I find my abdominal scars to be the most profound. They vividly remind me that skilled surgeons unlocked me with their scalpels, took out what had to be taken, sewed me back up and saved my life. It’s almost as if they left their life-giving signatures on my flawed flesh.
. . .

It’s not that I’m proud of my scars — they are what they are, born of accident and necessity — but I’m not embarrassed by them, either. More than anything, I relish the stories they tell. Then again, I’ve always believed in the power of stories, and I certainly believe in the power of scars.

Remembering a champion of a disability theology

Most of us have not heard of Nancy Eiesland, and I had not until I read her obituary in the New York Times. Her theology sounds fascinating and her life sounds amazing. Here are a couple short excerpts from the Times:

By the time of her death at 44 on March 10 [,2009], Ms. Eiesland had come to believe that God was in fact disabled, a view she articulated in her influential 1994 book, “The Disabled God: Toward a Liberatory Theology of Disability.” She pointed to the scene described in Luke 24:36-39 in which the risen Jesus invites his disciples to touch his wounds.

. . .

Ms. Eiesland’s insights added a religious angle to a new consciousness among the disabled that emerged in the 1960s in the fight for access to public facilities later guaranteed by the Americans with Disabilities Act of 1990. The movement progressed into cultural realms as disabled poets, writers and dramatists embraced disability as both cause and identity.

According to her husband, as referenced in the obituary, Ms. Eiesland's death was not caused by her disability.

(Photo by bunnyandcoco; used by permission.)

"Aging in place" may be a choice for some, but not for all

"Aging in place" has come to mean elders living in their homes as long as possible, with the necessary and appropriate accomodations coming to them. Often, this means adapting the physical aspects of the house (e.g., grab bars in bathrooms) and in-home assistance for personal care or health care.

A recent Washington Post story explores the options of aging in place for elders, including the necessity of doing so for some because of the recession.

"One of the unwritten tragedies of the current housing price collapse is that for a host of reasons [e.g., money, job security, depreciated properties], a higher share of older Americans will be 'forced' to age in place, who might otherwise have considered alternative housing arrangements," said Stephen Golant, a gerontologist and geographer who teaches at the University of Florida.

But as a whole, many people may choose to stay in their homes for as long as possible. (Who among us hasn't heard an elderly relative express such a preference, especially over nursing home care.)

The article continues by quoting Peter Bell, executive director of the National Aging in Place Council: "Boomers may be more cognizant of the need to plan ahead because they have had to deal with their parents in a reaction mode."

Furthermore, most of the considerations of home accessability and personal care apply to people with disabilities of any age.

A recent story from the New York Times explains how architectural design, whether original or adapted, can successfully accomodate various levels of ability. As the designer featured in the story said, "[People] are only disabled if they can't do what they want to do. Architecture can eliminate disability by design."

(Photo by kamaru; used by permission.)

A man famous for his amnesia passed away

Last week Henry Gustav Molaison, known to his medical and scientific observers as H.M, died at age 82. At age 27 Molaison was the subject of surgery to treat severe seizures he experienced, but ultimately the surgery left him with amnesia--he could not remember anything beyond selected memories of his pre-surgery life.

Here's a snippet from the New York Times obituary for him:

For the next 55 years, each time he met a friend, each time he ate a meal, each time he walked in the woods, it was as if for the first time.

And for those five decades, he was recognized as the most important patient in the history of brain science. As a participant in hundreds of studies, he helped scientists understand the biology of learning, memory and physical dexterity, as well as the fragile nature of human identity.

From the Times account, it seems that he led a pleasant, if not traditionally fulfilling, life.

In conjunction with noting Mr. Molaison's death, Slate.com offered a brief explanation of amnesia, including this description:

There are two main types of amnesia: retrograde and anterograde. Retrograde means you lose your memories from before the surgery, injury, or whatever incident caused the memory loss. . . . Anterograde means you lose the ability to form new memories but can still recall things from before the inciting event. That was the case with H.M., who could remember scattered childhood memories.

(Photo by erat; used by permission.)

International Day of Persons with Disabilities

December 3 is the United Nation's International Day of Persons with Disabilities. This year's theme is "Convention on the Rights of Persons with Disabilities: Dignity and justice for all of us."

Slate.com offers this incredible photo gallery of persons living with various disabilities--truly a testimony to the power of the human spirit.

(Photo by Dan Kamminga; used by permission.)

New link: Exceptional Parent

Check out the Exceptional Parent website for numerous resources for parents and family members of those with disabilities. I have added the link to the list on the right.

To access articles or information, you need to register, but it is simple and free. In addition, you can see topics covered in the print version of the Exceptional Parent magazine, and you can subscribe or order individual copies.

