Speaking out for People with
 Intellectual and Developmental Disabilities

Widespread Abuse, Neglect and Death in Small Settings Serving People with Intellectual Disabilities - 1997 - 2000

Washington

Washington State Internal Audit, December 2000

An internal, simulated audit of the DSHS Division of Developmental Disabilities (DDD) Community Alternatives Program (CAP) Medicaid Home and Community-based Services (HCBS) Waiver was conducted to identify potential problems when the program receives its next formal audit by the Federal Health Care Financing Administration (HCFA). The audit of the $200 million state program for the developmentally disabled found that the program is so "woefully inadequate" that it poses a threat to the very health and safety of the 10,000 people it serves. Federal officials "would likely conclude that the lack of sufficient personnel and resources creates a situation in which no one is fully aware of what is happening to the average

developmentally disabled client," the report reads. "Case management oversight and monitoring of individuals is so limited as to pose high risks for the individuals being served."

Connecticut

The Connecticut Post, December 22, 2000 Group homes need uniform safety rules

Advocates for the disabled and the State Department of Mental Retardation want to know whether two drownings at Connecticut group homes for people with mental retardation, being similar and occurring close together, indicate a widespread problem. The Department of Mental Retardation will investigate whether the drownings were isolated incidents or part of a pattern of neglect.

Pennsylvania

The Post-Gazette, September 29, 2000

Retarded man drowns in group home; was moved from Western Center in May

The state Department of Public Welfare will launch an investigation into the death, said Jay Pagni, a spokesman. The parents' group that fought the closing of Western Center have tabulated that 23 mentally handicapped people have died from accidents in group homes since they were taken out of Western Center. In 1998, the state decided to close Western Center and move its remaining 380 residents to group homes. State Auditor General Bob Casey Jr. released a 162-page audit in May that criticized state welfare officials for being too lax, too slow, and too ineffective in ensuring the safety of mentally retarded individuals living in group homes.

Maine

Maine Sun Journal, July 23, 2000 Institution gets new lease on life

It is what was best about Pineland, an institution that closed in 1996, that captured the imagination of Owen Wells who heads the Libra Foundation. "I found [Pineland] had spectacular potential," he says. "How better to meet the needs of the disabled people, both physically and mentally, here in Maine?"

Wells pictures a multi-use complex that would draw tenants from all walks of life, including white- and blue-collar businesses, accommodating all handicaps. It would mix business, industry, recreation and education. His picture is set out in blueprints, approved by town and state officials. In December, he signed a purchase agreement for the property. The deal closed last month with Libra paying $200,000 for the campus and $540,000 more for an additional 617 acres abutting the former school. Estimates for the completed project top $40 million.

Rather than running from its controversial past, Wells chose instead to embrace it. "I thought there's nothing to be ashamed of in terms of what Pineland was for many years. It was a wonderful farm operation and it was a wonderful facility," he says. He's even commissioned a book about Pineland's 88 years as an institution. "We set out very early not to abandon the history," Well says. "The history is good. We think it is a history that ought to be acknowledged."

Texas

Austin American-Statesman, May 31, 2000 Hard questions about their care

Between March 1999 and last April, Texas withheld Medicaid money from at least 104 group homes for health and safety violations. Unless there is a complaint, Texas conducts annual surprise inspections of its 11 state schools and 890 group homes with six or more residents. It surveys the providers of more than 200 smaller homes but doesn’t inspect them. Most of the money was withheld from group homes because of minor infractions, but there also were about a dozen more serious cases of abuse and neglect. Texas will have to make a much bigger commitment than it’s making to properly move to a community-based system. Compared to other states, Texas allocates little money for Medicaid, the joint state-federal program that pays for much of the care in any setting. In 1998, Texas was 41rst in total spending. It was 40th in community-care spending and 29th in institutional spending. Texas’ relative stinginess may have contributed to some of the health and safety violations in the state schools and group homes. Many of the incidents were related to a lack of supervision. With an entry-level, direct care job at Austin State School paying just $7.26 an hour — about 50 cents more than the starting salary at McDonald’s — state schools and group homes have trouble attracting and keeping staff.

The American Prospect, Volume 11, No 12, May 8, 2000 Neglect for Sale

Two decades ago, advocates fought to shut down abusive institutions that warehoused the mentally retarded. Today, people with developmental disabilities face a new threat: big business. The American Prospect offers an investigative report by Eyal Press and Jennifer Washburn which looks at ResCare, the nation’s largest for- profit provider of services to people with developmental disabilities.

