JFActivist

What Happened to Ricky

Excerpts from The Wall Street Journal (May 31):

What Happened to Ricky
In the '50s, disabled children often disappeared into state institutions. Now, one family seeks its lost son.

By Claire Ansberry

PORTLAND, Ore. -- Tom and Betty West committed their mentally disabled son to a state institution. His name was Richard, and he was three years old. It was 1959. The massive complex was remote and family ties not encouraged. The state eventually moved Richard to a different facility without informing the Wests of the location. Four decades passed without a family member laying eyes on Richard...

...The Wests belong to a generation of parents who decades ago relinquished their disabled children, usually at the urging of physicians or other authorities. From the 1930s into the 1960s, tens of thousands of these children entered state facilities, which offered services that local communities lacked. Many never saw their families again....

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

Landmark Settlement for Individuals with Brain Injuries

From the Boston Herald (June 2):

Settlement would move some brain-injured from nursing homes

By Associated Press

BOSTON - As many as 2,000 Massachusetts nursing home residents with brain injuries would gradually move into homes in the community under a proposed settlement of a lawsuit that alleges the state leaves too many people trapped in institutions in violation of federal law.

Advocates said Monday’s settlement could mean greater freedom for the estimated one-quarter of the state’s 8,000 brain-injured residents of nursing homes and rehabilitation centers who are capable of living on their own or in a group, with some nursing assistance...

...Read more.

Urge Congress to Increase Funding for Family Support

***ACTION ALERT***

Submitted by: Association of University Centers on Disabilities (AUCD)

Beginning right now and throughout the summer, Congress will be deciding how much money to provide federal programs for the coming year.  There are several key programs that provide family support but they are seriously underfunded.  Your help is needed in educating Members of Congress about why it is important to provide more money for family support programs.

Action Needed:
Contact members of the House and Senate Labor-HHS-Education Appropriations Subcommittees.  Urge them to provide additional funding for family support programs at the levels recommended below, which are consistent with recommendations from the Consortium for Citizens with Disabilities (CCD).

Members of Senate Labor-HHS-Education Appropriations Subcommittee

Members of House Labor-HHS-Education Appropriations Subcommittee

You can contact members of Congress by calling the Capitol switchboard: (202) 224-3124.

You can also click here to send your members of Congress a prepared e-mail message through the AUCD Action Center.   

Background:
While over 80% of all long-term services and supports are delivered informally, little funding is provided to support family and other informal caregivers.  Investing in family support is fiscally wise.  The economic value of informal caregiving is over $350 billion a year.  American businesses lose between $17.1 and $33.6 billion annually in lost productivity costs due to family members providing informal supports.  Respite and other supports contribute to the well-being of caregivers and can reduce undesirable, costly placements in nursing homes and other institutions.  Funding for programs that provide family support has not kept pace with growing demands and pressures on families.  Three important programs are: 

1. National Family Caregiver Support Program
   The National Family Caregiver Support Program (NFCSP) is authorized under Older Americans Act.  It is intended to provide a variety of supports to caregivers of older individuals and older caregivers of children and adults with disabilities.  Funding for the NFCSP has not kept pace with an aging population and actually received a slight cut last year.  It is currently funded at $153.4 million; it is recommended that Congress increase funding to $250 million for FY 09.
   
   
   
2. Lifespan Respite Care Act
   The Lifespan Respite Care Act was signed into law on December 21, 2006.  It is intended to provide competitive grants to assist states in developing statewide respite systems to make quality respite available to family caregivers regardless of age or disability.  However, it has not yet received any funding to be implemented. It is recommended that Congress provide funding at the full authorization level of $53.3 million for FY 09.
   
   
   
3. Family Support Program
   Title II of the Developmental Disabilities Act authorizes the Family Support Program to promote and strengthen systems of family support services to families with relatives with developmental disabilities.  Currently, only 21 states receive grants and funding is provided through a different section of the Act.  It is recommended that funding for family support be increased from approximately $7.2 million to $17 million for FY09 to allow every state and US territory to receive grants.  It is also recommended that this funding be provided through Title II without negatively impacting funding for other initiatives within Projects of National Significance.                  

