Speaking out for People with
 Intellectual and Developmental Disabilities

Resources


VOR Comments to the Uniform Law Commission on Guardianship

On July 3, 2017, VOR's Issues and Oversight Committee submitted comments to David English, Chair of the Committee on Guardianship, Conservatorship, and Other Protective Arrangements Act for the Uniform Law Commission (ULC) at the The National Conference of Commissioners on Uniform State Laws. VOR's submission included an introductory letter to the commissioner, comments on the draft of the Uniform Law, and VOR's position paper on guardianship and supported decision making.

Click here for the Letter to David English

Click here for the VOR Comments to the Draft Guardianship, Conservatorship, and Other Protective Arrangements Act

Click here for VOR's Position Paper on Supported Decision Making

Widespread Abuse, Neglect and Death in Small Settings Serving People with Intellectual Disabilities - 2003 to 2006

NOTE: LINKS IN SOME OLDER ARTICLES MAY NO LONGER BE ACTIVE

Missouri

St. Louis Dispatch, December 20, 2006

Gov. Blunt orders Department of Mental Health to tell parents of sex offenders

The Post-Dispatch reported Monday that the state was placing people convicted or accused of sex offenses into privately run group homes and state-run facilities with other mentally retarded residents and was not notifying parents of the other residents. Gov. Matt Blunt said Tuesday that he was concerned about the report and that he had ordered the department to notify parents or guardians of others who share the group home with convicted offenders. He also ordered the department to ensure that all convicted offenders are registered with local police, as required by law. But the department will continue to keep secret the placement of people accused of sex offenses but not prosecuted because of their disability, saying state and federal law prohibit them from saying anything. Ron Nicholson, whose son was in a group home with a man accused of molesting a girl, said the new policy continues to put residents at risk. The man in the group home with his son had been determined to be incompetent to stand trial, so parents would not be notified of his presence under the policy. "I think it's atrocious. I think it's indefensible and unconscionable," he said. "They're knowingly and secretly putting known risks into group homes with non-risk individuals." The debate centers on about 50 people, and 31 of those are convicted sex offenders, department spokesman Bob Bax said. In three cases, the department discovered this week that it hadn't told police of the offender. In the rest of the cases, the department had notified police, although police didn't always list the offender on registries, Bax said. He said he thought that was because not all sex offenders are required to register. The debate comes as the Department of Mental Health already is undergoing major changes in how it reports and investigates abuse and neglect of residents, after a June series in the Post-Dispatch that found widespread mistreatment of residents and inadequate investigations of allegations.

Utah

Parent Testimonial, October 2006 Son severely burned in group home

In October, 2006 my son, Philip, who has autism was severely burned in an accident at the group home where he was receiving services under the Home and Community Supports Waiver. He was left unattended in the kitchen and his rugby shirt caught fire on the gas stove. He was burned on his back across his waist and then up to his shoulder blades. The burns were assessed as second and third degree at the University Hospital Emergency Room. Enclosed [below] is a photo of my son’s back about six weeks after the initial burn. Shortly after this photo, a skin graft was performed over the raw area.

Florida

The News-Press, September 20, 2006.  Group Home Closed for Violations

Rodents and roaches. Chemicals left in unlocked cabinets. Electrical cords with wires exposed. A syringe in a kitchen drawer. Florida state inspections turned up those problems and others over nine months at 10 Professional Group Home, Inc. residences. The deaths of four residents and health and safety violations prompted the Florida Agency on Persons with Disabilities to shut down the Miami-based chain. The agency is required by law to monitor group homes once a year, but it does so at least once a month, officials report. Group homes are licensed by the agency and receive money through reimbursements from a Medicaid program for people with disabilities. There are 1,263 providers statewide. The homes are part of the state's emphasis on deinstitutionalization, taking people out of large institutions such as Gulf Coast Center. In one case, a Professional Group Home resident died just six weeks after he was moved from Gulf Coast center, where he had lived since 1994.”

North Carolina

The News & Observer – August 13, 2006

53 Deaths in Five Years Tied to Adult-Care Violations

More than 50 people living in adult-care homes in North Carolina died recently after preventable mistakes. State records say that inattentive care, medication errors and poor maintenance of the homes contributed to the deaths over a five-year period. Residents of these assisted-living facilities, rest homes and family-care homes have choked to death, frozen, been scalded and wandered into traffic, according to reports on file with the state Division of Facility Services. One suffered a fatal stabbing by a fellow resident. Another received the blood thinner Coumadin for five days instead of Claritin, an allergy medicine. In each case, the deaths arose out of "something the facility did or failed to do," said Jeff Horton, the division's chief operating officer. For about 27,000 North Carolinians living in adult-care homes, the death rate after these preventable incidents is more than six times that of state residents over age 65 who die from health-care complications such as surgery gone wrong. These cases, in which people died after the staff or home committed serious violations, are just the ones reported to the state. Advocates for residents say more occur without notice. Outside of family and government, the deaths rarely get attention. A change in state law last year resulted in reduced public access to investigations and information about penalties in the cases. Since 2000, the state has dealt with 67 cases of preventable deaths in adult-care centers. The N&O analyzed 53 cases for which complete data were available and the most serious level of violation occurred, according to state records.

Washington, D.C.

Washington Post – August 5, 2006       

D.C. Cleansed Group Home Death Reports; Court, Council Didn't See Unfavorable Information

The District government has altered reports concerning deaths of mentally retarded residents of the city's group homes, deleting damaging information before the documents were turned over to court officials and others who review the cases. The deletions, discovered by a federal court monitor, included information that described serious case-management failings; delays in obtaining consent for medical procedures; concerns about health care; concerns about autopsy findings and procedures; and problems getting information needed to complete the death investigations. One report was changed to remove several sentences critical of a case manager's oversight, including a complaint that he had visited the resident only once in eight years. The case manager still works for the Mental Retardation and Developmental Disabilities Administration, according to the court monitor, Elizabeth Jones. Jones frequently has faulted the city for the care and oversight of roughly 2,000 mentally retarded wards, most of whom live in group homes. In November, she said a pattern of neglect led to four deaths since late 2004, and she warned that other lives were in danger. In her latest report, Jones says the city also deleted some recommendations from the investigative contractor, the Columbus Organization that urged the mental retardation agency to change policies or practices to avoid future harm to group home residents, many of whom also have physical disabilities.

https://www.washingtonpost.com/archive/politics/2006/08/05/dc-cleansed-group-home-death-reports-span-classbankheadcourt-council-didnt-see-unfavorable-informationspan/ab14b9f1-6f8e-4805-ba0c-e1bc0ab1ddf3/

California

Inside Bay Area, July 3 – 5, 2006     Broken Homes

Some 26,000 of California's 200,000 developmentally disabled residents — people who are mentally retarded, have Down syndrome, are autistic or have other disabilities — get some type of community-based care, state data show, and many of them are in licensed care homes like The Circle-Los Altos, which are in residential neighborhoods all over the state. Many have been placed in care homes over the past dozen years, as the state emptied its institutions. Two state institutions for developmentally disabled people closed in the late 1990s and a third, Agnews Developmental Center in San Jose, is slated for closure in the near future. Many people are getting good services and leading happy lives in the community, those who work with them say. But others are being poorly cared for, according to the investigation of 300 care homes in Alameda, Contra Costa and San Mateo counties, which included more than 100 interviews and analysis of thousands of pages of public licensing reports and other documents spanning back to 1999. The investigation shows a care system whose low standards, poor funding and limited oversight spell trouble for the more severely disabled people it is now expected to serve — people the system was never set up for in the first place. And it shows that the state agency ultimately responsible for the welfare of the developmentally disabled — some of the state's most vulnerable people - has little direct involvement in their care. See, http://www.insidebayarea.com/brokenhomes

Missouri

The St. Louis Post-Dispatch  June 7 – 13, 2006

Broken Promises, Broken Lives

A Post-Dispatch investigation has found abuse and neglect of mentally retarded and mentally ill residents in state centers and in private facilities the state supervises. Since 2000, there have been more than 2,000 confirmed cases of abuse and neglect with 665 injuries and 21 deaths.

Washington, D.C.

The Washington Post, June 24, 2006

Group Home Failures Persist - Care Still Lacking, D.C. Report Says

The District government continues to provide dangerous, substandard care to disabled residents at some of its group homes and has recently hampered oversight efforts by failing to provide full and timely information on critical operations, a federal court monitor has found. In her latest quarterly report, court monitor Elizabeth Jones describes numerous and chronic problems with the city's Mental Retardation and Developmental Disabilities Administration. She also questions whether she is getting complete reports on death investigations, saying that at least one document she received from the District was edited to remove information critical of the city. A review of five deaths between late 2004 and late 2005 showed that recommendations issued after death investigations weren't always shared with direct care providers, putting group home residents at risk, she said. "The continuing failure to remedy critical systemic issues of substandard care, treatment and oversight means that other clients will experience needless pain, delayed or non-existent attention to high risk situations involving health and safety, and unnecessary threats to their very existence," she wrote. "The urgency to remedy these systemic failures could not be greater."

http://www.washingtonpost.com/wp-dyn/content/article/2006/06/23/AR2006062301602.html

Connecticut

Hartford Courant, June 12, 2006

Agency criticizes agency responsible for mentally retarded

A state agency, reviewing deaths of mentally retarded clients, is critical of the quality of health services provided by the state Department of Mental Retardation. The Fatality Review Board for Persons with Disabilities has concluded that the DMR contributed to the deaths of dozens of mentally retarded people in its care because it failed to provide them with adequate health care services. The report, released Friday, pointed to what it said were key weaknesses in the DMR's health care services including inadequate coordination of services for people living in the community, the discharge of hospital patients into shoddy nursing homes and insufficient nursing care. The report summarizes the board's review of DMR client deaths from July 2003 through June 2005. The board reviewed the deaths of 361 clients, ranging from people who live in state institutions to those living independently or with family, and conducted 35 in-depth investigations. The board found abuse or neglect in many of the cases. The mental retardation agency is reviewing the findings of the board and plans to use them to enhance the agency's existing efforts to improve its health and safety programs, according to a statement the DMR released Friday. It said it has already enacted some of the board's previous recommendations.

Virginia

Times-Dispatch, December 18, 2005   New stakes for study of group homes

 

A legislative study of group homes is expected to produce proposals for new laws to toughen the regulation of group homes in Virginia and require a closer look of how public money is spent on the care of troubled youths.

For state and local policymakers, there is evidence that Virginia isn't doing a good enough job in making group homes accountable for the care they provide at public expense under the Comprehensive Services Act, or CSA.

"The state has a laissez-faire approach to regulation and monitoring," he said, "resulting in a system that is extremely costly and not necessarily providing the quality of care that the kids deserve."

A legislative subcommittee plans to introduce legislation that would:

  • Make the state put the newlaw into effect immediately.
  • Tighten the standards for licensingand regulating group homes.
  • Ordera studybythe JointLegislative and AuditReview Commission of the ratescharged under the Comprehensive Services Act, which pays for treatmentof children primarilythrough a combination of state and localfunds. The federalMedicaid programalso contributesmoneyfor care under the system.

The state licenses and regulates group homes, as well as other kinds of treatment facilities, through four different agencies that in some way handle children with problems. The system includes children in foster-care, special-education and mental-health programs, and the juvenile-justice system.

Washington, D.C.

The Washington Post, November 29, 2005

4 Deaths in D.C. Group Homes Raise Concerns About Neglect

The District government is failing to provide adequate care for mentally and physically disabled residents in its group homes, according to a court monitor who found that a pattern of neglect led to four deaths in the past year. One woman and three men "are dead because they did not receive timely and competent health care," court monitor Elizabeth Jones said in a newly released report. Jones expressed "grievous concerns" about the health and safety of hundreds of disabled people who live in the group homes, especially those with special health risks. The deaths, she warned, "reflect the lack of meaningful safeguards in the system." The four deaths might have been prevented if the city's Mental Retardation and Developmental Disabilities Administration had followed up on earlier recommendations for improving care in the homes -- and if the agency's case managers had been more vigilant in addressing critical problems, wrote Jones, whose staff reviewed medical records and death investigations. Sandy Bernstein, legal director for University Legal Services, which represents the plaintiffs in the suit against the District, criticized what she called "short-term approaches" to dealing with such serious failings by the city. The suit covers about 700 plaintiffs, all former residents of Forest Haven, a now- defunct institution for the mentally retarded. Another 1,300 plaintiffs are special-needs clients of the agency.

Washington State

Seattle Post Intelligencer, Nov. 16 – 18, 2005

Public Protection, Private Abuse (Mentally disabled preyed upon in state system)

11 articles in a three part series look at for-profit companies, contracted by the state, to closely supervise dangerous developmentally disabled people in the community. While the costly program does protect the public in many cases – most of the clients are sex offenders – it has left other vulnerable adults with developmental disabilities at risk of abuse and neglect.

