JFActivist

Parents Fight for "Right to Life" for Daughter w/ Tay-Sachs

From the BBC (July 1):

Parents fight for 'right to life'

A couple say they face a legal battle with a hospital to keep alive their six-year-old daughter in future.

Amber Hartland, from Cwmbran, Torfaen, has an incurable brain disorder and needs intensive care treatment in Cardiff when she gets chest infections...

...Last Friday Mrs Hartland and her husband Nick were told doctors wanted to withdraw the option of her being put in intensive care and given life-saving procedures in future.

This is what the courts would be asked to decide upon...

...Read the entire article.

 

Monetary Sanctions for Nursing Home "Deficiencies" Too Low to Create Change

Valueless Lives of Elderly and Disabled in Nursing Homes
Information Bulletin #   (5/08)

Federal monetary sanctions and fines against nursing facilities that fail to comply with federal minimal standards of care are abysmally low, reflecting how little value or worth elderly and disabled persons are to the Department of Health and Social Services' Centers for Medicare & Medicaid Services, the federal agency that is supposed to punish nursing facilities for the injuries they cause residents.

In a recent report, the Center for Medicare Advocacy reviewed 85 of the 2007 HHS enforcement decisions, and the monetary fines imposed against nursing facilities that had failed to comply with the federal standards that are supposed to ensure proper care and protection to people in nursing homes. Even though CMS could terminate the nursing facility's Medicaid payments, deny payment for new admissions or a combination of penalties, nearly all the deficiencies resulted in only small monetary
fines.

These administrative decisions/cases involved extremely serious failures/deficiencies: deaths, over medications, amputation of limbs, development of avoidable pressure sores, elopements, failures to give prescribed medications, and many other injuries.  When HHS finds such violations, it gives the nursing facilities an "opportunity to correct" the deficiency.  It's important to understand that money penalties are imposed NOT for the deficiency - the death, the amputation, etc.- but for a nursing facility's failure to correct the deficiency.

Fines, penalties and sanctions are imposed only if the nursing facility does not achieve substantial compliance with the standards within a given time period.  That must be a great relief to the dead person, the person in pain with the avoidable pressure sure or the person who was over
medicated.  Also, the dollar amount for serious deficiencies is only $3,050 -$10,000 per day.  That surely must really frighten nursing facilities that receive Medicaid reimbursements, depending on your state, between $40,000 - $65,000 per year per person. If a nursing facility had 100 Medicaid recipients @ $50,000 per year, the following fines/penalties would not have much of an impact on the profits.

Here are a few of the deficiencies and the "penalties":

• Failure to provider CPR to resident who then died - $53,200 penalty [resident in cardiac distress, who was not transferred to the hospital or given emergency treatment, including CPR.]
• Strangulation death on bed rail - $4,050 penalty [88 year old resident who had fallen numerous times from her bed, found with her neck wedged between the side rail and the mattress.]
• Leg amputation following failure to follow doctors' treatment orders - $7,500 penalty [resident admitted for short-term rehabilitation following surgery for a fractured ankle.  Nursing facility did not bring resident for follow-up visit and subsequently failed to monitor for infection and treatment, including antibiotics.  Resident's leg had to be amputated.]
• Elopement death - $64,050 penalty [resident with history of elopement found dead a week later.  Nursing facility failed to implement care plan that required monitoring every two hours.  Nurse falsified report, counting resident present, even though she did not see resident.]
• No pain medication for three months - $7,500 penalty [ Resident, who cried out when she was given care and stopped crying when care was completed, was not given pain medications.  Resident not given pain medication for three months, despite doctor's order that pain medication be administered
  "as needed." ]
• Sexual assault of resident by aide and staff failure to report sexual assault - $12,600 penalty [resident sexually abused, reported it, but next day the same aide was assigned to take care of resident.]
• Choking death of one resident and other residents' dehydration during heat wave - $80,000 [resident whose care plan required he be fed, fed himself, choked and died.  Same nursing facility failed to provide residents with necessary care and services during heat wave, resulting in residents' suffering from dehydration.]
• Failure to monitor blood sugar levels, leading to re-hospitalization with hypoglycemia four days after admission to nursing facility - $38,700 penalty.
• Ten consecutive overdoses of morphine and other medication errors -$178,150 penalty.

The full report and many other case descriptions can be found at www.medicareadvocacy.org/SNF_08_05.13.DABNursingHomeDecisions.pdf

Elderly and Disability Advocates:

These incidents are not even the tip of the iceberg.  Advocates who visit nursing facilities regularly hear and see regularly many, many other "deficiencies."  Maybe it's time we publicly point out these violations in the press.

The Nursing Home Reform movement apparently believes that more money to nursing facilities will improve these institutions, despite the past 20 years of increased Medicaid reimbursements.  Does not the continuation of these abuses demonstrate that institutions cannot and will not provide the care that elderly and disabled people deserve?