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

ADAPT's Reissued Ten Best - Ten Worst States for Home and Community Services

From ADAPT:

2008  Survey and Rankings

The ADAPT Community
1640A East 2nd St
Austin, Texas  78702
512/442-0252
adapt@adapt.org
www.adapt.org
         
                                TEN BEST – TEN WORST
           HOME AND COMMUNITY SERVICES AND SUPPORTS
                           (Listed in alphabetical order, not in ranked order)


TEN BEST STATES                                          HONORABLE MENTION

Alaska                                                                       Kansas
Colorado                                                                   New York
Maine                                                                       Washington            
Massachusetts                                                         Wisconsin
Michigan                                                                  Wyoming
Minnesota
New Hampshire
Oregon
Rhode Island
Vermont               


TEN WORST STATES                                  DISHONORABLE MENTION

Arkansas                                                             Alabama
Georgia                                                               District of Columbia
Florida                                                                 New Jersey
Illinois                                                                 Ohio
Indiana                                                                Pennsylvania
Louisiana
Mississippi
North Dakota
Tennessee
Texas
 

SOURCES and CRITERIA for Selection of ADAPT’s
10 BEST – 10 WORST States in the Provision of
Home and Community Services

 
                                   SOURCES of INFORMATION


1) Kaiser Commission on Medicaid and the Uninsured, “Medicaid Home and Community-Based Service Programs: Data Update” – December 2007

2) University of Minnesota – Research and Training Center on Community Living – Institute on Community Integration/UCEDD, “Residential Services for Persons with Developmental Disabilities:
Status and Trends Through 2006” – Published August 2007

3) Thomson Healthcare, “Medicaid Long-Term Care Expenditures in FY 2006,” “Medicaid HCBS Waiver Expenditures, FY2001 –FY2006”

4) The ADAPT Community, “ADAPT Community Home and Community Services State Survey 2008 – Advocate Assessment”
 

                                  
                                                CRITERIA

1.  Rank based on % of Institution Spending versus Community Spending

2.  Nursing Facility Services Spending Per Capita

3.  Home and Community Based Services (HCBS) Spending Per Capita

4.  Number of “Intermediate Care Facilities for the Mentally Retarded”
(ICF-MR) with 16 or more beds

5.  % of Population with Developmental Disabilities Served in ICF-MR

6.  ICF-MR Per Capita Spending

7.  # of People with Developmental Disabilities in Nursing Facilities

8.  HCBS + Personal Care Option + Home Health Total Per Capita Spending

9.  Wages paid to community attendants

10. # of Large Publicly Funded Institutions, and Their Population

11.  ADAPT Stakeholder Survey

                             ****************************
The ADAPT Community listing of the 10 Best – 10 Worst States for home and community services takes the above sources and criteria and evaluates the states for how well they rank against other states in the country.  Though they are not ranked numerically (1,2,3…) the ADAPT list gives a good picture of where they are today. 

No state is ideal.  No state is all bad. This is simply a current snapshot using information that is available through public sources.

For more information contact:
The ADAPT Community                                    bob.adapt@sbcglobal.net                                                             
April 2008

Options Limited for Aging Caregivers and Their Adult Children with Disabilities

From The Wall Street Journal (April 29):

When Crisis Hits the Disabled
Limited Options for Support and Housing
Exist for Aging Caregivers and Their Children

By CLARE ANSBERRY

Seventy-nine year old Anna Dromgoole arrived at the Plano Specialty Hospital a month ago with severe wounds on her legs. Her 41-year-old son, Kent, who has Downs Syndrome, was at her side.

Ms. Dromgoole refused to be admitted unless Mr. Dromgoole could stay with her. She, like thousands of other aging caregivers across the country, had no place for her developmentally disabled child to go. When crisis hits, they find themselves at the mercy of strangers...