The investigation of the Community Protection Program was based on multiple public disclosure requests to the Department of Social and Health Services which led to the release of more than 12,000 pages of documents. That included incident reports, recertification reviews of residential providers, financial reports and policy documents. http://seattlepi.nwsource.com/specials/protect/

South Carolina

The State, October 28, 2005

State needs investigators to handle abuse and neglect cases, group says

Reports of abuse and neglect of disabled South Carolinians are too often mishandled and those responsible are rarely held accountable, according to a watchdog group. Protection and Advocacy for People with Disabilities Inc. released a report on a two-year study Thursday, highlighting 50 cases that included physical and sexual abuse and deaths in state-funded community-based residential facilities. The authors, who focused the study on the state Department of Disabilities and Special Needs, say the report portrays a broken system that provides little protection for those who cannot protect themselves. The report found flaws in the way many of the cases were handled, stemming largely from the practice of allowing facility administrators to conduct their own investigations into abuse claims rather than alerting law enforcement immediately. The state should create an independent agency, preferably within the State Law Enforcement Division, to investigate all abuse claims immediately, the report says. The agency would include specially trained investigators who know how to work with mentally disabled adults. The issue of abuse at state-funded care facilities came to the fore in recent years when a series of audits of the Babcock Center uncovered cases of abuse, neglect and exploitation of its residents.

National

The Wall Street Journal, September 20, 2005

Difficult Choices: Needing Assistance, Parents of Disabled Resort to Extremes

Nationwide, an estimated 80,000 developmentally disabled people are waiting for in-home help or an opening in a group home. Some have been on waiting lists for more than a decade. In Texas, there are 46,000 people waiting for such help -- or about four times the number of people actually receiving assistance. Requests are increasing as the nation's 4.6 million developmentally disabled, like the rest of the population, are living longer. Meanwhile, their parents are aging too, making it harder to keep up with caretaking.

Long waits for help have prompted lawsuits in two dozen states, charging violations of a 1999 Supreme Court decision requiring states to make diligent efforts to serve disabled individuals in their community. Florida settled one suit in 2001, promising services to 17,000 people on waiting lists. By increasing spending, it did. Since then, the waiting list has ballooned again, to more than 15,000.

Indeed, even though public spending to provide community services to people with developmental disabilities grew by 17% between 2000 and 2002 – to about $27 billion -- demand for those services continues to outpace availability. Federal funds, primarily Medicaid, provide 50% of that $27 billion, with states kicking in 46% and local funds the remaining 4%.

"Unless you're in a crisis, you don't get services. I'm sure that's the case in most states," says Tony Paulauski, executive director of ARC of Illinois, part of a national, nonprofit organization for the developmentally disabled.

National

The Wall Street Journal, September 13, 2005

Safe Place: Disabled People Find Group Homes Can Be Broken too – Patients Gain Independence, But Oversight is Spotty; Challenges of Monitoring

Over the past three decades, there has been a concerted effort to move people with developmental disabilities out of large institutions, which had been long criticized for being overcrowded and isolated. A widely lauded effort to move people into smaller group homes has succeeded in bringing the developmentally disabled into communities where they can learn new skills, get jobs or attend special schools. But this progress has come at a price. It has strained the systems that support people living in the smaller settings and created big gaps in oversight.

Twenty-five years ago, people with developmental disabilities lived in about 16,000 publicly funded homes. Today, they are scattered in about 140,000.

"The systems of quality monitoring have really been taxed beyond what they can manage," says Charlie Lakin, who heads a University of Minnesota program that tracks services to the developmentally disabled. "By and large, a lot of it is pretty loosely organized and pretty loosely monitored."

Only a half-dozen states require that residential programs serving the developmentally disabled be accredited by an independent third-party organization. Developmental disabilities, which affect about 4.6 million people in the U.S., include a range of mental and physical impairments, such as cerebral palsy, autism and mental retardation. Babcock (South Carolina community provider) offers a stark look at the flawed monitoring of group homes, which sometimes leaves family members and other advocates feeling they need to police the care themselves.

The U.S. Department of Health and Human Services -- which pays about half of the $27 billion spent annually on community services for the developmentally disabled -- is ultimately responsible for their protection. But the federal agency assigns the creation and enforcing of rules over such homes to each state. As a result, laws and monitoring vary by state. States aren't required to report all incidents of abuse or neglect to the federal agency. The federal government typically only gets involved if families, advocates or employees of homes provide credible concern about the thoroughness of a state investigation. HHS, which oversees the Centers for Medicare and Medicaid Services, is drafting new procedures following a 2003 report from the General Accounting Office, saying states should be required to report more information about how they protect people with developmental disabilities.

Thousands of nonprofit group homes offer well-supervised programs for the developmentally disabled. But problems exist to some degree in nearly every community, says Curtis Decker, executive director of the National Disability Rights Network, a nonprofit group. Investigators may overlook flaws, he says, because of a lack of other housing options. "They don't know what to do with these folks if they closed a place down." The number of abuse and neglect cases among the developmentally disabled isn't collected nationwide. Many states don't keep central databases on employees involved in such cases, allowing workers to move from one agency to another. "You put people in tough jobs, who are underpaid, not well-trained or supervised, and the potential for abuse is big," says Mr. Decker. "It's endemic to the country."

Missouri

Missouri State Auditor, September 2005

Report No. 2005-62: State mental health clients not fully protected from abuse and neglect due to problems with incident investigations and abusive workers still employed

This audit reviewed how well the Department of Mental Health tracks, investigates and handles incidents and investigations of individuals committing abuse or neglect against its 140,000 clients. All such allegations, including client deaths are tracked in the department's Incident and Investigation Tracking System, which reported 5,689 incidents from July 2003 through August 2004. This audit also followed up on recommendations from a 2001 audit and found systemic problems with abuse investigations. The audit found continuing problems in several areas, including continued employment of known felons and abusers, leading to more abuse, and overall lack of independence and consistency in abuse investigations.

Maryland

The Baltimore Sun, April 10-17, 2005

A failure to protect – Maryland’s troubled group homes.

In an investigation of state oversight of group homes going back a decade, The Sun found that:

  • Mistreatmentof children has gone unpunished.
  • People with criminalconvictions can--and do --workatgroup homes.
  • Taxpayers' moneyis often wasted on poorcare, denying youths arange ofservices.
  • Maryland subsidizeshigh salariesand perks.

The Sun examined the regulation of care, spending and staffing at 25 companies that ran 120 homes for children. Reporters studied 15,000 pages of inspection reports, case files and other records obtained under the state's Public Information Act and conducted more than 150 interviews.

Florida

The Miami Herald, March 26, 2005  Deaths at group homes being probed

In light of cost-cutting changes in nursing care, an investigation is under way into the deaths of four disabled Floridians at group homes. A federally-funded watchdog group is investigating the recent deaths of four disabled Floridians amid an aggressive state campaign to cut millions of dollars from programs that provide medical care for disabled people in community settings. In 2001, the state hired a private company, Maximus Inc., to look for ways to save $24 million annually. The company’s actions have been upheld in 97 percent of the appeals to state officials. Advocates for the disabled insist the quality of medical care for disabled people in group homes has suffered since September when Maximus and the state began requiring group homes to pay for nursing care from the state’s Medicaid plan. That plan covers rotating nurses, not the more stable nursing care provided under a previous plan for disabled people.

National

People with Mental Retardation & Sexual Abuse

The Arc of the United States

(author: Leigh Ann Reynolds, M.S.S.W., M.P.A., Health Promotion & Disability Prevention Specialist)

More than 90 percent of people with developmental disabilities will experience sexual abuse at some point in their lives. Forty-nine percent will experience 10 or more abusive incidents (Valenti-Hein & Schwartz, 1995). Other studies suggest that 39 to 68 percent of girls and 16 to 30 percent of boys will be sexually abused before their eighteenth birthday. The likelihood of rape is staggering: 15,000 to 19,000 of people with developmental disabilities are raped each year in the United States (Sobsey, 1994).

North Carolina

The Charlotte Observer, January 16, 2005 Millions Wasted – The Cost of Kids’ Lives

Since 2001, the state has wasted tens of millions of dollars paying group homes for workers who were never hired, making the industry so lucrative that hundreds of new homes opened – so many that the state couldn’t regulate them. The error helped create a system that’s failing some of the state’s most vulnerable youngsters and cheating taxpayers who pumped more than $165 million into homes last year. In the past three years, as group homes multiplied and regular inspections ceased, many group home owners exploited the system’s weaknesses. Many ignored even the state’s minimal standards, putting children at risk.

California

California Department of Developmental Services (DDS), October 27, 2004 California Releases Mortality Studies

During the late 1990s, a series of epidemiological studies of death rates in California mental retardation institutions compared community residential settings was issued by the University of California Riverside. These reports found risk of mortality to be 83% higher in community settings than in institutions (see, http://www.lifeexpectancy.com, link Articles, Comparative Mortality). These studies prompted the California Department of Developmental Services to commission two follow-up studies. Comparing quality of care provided by developmental centers, community care facilities, intermediate care facilities and other settings, the report indicates, “there were few statistically significant differences in the quality of care, “though it was noted that the developmental centers provided a ‘higher quality of care.’” One problem in determining the adequacy of health care for this study was the lack of documentation. Except for developmental centers, the lack of documentation was an issue for all other types of facilities. Another issue pointed out by the authors of the report is the need for health education appropriately geared for the developmental level of the consumer. An earlier report (1994) noted that “residents at developmental centers were significantly less likely to die from preventable causes than those residing [in] skilled nursing facilities, intermediate care facilities, or community care facilities.” The preventable deaths were primarily due to “inadequacies in the quality of care” followed by “inadequacies in the medical management of common health concerns.”

http://www.lifeexpectancy.com/articles.shtml

Maryland

The Baltimore Sun, August 1, 2004

Safeguards meant to protect the disabled in Maryland group homes failed this time

Toby Adele Heller died of colon cancer 11 months after caretakers failed to follow a physician’s advice to see a gastroenterologist. Toby’s case exposes holes in the state system of care for 5,000 people with developmental disabilities living in licensed group home facilities. Employee turnover is high – 42 percent a year among aides – and wages are low. Even with the recent state-imposed increases, caregivers on average make less than $10 an hour. Quality of care varies with their skills and compassion. And regulators rely heavily on the facilities and families of residents to report problems. But, with nearly 7,000 people on a waiting list for residential services, relatives are often afraid to complain, fearing that their loved ones would have nowhere else to go. Still, Toby’s family, like other families, had every reason to expect that she was getting good care: The state was paying top dollar for her to receive round-the-clock staffing at a cost of $127,672 a year. Her provider, Autumn Homes, received $2.6 million from the state to provide services for 32 clients in 2003.

Virginia

The Washington Post, May 23 – 27, 2004 Assisted Living in Virginia

In a series of articles this week, The Washington Post reported that residents at the facilities have suffered thousands of incidents of harm, including death, abuse, neglect and serious injuries. The state is home to 627 facilities licensed to care for more than 34,000 residents who need supervision and care but who are not sick enough to qualify for a nursing home. The problems stem from several causes, including poor staff training, insufficient resources and relatively weak enforcement by state regulators, according to records and interviews.

Michigan

The Detroit News, May 5, 2004    Group home abuses escalate

The March 29 beating joins a growing number of complaints about abuse at Michigan group homes, where many of the state’s most vulnerable citizens are cared for by employees with low wages and limited training. Last year, the state of Michigan fielded 1,898 complaints about adult group home conditions. That represents a sharp rise compared to 2002, when there were 1,300 total complaints statewide. An estimated 35,000 people live in more than 4,200 state-licensed adult foster care facilities in Michigan. In general, the staff members are paid fast-food wages and given about two weeks of training before they take over the care of the mentally ill and developmentally disabled adults in the homes

Massachusetts

The Patriot Ledger, March 20 – 23, 2004

Special Report: Retarded at risk; System failures

When it comes to medical care, some of the state’s most vulnerable residents, the 8,700 adults who live in group homes for persons with mental retardation, are treated as second-class citizens. Since 2002, three group home residents died because of medical neglect and nine other deaths are under investigation. Since 1999, more than 260 cases of physical abuse and medical error involving the disabled have been substantiated each year. Often, when something goes wrong, on one is held accountable.

Virginia

The Virginia Pilot, February 29, 2004

Special Report: Virginia’s treatment of the mentally disabled

Was it truly their time to die, or could their deaths have been prevented? The answers are difficult to find, mostly because the state, which used to be the primary caregiver for the mentally disabled, has surrendered much of that role to a patchwork system of community-based programs, such as group homes. The homes, 106 of them in South Hampton Roads, operate with low-paid, minimally trained workers. They churn along with a steady stream of money from the state and federal government, but with little oversight from either. The state employees 12 inspectors to monitor 2,468 mental health, mental retardation and substance abuse service locations, including group homes. That’s an average caseload of 206 locations per inspector. A single inspector has responsibility for all of South Hampton Roads, except Portsmouth. Accidents and injuries are supposed to be self-reported by the provider, but may go unreported. Deaths do not have to be reported to the medical examiner. State records that do exist show problems. Of 34 group home providers in South Hampton Roads, 18 have been cited for state licensing violations and 11 for client abuse or neglect in the past three years. The state has legal authority to fine violators but never has done so. Only one provider’s license has been revoked in the past three years. [Internet Access: http://www.hamptonroads.com/pilotonline/]

Indiana

The Times Newspapers of Northwest Indiana/S. Chicago, January 25, 2004

Caring for our invisible citizens; Developmentally disabled caregivers often overworked, undertrained, unqualified

A severe shortage of direct care providers across the country has stemmed from a mass exodus of state institutional care. The result is an annual turnover rate ranging from 50 to 75 percent due in part to low wages. Indiana had no state standards for direct care providers until late 2002. These standards, however, still allow the hiring of individuals regardless if they have employment experience or training of any kind. In addition, no required registry exists for these employees if they are fired from one agency for alleged neglect or abuse and then hired at another agency. Critics said the old threat of state-run institutionalized care has been replaced by a new danger - the big business of private care. That machine is fed by money from the Medicaid waiver program, a financing arrangement that relieves clients from traditionally strict care regulations. In 2003, Indiana's Family and Social Services Administration received 467 formal complaints against some of the approximately 850 approved private providers. Some complaints were minor, some more significant, resulting in corrective actions.