It's obviously beyond the CMS political will to shut down these nursing facilities that are literally killing some elderly and disabled persons. 

CMS (and Congress) has known about these abuses for years, but continues to impose these paltry money penalties that do not amount to "chump" change.  What about enlisting private lawyers to bring real damage actions against these nursing facilities?  Although there have been some such litigation, the number of cases has been relatively minimal.  Nursing homes are quite worried that such litigation will increase, and that's why the nursing home industry in a number of states have tried to prevent such
litigation.

~Steve Gold, The Disability Odyssey continues

Report: Serious Deficiencies in Nursing Homes Often Missed

From The New York Times (May 15):

Serious Deficiencies in Nursing Homes Are Often Missed, Report Says
By ROBERT PEAR

WASHINGTON — Nursing home inspectors routinely overlook or minimize problems that pose a serious, immediate threat to patients, Congressional investigators say in a new report.

In the report, to be issued on Thursday, the investigators, from the Government Accountability Office, say they have found widespread “understatement of deficiencies,” including malnutrition, severe bedsores, overuse of prescription medications and abuse of nursing home residents...

...Read more (free registration may be required)

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Read the GAO report:

Nursing Homes:  Federal Monitoring Surveys Demonstrate Continued Understatement of Serious Care Problems and CMS Oversight Weaknesses.  GAO-08-517, May 9.

• Full report
• Highlights

Under 30 in a Nursing Home

The following article in The New York Times highlights the number of children and young adults living in nursing homes and other institutions whose family feel daunted by the prospect of finding them the most suitable location for care. The article reports that there are roughly 8,000 such people under the age of 30 living in nursing homes today.

The author spends little time exploring home and community-based alternatives to institutional settings, but instead focuses on his perception that the health care system "has yet to develop institutions for the young and 'medically fragile.'"

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From The New York Times (May 14):

For the Disabled, Age 18 Brings Difficult Choices
By MARC SANTORA

Outside Sam Stabiner’s room pumps the steady drone of ventilators, giving life to his neighbors breath by breath. Most are in their 80s and 90s, in the twilight of their years.

But Mr. Stabiner’s parents never imagined they would have to visit him in a place like this. On the eve of his 21st birthday, he is living in a Manhattan nursing home.

The Stabiners’ predicament, however, is far from unique. 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...

...Read more (free registration may be required).


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TAKE ACTION:

Not satisfied with the reality of these segregated lives? TAKE ACTION!

For decades, people with disabilities, both old and young, have wanted alternatives to nursing homes and other institutions when they need long term services. Our long term care system has a heavy institutional bias. Every state that receives Medicaid MUST provide nursing home services, but community based services are optional. Sixty five percent of Medicaid long term care dollars pay for institutional services, while the remaining 25% must cover all the community based waivers, optional programs, etc.

Families are in crisis. When support services are needed there are no real choices in the community. HELP TO CHANGE THIS!

The Community Choice Act (H.R. 1621, S.799) would create equal access to home and community-based services for those eligible for nursing homes.

Since ADAPT's direct actions in D.C. two weeks ago, 15 new House co-sponsors have joined the bill and 1 new co-sponsor in the Senate. Let's keep adding more numbers to both lists!

Please take a minute to urge your Members of Congress to co-sponsor this crucial piece of legislation by clicking on the links below.

• House Action Alert
• Senate Action Alert

Report Estimates 1 in 12 Teens Experienced Major Depression in Last Year

Press Release from SAMHSA:

Date: 5/13/2008
Media Contact: SAMHSA Press Office
Telephone: 240-276-2130

New Nationwide Report Estimates One in Every 12 Adolescents Experienced Major Depression in the Past Year
Survey reveals adolescent females are twice as likely as adolescent males to suffer a major depressive episode

About 2.1 million teens aged 12 to 17 experienced a major depressive episode in the past year, according to a new nationwide report by the Substance Abuse and Mental Health Services Administration. For almost half of the teens, depression drastically reduced their abilities to deal with aspects of their daily lives, the report said.

Overall, 8.5 percent of adolescents, the equivalent of one in every 12, experienced a major depressive episode, but there were striking differences by gender, with 12.7 percent of females and 4.6 percent of males reporting the conditions.

“Fortunately, depression responds very well to early intervention and treatment,” said SAMHSA Administrator Terry Cline, Ph.D.  “Parents concerned about their child’s mental health should seek help with the same urgency as with any other medical condition. Appropriate mental health care can help their child recover and thrive.”

The report defines a major depressive episode as a period of two weeks or longer of depressed mood or loss of interest or pleasure, and at least four other symptoms reflecting a change in functioning (for example, problems with sleep, energy, concentration and self-image). This is the definition established by the Diagnostic and Statistical Manual of Mental Disorders (DSM-IV) of the American Psychiatric Association.

