By Joseph Shapiro on National Public Radio’s health blog:

A new study finds that nearly one in three American adults serves as a caregiver for an elderly or disabled loved one, performing what amounts to an unpaid half-time job. On average, those caregivers spend about 19 hours a week providing care.

The survey, sponsored by the AARP and the National Alliance for Caregiving,  found that family caregiving exacted a toll in the workplace. The vast majority of caregivers cut their work hours in order to care for a loved one, while others took a less demanding job or leave of absence, turned down a promotion, or quit working altogether.

Most respondents said they did not consider caregiving a hardship and largely reported excellent or very good health. Yet more than half said their responsibilities took time away from family and friends, leaving them feeling isolated.

From the Scranton [PA] Times-Tribune:

A Pennsylvania couple whose daughter has autism have developed an iPhone application that allows a caretaker to keep a digital record of a child’s responses to Applied Behavior Analysis (ABA).

Behavior Tracker Pro streamlines the process of documenting a child’s behavior, making it unnecessary for a caregiver to take notes on paper and then enter the information into a computer. The software has been approved by Apple as an “app” and is available on the iTunes Web site.

Rosa Monckton, whose 14-year-old daughter has Down syndrome, writes in the [UK] Daily Mail that the parents of children with disabilities face a shameful lack of support that is “driving some to breaking point — and even murder.”

Monckton’s new documentary, “When Mother’s Love Is Not Enough,” documents the pressures faced by parents who have children with disabilities, and examines the maze of bureaucracy often prevents families getting the help they need. It will be aired tonight on BBC1

An excerpt:

Our standards of care are dismal, our understanding of what these families need is non-existent and the endless bureaucratic process required to access vital services is mind-boggling.

… That’s got to stop. There has to be less money spent on administration and more on delivery; there needs to be less assessing and more providing.

… Faced with the exhausting round-the-clock care that the parents of disabled children have to provide, I find it all too easy to sympathize with those parents who do reach breaking point, and even with the tiny number who end up taking their child’s life. They are not evil; they just didn’t get the help they needed.

But what both heartens and astonishes me is the ability of the vast majority of parents of disabled children to soldier on, to keep on battling the bureaucracy and fighting for a better future  –  almost any future  –  for their disabled child. And they do so because they love them as only a parent can.

(Rosa Monckton and daughter Domenica, BBC photo)

Sacramento Bee, Los Angeles Times, Oakland Tribune, and elsewhere:

A federal judge on Monday halted a California budget plan to cut or reduce caregiver services for 130,000 seniors and people with disabilities.

U.S. District Judge Claudia Wilken sided with plaintiffs in a class action suit who had argued that the state had not developed a fair method for determining whose services were to be cut.  She issued a temporary injunction against the plan, which was intended to cut $82.1 million from in-home support services, and ordered the state to send out notices reassuring people that their services will not be cut on Nov. 1.

Under the judge’s order, the cuts are halted pending future hearings on the lawsuit filed by groups representing senior citizens, people with disabilities, and members of caregivers’ union. The decision is seen as a victory for disability advocates and unions that represent in-home workers.

Earlier posts here.

From the St. Petersburg Times:

A Florida couple offers advice to caregiving spouses who have reached the breaking point: Get out of “caregiver hell” and move on.

Both Rhonda, 42, and David Travland, 68, were previously married to chronically ill spouses who required extensive medical care. Each opted for divorce, putting their former spouses in nursing homes.

They recently founded the Caregiver Survival Institute and self-published a book, The Tough & Tender Caregiver: A Handbook for the Well Spouse.

David Travland, trained as a clinical psychologist and marriage counselor, says marriage is a contract with boundaries. “Vows have limits,” he says. “If the marriage contract is broken, it needs to be renegotiated.”

… many extended friends and family members have been unable to make peace with the decisions they made. David Travland’s son is still so angry he won’t allow his father to see his only grandson.

But the couple believe their former spouses are now happier, more independent and better off without them.

(St. Petersburg Times photo)

From the New York Times editorial board:

Home care aides, who typically assist elderly and disabled clients, are among the most underpaid and overworked people in the work force, say the editors. Most make less than $10 an hour and are routinely denied overtime pay. As a result, those who rely on caregivers are plagued by low quality care and high turnover, while the public gets the bill for food stamps and other forms of public assistance.

The editors call on the Labor Department to issue a rule that would require home care employers to pay such workers the federal minimum wage or time and a half for overtime. The process of issuing a new rule includes a comment period, generally three months. An excerpt:

Home care aides should not have to wait any longer than that for the fair pay they have been denied for so long.

From the Sacramento Bee:

Parents and disability advocates say they’re worried about the tidal wave of young people with autism who are moving toward adulthood in a society unprepared to meet their needs.

Nationally, it is estimated that some 380,000 people will need extensive adult autism services by 2023, and the pricetag for their care will be in the billions of dollars.

“The financial impact will be huge,” said Dr. Robert Hendren, director of the UC Davis M.I.N.D. Institute. “Many, many people will be living impaired lives, and where are they going to go? Who will take care of them? The challenge will fall largely to family members. As those parents age, they are asking, ‘Who is going to take care of my autistic child after I am gone?’”

See also: Book review of ‘Boy Alone’, by Karl Taro Greenfeld — Paul Collins in the [Portland] Oregonian. An excerpt:

Society makes some strange demands upon autism. We expect a cure: something you rarely hear mentioned next to conditions like Down syndrome or retardation. For them, a sensible emphasis has been placed upon prevention in the future, and respite and amelioration in the present. (more…)