New Mexico

The Albuquerque Journal, November 18, 2003   State Probes Abuse of Disabled

Gov. Bill Richardson has ordered an independent inquiry to track down former residents of the now-closed Los Lunas Hospital and Training School. Richardson's order follows publication of news stories about three developmentally disabled women who were discharged from the Los Lunas facility more than 20 years ago and placed in the unlicensed home of a staff housekeeper and her husband. The goal of the investigation announced Monday is to find whether any more of the former residents may have "slipped through the cracks," receiving no state services and no monitoring. [Internet Access: http://www.abqjournal.com]

New Mexico

The Albuquerque Journal, November 3, 2003

Judge Won’t Halt Disability Suit: State’s Request for Stay Rejected

The Jackson class action lawsuit, filed in 1987, resulted in the closure of Los Lunas and Fort Stanton State Developmental Centers and the court-ordered transfer of residents into group homes and other community settings. In 1997, the parties reached an agreement intended to be a blueprint for ending the lawsuit once certain benchmarks were reached. Oversight has since ended in about two-thirds of the areas. The state’s motion to dismiss the case, arguing that all requirements have been met, failed in light of evidence that there remained pronounced shortcomings in providing safety for New Mexicans with severe disabilities. Attorney for the plaintiffs, Peter Cubra, told the judge that there had been more than one death of class members per month over the past 20 months. The state lacks an effective system for dealing with neglect and abuse when it occurs and for preventing its recurrence, plaintiffs argued. Arc attorney Maureen Saunders cited instances where guardians for clients had learned of problems at group homes operated by contract providers and had informed both providers and the state about them. She said she received no response or one that was delayed for months.

Illinois

The Chicago Tribune, September 1, 2003

Report blasts group homes – Dirty, unsafe conditions cited

Developmentally disabled residents of six Chicago-area group homes endured filthy and unsafe living conditions, frequently going without toilet paper, while the homes’ owners spent thousands of dollars of leased cars and other perks, a disability-rights watchdog group said in a new report. Surprise inspections at the homes, operated by These are God’s People Too, found dark, “foul-smelling” homes, walls smeared with feces, bathrooms without toilet paper and “unkempt yards strewn with garbage,” said the report by a non-profit group that the state has designated to “protect and advocate” for the disabled. The investigation, conducted from March 2002 to June 2003, also found safety hazards, such as blocked exits and easily accessible cleaning products, as well as staff members unfamiliar with proper techniques for restraining unruly residents, the report said.

National Policy Research Brief (University of Minnesota), September 2003 Medicaid Home and Community-Based Services: The first 20 years HCBS and other community services for persons with mental retardation and developmental disabilities have grown at an extremely rapid rate during the past decade. This growth and the nature and flexibility of HCBS have brought enormous challenges in monitoring of service quality and protecting persons receiving them. States have not been able to expand quality assurance (QA) systems commensurate with this growth. But even if they had, they would have had to adjust to new expectations. What was considered “quality” in community services in 1982 or even in 1992 no longer satisfies contemporary values. Today, definitions of quality in human services require attention to dimensions of quality of life in addition to protection of health and safety. A few states have established systems for quality review that attend to the new concepts of quality (see Bradley & Kimmich, 2003; www.qualitymall.org) and over the past decade there have been persistent concerns about whether they attend sufficiently even to the basics of health and safety. A March 19, 1993, House hearing called by Rep. (now Senator) Wyden examined the quality of community services and concluded, “State public officials charged with their oversight had little or no knowledge of the conditions within their homes…or at best found out only after terrible events had occurred.” The Wyden hearing was followed by newspaper stories of the inadequate, life-threatening, sometimes life-ending quality in community services published in several major newspapers in the late 1990s and early 2000s (e.g., Washington Post, San Francisco Chronicle, Minnesota Star Tribune, Hartford Courant). They stimulated emotional reactions, defensive responses, and promises to do better. But, in June 2003 the General Accounting Office (GAO) issued a new report critical of QA in Medicaid HCBS. Although focused primarily on HCBS for elderly people, it recommended that the federal government: “1) establish more detailed criteria regarding necessary components of HCBS QA systems;

2) require states to submit more specific information about QA approaches prior to approval; 3) ensure that states provide sufficient and timely information in their annual reports on efforts to monitor quality; 4) develop guidance on the scope and methodology for federal reviews of state programs; 5) ensure allocation of sufficient resources for conducting thorough and timely reviews of quality in HCBS and hold regional offices accountable for such reviews” (GAO, 2003, p. 5). Clearly, addressing challenges of creating effective quality assurance systems will require leaders that believe that the safety, well-being and quality of life of people with mental retardation and developmental disabilities deserves public investment in a time when other substantial needs are competing for that investment.

Colorado

The Denver Post, August 11, 2003

State Medicaid program a mess, participants say; Oversight at issue in waiver care

Medicaid clients and advocates report failures by state officials to adequately monitor the care patients received through the state home and community-based waiver program. State regulators have known about holes in quality oversight since a scathing report two years ago, but say that policing home care is tough with the little power state legislators have given them. Complaints range from theft and negligence by in-home caregivers to allegations that aides forced patients to sign false time sheets and that caseworkers kept people from qualifying for service. Some clients say they’ve waited for years for the state to address complaints about shoddy service or forgotten care – with no response. A report issued by the Colorado state auditor in June 2001 found that investigators of Medicaid waiver-related complaints sometimes waited months to follow-up, spent far less time investigating complaints than other states did, kept inadequate records of investigations, and were far less likely than investigators elsewhere to cite health providers with deficiencies even after multiple complaints.

National

U.S. General Accounting Office, July 2003

Long-Term Care: Federal Oversight of Growing Medicaid Home and Community-Based Waivers Should Be Strengthened (Report No. GAO-03-576)

Despite a growing number of home and community-based waiver beneficiaries (up to almost 700,000 as of 1999), State waiver applications and annual reports for waivers contain little or no information on state mechanisms for assuring quality in waivers, thus limiting the information available to the federal government. GAO’s analysis of available federal and state oversight reports for waivers serving beneficiaries identified oversight weaknesses and quality of care problems. More than 70% of the waivers that GAO reviewed documented one or more quality of care problems. The most common problems included failure to provide necessary services, weaknesses in plans of care, and inadequate case management. The full extent of such problems is unknown because many state waivers lacked a recent CMS review, as required, or the annual state waiver report lacked the relevant information. GAO recommends strengthened federal oversight.

Georgia

The Atlanta Journal-Constitution, February 24, 2003

Agency failed clients; Poor service may be linked to 6 deaths

Mismanagement by a state-funded community service board in northwest Georgia might have contributed to the deaths of six disabled people, according to a written state review. A scorching report on the performance of the Highland Rivers Community Service Board also found payments to employees who might not exist; long delays in serving mentally ill and mentally retarded patients; and high staff turnover. The state Department of Human Resources has given Highland Rivers until the end of February to come up with a plan for fixing 12 “critical” problems cited in the report. Highland Rivers has another month to address the other issues noted in the 30- page report.

Massachusetts

The Boston Globe, February 4, 2003 Audit alleges misuse of $1 million

Since 1997, the state Disabled Persons Protection Commission has investigated 19 complaints of client injury at Community Group, Inc., facilities and substantiated three cases involving neglect. Another six cases are pending. Officials said they were concerned about the well-being of many of the 85 clients the firm was caring for at 21 group homes in Eastern Massachusetts. The for-profit company was hired by the state to provide housing and job training for people with mental retardation. In addition to the accusations relating to poor care, a state audit recently found that the company had secretly raised more than $1 million selling products made by its clients with disabilities and used the money for a Mercedes-Benz, country club membership, and other perks for company management. Community Group, Inc. of Wakefield also kept $673,000 in profits from group homes and support services – three times the amount allowed by its approximately $4 million contract with the state. The state Department of Mental Retardation fired the company last fall, accusing it of providing poor care, in addition to the alleged financial misdeeds.

Connecticut

The Hartford Courant, January 4, 2003   Study: DMR Clients Died Needlessly

A legislative committee has concluded that some mentally retarded residents of group homes in Connecticut needlessly died “tragic” deaths, which were then not investigated properly because poor oversight by state agencies. In a voluminous report on group home deaths, the Program Review and Investigations Committee also found that the state Department of Mental Retardation created a conflict of interest by investigating deaths itself, and said it should transfer that responsibility to another state agency. The legislature late last year asked the committee to review deaths in DMR group homes after a Courant investigation found evidence of neglect, staff error or other questionable circumstances in one out of every 10 deaths over the past decade. As part of the lengthy report, the committee reviewed the 36 cases identified by The Courant and 177 others chosen randomly to see if there were any patterns of neglect. The committee report concluded: “Tragic things happened that but for a different set of circumstances might not have.” It also pointed out that systems were in place to address the risks to DMR clients, but for one reason or another were not carried out.

Virginia

Times-Dispatch, December 18, 2005

New stakes for study of group homes A legislative study of group homes is expected to produce proposals for new laws to toughen the regulation of group homes in Virginia and require a closer look of how public money is spent on the care of troubled youths. For state and local policymakers, there is evidence that Virginia isn't doing a good enough job in making group homes accountable for the care they provide at public expense under the Comprehensive Services Act, or CSA. "The state has a laissez-faire approach to regulation and monitoring," he said, "resulting in a system that is extremely costly and not necessarily providing the quality of care that the kids deserve." A legislative subcommittee plans to introduce legislation that would: 

  • Make the state put the newlaw into effect immediately.

  • Tighten the standards for licensingand regulating group homes.

  • Ordera studybythe JointLegislative and AuditReview Commission of the ratescharged under the Comprehensive Services Act, which pays for treatmentof children primarilythrough a combination of state and localfunds. The federalMedicaid programalso contributesmoneyfor care under the system.

 The state licenses and regulates group homes, as well as other kinds of treatment facilities, through four different agencies that in some way handle children with problems. The system includes children in foster-care, special-education and mental-health programs, and the juvenile-justice system.

Washington, D.C.

The Washington Post, November 29, 2005
4 Deaths in D.C. Group Homes Raise Concerns About Neglect 
 
The District government is failing to provide adequate care for mentally and physically disabled residents in its group homes, according to a court monitor who found that a pattern of neglect led to four deaths in the past year. One woman and three men "are dead because they did not receive timely and competent health care," court monitor Elizabeth Jones said in a newly released report. Jones expressed "grievous concerns" about the health and safety of hundreds of disabled people who live in the group homes, especially those with special health risks. The deaths, she warned, "reflect the lack of meaningful safeguards in the system." The four deaths might have been prevented if the city's Mental Retardation and Developmental Disabilities Administration had followed up on earlier recommendations for improving care in the homes -- and if the agency's case managers had been more vigilant in addressing critical problems, wrote Jones, whose staff reviewed medical records and death investigations. Sandy Bernstein, legal director for University Legal Services, which represents the plaintiffs in the suit against the District, criticized what she called "short-term approaches" to dealing with such serious failings by the city. The suit covers about 700 plaintiffs, all former residents of Forest Haven, a now- defunct institution for the mentally retarded. Another 1,300 plaintiffs are special-needs clients of the agency.http://www.washingtonpost.com/wp-dyn/content/article/2005/11/28/AR2005112801887.html 

Washington State

Seattle Post Intelligencer, Nov. 16 – 18, 2005  Public Protection, Private Abuse (Mentally disabled preyed upon in state system) 
 
11 articles in a three part series look at for-profit companies, contracted by the state, to closely supervise dangerous developmentally disabled people in the community. While the costly program does protect the public in many cases – most of the clients are sex offenders – it has left other vulnerable adults with developmental disabilities at risk of abuse and neglect.

The investigation of the Community Protection Program was based on multiple public disclosure requests to the Department of Social and Health Services which led to the release of more than 12,000 pages of documents. That included incident reports, recertification reviews of residential providers, financial reports and policy documents. http://seattlepi.nwsource.com/specials/protect/

South Carolina

The State, October 28, 2005   State needs investigators to handle abuse and neglect cases, group says 

Reports of abuse and neglect of disabled South Carolinians are too often mishandled and those responsible are rarely held accountable, according to a watchdog group. Protection and Advocacy for People with Disabilities Inc. released a report on a two-year study Thursday, highlighting 50 cases that included physical and sexual abuse and deaths in state-funded community-based residential facilities. The authors, who focused the study on the state Department of Disabilities and Special Needs, say the report portrays a broken system that provides little protection for those who cannot protect themselves. The report found flaws in the way many of the cases were handled, stemming largely from the practice of allowing facility administrators to conduct their own investigations into abuse claims rather than alerting law enforcement immediately. The state should create an independent agency, preferably within the State Law Enforcement Division, to investigate all abuse claims immediately, the report says. The agency would include specially trained investigators who know how to work with mentally disabled adults. The issue of abuse at state-funded care facilities came to the fore in recent years when a series of audits of the Babcock Center uncovered cases of abuse, neglect and exploitation of its residents. 