...Read more.

Florida Nursing Home Residents Sue for At-Home Services

From the St. Petersburg Times (March 31):

Nursing home residents sue for at-home care
By Stephen Nohlgren

Since a stroke four years ago, 66-year-old Bud Lee can't lift himself out of bed or take himself to the bathroom. He would like to regain a bit of his old independence.

John Boyd, 50, has been paralyzed since 14. He would like an apartment of his own and a job, like when he answered customer service phones for Red Lobster a few years back.

Instead, both men live in nursing homes, a frequent situation when Florida Medicaid pays the bills.

That may change.

Lee, Boyd and five other nursing home residents backed by the AARP Foundation have filed a class-action lawsuit against the state of Florida under the Americans with Disabilities Act, citing a 1999 court ruling that helped spring mentally ill people from big, impersonal hospitals...

...Read more.

CMS Proposed Rule Could Mean Thousands More Get Community-Based Supports

From the Centers for Medicare and Medicaid Services:

For Immediate Release:    
Monday, March 31, 2008
Contact:    
CMS Office of Public Affairs
202-690-6145

THOUSANDS MORE MEDICAID ENROLLEES COULD GET HOME AND COMMUNITY-BASED CARE UNDER NEW RULE
DRA GIVES STATES NEW OPTIONS FOR CARE

Thousands of Medicaid beneficiaries who were previously limited to receiving care in an institutional setting may now be given the option to receive that care in their homes and communities, under a proposed rule  published today by the Centers for Medicare & Medicaid Services (CMS).

The Deficit Reduction Act of 2005 (DRA) gave states a new option to provide home-and-community based services (HCBS) to Medicaid beneficiaries without applying for a demonstration waiver.  The proposed rule provides guidance to states on how to implement this provision of the DRA.

Under this option, states will now be able to set their own eligibility or needs-based criteria for providing HCBS.  Previously, to qualify for assistance with personal care, home health care or other services in the home or community setting, beneficiaries were required to be at imminent risk of institutionalization.  The DRA provision eliminates this requirement and allows states to cover Medicaid recipients who have incomes no greater than 150 percent of the federal poverty level, or $15,600 per individual in 2008, and who satisfy the needs-based criteria.

“Thousands more Medicaid beneficiaries may now be able to opt for needed long-term support services in their homes rather than institutions,” said CMS Acting Administrator Kerry Weems. “Breaking the historic link between long-term care and institutions will level the playing field and give beneficiaries new choices for how they receive care.”

The proposed rule emphasizes “person centered” care, giving individuals an active role in developing their care plans, and the “self-direction” option in which states can allow individuals to take charge of their own services.  The services states may make available under this benefit include case management, homemaker, home health aide, personal care, adult day health, habilitation, and respite care.  The DRA also allows states to provide special services to individuals with chronic mental illness, including day treatment or other partial hospitalization, psychosocial rehabilitation, and clinic services.

Under the proposed rule, states would no longer have to apply for a waiver to provide HCBS to Medicaid beneficiaries.  Under the DRA, states only need an approved state plan amendment (SPA) satisfying the DRA criteria.  Once approved by CMS, the SPA does not need to be renewed nor is it subject to some of the same requirements of waivers such as budget neutrality.

Since the DRA made the HCBS option available beginning in January 2007, CMS has provided technical assistance to states wishing to move forward prior to publication of the proposed rule.  One state, Iowa , has since been granted an HCBS SPA.  Three additional states, Colorado , Nevada , and Georgia , have requests pending under CMS review.

“We anticipate states will be eager to take advantage of this new flexibility,” Weems said. “The home and community-based services option is a win/win opportunity, giving beneficiaries more control over their care and allowing states to spend Medicaid resources more efficiently.”

The proposed rule will be published in the Federal Register on April 4, 2008, and will have a public comment period through June 3, 2008.  Go to http://www.cms.hhs.gov/MedicaidGenInfo/Downloads/CMS2249P.pdf to view the complete proposed rule.