Time magazine carries a portion of “Boy Alone,” an upcoming memoir by journalist Karl Taro Greenfeld about growing up in the shadow of his autistic brother, Noah.

Greenfeld writes here about his family’s attempts to find an acceptable living situation for Noah, whose challenging behaviors have included head-banging, pinching and grabbing others. Greenfeld says the expected surge in the number of autistic adults creates a likelihood that people like his brother “will be a burden to parents, siblings and, eventually, society.” An excerpt:

We are largely unprepared to deal with this crisis. Autism funding and research, so far, have predominantly focused on children. When I have visited autism conferences, there have been exceedingly few research projects devoted to low-functioning adult autistics. It remains difficult for families of adult autistics to find the programs they need, to access those services that are available and even to locate medical professionals and dentists who can handle adult autistics. Too much of the burden rests on the families themselves, who remain in the picture as caregivers, advocates and, too often, the only party with the autistic adult’s best interests in mind.

… Will I always be there for Noah, as my parents have been?

I wish I could say, Yes, definitely, I will be there.

But I honestly don’t know.

Noah Greenfeld was the subject of an earlier trilogy of books by their father, screenwriter Josh Greenfeld: “A Child Called Noah,” “A Place for Noah,” and “A Client Called Noah.”

From the [Portland] Oregonian:

A 47-year-old woman has been sentenced to a year in jail for stealing $5,000 from the bank accounts of the adults with disabilities she had been hired to assist.

Margie Cleo Tisdale was employed by the nonprofit United Cerebral Palsy of Oregon and Southwest Washington. Prosecutors said she stole money from five victims, many of whom had little money to spare in the first place, and spent it on manicures, lattes and her rent.

One witness said Tisdale controlled her bank account and refused to give her money for food shopping, insisting that she eat remaining food in her kitchen that had expired or gone bad.

Tisdale pleaded guilty to 11 counts of criminal mistreatment and identity theft.

(Photo from the [Portland] Oregonian)

Columnist Jane Glenn Haas writes in the Orange County [CA] Register that a new survey reveals caregivers for people with disabilities “are facing escalating financial and emotional hardships that are rarely, if ever, addressed in national debates about funding health care.” Some 44 million Americans are responsible for the care of a spouse or parent.

An excerpt:

A survey conducted by Evercare [a national health care coordination program of UnitedHealthcare] and the [nonprofit] National Alliance for Caregiving concludes 43 percent of caregivers have taken a pay cut or have been forced to work fewer hours as a result of the recession.

Some have taken on additional jobs or are able to work more hours, but almost 50 percent told surveyors they have exhausted their savings and 43 percent have had to borrow money to continue caregiving.

(more…)

AP/Philadelphia Inquirer, WNEP-TV, [Scranton, PA] Times-Tribune:

Two women who were employed by the ARC to care for a woman with intellectual disabilities stand accused of abusing her by tricking her into drinking urine and eating feces in a residential group home in Pennsylvania’s Wyoming County.

Kimberly A. Holzlein, 26, and Jill L. Hillard, 36, were charged with assault, reckless endangerment, neglect of a care dependent person, harassment, disorderly conduct and criminal conspiracy.

Both have been released on $20,000 bail, and both have been fired.

A court affadavit quoted Holzlein as saying “I did these things out of frustration because I had enough.” Hillard denies the charges.

Here are some reviews of HBO’s four-part documentary “The Alzheimer’s Project,” which debuts tomorrow. Maria Shriver is the executive producer.

From Mary McNamara in the Los Angeles Times:

‘The Alzheimer’s Project’ is an ambitious, disturbing, emotionally fraught and carefully optimistic four-part documentary exploring virtually every angle of Alzheimer’s disease that can be explored on television.

From Nancy deWolf Smith in the Wall Street Journal:

Beneath all the excitement … the subliminal message here is: Be afraid, be very afraid. If the guesstimate is accurate and some five million people in the U.S. now have Alzheimer’s, we may be tempted to consider that this is a tiny number compared to those who will die of cancer or of the four other more-likely causes of death in the U.S. But as the series repeatedly reminds us, it is the baby boomers who are now heading for the age — typically starting from the late 70s — when Alzheimer’s is most likely to be diagnosed. Not only families, but society as a whole will have to look after these patients, and it will cost a fortune. Nobody says so quite so bluntly, but wouldn’t it be better to pay now, to fund more research, so that we don’t have to pay for an explosion of sick people later?

See also:

‘The Alzheimer’s Project’: An unflinching look at a brain stealer – New York Daily News

Alzheimer’s series a learning tool for Shriver — San Francisco Chronicle

Maria Shriver turns spotlight on Alzheimer’s — NPR

Earlier posts here and here.

(HBO photo from Los Angeles Times)

International singing sensation

From the [UK] Mirror, [UK] Times, CBS News and elsewhere:

By now, just about everybody has heard about Susan Boyle, the plain Scottish spinster whose extraordinary singing voice dumfounded the judges of a British talent show this week. Videos of her thrilling performance on “Britain’s Got Talent” have gotten more than 18 million views on Youtube, and she is already reportedly in talks with a record label.

But what many may not know is that Boyle, an unemployed church worker who cared for her elderly mother until her death two years ago, has a lifelong history of disability. Boyle says she has learning disabilities, the result of oxygen deprivation at birth, and was bullied in school because she was slow and had frizzy hair.

“The ones who made fun of me are now nice to me,” she told CBS News, “so I may have won them round.” She said she hopes her arresting debut on the TV talent show will remind people not to judge by appearances.

(Photo from the [UK] Times)

See also: It wasn’t singer Susan Boyle who was ugly on ‘Britain’s Got Talent’ so much as our reaction to her — Tanya Gold in the [UK] Guardian

UPDATE: From Deadine Scotland:

[Boyle] says she hopes the show will highlight her disability too.  She said, “I was slightly brain damaged at birth, and I want people like me to see that they shouldn’t let a disability get in the way. I want to raise awareness — I want to turn my disability into ability.”

From the Boston Globe:

Massachusetts officials say reports of fraud, abuse and neglect by personal health care attendants in the state have tripled over the past few years, just as the state’s Medicaid program has significantly increased the amount of money it spends on the workers.

As a result, new concerns are being raised about a state system that requires no training, certification or criminal background checks for attendants, and operates with minimal oversight of low-paid home healthcare workers.

Some lawmakers are calling for changes. A bill has been introduced that would allow people to run a free criminal background check on attendants.