National

The Wall Street Journal, September 20, 2005
Difficult Choices: Needing Assistance, Parents of Disabled Resort to Extremes 
 
Nationwide, an estimated 80,000 developmentally disabled people are waiting for in-home help or an opening in a group home. Some have been on waiting lists for more than a decade. In Texas, there are 46,000 people waiting for such help -- or about four times the number of people actually receiving assistance. Requests are increasing as the nation's 4.6 million developmentally disabled, like the rest of the population, are living longer. Meanwhile, their parents are aging too, making it harder to keep up with caretaking. Long waits for help have prompted lawsuits in two dozen states, charging violations of a 1999 Supreme Court decision requiring states to make diligent efforts to serve disabled individuals in their community. Florida settled one suit in 2001, promising services to 17,000 people on waiting lists. By increasing spending, it did. Since then, the waiting list has ballooned again, to more than 15,000. Indeed, even though public spending to provide community services to people with developmental disabilities grew by 17% between 2000 and 2002 – to about $27 billion -- demand for those services continues to outpace availability. Federal funds, primarily Medicaid, provide 50% of that $27 billion, with states kicking in 46% and local funds the remaining 4%. "Unless you're in a crisis, you don't get services. I'm sure that's the case in most states," says Tony Paulauski, executive director of ARC of Illinois, part of a national, nonprofit organization for the developmentally disabled. 
 

National

The Wall Street Journal, September 13, 2005
Safe Place: Disabled People Find Group Homes Can Be Broken too – Patients Gain Independence, But Oversight is Spotty; Challenges of Monitoring
Over the past three decades, there has been a concerted effort to move people with developmental disabilities out of large institutions, which had been long criticized for being overcrowded and isolated. A widely lauded effort to move people into smaller group homes has succeeded in bringing the developmentally disabled into communities where they can learn new skills, get jobs or attend special schools. But this progress has come at a price. It has strained the systems that support people living in the smaller settings and created big gaps in oversight. Twenty-five years ago, people with developmental disabilities lived in about 16,000 publicly funded homes. Today, they are scattered in about 140,000. "The systems of quality monitoring have really been taxed beyond what they can manage," says Charlie Lakin, who heads a University of Minnesota program that tracks services to the developmentally disabled. "By and large, a lot of it is pretty loosely organized and pretty loosely monitored." Only a half-dozen states require that residential programs serving the developmentally disabled be accredited by an independent third-party organization. Developmental disabilities, which affect about 4.6 million people in the U.S., include a range of mental and physical impairments, such as cerebral palsy, autism and mental retardation. Babcock (South Carolina community provider) offers a stark look at the flawed monitoring of group homes, which sometimes leaves family members and other advocates feeling they need to police the care themselves. The U.S. Department of Health and Human Services -- which pays about half of the $27 billion spent annually on community services for the developmentally disabled -- is ultimately responsible for their protection. But the federal agency assigns the creation and enforcing of rules over such homes to each state. As a result, laws and monitoring vary by state. States aren't required to report all incidents of abuse or neglect to the federal agency. The federal government typically only gets involved if families, advocates or employees of homes provide credible concern about the thoroughness of a state investigation. HHS, which oversees the Centers for Medicare and Medicaid Services, is drafting new procedures following a 2003 report from the General Accounting Office, saying states should be required to report more information about how they protect people with developmental disabilities. Thousands of nonprofit group homes offer well-supervised programs for the developmentally disabled. But problems exist to some degree in nearly every community, says Curtis Decker, executive director of the National Disability Rights Network, a nonprofit group. Investigators may overlook flaws, he says, because of a lack of other housing options. "They don't know what to do with these folks if they closed a place down." The number of abuse and neglect cases among the developmentally disabled isn't collected nationwide. Many states don't keep central databases on employees involved in such cases, allowing workers to move from one agency to another. "You put people in tough jobs, who are underpaid, not well-trained or supervised, and the potential for abuse is big," says Mr. Decker. "It's endemic to the country." 

Missouri

Missouri State Auditor, September 2005

Report No. 2005-62: State mental health clients not fully protected from abuse and neglect due to problems with incident investigations and abusive workers still employed 

This audit reviewed how well the Department of Mental Health tracks, investigates and handles incidents and investigations of individuals committing abuse or neglect against its 140,000 clients. All such allegations, including client deaths are tracked in the department's Incident and Investigation Tracking System, which reported 5,689 incidents from July 2003 through August 2004. This audit also followed up on recommendations from a 2001 audit and found systemic problems with abuse investigations. The audit found continuing problems in several areas, including continued employment of known felons and abusers, leading to more abuse, and overall lack of independence and consistency in abuse investigations. 

Maryland

The Baltimore Sun, April 10-17, 2005  A failure to protect – Maryland’s troubled group homes

In an investigation of state oversight of group homes going back a decade, The Sun found that: 

  • Mistreatmentof children has gone unpunished.
  • People with criminalconvictions can--and do --workatgroup homes.
  • Taxpayers' moneyis often wasted on poorcare, denying youths arange ofservices.
  • Maryland subsidizeshigh salariesand perks.

 The Sun examined the regulation of care, spending and staffing at 25 companies that ran 120 homes for children. Reporters studied 15,000 pages of inspection reports, case files and other records obtained under the state's Public Information Act and conducted more than 150 interviews.

 

Florida

The Miami Herald, March 26, 2005   Deaths at group homes being probed 

In light of cost-cutting changes in nursing care, an investigation is under way into the deaths of four disabled Floridians at group homes. A federally-funded watchdog group is investigating the recent deaths of four disabled Floridians amid an aggressive state campaign to cut millions of dollars from programs that provide medical care for disabled people in community settings. In 2001, the state hired a private company, Maximus Inc., to look for ways to save $24 million annually. The company’s actions have been upheld in 97 percent of the appeals to state officials. Advocates for the disabled insist the quality of medical care for disabled people in group homes has suffered since September when Maximus and the state began requiring group homes to pay for nursing care from the state’s Medicaid plan. That plan covers rotating nurses, not the more stable nursing care provided under a previous plan for disabled people.

National

People with Mental Retardation & Sexual Abuse - The Arc of the United States

(author: Leigh Ann Reynolds, M.S.S.W., M.P.A., Health Promotion & Disability Prevention Specialist) 

More than 90 percent of people with developmental disabilities will experience sexual abuse at some point in their lives. Forty-nine percent will experience 10 or more abusive incidents (Valenti-Hein & Schwartz, 1995). Other studies suggest that 39 to 68 percent of girls and 16 to 30 percent of boys will be sexually abused before their eighteenth birthday. The likelihood of rape is staggering: 15,000 to 19,000 of people with developmental disabilities are raped each year in the United States (Sobsey, 1994). [Internet: http://www.thearc.org/faqs/Sexabuse.html

North Carolina

The Charlotte Observer, January 16, 2005 Millions Wasted – The Cost of Kids’ Lives 

Since 2001, the state has wasted tens of millions of dollars paying group homes for workers who were never hired, making the industry so lucrative that hundreds of new homes opened – so many that the state couldn’t regulate them. The error helped create a system that’s failing some of the state’s most vulnerable youngsters and cheating taxpayers who pumped more than $165 million into homes last year. In the past three years, as group homes multiplied and regular inspections ceased, many group home owners exploited the system’s weaknesses. Many ignored even the state’s minimal standards, putting children at risk.

California

California Department of Developmental Services (DDS), October 27, 2004      California Releases Mortality Studies 

During the late 1990s, a series of epidemiological studies of death rates in California mental retardation institutions compared community residential settings was issued by the University of California Riverside. These reports found risk of mortality to be 83% higher in community settings than in institutions (see, http://www.lifeexpectancy.com, link Articles, Comparative Mortality). These studies prompted the California Department of Developmental Services to commission two follow-up studies. Comparing quality of care provided by developmental centers, community care facilities, intermediate care facilities and other settings, the report indicates, “there were few statistically significant differences in the quality of care, “though it was noted

 

that the developmental centers provided a ‘higher quality of care.’” One problem in determining the adequacy of health care for this study was the lack of documentation. Except for developmental centers, the lack of documentation was an issue for all other types of facilities. Another issue pointed out by the authors of the report is the need for health education appropriately geared for the developmental level of the consumer. An earlier report (1994) noted that “residents at developmental centers were significantly less likely to die from preventable causes than those residing [in] skilled nursing facilities, intermediate care facilities, or community care facilities.” The preventable deaths were primarily due to “inadequacies in the quality of care” followed by “inadequacies in the medical management of common health concerns.”

http://www.lifeexpectancy.com/articles.shtml

Maryland

The Baltimore Sun, August 1, 2004

Safeguards meant to protect the disabled in Maryland group homes failed this time 

Toby Adele Heller died of colon cancer 11 months after caretakers failed to follow a physician’s advice to see a gastroenterologist. Toby’s case exposes holes in the state system of care for 5,000 people with developmental disabilities living in licensed group home facilities. Employee turnover is high – 42 percent a year among aides– and wages are low. Even with the recent state-imposed increases, caregivers on average make less than $10 an hour. Quality of care varies with their skills and compassion. And regulators rely heavily on the facilities and families of residents to report problems. But, with nearly 7,000 people on a waiting list for residential services, relatives are often afraid to complain, fearing that their loved ones would have nowhere else to go. Still, Toby’s family, like other families, had every reason to expect that she was getting good care: The state was paying top dollar for her to receive round-the-clock staffing at a cost of $127,672 a year. Her provider, Autumn Homes, received $2.6 million from the state to provide services for 32 clients in 2003. 

Virginia

The Washington Post, May 23 – 27, 2004   Assisted Living in Virginia 

In a series of articles this week, The Washington Post reported that residents at the facilities have suffered thousands of incidents of harm, including death, abuse, neglect and serious injuries. The state is home to 627 facilities licensed to care for more than 34,000 residents who need supervision and care but who are not sick enough to qualify for a nursing home. The problems stem from several causes, including poor staff training, insufficient resources and relatively weak enforcement by state regulators, according to records and interviews. 

Michigan

The Detroit News, May 5, 2004 Group home abuses escalate 

The March 29 beating joins a growing number of complaints about abuse at Michigan group homes, where many of the state’s most vulnerable citizens are cared for by employees with low wages and limited training. Last year, the state of Michigan fielded 1,898 complaints about adult group home conditions. That represents a sharp rise compared to 2002, when there were 1,300 total complaints statewide. An estimated 35,000 people live in more than 4,200 state-licensed adult foster care facilities in Michigan. In general, the staff members are paid fast-food wages and given about two weeks of training before they take over the care of the mentally ill and developmentally disabled adults in the homes.

Massachusetts

The Patriot Ledger, March 20 – 23, 2004 Special Report: Retarded at risk; System failures 

When it comes to medical care, some of the state’s most vulnerable residents, the 8,700 adults who live in group homes for persons with mental retardation, are treated as second-class citizens. Since 2002, three grouphome residents died because of medical neglect and nine other deaths are under investigation. Since 1999, more than 260 cases of physical abuse and medical error involving the disabled have been substantiated each year. Often, when something goes wrong, on one is held accountable. 

Virginia

The Virginia Pilot, February 29, 2004

Special Report: Virginia’s treatment of the mentally disabled 

Was it truly their time to die, or could their deaths have been prevented? The answers are difficult to find, mostly because the state, which used to be the primary caregiver for the mentally disabled, has surrendered much of that role to a patchwork system of community-based programs, such as group homes. The homes, 106 of them in South Hampton Roads, operate with low-paid, minimally trained workers. They churn along with a steady stream of money from the state and federal government, but with little oversight from either. The state employees 12 inspectors to monitor 2,468 mental health, mental retardation and substance abuse service locations, including group homes. That’s an average caseload of 206 locations per inspector. A single inspector has responsibility for all of South Hampton Roads, except Portsmouth. Accidents and injuries are supposed to be self-reported by the provider, but may go unreported. Deaths do not have to be reported to the medical examiner. State records that do exist show problems. Of 34 group home providers in South Hampton Roads, 18 have been cited for state licensing violations and 11 for client abuse or neglect in the past three years. The state has legal authority to fine violators but never has done so. Only one provider’s license has been revoked in the past three years. [Internet Access: http://www.hamptonroads.com/pilotonline/

Indiana

The Times Newspapers of Northwest Indiana/S. Chicago, January 25, 2004

Caring for our invisible citizens; Developmentally disabled caregivers often overworked, undertrained, unqualified 

A severe shortage of direct care providers across the country has stemmed from a mass exodus of state institutional care. The result is an annual turnover rate ranging from 50 to 75 percent due in part to low wages. Indiana had no state standards for direct care providers until late 2002. These standards, however, still allow the hiring of individuals regardless if they have employment experience or training of any kind. In addition, no required registry exists for these employees if they are fired from one agency for alleged neglect or abuse and then hired at another agency. Critics said the old threat of state-run institutionalized care has been replaced by a new danger - the big business of private care. That machine is fed by money from the Medicaid waiver program, a financing arrangement that relieves clients from traditionally strict care regulations. In 2003, Indiana's Family and Social Services Administration received 467 formal complaints against some of the approximately 850 approved private providers. Some complaints were minor, some more significant, resulting in corrective actions.