Pennsylvania

Pennsylvania Auditor General Audit, May 8, 2000

Audit finds serious deficiencies in Ridge administration's oversight of group homes; Casey offers nearly 50 recommendations to improve quality of care

A performance audit of the Commonwealth's oversight of group homes for the mentally retarded in western Pennsylvania has found serious deficiencies that threaten the health and safety of residents, including allegations of abuse and unexpected deaths that were not investigated promptly, direct care workers with criminal backgrounds, and inadequately trained caregivers. In addition to numerous audit findings, Pennsylvania Auditor General Robert P. Casey, Jr.'s audit report offers 47 recommendations to improve the Ridge administration's oversight of group homes and, ultimately, the quality of care provided to group home residents across Pennsylvania. Casey's audit, which examined the Pennsylvania Department of Public Welfare's (DPW) oversight of eight group homes in Allegheny, Beaver, Fayette, Washington, and Westmoreland counties from July 1, 1994, through June 30, 1999, focused on four areas: 1) unexpected deaths and incidents of abuse;

2) staffing issues that affect the health and welfare of group home residents; 3) the quality of service provided to residents; and 4) the physical condition of the group homes.

Pennsylvania

Post-Gazette, April 12, 2000

State closing home for mentally retarded amid continued appeals, protests

State officials said they would begin to shut down Western Center in Canonsburg today, an announcement that prompted last-minute court appeals, protests from parents and the near arrest of a mentally retarded resident after a confrontation with state police. As final preparations were made for the closing, the center operated more like a fortress than a home for the mentally retarded. State police set up a roadblock behind the administrative building yesterday so relatives could not visit residents until they were moved to other facilities.

New Mexico

Albuquerque Journal, April 9, 2000

Troubled Care: Assisted Living Provider Faces Lawsuit, Complaints, Moratorium on New Clients

On April 9, 2000, the Albuquerque Journal reported that ResCare New Mexico, which receives $10 to $12 million a year from the health department to serve its citizens with mental retardation and developmental disabilities, has been hit with a number of allegations of neglect and abuse over the past year. ResCare and its subsidiaries in New Mexico have the highest rate of abuse at about 18 cases of abuse per 100 clients; they are also one of the largest community-based providers. A lawsuit has been filed against ResCare alleging a pattern and practice of abuse and neglect; Arc of New Mexico, which serves as guardian for 153 people, will be moving all of its wards from ResCare homes; The Arc is threatening to file a lawsuit against ResCare; and their is a moratorium on new placements in ResCare programs. New Mexico closed its last state-operated developmental center in 1997, following a lawsuit by Protection and Advocacy.

Washington State

Seattle Times, March 24, 2000

Record verdict against state in abuse case

The state Department of Social and Health Services and two adult family-home operators were ordered by a jury to pay $17.8 million - the largest judgment ever against the state - to three disabled men who say they were molested in the state-licensed facility. The size of the judgment from the Pierce County Superior Court jury shocked officials from the governor's office, DSHS and the Attorney General's Office, the agency that defended the state in the suit. The case has major implications for the future: At least a half-dozen other defendants abused or neglected in long-term care claim they could have been saved from suffering if the state had acted properly. These and other cases were highlighted in a Seattle Times investigation last year that concluded the state did little or nothing to stop abuse or neglect of people in state-licensed care, nor did it often prosecute their abusers.

Oregon

Oregon Statesman Journal, March 12 - March 15, 2000 Fairview’s Legacy

(1) Sunday, March 12, 2000: Day 1: Success and Failure

(a) Safety of disabled in doubt after deaths

(b) Inquiries find neglect a key factor

(c) Fairview history: Dignity wins out over time

(d) High turnover, heavy caseload plague system

(e) Homes that work: Group Home (Shangri-La) rebounds from bleak times

(f) Salem group home fell into dysfunction

(2) Monday, March 13, 2000: Day 2: Comparing Services

(a) 4,000 disabled wait for state aid

(b) Waiting list can seem endless

(c) Fairview's end won't shorten list

(d) Past residents: Change can be difficult

(e) Other states face lawsuits

(f) Views on group homes varied:

- Group home gets praise from mother

- Father hopes to see end to group homes

- Leaving Fairview a mistake: Brothers go without therapy

(g) Individual choice is the main advantage

(3) Tuesday, March 14, 2000: Day 3: Market Shifts

(a) Caregivers fight to remain solvent

(b) Group home boom: Turnover, funding still worrisome

(c) Workers face high demands

(d) Rising costs hit care provider

(e) Experiences of area facilities show challenges facing industry

(f) Low pay fuels staff turnover

(g) Group homes draw complaints

(h) Following Fairview's former employees: Many still caregivers; some rebuild careers

(4) Wednesday, March 15, 2000: Day 4: Looking Ahead

(a) Costs likely to delay developing campus

(b) Plot offers great variety of options

(c) Saving old sites possible

(d) Officials, residents plan for Fairview's future

(e) Fairview land use complicated issue

(f) Mothballing costs remain uncertain

(g) Buildings hard to save or sell

(h) Industry likely to replace farm

Oregon

The Oregonian, January 7, 2000

State inquiry finds neglect of former Fairview resident

A longtime Fairview Training Center resident who died less than two months after moving into a group home in Salem was neglected by his new caregivers, and public officials who learned of the neglect failed to act, according to a state investigation released Thursday. The report from the Office of Client Rights concluded that neglect led to dehydration and malnourishment in the weeks before his death and that a number of public officials and Salem Hospital failed to report his condition or investigate as required by law. Gary Avery’s death has heightened concern about how Fairview’s former residents are faring in a community system plagued by high turnover of workers and relatively low wages. To make sure no similar problems exist, the state’s Development Disability Services Division is reviewing the cases of 260 other former residents who have been moved into the community since May 1998. Fairview is scheduled to close in late-February.

