From the New York Times, a feature on 20-year-old Sam Stabiner, who lives among elderly people in a Manhattan nursing home. His parents would like him to live among people his own age, but could not find a place for young adults that could provide appropriate care for Sam’s complex medical needs.

As medical advances have allowed patients who might have died as children to survive into adulthood, the patients are falling into a void in a health care system that has yet to develop institutions for the young and “medically fragile.”

… about 8,000 people under age 30 are among roughly 1.4 million nursing home residents, according to the Centers for Medicare and Medicaid Services.

“This is a problem that has gone largely unrecognized and is only going to grow,” said Dr. Edwin F. Simpser, the chief medical officer at St. Mary’s Healthcare System for Children, the largest provider of intensive rehabilitation and specialized care for severely ill and disabled children in New York.

Attorney says she could die if she’s sent to a nursing home

From the Tulsa [Oklahoma] World:

Lindsey Easton, of Glenpool, Oklahoma, has lived at home most of her life under the care of her mother and 16 hours a day of skilled nursing care provided by a Medicaid program. Easton has infantile onset Pompe’s Disease, and is dependent on a ventilator and feeding tubes.

Easton’s Medicaid coverage ended when she turned 21 in September. She was subsequently denied coverage by Oklahoma’s Advantage Waiver program when it was determined that her care would exceed the program’s cost cap. She is now challenging that decision in court, arguing that the state’s action is a violation of the Americans with Disabilities Act and the Rehabilitation Act.

Easton has led a full and engaging life as an avid reader, Girl Scout and co-valedictorian of her graduating class at Glenpool High School in 2005. … Housing her in a nursing home could lead to medical complications, extended hospitalizations and premature death, according to her legal brief, which cites statements from Easton’s doctor and nursing case manager.

… Laurie Easton, Lindsey’s mother, said she’d never put her daughter in a nursing home and is turning to the courts because she sees no other option. She has had to fight many bureaucratic battles over the years, she said.

“We’re just normal people trying to do the right thing,” she said. “We love our kids.”

From the Nashville Tennessean:

The state of Tennessee ranks last in the nation in funding for nursing home alternatives. As a result, nursing homes have remained virtually the only option for Tennesseans who are elderly or have disabilities and cannot function entirely on their own.

AARP and other advocacy groups have been urging the state for years to provide more balance. This year, Gov. Phil Bredesen has gotten on board, inspired by his 86-year-old mother. While she occasionally needs assistance, she is generally healthy and has no intention of moving from her home, he says.

Bredesen has called for shifting more of the Medicaid dollars Tennessee receives into community and home care.

… As it is now, access to community and home care in Tennessee is fragmented and fraught with red tape — just the wrong note when the patient in question is elderly and needs help. There are individual programs around the state that can show how it should be done, if only the legislature and health-care community will take the challenge.

The governor’s bill should be just the beginning to put this state on the right path — homeward.

Related columns:

• Enable people to live where they thrive
• Change must be more than shift of funds

By Mike Ervin in the Modesto [California] Bee:

The Bush administration is going after poor people who want to get out of nursing homes.

Earlier this month, the Bush administration put forth new restrictions on Medicaid funding … The restrictions are in what the government calls “targeted case management.” This area covers people who use various federal programs and who need help coordinating these services.

One group of Medicaid recipients on which this surely will have a severe negative impact are nursing home residents trying to transition into community living support situations.

… When our government reduces options for poor people stuck in nursing homes, something is seriously wrong in Washington.

From the Boston Globe:

Hundreds of Massachusetts residents with intellectual disabilities will leave nursing homes for more independent settings under a settlement announced by state officials yesterday.

The agreement is part of the resolution of a 10-year-old lawsuit on behalf of 1,600 people, in which disability advocates argued that the nursing home placements violated federal mandates. Many of the plaintiffs had been placed in nursing homes even though they are significantly younger than the senior citizens the facilities are designed to serve, reducing their quality of life and contribution to society, the suit contended.

From the BBC:

The human rights of people with learning disabilities are frequently breached, according to a report from the British Parliament.

The Joint Committee on Human Rights says vulnerable adults are particularly likely to be abused and neglected. The report highlights cases where people in care homes or hospitals were inappropriately restrained with straps or sedated with drugs.

The committee was shocked that even in cases of horrific abuse, staff did not know they were doing wrong.

Improvements are being made, the report says, but a culture based on outdated negative stereotypes needs changing.

“The evidence has shown us that the consequences of a lack of awareness of people’s rights can be devastating,” said Andrew Dismore, chairman of the committee.

By Marie-Therese Connolly in the Washington Post:

In recent years, the nation’s energy and resources have been disproportionately focused on helping people live longer, not better. What we’re now seeing is a generation of frail elderly people who are increasingly alone and more vulnerable than ever to victimization and abuse. Connolly, former coordinator of the Elder Justice and Nursing Home Initiative for the Department of Justice, says the number of abuse cases could reach 5 million per year, with 84 percent unreported.

The problem is magnified by understaffing in nursing homes and sparse federal oversight. Connolly is baffled by the nation’s failure to attend to this issue, particularly considering the impending “tsunami of 77 million aging baby boomers,” and wonders: “Why has there been no public outrage?”

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