New Mexico

The Albuquerque Journal, November 18, 2003  State Probes Abuse of Disabled 

Gov. Bill Richardson has ordered an independent inquiry to track down former residents of the now-closed Los Lunas Hospital and Training School. Richardson's order follows publication of news stories about three developmentally disabled women who were discharged from the Los Lunas facility more than 20 years ago and placed in the unlicensed home of a staff housekeeper and her husband. The goal of the investigation announced Monday is to find whether any more of the former residents may have "slipped through the cracks," receiving no state services and no monitoring. [Internet Access: http://www.abqjournal.com

New Mexico

The Albuquerque Journal, November 3, 2003

Judge Won’t Halt Disability Suit: State’s Request for Stay Rejected 

The Jackson class action lawsuit, filed in 1987, resulted in the closure of Los Lunas and Fort Stanton State Developmental Centers and the court-ordered transfer of residents into group homes and other community settings. In 1997, the parties reached an agreement intended to be a blueprint for ending the lawsuit once certain benchmarks were reached. Oversight has since ended in about two-thirds of the areas. The state’s motion to dismiss the case, arguing that all requirements have been met, failed in light of evidence that there remained pronounced shortcomings in providing safety for New Mexicans with severe disabilities. Attorney for the plaintiffs, Peter Cubra, told the judge that there had been more than one death of class members per month over the past 20 months. The state lacks an effective system for dealing with neglect and abuse when it occurs and for preventing its recurrence, plaintiffs argued. Arc attorney Maureen Saunders cited instances where guardians for clients had learned of problems at group homes operated by contract providers and had informed both providers and the state about them. She said she received no response or one that was delayed for months. 

Illinois

The Chicago Tribune, September 1, 2003

Report blasts group homes – Dirty, unsafe conditions cited 

Developmentally disabled residents of six Chicago-area group homes endured filthy and unsafe living conditions, frequently going without toilet paper, while the homes’ owners spent thousands of dollars of leased cars and other perks, a disability-rights watchdog group said in a new report. Surprise inspections at the homes, operated by These are God’s People Too, found dark, “foul-smelling” homes, walls smeared with feces, bathrooms without toilet paper and “unkempt yards strewn with garbage,” said the report by a non-profit group that the state has designated to “protect and advocate” for the disabled. The investigation, conducted from March 2002 to June 2003, also found safety hazards, such as blocked exits and easily accessible cleaning products, as well as staff members unfamiliar with proper techniques for restraining unruly residents, the report said.

National

Policy Research Brief (University of Minnesota), September 2003 Medicaid Home and Community-Based Services: The first 20 years

  HCBS and other community services for persons with mental retardation and developmental disabilities have grown at an extremely rapid rate during the past decade. This growth and the nature and flexibility of HCBS have brought enormous challenges in monitoring of service quality and protecting persons receiving them. States have not been able to expand quality assurance (QA) systems commensurate with this growth. But even if they had, they would have had to adjust to new expectations. What was considered “quality” in community services in 1982 or even in 1992 no longer satisfies contemporary values. Today, definitions of quality in human services require attention to dimensions of quality of life in addition to protection of health and safety. A few states have established systems for quality review that attend to the new concepts of quality (see Bradley & Kimmich, 2003; www.qualitymall.org) and over the past decade there have been persistent concerns about whether they attend sufficiently even to the basics of health and safety. A March 19, 1993, House hearing called by Rep. (now Senator) Wyden examined the quality of community services and concluded, “State public officials charged with their oversight had little or no knowledge of the conditions within their homes…or atbest found out only after terrible events had occurred.” The Wyden hearing was followed by newspaper stories of the inadequate, life-threatening, sometimes life-ending quality in community services published in several major newspapers in the late 1990s and early 2000s (e.g., Washington Post, San Francisco Chronicle, Minnesota Star Tribune, Hartford Courant). They stimulated emotional reactions, defensive responses, and promises to do better. But, in June 2003 the General Accounting Office (GAO) issued a new report critical of QA in Medicaid HCBS. Although focused primarily on HCBS for elderly people, it recommended that the federal government:

“1) establish more detailed criteria regarding necessary components of HCBS QA systems;

2) require states to submit more specific information about QA approaches prior to approval;

3) ensure that states provide sufficient and timely information in their annual reports on efforts to monitor quality;

4) develop guidance on the scope and methodology for federal reviews of state programs;

5) ensure allocation of sufficient resources for conducting thorough and timely reviews of quality in HCBS and hold regional offices accountable for such reviews” (GAO, 2003, p. 5).

Clearly, addressing challenges of creating effective quality assurance systems will require leaders that believe that the safety, well-being and quality of life of people with mental retardation and developmental disabilities deserves public investment in a time when other substantial needs are competing for that investment.  

Colorado

The Denver Post, August 11, 2003   State Medicaid program a mess, participants say; Oversight at issue in waiver care 

Medicaid clients and advocates report failures by state officials to adequately monitor the care patients received through the state home and community-based waiver program. State regulators have known about holes in quality oversight since a scathing report two years ago, but say that policing home care is tough with the little power state legislators have given them. Complaints range from theft and negligence by in-home caregivers to allegations that aides forced patients to sign false time sheets and that caseworkers kept people from qualifying for service. Some clients say they’ve waited for years for the state to address complaints about shoddy service or forgotten care – with no response. A report issued by the Colorado state auditor in June 2001 found that investigators of Medicaid waiver-related complaints sometimes waited months to follow-up, spent far less time investigating complaints than other states did, kept inadequate records of investigations, and were far less likely than investigators elsewhere to cite health providers with deficiencies even after multiple complaints. 

National

U.S. General Accounting Office, July 2003  Long-Term Care: Federal Oversight of Growing Medicaid Home and Community-Based Waivers Should Be Strengthened (Report No. GAO-03-576) 

Despite a growing number of home and community-based waiver beneficiaries (up to almost 700,000 as of 1999), State waiver applications and annual reports for waivers contain little or no information on state mechanisms for assuring quality in waivers, thus limiting the information available to the federal government. GAO’s analysis of available federal and state oversight reports for waivers serving beneficiaries identified oversight weaknesses and quality of care problems. More than 70% of the waivers that GAO reviewed documented one or more quality of care problems. The most common problems included failure to provide necessary services, weaknesses in plans of care, and inadequate case management. The full extent of such problems is unknown because many state waivers lacked a recent CMS review, as required, or the annual state waiver report lacked the relevant information. GAO recommends strengthened federal oversight.

Georgia

The Atlanta Journal-Constitution, February 24, 2003

Agency failed clients; Poor service may be linked to 6 deaths

Mismanagement by a state-funded community service board in northwest Georgia might have contributed to the deaths of six disabled people, according to a written state review. A scorching report on the performance of the Highland Rivers Community Service Board also found payments to employees who might not exist; long delays in serving mentally ill and mentally retarded patients; and high staff turnover. The state Department of Human Resources has given Highland Rivers until the end of February to come up with a plan for fixing 12 “critical” problems cited in the report. Highland Rivers has another month to address the other issues noted in the 30- page report.

 Massachusetts

The Boston Globe, February 4, 2003 Audit alleges misuse of $1 million

Since 1997, the state Disabled Persons Protection Commission has investigated 19 complaints of client injury at Community Group, Inc., facilities and substantiated three cases involving neglect. Another six cases are pending. Officials said they were concerned about the well-being of many of the 85 clients the firm was caring for at 21 group homes in Eastern Massachusetts. The for-profit company was hired by the state to provide housing and job training for people with mental retardation. In addition to the accusations relating to poor care, a state audit recently found that the company had secretly raised more than $1 million selling products made by its clients with disabilities and used the money for a Mercedes-Benz, country club membership, and other perks for company management. Community Group, Inc. of Wakefield also kept $673,000 in profits from group homes and support services – three times the amount allowed by its approximately $4 million contract with the state. The state Department of Mental Retardation fired the company last fall, accusing it of providing poor care, in addition to the alleged financial misdeeds.

Connecticut

The Hartford Courant, January 4, 2003 Study: DMR Clients Died Needlessly

 

A legislative committee has concluded that some mentally retarded residents of group homes in Connecticut needlessly died “tragic” deaths, which were then not investigated properly because poor oversight by state agencies. In a voluminous report on group home deaths, the Program Review and Investigations Committee also found that the state Department of Mental Retardation created a conflict of interest by investigating deaths itself, and said it should transfer that responsibility to another state agency. The legislature late last year asked the committee to review deaths in DMR group homes after a Courant investigation found evidence of neglect, staff error or other questionable circumstances in one out of every 10 deaths over the past decade. As part of the lengthy report, the committee reviewed the 36 cases identified by The Courant and 177 others chosen randomly to see if there were any patterns of neglect. The committee report concluded: “Tragic things happened that but for a different set of circumstances might not have.” It also pointed out that systems were in place to address the risks to DMR clients, but for one reason or another were not carried out.

Continue to 2001 to 2002

Widespread Abuse, Neglect and Death in Small Settings Serving People with Intellectual Disabilities - 2007 to 2010

NOTE: LINKS IN SOME OLDER ARTICLES MAY NO LONGER BE ACTIVE

Wisconsin

Kenosha News, January 4, 2010

Woman found chained in home; Mother, brother charged in case

Authorities found an emaciated 38-year-old woman, half-naked and shivering on a urine-soaked blanket, chained to a weight bench, covered in feces and unable to communicate or use her legs, according to charges filed Monday against her mother and brother. The mentally disabled woman, who reportedly has the mind of a 5-year-old but had once lived normally, weighed 60 to 70 pounds when she was found. When rescuers cut the chain around her left ankle, authorities said the woman could not straighten her legs or walk.

Nebraska

Nebraska Radio Network, November 18, 2009

Former Beatrice State Developmental Center resident dies

Brady Kruse, a 35 year old former resident of the Beatrice State Developmental Center has died. Brady was one of the 47 “medically fragile” residents who were moved from the center last February. He had resided at Beatrice for 33 years before he was moved. He is the 10th death of those deemed “medically fragile”; that’s nearly 22%.

Massachusetts

I-Team WBZ (Boston), November 13, 2009

Was Disabled Man Abused At Group Home?

Several state agencies and the Middlesex District Attorney's office are investigating disturbing allegations of abuse and neglect at a group home. Danny Butler was found with bruises all over his body, black eyes and broken bones while in the care of a group home licensed by the state. But what happened and who's responsible are still unanswered questions that haunt Danny Butler's family. The 61-year old was living at a group home in Dracut, a home managed by the Mental Health Association of Greater Lowell and licensed by the former Department of Mental Retardation. On July 23rd, Danny was rushed to Lowell General Hospital because he was in respiratory distress. Dracut Police weren't notified about Daniel Butler's injuries until he began having difficulty breathing and ended up in the hospital. That's when doctors and family members discovered all of the bruises and broken bones and called police. Medical records show Danny Butler had multiple bruises, facial injuries, emotional trauma and possible sexual abuse. Nancy Alterio, the head of the Disabled Persons Protection Commission says her agency had four allegations of abuse with this one victim. One major problem with this investigation is that Danny Butler has been silenced by the trauma. Ed Butler says right now Danny can't communicate beyond yes or no, and as soon as the sun goes down he gets agitated and restless and he's very afraid. Nancy Alterio said a lot of things can make it difficult to prove a case. When you don't have forensic evidence or testimony from victims or witnesses it's difficult to determine what actually did or didn't happen.

Illinois

Howe Transfers Lead to Higher Mortality Rate October 31, 2009

According to the Department of Human Services Howe Transitions Status Report (which covers 7/1/07 - 10/31/09), of the 89 former Howe residents who have transferred to the community, 7 have died (7.87%), a figure that is 46% higher than the number of Howe residents who have died.

Washington, D.C.

Washington Post, October 8, 2009

District Suspends Referrals To Nonprofit's Group Homes; City Took Agency to Court This Week Over Safety Concerns

The District is halting new referrals to all group homes operated by a nonprofit organization that the city took to court this week over health and safety concerns at two of its homes for the mentally disabled. The nonprofit organization, Individual Development Inc., operates 11 facilities in the District. The city's latest move is a sign that its concerns go beyond the two homes that the city has petitioned to be taken over by a court-appointed receiver. Advocates for the mentally disabled, health inspectors for the District and the federal court monitor in a class-action lawsuit have been raising questions for years about the quality of care at IDI facilities. After one woman recently lost 26 pounds in a month, the advocacy group University Legal Services expressed concern. Independent investigations of two of the deaths by a consultant found significant deficiencies in the health care provided to two women at the IDI homes. The investigation of the third death is underway.

http://www.washingtonpost.com/wp-dyn/content/article/2009/10/07/AR2009100703888.html

 

Maryland

DOJ Findings Letter Relating to Rosewood Center    October 7, 2009

On January 15, 2008, Maryland Governor Martin O’Malley announced that the State intended to close Rosewood Center by June 30, 2009, a goal which was achieved. Because of the closure, a significant concern that underlies many of the [DOJ] findings is particularly troubling: Rosewood’s assessments of its residents were inaccurate, incomplete, and untimely. The medical, psychiatric, nutritional, behavioral, habilitation, vocational, and communication assessments provided by Rosewood substantially depart from generally accepted professional standards. The harm from inadequacies of the assessments is multi-faceted . . . Moreover, we have grave concerns regarding the inadequacies in the State’s and Rosewood’s discharge planning and transition process, especially given the deficiencies we found in Rosewood’s assessments. While at Rosewood, we requested copies of the monitoring reports that are periodically performed as to individuals who have recently been discharged. This information is crucial to effective discharge planning, as it affords Rosewood and the State the opportunity to identify problems in the transition process and to implement corrective actions. Because many of Rosewood’s former residents who have recently been placed in the community are medically and behaviorally fragile, these deficits expose these individuals to significant risk of harm.

