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…)

Peoria Journal Star columnist Terry Bibo writes that the state of Illinois has spent $10 million over the past seven years to remodel and maintain a vacant institution that once housed people with developmental disabilities. And yet, even as the institution sits furnished and empty, the state keeps cutting back on its already meager funding for services for people with disabilities. An excerpt:

Thirty thousand people may lose their services from the Illinois Department of Human Services Division of Developmental Disabilities thanks to budget cuts. That doesn’t count the thousands who are on waiting lists.

Illinois is already 50th among the 50 states when it comes to reimbursing some of these caregivers for services. Now the fees paid to care for each person will be pretty much cut in half — and the state won’t pay its bills for at least three months. The whole system is in meltdown.

… It cost $5.4 million to reconstruct what is now Lincoln Estates. It cost $4.5 million to maintain it. That’s the capital budget, not operating budget. So there is $10 million for empty buildings, but not $10 million for needy people.

(Peoria Journal Star photo)

By Emily Ramshaw in the Dallas Morning News, AP/Houston Chronicle:

Disability advocates say medically fragile Texas children are being forced into institutions when they reach adulthood rather than continuing to receive home care, despite a state provision that was designed to keep them in their homes.

Advocates say state officials are interpreting the provision so narrowly that almost no one can qualify. Since the measure went into effect two years ago, the only people who have qualified are those who sued to get funding.

In one case, a young man died within a day of moving to a nursing home. His longtime doctor had warned the state that he was too fragile to live in an institution. The cause of death is still under investigation.

(more…)

Max Pemberton writes in the [UK] Telegraph that the six million people in Britain who take care of people with disabilities save taxpayers £87 billion a year – more than the total budget of the National Health Services (NHS). But a recent survey revealed that three out of four caregivers found their role so stressful that it had led them to the “breaking point”.

The awful thing was that the single most common reason cited for this was not the relentless emotional strain of caring, or the arduous physical challenges of the work, but the bureaucracy required to get NHS care. In particular, it was the complex, obtuse application procedures for respite care and benefits that ground people down to the point where they felt they could cope no longer.

Given that without carers, the health service would be crippled overnight, it seems counter-intuitive to make the very things that are intended to help them so difficult to access … At present they are roundly taken for granted and ignored until they collapse. As a resource they are precious and must be nurtured. Who cares for the carers?

Max Pemberton is the author of “Trust Me, I’m a (Junior) Doctor.”

The tragic double suicide of a British couple after the death of their disabled son has sparked a passionate national discussion about the availability of supports for the more than six million people in the UK who provide informal or unpaid care for relatives and friends.

Neil and Kazumi Puttick had given up their jobs to care for their five-year-old son Sam, who had been paralyzed in a car accident four years ago. The family had reportedly been coping well until Sam contracted pneumococcal meningitis and died unexpectedly.

Less than 48 hours after his death, the couple drove 140 miles to the southwest coast of England and leaped off the cliffs at Beachy Head, holding Sam’s body in one backpack and his toys in another.

According to experts, a devastating combination of grief, the sudden loss of identity, and the isolation caused by the withdrawal of health and social services after the person dies or moves into a home, can leave carers particularly vulnerable to an emotional breakdown and ill-health.

News coverage has been extensive. Following is a sampling.

Love stories: Britain’s army of carers — [UK] Independent

Three out of four unpaid carers have reached the breaking point — [Glasgow] Herald

Death leap pair ‘loving parents’ — BBC

Beachy head suicide couple turn away friends in final hours — [UK] Independent

The smile his parents could not live without — [UK] Daily Mail

The Japanese tradition behind the family suicide — [UK] Telegraph

Bound by love, united in death — Brisbane [Australia] Times

This will put us over the edge on assisted suicide — Dominic Lawson in the [UK] Times

Having a special needs child means life is harder, but it is also much richer — [UK] Sun

Yes, you can survive the death of a child — [UK] Telegraph

(Kazumi, Sam and Neil Puttick, photo from [UK] Independent)

From the New York Times:

A national survey finds that the economic crisis has dealt a heavy blow to the estimated 44 million Americans who care for an aging or disabled relative or spouse.

One in six caregivers surveyed by the National Alliance for Caregiving and Evercare, a division of the UnitedHealth Group,  said they had lost a job during the downturn. Some 21 percent said they had to share housing with family members to save money. At the same time, government and non-profit organizations that usually provide relief are being cut in the downturn.

Teresa Denk, 59, who provides constant care for her 92-year-old father in Rainbow City, AL, said she is unable to work fulltime while caring for her father. The money she could make working part-time would not be enough to pay for home care. Ms. Denk said, “Agencies charge a minimum of $15 an hour … I might be able to earn $8 to $10 an hour.”

See also:

Most carers ‘hit breaking point’ – BBC News

Earlier post here.

From the Los Angeles Times ‘LA Now’ blog:

Three thousand state workers and advocates gathered in downtown Los Angeles yesterday to protest California Gov. Arnold Schwarzenegger’s proposed cuts to the state home-care program.

The state plans to cut wages for state workers from $12.35 to $8 per hour and reduce the number of hours. Parents of children with disabilities said the pay cut would force caregivers out of the profession.

Silvia Alvarado stood outside the state building with her son, Omar, 17, who uses a wheelchair. She said the proposed cuts would force her to quit her job to care for her son, who has spina bifida.  “He’s my job,” she said. “Who’s going to watch him now?”

Earlier posts here, here, and here.