Major Depressive Episode among Youths Aged 12 to 17 in the United States of America:  2006 also reveals the often devastating effect these major depressive episodes can have on adolescents.  Nearly half of adolescents experiencing major depression (48.3 percent) report that it severely impaired their ability to function in at least one of four major areas of their everyday lives (home life, school/work, family relationships, and social life).  Adolescents reporting the most severe impairment reported that they were unable to carry out normal activities on an average of 58.4 days in the past year.

The report is based on combined data from the 2004 to 2006 National Surveys on Drug Use and Health (NSDUH) involving responses from 67,706 people aged 12 to 17 throughout the United States. The survey is based on a scientific random sample of households throughout the United States, and professional field representatives personally visit each household to conduct the survey.

The full report is available on the Web.

For related publications and information, visit http://www.samhsa.gov/.

~SAMHSA is a public health agency within the Department of Health and Human Services. The agency is responsible for improving the accountability, capacity and effectiveness of the nation's substance abuse prevention, addictions treatment, and mental health services delivery system.

Patient Privacy Coalition Letter to Congress Includes Disability Accessibility Principle

AAPD recently signed on to a letter sent to all Members of Congress by the Patient Privacy Rights Organization that urged privacy provisions in any legislative measures supporting or mandating electronic prescribing ("E-Rx").  The letter asked such privacy measures to include a principle that would ensure prescription technology allows those with disabilities to be able to use e-prescribing tools efficiently and effectively. The American Council of the Blind (ACB) also signed on to the letter as well as numerous other groups including the American Civil Liberties Union, Consumer Action, the Liberty Coalition, and others.

Read the letter.

For more information, please contact Jenifer Simpson.

Vermont Prosthetic Parity Bill Signed

From the Barre-Montpelier Times Argus (April 24):

Prosthetic parity bill signed

By Dave Gram

MONTPELIER — When Eileen Casey's bone cancer forced her to have a leg amputated below the knee, she was just getting ready to switch from a temporary to a permanent prosthetic limb when her health insurer told her she had hit her lifetime coverage limit of $10,000.

"I was absolutely heartbroken and devastated to discover that just having the temporary was leaving me with no coverage for the rest of my life," she said.

"It was shocking to find out I was going to have to take out a loan to buy myself a leg so I could keep working and living independently." At the bank, Casey said she "burst out crying when they asked me what the loan was for." ...

...Read more.

HHS Federal Advisory Group Eliminates Disability Accessibility in Health IT Recommendations

AAPD sent a letter of alarm recently to the U.S. Secretary of Health and Human Services, Michael Leavitt, about recent action taken by the American Health Information Community (AHIC), a taxpayer-funded and supported governmental advisory panel to HHS.  AHIC struck out two accessibility recommendations affecting persons with disabilities that had been made by an AHIC work group on consumer empowerment, which spends most of its time dealing with issues related to personal health records.

The recommendations eliminated by AHIC said that HHS should:

• "coordinate to ensure that Personal Health Records (PHRs) sponsored by the federal government are consistent with accessibility standards found in the Rehabilitation Act;" and
• "HHS should develop and accommodate to technological applications that can be used by persons with disabilities...."

AAPD recommended that the Secretary reinstate these two recommendations as we believe there may be excessive costs to retrofit in the future to ensure persons with disabilities have accessibility to and usability of electronic health records if these concerns are not addressed now.

Read a related news story.

Read the letter that AAPD sent to HHS.

TAKE ACTION: Send your own letter to Secretary Leavitt, if you are concerned about accessibility of health records for persons with disabilities. For further information or to comment, please contact Jenifer Simpson.

Lawsuit Charges Veterans Affairs With Failure to Prevent Suicides

From The Associated Press (April 20):

Lawsuit: Veterans Affairs has failed to prevent suicides
By PAUL ELIAS

SAN FRANCISCO (AP) — The U.S. Department of Veterans Affairs isn't doing enough to prevent suicide and provide adequate medical care for Americans who have served in the armed forces, a class-action lawsuit that goes to trial this week charges.

The lawsuit, filed in July by two nonprofit groups representing military veterans, accuses the agency of inadequately addressing a "rising tide" of mental health problems, especially post-traumatic stress disorder...

...Read more.

Settlement in Class Action Lawsuit about Health Care Access

From The Daily Review (April 19):

Sutter Health settles class action lawsuit
Agreement to affect 28 medical centers across Northern California

By Malaika Fraley

BERKELEY — Sutter Health will greatly improve accessibility and patient care for people with disabilities at its hospitals and other health care facilities under a settlement to a class-action lawsuit announced Friday.

The agreement calls for sweeping changes in hospital policies, architecture, equipment, staff and contractor training and outreach at 28 Sutter Health hospitals located across Northern California. The changes are tailored for patients with mobility, visual, hearing and speech disabilities...

...Read more.