National

U.S. Department of Justice, October 2009

First National Study on Crime Against Persons with Disabilities

Young and middle-age persons with disabilities experienced violence at nearly twice the rate as persons of the same age without a disability concluded a study released by the U.S. Department of Justice. Yet, the rate of violence did not differ by disability status for persons age 50 or older and persons age 65 or older, with or without a disability, had the lowest rates of violent crime, the study concludes. (DOJ, October 2009).

New Jersey

The Star-Ledger, July 16, 2009

Complaints of abuse spark investigation of group home

State officials are investigating a group home in Bridgewater where a worker is accused of beating a 35-year- old disabled resident and sending him to the hospital, a Department of Human Services spokeswoman confirmed. The alleged assault on James Mullins last month is one of three complaints pending against AdvoServ of New Jersey's group home on Severin Drive, Human Services spokeswoman Pam Ronan said today. In addition to Mullins' complaint, the state is investigating another alleging physical abuse and an allegation of verbal abuse. Although she declined to discuss the details of the investigations, Ronan said the complaints prompted the department's Division of Developmental Disabilities to make a surprise inspection on July 9. She said she could not comment on the findings until the report is shared with AdvoServ. With 18 group homes and one supervised apartment complex in New Jersey, the Delaware-based company is the state's largest private provider of residential services and program for developmentally disabled adults with severe behavioral problems and mental illnesses.

http://www.nj.com/news/index.ssf/2008/07/complaints_of_abuse_spark_inve.html

Washington, D.C.

Associated Press, December 15, 2008

Woman at D.C. group home is homicide victim

Authorities say a woman's death at a group home in Northeast D.C. has been ruled a homicide. D.C. Council member Muriel Bowser says police responded about 4 p.m. Sunday at the home for the mentally disabled in the 5400 block of Blair Road NE. Bowser says the home is operated by a contractor, and she is unaware of any complaints about the home. Authorities have not revealed the cause of death. Police Inspector Rodney Parks said Sunday evening that the case had been closed. The District’s care of its disabled citizens as been in question since December 1999 when reporter Katherine Boo’s Pulitzer Prize winning investigative series, “Invisible Deaths: The Fatal Neglect of D.C.'s Retarded” (see below).

http://www.washingtonpost.com/wp-dyn/content/article/2008/12/15/AR2008121500070.html

http://www.washingtonpost.com/wp-srv/local/invisible/deaths5.htm

Washington, D.C.

Washington Post, October 22, 2008

Disabled Man Died Before Needed D.C. Aid Arrived

"Mr. Johnson" badly burned himself while trying to cook. There were roaches on him when he showed up for medical appointments. He had difficulty using the toilet and rarely took his medication. But for years, the 65- year-old was deemed ineligible for help by the District agency that cares for mentally and physically disabled residents. For bureaucratic reasons, he officially did not exist.

In February, the District finally approved funding for him. It was for his burial.

That detail made the District's acting attorney general, Peter Nickles, calls it "a sad story, the ultimate sad story," and a case that "fell through the cracks." City officials yesterday acknowledged mishandling the case and vowed to investigate.

Mr. Johnson, the pseudonym used by lawyers who took up the man's case in recent years, was hit by a bus when he was a toddler, in the 1940s. Doctors concluded that he was left mentally disabled, and for decades he remained at home under his mother's care. When the mother died 15 years ago, the man's well-being fell to a volunteer who cleaned, shopped and tried to arrange medical care from the city's agency for the mentally disabled. But the volunteer's efforts could not keep the man from living in squalor, hurting himself, skipping his medication and ultimately dying in a diabetic coma.

The legal advocacy group said it wrote the report to shine a light on a bureaucracy's fatal focus on paperwork protocol that kept a person in need from getting help. "We have other clients like him who have been waiting around for services, and they are denied services simply because they don't have the right records, usually documents from D.C. public schools," said Mary Nell Clark, managing attorney for University Legal Services.

The group represents abuse victims in a 30-year-old lawsuit against the District over quality of care in group homes for the mentally and physically disabled.

http://www.washingtonpost.com/wp-dyn/content/article/2008/10/21/AR2008102101359.html

Illinois

Associated Press, March 21, 2008

Disabled pregnant woman used as target practice

Banished to the basement, the 29-year-old mother with a childlike mind and another baby on the way had little more than a thin rug and a mattress to call her own on the chilly concrete floor. Dorothy Dixon ate what she could forage from the refrigerator upstairs, where housemates used her for target practice with BBs, burned her with a glue gun and doused her with scalding liquid that peeled away her skin. Her attackers / housemates included Michelle Riley, 35, who they said befriended Dixon but pocketed monthly Social Security checks she got because of her developmental delays, Judy Woods, three teenagers (including Riley’s 16-year old daughter), and Riley’s 12 year old son. They torched what few clothes she had, so she walked around naked. They often pummeled her with an aluminum bat or metal handle. Dixon -- six months pregnant -- died after weeks of abuse. Police have charged two adults, three teenagers and a 12-year-old boy with murder in the case that has repulsed many in this Mississippi River town. Riley and Dixon, police said, had lived in Quincy, a Mississippi River town about 100 miles north of St. Louis, Mo. Quincy is where Riley worked as a coordinator for a regional center that helps the developmentally disabled with housing and other services. Dixon was a client. "The idea that someone would say, 'Have the handicapped people do it' is very disturbing," he said. "They just cut the grass and do the weeding. They work so hard."

http://www.pantagraph.com/news/torture-death-shocks-illinois-town/article_dd6dac4c-2ba4-58e1-9beb-07055df839aa.html

Washington, D.C

Washington Post (column), March 16, 2008

Putting Mentally Disabled at Risk Is No Way to Cut Corners

Demolishing a building that dates back to the days of asbestos is a complicated business. You need to examine the construction method and, often, call in the men in white suits. When the Federal Aviation Administration decided to knock down an old guard shack last year on the grounds of the Washington Air Route Traffic Control Center in Leesburg, no such precautions were taken. Instead, managers called in a crew of mentally disabled people and put them to work at the site, which had been found in 1993 to contain asbestos. Now, the FAA says, the agency's inspector general, federal prosecutors in Alexandria and a grand jury are investigating whether the decision to give part of the job to people with severe disabilities was a purposeful attempt to circumvent procedures. A crew of about half a dozen workers from Echo Inc. (Every Citizen Has Opportunities), a Leesburg-based charity that trains and provides jobs for mentally retarded and other disabled people in Loudoun and Fairfax counties, has handled groundskeeping duties at the FAA facility for three decades, Echo Executive Director William Haney said. Haney said that when he heard about the asbestos incident, he asked the FAA for a written report on what role his workers had played but "never got anything." Haney was told that the workers' role in the demolition was "incidental," but, he said, "I just don't know what went on."

http://voices.washingtonpost.com/rawfisher/2008/03/putting_mentally_disabled_at_r.html

Oregon

The Oregonian, March 15, 2008

After Fairview, Protecting Johnny

Johnny Beckhardt may be the best-known person with a developmental disability in Oregon. The 28-year-old stars in a national ad campaign showcasing his independent lifestyle and work at Goodwill Industries.

The publicity has made Johnny a symbol of hope for people with mental retardation. It hasn't done much to protect him.

As a client in Oregon's troubled system of homes for developmentally disabled adults, Johnny has been victimized multiple times. Caregivers took financial advantage of him. A medical emergency nearly killed him.

Most recently, officials moved Johnny from a Dallas group home after he reported what investigators feared was physical and sexual abuse.

Johnny's experience angers his 67-year-old father. Over the years, Butch has modeled the type of devoted parental advocacy that experts say is needed for someone like Johnny to thrive in the community. "I am always looking out for Johnny," said Butch. "I call every week. I keep in touch with his caregivers. But this system is so screwed up that even kids with involved parents are at risk."

Oregon's network of 1,100 group and foster homes serves about 4,600 developmentally disabled adults. An investigation by The Oregonian last year found that between 2000 and 2006, more than 2,000 were victims of abuse by caregivers, ranging from neglect of medical needs to rape, beatings, thefts, verbal abuse or improper restraint.

Half were victims more than once, and 14 died after workers failed to provide timely or necessary care. In the wake of the report, outraged legislators pledged to quickly adopt reforms. But their first step -- a bill to better track abusive caregivers and boost fines for negligent homes -- was abandoned in the crush of final business at last month's special legislative session.

People born with developmental disabilities such as Down syndrome, autism or cerebral palsy have long been known to suffer high rates of abuse and neglect. State officials say they are doing the best they can to police the homes but need more money to boost wages and train better caregivers.

Until that happens, the threat of being a victim continues for residents, most of whom don't have a parent or other relative standing at the ready to remedy lapses in their care.

"I wonder what happens," Butch Beckhardt said, "to those who don't have people looking out for them."

http://www.oregonlive.com/special/index.ssf/2008/03/after_fairview_protecting_john.html

South Carolina

The Item, March 9, 2008

DSN under the microscope

Allegations of abuse, financial fraud have cast a shadow over a county agency whose clients are among the most "fragile and vulnerable." The director of the Sumter County Disabilities and Special Needs Board has been removed from his position and charged with five counts of criminal sexual conduct and two counts of kidnapping. He and the local board are defendants in a lawsuit brought by former employees alleging a hostile work environment and improper termination. In an unrelated incident, an employee of the Sumter County DSN Board has been charged with breach of trust with fraudulent intent after allegedly bilking the organization of $75,000. Whether coincidental or systemic, the nature and number of charges connected to the special needs agency are significant enough to warrant a closer look.

Even before the most recent charges, a group of lawmakers had decided there was sufficient cause to seek an audit of the entire department by the Legislative Audit Council. The state audit is expected to be finalized later this year.

The state Department of Disabilities and Special Needs serves those residents who have development disabilities, autism, head or spinal cord injuries or mental retardation. The state department, which opened in 1967 as the Department of Mental Retardation, acts as an umbrella to 39 local disabilities and special needs boards that serve the state's 46 counties, including Sumter County. The Sumter County board employs about 275 full- and part-time workers and serves about 600 clients. The board provides a variety of services, such as early intervention to help families assess children from birth to age 6; individualized rehabilitation to help clients have greater independence; helping clients find jobs; supervised living for adults able to live on their own; and community training homes for those who need a little more assistance. The board also hosts camps during the summer months. The Sumter agency was established by state law and county ordinances and is governed by a seven-member board, whose members are appointed by the governor upon recommendation of the local legislative delegation.

North Carolina

News & Observer, February 24 – March 2, 2008

Mental Disorder: The Failure of Reform

 

The series focuses on the aftermath of the 2001 mental health reform including aggressive deinstitutionalization, including findings of extensive financial fraud, astronomical community costs, and compromised treatment. It was predictable – people were displaced from psychiatric hospitals before community services were in place, costs were underestimated, privatization opened the door for opportunistic providers who took advantage of every loophole (and there were many). As a result treatment suffered and costs skyrocketed. According to the News & Observer, in January 2005, the state told the federal government those two services, community support for children and community support for adults, would cost less than $5 million a month. By February 2007, when the Health and Human Services accountability team started an audit, the monthly bill was $93.5 million. The full series can be found at: http://www.newsobserver.com/2789/story/962049.html and includes these articles: Part 1: Reform wastes millions, fails mentally ill; Part 2: Companies cash in on new service; Part 3: Serious mental therapy fades; Part 4: Hospitals, nearly forgotten, teem with abuse; Part 5: Patients die from poor care.

Oregon

The Oregonian, November 4 – 10, 2007

After Fairview: How Oregon fails disabled adults

In the seven years since Fairview Training Center closed, more than 2,000 developmentally disabled adults have been robbed, beaten, raped, neglected or cursed, most often by their state-paid caregivers. Clients have choked on food, suffered violent injuries or become ill with treatable health problems that caregivers ignored or missed. In half the deaths investigated by the state, The Oregonian found that caregivers didn’t recognize clients’ serious health problems or act quickly enough to call 9-1-1. Their stories, archived in a state database and detailed in hundreds of confidential files obtained by The Oregonian, show that one of every five clients in state-licensed foster or group homes have been victims of at least one serious instance of abuse or neglect during the past seven years. The officials who oversee Oregon’s 8,000 caregivers and 1,200 adult group and foster homes say they are working to protect clients. But the state has failed to close troubled homes, even after clients were raped or died. Officials also have been slow to adopt reforms in areas they acknowledge would make the system safer.

http://oregonianextra.com/grouphomes/story_main_01.html

California

CBS 5 Investigates, November 8, 2007 Bay Area Homes For Disabled

A CBS 5 Investigation raises questions about the quality of care in some for-profit group homes for the developmentally disabled. Our investigation begins with an incident in 2004 that happened at one Bay Area group home. Inside that home, Theresa Rodriguez, a woman with mental and physical disabilities had been badly burned. The home was run by RCCA Services. As a result of the scalding, the house was cited and fined by the state. And CBS 5 Investigates found that home was just one of three RCCA facilities in San Mateo County cited by the state for failing to meet federal standards. Two of those were cited for insufficient staffing, among other problems, and one was forced to shut down. CBS 5 Investigates also discovered the state recently found deficiencies at two other RCCA homes in San Jose. In January 2007, inspectors cited one of them, a home called Purple Hills, for failing to provide "continuous active treatment" for fully half of its clients.