Washington, D.C.

Washington Post, December 1999 - January 2000 Invisible Deaths: The Fatal Neglect of D.C.'s Retarded

(1) System Loses Lives and Trust, December 5, 1999

(2) D.C. Vows Review of Deaths in Homes, December 6, 1999

(3) City to Investigate Deaths, Williams Promises Accountability, December 7, 1999

(4) D.C. Official Suspended in Probe of Homes, Records of Deaths Allegedly Shredded December 9, 1999

(5) Files on Retarded Out of Reach, Advocates Frustrated by Lack of Cooperation from D.C. Superior Court, December 15, 1999

(6) Group Home Administrator Named, December 20, 1999

(7) Group Home Deaths, Washington Post Editorial, January 10, 2000

Note: There has been significant follow-up since the investigative series by The Washington Post (see e.g., “Progress Reported On Care of Retarded,” September 26, 2000; “Group Homes’ Dept to D.C.: $6.8 Million,” October 27, 2000; and “District Settles Claims for Retarded, Agreement Includes $29 Million Fund,” January 23, 2001).

Pennsylvania

A disabled boy, a family in crisis: Mounting pressures may have led a couple to abandon their child, December 1999

Extensive national news media coverage has been available about the crisis facing Dawn and Richard Kelso. The couple has been charged with “abandoning” Steven, their 10-year old son with severe developmental disabilities, at the hospital that had previously served Steven’s extensive health care needs. In December, 1999 Mrs. Kelso retired as a member of the Pennsylvania DD Council; Mr. Kelso is the CEO of a Fortune 500 company.

Washington, D.C.

Washington Post, March - May, 1999

Invisible Lives: D.C.’s Troubled System for the Retarded

(1) Forest Haven is Gone, But the Agony Remains, March 14, 1999

(2) Olympic Achievements Out of Reach, March 14, 1999

(3) Elaborate Structure of Care, March 14, 1999

(4) Residents Languish, Profiteers Flourish, March 15, 1999

(5) Nonprofits Struggle in Current of Greed, March 15, 1999

(6) Death Among the Mentally Retarded, March 15, 1999

(7) U.S. Probes D.C. Group Homes, May 4, 1999 [Internet Access: http://washingtonpost.com/invisible]

Georgia

The Atlanta Constitution Journal, February 20, 1999

In February 1999, three former employees of the Northeast Georgia Community Service Board, which provides social services in a 10-county area, were charged with insurance fraud, theft by deception and conspiracy to commit theft by deception. The three were among nine employees fired on April 1, 1998, after an investigation into allegations of insurance fraud, abuse and neglect involving people with mental retardation. The former employees allegedly sold life insurance policies to the individuals with mental retardation and listed themselves as beneficiaries. Health care officials have said the situation represents one of the worst cases of systemic abuse of clients in Georgia in years. Investigators painted a picture of a community care network apparently operating with almost no oversight. An audit into nine of the 28 community service boards in Georgia was ordered. A preliminary draft reveals a system that lacks oversight and financial accountability and one in which officials manipulate treatment and billing practices to increase Medicaid payments (Source: The Atlanta Journal Constitution, February 20, 1999).

California

San Francisco Chronicle, February, 1997 - August, 1998

Fifty-six (56) articles were released detailing the abuse, neglect and death that plagued California’s system of community-based care for people with mental retardation following the aggressive deinstitutionalization of over 2,000 people. The articles include reference to University peer-reviewed research that finds risk of mortality to be higher in California community-based programs than in the state institutions serving people with mental retardation.

The California mortality studies can be accessed on the Internet at http://www.LifeExpectancy.com, link: articles (comparative mortality studies).

Pennsylvania

The Philadelphia Inquirer, November 1997 Lawsuit without an End

(1) Serving the Retarded: Some are more equal: Those who once endured a notorious institution get a cornucopia of care in Philadelphia. But others, in the arms of their families struggle. And wait. November 2, 1997.

(2) Case studies tell a tale of disparity: Two men from Pennhurst exemplify the strides taken on their behalf. And then there’s Denise Carruth. November 3, 1997.

Lawsuit aids some retarded at all costs: The rights of Pennhurst’s alumni have been well guarded for years. But amid bounty, some feel forsaken. November 4, 1997.