Video games with a special mission

This story in the Washington Post tells about video simulators that help veterans learn new ways to do old tasks. For example, a veteran with injuries may need to learn to drive with one hand or with adaptive controls. Also, the simulators can help reduce stress as veterans recover from their injuries.

Here's a bit of the story:

Soldiers serving overseas are taught a different set of driving skills than the rest of us: Speed up when driving through overpasses, don't use turn signals and don't stop at intersections. [The] new driving simulator is designed to help bring those instincts back to civilian levels, where the rules of the road take priority.
. . .

[M]odified game controllers are useful for amputees seeking to take part in the pastimes they enjoyed before they lost a limb, as well as for patients who need to rebuild hand strength.

We love our pets... part two

Vets and pets. Veterans who have injuries or disabilities from war are receiving help from service dogs. This piece in the New York Times tells the stories of wounded soldiers and the ways their dogs help improve their physical and mental health. A nice story to honor our country's vets. The story includes a slideshow of photos too.

(Photo by soldiersmediacenter; used by permission.)

Special needs trusts

The Wall Street Journal recently included an article on special needs trusts.

Here's a bit of statistical information from the article:

More than 41 million Americans, or almost 15% of the population age 5 and older,
have some type of disability, according to the 2007 Census survey data. Some 6.2% of children age 5 to 15, or 2.8 million children, have disabilities, the Census Bureau found. And individuals with disabilities are living longer than ever before. That means that many disabled children will outlive the parents who support them.

To address the future needs of such children when they become adults and especially after their parents are gone, parents can prepare documents for the health-related and financial well-being of their children. Parents should consider special needs trusts, sharing information with relatives for the relatives' estate plans which may benefit the child with disabilities, powers of attorney or guardianships, and letters for caregivers. Because the laws regarding special needs trusts are complicated and vary from state to state, it is highly adviseable that parents check with a well-qualified attorney when they wish to explore or pursue such a trust.

One starting point, especially for those with modest-sized estates, is the Wisconsin Pooled and Community Trusts (WisPACT) website. WisPACT is a special needs trust with subaccounts for individual beneficiaries, where each subaccount may be relatively small, but the pooled assets of all the beneficiaries can be professionally invested and managed.

Artistic expression for all

Here's another fascinating arts story. A college woman with Chrohn's disease created this etherial dress (out of wax paper, no less) and won a national competition and award. She uses her art to cope, both mentally and physically, with her disease. The competition was sponsored by the national organization, VSA arts, which offers numerous arts programs for people with disabilities of all types.

New web resource about Medicare

I have been waiting for the right topic to link to the New York Times excellent series on aging, and here it is! Although this article is not as personalized as some others (check out all the topics at the series webpage), it is a good introduction to the new Medicare website for caregivers.

For the over-65 age group, Medicare pays for certain health care services, mostly hospital and doctor care, but does NOT pay for long-term care. As the article quotes Kerry Weems, the acting administrator of the federal Centers for Medicare and Medicaid Services, “We should be shouting from the rooftops, as often as we can, that Medicare does not have a long-term care benefit.” (However, in some cases, Medicare will pay for short-term nursing home care if it follows a hospitalization and is recuperative.)

Only after a person exhausts nearly all financial resources, will the federal Medicaid program (for those with low incomes and low assets) cover nursing home care. Even then, Medicaid is biases to nursing home care and typically does not cover other types of care, such as home health care or assisted living arrangements. The Medicaid rules are complicated and vary somewhat from state to state and differ for single persons and married persons, so consultation with an elder law attorney is strongly advised for any planning or qualification questions.

"We're not letting autism back us into a corner."

In spite of the challenges and frequent (but thankfully, lessening) public misunderstanding or disapproval of associated behavior, families are traveling with their children with autism spectrum disorders. A combination of family coping skills, growing societal awareness, and special travel accomodations creates greater opportunities for the kinds of family vacations that many of us take for granted.

"[W]ith Americans who have disabilities spending $13.6 billion annually on travel in the United States (not including the caregivers and family members who often accompany such individuals) . . . , a small but growing number of tour operators, travel agents and resorts are offering specially geared getaways."

In another story, a family explains how their advanced planning helps a college-bound son with Asperger's syndrome and mental illness. This young man shows great promise in math and science, and his family arrangements give him the extra support he needs to succeed. These stories illustrate how broad inclusion of those with autism spectrum disorder can enhance the lives of those individuals AND the rest of society.

Attorney Barbara S. Hughes, one of the law partners I work with, has created an education power of attorney to assist young adults with disabilities continue to include their parents in their educational decision-making. Here is a short article describing how she developed it, and what it entails. Without such a power of attorney, parents could be excluded from student records or other confidential information and processes after a student reaches the age of majority. An education power of attorney, in similar fashion to a financial power of attorney, adds parental involvement without taking away any of the student's rights or authority.

(Photo by Baston, used by permission.)