Washington, D.C.

The Washington Post, September 15, 2007

Promises, Promises: The District has three months to show it can help its developmentally disabled residents.

The Washington, D.C. government has made a lot of big promises about improving the treatment of the mentally retarded men and women in its care. Over the years, it has broken most of those promises, and the result has been the neglect, mistreatment and even the deaths of many vulnerable people. Now a judge is demanding that the District keep some little promises. If it fails, it will be clear that the District is simply incapable of providing proper care, and the court should feel compelled to take over the system. U.S. District Judge Ellen S. Huvelle, presiding over the 31-year-old class action lawsuit involving onetime residents of the notorious Forest Haven facility, has made no secret of her aggravation over the lack of progress in protecting the health and safety of developmentally disabled residents. Decrying "the tortured history" of the case, Judge Huvelle in March found D.C. officials in "systematic, continuous, and serious noncompliance with many of the court's orders." Still, she has resisted placing the Department of Disability Services in receivership. This week, she issued an order that refreshingly focuses on tangible steps to improve the health and safety of the some 650 surviving members of the plaintiff class. The beauty of the judge's approach is that it compelled the city and the plaintiffs to come up with specific goals that can be accomplished in the next 90 days. There's nothing pie in the sky about the list that Judge Huvelle accepted this week. It includes recruiting five providers of high-quality residential care, expanding a medical clinic program, figuring out which homes really are substandard, and identifying and treating the 25 most medically fragile residents. Key to recruiting and retaining qualified providers is the District's promise to increase the rates it pays. Cost-of-living increases inexplicably were frozen for five years. That D.C. Mayor Adrian M. Fenty (D) is agreeing to come up with the $4.7 million city share (Medicaid and Medicare would pick up the rest of the $15.6 million tab) is a hopeful sign of his administration's commitment to reform.

https://www.highbeam.com/doc/1P2-7597510.html

California

The Orange County Register, February 7, 2007     Taped Attacks Spur Outcry

A caregiver worked at a dependent-care facility for at least five months before a cellular phone surfaced that contained videos police said show him beating and taunting developmentally disabled men who cannot speak. "This isn't an isolated incident," Anaheim police Detective Cherie Hill said. "I think there's a lot more going on than we already know." State-licensed care facilities are required to run background checks on potential employees, but many aren't licensed and aren't required to do such checks, Hill said. "What else happened that wasn't taped?" Anaheim police Sgt. Rick Martinez asked. "Nobody would've ever known had it not been for that video."

http://www.ocregister.com/2007/02/02/taped-attacks-spur-outcry

Kentucky

The Lexington Herald-Leader, January 7, 2007

Deaths largely not investigated - Critics see gaping hole in care of state's mentally disabled

The woman, whose name was not released, is one of thousands of mentally disabled people who received care in group homes paid for by Medicaid. And she is one of 146 people who died over the past five years in the Supports for Community Living Home and Community-Based waiver program, a network of 137 agencies that provides community-based services such as housing and counseling to 2,874 mentally disabled Kentuckians. Since 2001, the state has initiated on-site investigations in only 18 of the 146 deaths in the community living program, a Herald-Leader investigation found. Long-term mortality rates for mentally disabled people in community facilities are unknown. The department only started tracking deaths of the mentally disabled in the community in 2001. Thirty-eight of the 146 deaths since then were unexpected or sudden, according to the reports providers sent to the department. If any of those 146 people had died in a state institution in Kentucky their deaths would have been investigated by the Office of Inspector General with the Cabinet for Health and Family Services, and Kentucky Protection and Advocacy would have been notified. A mortality review board, made up of doctors and other specialists, also reviews all deaths in institutions. But the same review process doesn't apply when deaths occur in Kentucky's privately run, community-based care facilities. In those cases, only deaths deemed suspicious trigger an on-site investigation. The lack of in-depth investigation of deaths in the community is a gaping hole in Kentucky's protection of the mentally disabled, said Marsha Hockensmith of Kentucky Protection and Advocacy.

California

The Sacramento Bee, January 1, 2007

Conflict is boiling over care: The death of a severely retarded man is the latest flashpoint in a battle between families and the state over its developmental centers

Donald Santiago's mother and sister didn't want the state to move him out of the Agnews Developmental Center in San Jose, the state hospital where he had lived for nearly four decades. But state officials got a court order to move him into Justin's Home in Union City in 2005 over his family's objections. Santiago, 63, died of pneumonia in a Fremont hospital three weeks ago. The death of Donald Santiago -- being investigated by the California Department of Health Services -- is one more flashpoint in a wrenching battle between some parents of Agnews residents and the state, which has been under legal pressure to close its institutions and integrate residents with disabilities into their communities. Following changes in state law, the number of people living in developmental centers in California has dropped from a high of more than 13,000 in the 1960s to about 2,900 today. Three developmental centers have been shut down. Agnews, one of five remaining state centers for people with developmental disabilities, is slated to close in 2008. Only 261 residents remain. Some family members say they fear the state is hastily moving people into existing community homes that are ill-prepared to care for the severely disabled and don't have medical staff on-site, as Agnews does. Donald Santiago had the mental capacity of a 2-year-old and a vocabulary of only a few words, according to his sister, Angie Abrue of Placerville. But the state argued that Santiago had expressed a desire to leave Agnews in a 2005 court hearing before a Santa Clara Superior Court judge. Brian Boxall, president of the Association for the Mentally Retarded at Agnews, a group representing families, said the court system never should have ordered the move in the first place. "My sense of anger is most focused on the judge, the (district attorney) and the public defender who all orchestrated his placement knowing that his group home operator had these kinds of citations," Boxall said. "In that respect, Donald really was a victim of the system." Eileen Goldblatt, whose organization has assisted others in getting court orders but was not involved in Santiago's case, sees it differently. "It was our understanding that he got to court because he really wanted to move," she said. "It's tragic that he then died. It's also nice that he got to move after so many years of living in an institution."

Continue to 2003 - 2006

Widespread Abuse, Neglect and Death in Small Settings Serving People with Intellectual Disabilities - 2011 & 2012

NOTE: LINKS IN SOME OLDER ARTICLES MAY NO LONGER BE ACTIVE

Washington

The Seattle Times, December 18, 2012

Report: State ignoring abuse at group homes

A watchdog organization says the state is failing to protect some of Washington's most vulnerable people — those with developmental disabilities who live in group homes. Disability Rights Washington says overworked investigators focus on rule compliance, often overlooking the substance of complaints.

Of almost 3,000 abuse, neglect or safety-violation complaints filed in the past two years, more than 1,000 were closed by the Department of Social and Health Services (DSHS) without any investigation, according to DRW.

Even those cases that were opened often sat for weeks or months before an investigation began.

“What we found is an abuse-response system that is fatally flawed,” said David Carlson, DRW’s director of legal advocacy. “We need a safety net that keeps people safe. DSHS is not doing that.”

http://www.seattletimes.com/seattle-news/report-state-ignoring-abuse-at-group-homes/

Texas

Fox News, August 16, 2012

House Fire At Special Needs Group Home Kills Three

Arson investigators are on the scene of a house fire right now sifting through what`s left of a group home for special needs men. The San Antonio Fire Department says the fire started just before 11 pm. One person died inside the house and two others died at the hospital. There is one other person being treated at the hospital and they are in stable condition. Fire investigators say they don`t know how the fire started. Neighbors called in the fire after seeing flames coming from the home last night. Several residents were trapped in the home as the fire spread. There are reports that some of the residents were jumping from windows to save themselves. 13 mentally disabled adults were living at the home at the time.

Kentucky

Associated Press, July 22, 2012

Ex-group home employee sentence to 20 years

A former group home employee has been sentenced to 20 years in prison in the beating death of one of the home's residents. Tyler Brock, who is 22, pleaded guilty in June to second-degree manslaughter in the 2011 death of 35-year-old Shawn K. Akridge, a disabled resident at a group home. Judge Hunter Daugherty called the attack "heinous" and said it "defies explanation" on Friday before issuing the sentence.

Illinois

Belleville News-Democrat, June 27, 2012

Hidden suffering, hidden death: State agency won't investigate after 53 deaths of those in its care

The state agency created to prevent neglect and abuse of disabled adults who live at home rejects hundreds of hotline calls for help each year and doesn't investigate when people die after severe mistreatment. The Office of the Inspector General for the Illinois Department of Human Services received broad powers through legislation in 2000 that expanded its responsibility for protecting physically and mentally disabled people who live outside community facilities and state institutions. The OIG, which operates independently, investigates neglect and abuse complaints made to a statewide hotline operated by the agency. But when the subject of a hotline call is hospitalized and dies soon after, the OIG closes the case without investigating the circumstances surrounding the death because of the agency's interpretation of state law. According to OIG documents, the agency is prohibited from investigating the moment a death occurs. The OIG considers such an investigation a "service," and the dead are "ineligible for services" under the agency's interpretation of Rule 51 -- a legislative directive that governs the Adults with Disabilities Abuse Project, the OIG documents state. 53 cases since May 2003 that fit this pattern: Neglect or abuse of a critically ill, disabled adult in their home, followed by an ambulance ride to an emergency room and death, usually within a few days or weeks. In some cases, disabled, often critically ill people were starved, left to suffer in pain, denied medication or forced to lie for days in their own feces and urine. Some who died were unable to move when ambulance attendants found them.

http://www.morrisherald-news.com/2012/06/27/hidden-suffering-hidden-death/azbkysa

Connecticut

Hartford Courant, June 15, 2012

State Investigating More Charges Against Group Homes Operator

An organization that receives about $2 million per year in public funds to care for developmentally disabled people in several group homes in Hartford and Glastonbury is again under state review over allegations of poor care. In an unsigned letter to the executive director of Humanidad Inc. and to the state Department of Developmental Services, a group of Humanidad employees allege that staffing shortages are creating a dangerous situation, that the homes lack basic resources such as groceries and activity programs, and that clients in general are receiving subpar treatment.

http://articles.courant.com/2012-06-15/health/hc-humanidad-group-home-0616-20120615_1_humanidad-dds-abuse-or-neglect

Virginia

The News & Advance, June 11, 2012

Investigator sees problems in private group homes

A Lynchburg-based investigator for the state Department of Social Services, testifying in a federal court hearing Friday, opened a window into the little-viewed world of what can happen inside Virginia’s system of caring for people with disabilities. The investigator, Ted Campbell, said he has encountered incidents involving unexplained injuries to intellectually disabled people, caregivers who are fired and investigations cut short. Among the incidents Campbell described in testimony before U.S. District Court Judge John Gibney was one involving a woman who had moved from Central Virginia Training Center in Madison Heights into a privately operated home within the past few years. She left the training center in good health, but a couple months later was found to have a large bedsore that hadn’t been cleaned. Investigators’ attempts to follow up on the case ran into roadblocks. The incident is a single case involving just one of the 8,000 or more Virginians with intellectual disabilities who have left training centers over the past several years to receive care from other providers. A report from Adult Protective Services, a branch of the state Department of Social Services, indicated 1,200 residents were victims of abuse or neglect during fiscal year 2011 in privately operated nursing facilities, assisted-living facilities and other living places. That report did not specify which of those victims were former residents of Virginia’s training centers.

http://www.newsadvance.com/news/local/investigator-sees-problems-in-private-group-homes/article_30ba6823-a1ef-5cd0-88b4-78e6f3e0031a.html

Virginia

WSLS-10 (NBC), May 23, 2012

Home caretaker charged with abusing disabled patient in Grayson County

Her title was in-home caretaker with Wall Residences, Inc. (a 10 year employee), but Melanie Melton was doing anything but her job, according to sheriff’s officials. Court documents show she was indicted on charges of abuse against an incapacitated person and investigators highlight that the abuse was, “So gross, wanton, and culpable as to show a reckless disregard for human life.” The person Melton was caring for was “dehydrated from improper feeding, and had unattended bed sores so bad they turned to gangrene,” said Chief Deputy Mike Hash, with the Grayson County Sheriff’s Department. The abuse is said to have happened between April 1 and April 25, at Melton's home in the Baywood Community of Grayson County. We went to her house to ask her about the charges, but no one answered the door. She turned herself into authorities more than a week ago after being indicted by the grand jury. The victim was treated at a nearby hospital and is said to be recovering.

Georgia

Atlanta Journal-Constitution, May 22, 2012

Lax enforcement in personal care homes

Deficiencies in care, living conditions and record-keeping have piled up in scores of Georgia personal care homes (35,000), with the state rarely shutting down violators or levying heavy fines (just 544 cases with an average fine of $500), The Atlanta Journal-Constitution has found. An analysis of five years’ worth of inspections found numerous troubling instances — from live cockroaches in the kitchen of one home to another in which eight residents were out of medication. Unlike nursing homes, personal care homes do not provide intensive medical care. Instead, they provide lodging, food, bathing and other grooming services, and can help residents manage their medications. Many are in individual homes in residential neighborhoods. Common problems included residents who were so frail or ill that they needed services beyond those provided by personal care homes. Other common issues were failure to document required employee training, failure to conduct regular fire drill evacuations, failure to obtain background checks on employees and inadequate staffing. But some cases were far more serious, leading to resident death.

http://www.ajc.com/news/local/lax-enforcement-personal-care-homes/N1dDdFaq3dTGv4UsjxcLPM/

New York

New York Times, May 8, 2012

Monitoring Care for the Disabled

 The stories of abuse, suffering and unexplained deaths among those sent to homes for the disabled in New York State are horrifying. A worker sits on an autistic boy and crushes him to death. Another worker sexually abuses a 54-year-old disabled woman. A quadriplegic drowns as an aide leaves him in a tub of water. As reported in The Times over the last year, there have been numerous cases of abuse and at least 1,200 deaths attributed to unnatural or unknown causes in publicly financed homes for the disabled in the last decade. Many cases have barely been investigated, with incompetent workers often being moved to a different facility, without being prosecuted.

http://www.nytimes.com/2012/05/08/opinion/monitoring-care-for-the-disabled.html

Virginia

Virginia Attorney General's Office news release, May 7, 2012

Martinsville group home owner guilty in abuse, death of Parkinson's patient

Attorney General Ken Cuccinelli announced today that Richard C. Wagoner, Jr., was found guilty of abuse and neglect of an incapacitated adult that resulted in death. Wagoner owned and operated The Claye Corporation, a group home for adults in Martinsville. The victim, Joseph Tuggle, 57, an intellectually disabled adult suffering from Parkinson's disease who received care in a group home operated by The Claye Corporation, was placed under a faucet running scalding water and suffered second- and third-degree burns on his legs, face, buttocks, and arm. Ten days later, Mr. Tuggle was found dead in his bed with scabbed burns. The medical examiner determined that Tuggle died from sepsis and pneumonia secondary to thermal injury. His death was ruled as a direct result of the injuries he sustained on February 8, 2011. Caregivers failed to call 911 and, at Wagoner’s orders, did not transport Tuggle the hospital. "Not only did Wagoner fail to properly prevent conditions in which an incapacitated and helpless patient could suffer from such abject neglect and abuse, he also explicitly and deliberately deprived Mr. Tuggle of the care he needed to survive these injuries," said Virginia’s Attorney General Ken Cuccinelli. "This kind of gruesome irresponsibility and depravity is despicable, and it's my hope that today's announcement will send a clear, stern message that this behavior simply will not be tolerated in Virginia." The case was investigated by the Martinsville Police Department and the attorney general's Health Care Fraud and Elder Abuse Section. The Elder Abuse section specializes in investigating allegations of abuse and neglect of incapacitated adults, employing both nurse investigators and criminal investigators to assist localities in determining the root cause of injuries and holding responsible persons accountable for their crimes.

Illinois

Associated Press, May 5, 2012

Verdict in Illinois Group Home Death Leaves Questions

The violent death of Paul McCann led to improvements in how Illinois intends to protect the mentally disabled in group homes, but the trial of the first man accused of killing him suggests to some that justice and equality are still a challenge for them. Jurors trying the case of caretaker Keyun Newble, 26, charged with killing McCann at an eastern Illinois group home, heard about the brutal injuries the 42-year-old suffered. He had 13 broken ribs and lungs filled with fluid, part of what a doctor called "massive internal injuries" suffered as apparent punishment for stealing cookies. Newble was charged with murder, which would have sent him to prison for at least 20 years. But the judge allowed the option of a lesser charge, involuntary manslaughter, and the jurors took it, making him eligible for a sentence as short as three years. For advocates of the disabled, the April 27 verdict was insulting. McCann's family reacted with confusion. Both are trying to make sense of the verdict's message just as officials are trying to better safeguard the lives of disabled people who need care from the state. Gov. Pat Quinn has made it a priority to close institutions for disabled people like McCann and transfer them into situations closer to their families, such as in group homes. But the effort has drawn criticism from some affected families.

http://thesouthern.com/news/local/verdict-in-illinois-group-home-death-leaves-questions/article_25fb2b6c-96f5-11e1-badc-0019bb2963f4.html

Massachusetts

COFAR Blog, May 4, 2012

Commonwealth’s DPPC faults care plan in group home resident’s death

A state investigative agency (the Disabled Persons Protection Commission) has concluded that a Tyngsborough group home resident died last year as a result of having ingested an inedible object, and that there was sufficient evidence to conclude that his death was due to a lack of adequate supervision by caregivers. The 50-year-old man, who had formerly lived at the Fernald Developmental Center, had reportedly ingested a plastic bag. The July 6 death of the resident is one of three cases of death involving former developmental center residents, all men in their 50s. In both of the sudden death incidents, the men had been transferred to state-operated group homes operated by Northeast Residential Services, a division of the Department of Developmental Services. DDS has refused to discuss or provide any information about these deaths, citing confidentiality and privacy regulations. In a third case, a 51-year-old resident of a Northeast Residential Services home died on February 7, 2012 after having been sent back to his residence twice by Lowell General Hospital. That man had formerly lived at the Fernald Center as well.

https://cofarblog.wordpress.com/2012/05/04/dppc-faults-care-plan-in-group-home-residents-death/

Texas

Dallas Morning News, May 4, 2012

Group homes need city standards in Dallas

City Councilmen are considering reforms to improve the quality of life of individuals in group home care. Calls for finally moving beyond the status quo of just regulating zoning and building code violations and do something to ensure that these vulnerable citizens have a decent place to live are being debated. Council members discussed how poorly run group homes are one of the worst problems in their districts, noting that some operators in southern Dallas are in “the business of housing,” that is, caring more about making money off needy residents than in providing services. Other council members and Mayor Mike Rawlings also seem to understand that the city can no longer ignore the mediocre care, crowded sleeping quarters and shoddy facilities that characterize some of the 300-plus group homes in Dallas. City staffers, however, appear to be resisting the ordinance. As things stand, too many group home residents here lack access to decent services, live in facilities where operators take their money and give them little to live on, and confront drugs or violence in their quarters. These residents are the ones who too often are wandering the streets, panhandling and sometimes becoming a menace to themselves and others.

Louisiana

Advocacy Center, March 20, 2012

Investigation Reveals Serious Neglect at Group Homes Across State

The Advocacy Center has released the results of a three year investigation into conditions at group homes for people with intellectual and developmental disabilities across the state. The report, “When A House Is Not A Home: An investigation into conditions, care, and treatment in select group homes for people with intellectual disabilities in Louisiana,” reveals that residents in the surveyed group homes live in dismal, unsanitary surroundings, they learn very little and have limited exposure to the community. These residents experience problems with receiving appropriate and timely health care, they face poor transportation opportunities, are provided with unhealthy and unappetizing meals and generally lead a life filled with meaningless daytime activities and no chance of employment. According to Lois Simpson, Advocacy Center Executive Director, “Thirty years ago, when group homes for people with disabilities, were first conceptualized, they were supposed to be family-like, comfortable environments where people with disabilities could live and be a part of the greater community. Instead, many of these homes exist as isolated, poorly maintained, inadequately staffed, and unsafe environments where people merely exist.”

Continue to 2007 - 2010

Widespread Abuse, Neglect and Death in Small Settings Serving People with Intellectual Disabilities - 2013 & 2014

NOTE: LINKS IN SOME OLDER ARTICLES MAY NO LONGER BE ACTIVE

Oklahoma

17 Deaths Raise Questions About Care Of Oklahoma Developmentally Disabled

November 1, 2014

Adwatch

The deaths of 17 developmentally disabled people transferring or already transferred out of two large state-run institutions are raising questions about whether the closing of the centers put residents' health at risk.

The deaths occurred after the state decided in November 2012 to shutter the facilities in Enid and Pauls Valley over the objections of some of the residents' guardians and parents. Almost all of the nearly 230 adult residents were to move to small, privately owned "community homes," where services are offered by various providers.

State Sen. Patrick Anderson, R-Enid, said he wants to know whether the impending closure of the facilities and the residents' transition into community homes contributed to the deaths.

Anderson wrote a letter to Attorney General Scott Pruitt on Oct. 24, one day after the most recent death. He called for a review of the deaths, which occurred in 2013 and 2014. The residents began moving out of the Northern Oklahoma Resource Center of Enid, or NORCE, and the Southern Oklahoma Resource Center in Pauls Valley, or SORC, in March 2013.

Among those who died, seven were living at NORCE, two were living at SORC, and eight had transitioned into community homes.

By comparison, there were seven total deaths at NORCE and SORC in 2012, four in 2011 and one in 2010, at the Enid facility, state officials said. The deaths in 2013 and 2014 occurred as the population of residents and staffing levels were being reduced.

http://m.newson6.com/story.aspx?story=27183441&catId=112042

New York

Sex offenders in group homes, July 31, 2014 WHEC News (NBC)

 Convicted sex offenders moved quickly into neighborhood group homes. A dozen sex offenders had been staying at the Monroe Developmental Center in Brighton until the state closed it down. News10NBC tracked seven of those sex offenders to two group homes in West Seneca with families living on the same street. News10NBC is learning how many times police have been called to those group homes since the sex offenders moved in. News10NBC discovered since the beginning of the year, police have been called to two group homes dozens of times. On two occasions, the calls were for sex offenders who had gone missing.

(The link to this article is no longer active)

Georgia

Mentally disabled suffer in moves from Georgia institutions: State unlikely to meet deadline from federal settlement    June 21, 2014

By Alan Judd, Atlanta Journal-Constitution

482 people have been deinstitutionalized since 2010. About three-fourths of the facilities have been cited for violating standards of care or investigated over patient deaths or abuse and neglect reports since 2010. Officials documented 76 reports of physical or psychological abuse, 48 of neglect, and 60 accidental injuries. In 93 other cases, group home residents allegedly assaulted one another, their caregivers or others.   Forty people died after moving into group homes. At least 30 of those deaths had not been expected.

http://alanjudd.wordpress.com/2014/07/10/mentally-disabled-suffer-in-moves-from-georgia-institutions/

Wisconsin

Department of Human Services Statement of Deficiencies and Plan of Correction Watertown Police Department Incident Report

May 9, 2014 and June 4, 2014

The Wisconsin Department of Human Services (DHS) rewarded an Intermediate Care Facility $12,000 for each resident moved out of its Intermediate Care Facility to one of its group homes if the resident did not die within the first 6 months of being transferred.

Two residents did die.

Chuck died 3 days after his transfer after falling down the steps while strapped and seated in his wheelchair. The DHS investigated but not fine was issued. Theo only penalty for Chuck’s death was to install a lock. See, https://www.forwardhealth.wi.gov/prod/kw/dqa/CMTX11POCS.PDF.

Another resident died of pneumonia about 2 weeks after being transferred. Because the death was deemed to be of natural causes, DHS did not investigate at all.

Georgia

Report: Developmentally disabled need better care, April 10, 2014 Georgia Health News

A U.S. Justice Department Settlement Agreement with the State of Georgia calls for the transfer of nearly 1,000 residents with intellectual and developmental disabilities (I/DD) and the closure of all state-operated ICFs/IID, and the transition of 9,000 individuals with mental illness from facility-based care. Hundreds of individuals have been transferred a result of the October 2010 Settlement Agreement. An independent reviewer now reports that Georgia is failing to provide adequate supervision of individuals with developmental disabilities who are moved from state hospitals to community group homes. The reviewer, in a report dated March 23, says there is an “urgent need to ensure competent and sufficient health practitioner oversight of individuals who are medically fragile and require assistance with most aspects of their daily lives.” The reviewer, Elizabeth Jones, notes in the report that two individuals with developmental disabilities died shortly after being moved from Southwestern State Hospital in Thomasville, which recently closed, to community settings. The report also points out that state officials terminated three providers of services for poor quality of care.

Related Georgia News: In February 2014, the Georgia Department of Behavioral Health & Developmental Disabilities Office of Quality Management released its Annual Quality Management Report finding that, in 2013, there were 82 unexpected deaths, 1,200 hospitalizations, 318 incidents requiring law enforcement services, 305 individuals who were expectantly absent from a community residential or day program, and 210 alleged instances physical abuse of mentally ill and developmentally disabled individuals.

https://dbhdd.georgia.gov/documents/georgia-quality-management-system

Tennessee

State Fights back against abuse of disabled adults (“Broken Trust” series)

The Tennessean, February 27, 2014

The beating of an intellectually disabled young man by his caretaker, captured in disturbing cellphone video footage obtained by The Tennessean, is a rare occurrence, "something so egregious and so horrendous it bothers every one of us to know it's occurred," the Department of Intellectual and Developmental Disabilities' chief attorney said Wednesday. Yet, problems have increased significantly among former residents of Tennessee’s developmental centers.

National

U.S. Department of Justice’s Bureau of Justice Statistics

U.S. Census Bureau’s Crime Victimization Survey, February 25, 2014 Crime Odds Nearly Triple For Those With Disabilities

The U.S. Census Bureau’s National Crime Victimization Survey found that there were 1.3 million nonfatal violent crimes against persons with disabilities in 2012, up from the roughly 1.1 million estimated for 2011, reported the U.S. Department of Justice’s Bureau of Justice Statistics. The Survey asks about experiences with crime — whether reported or unreported to police — among those age 12 and older living in the community.

Individuals with disabilities encountered violent crime at nearly three times the rate of those in the general population, the report found. Simple assaults were the most commonly cited crime against this group followed by robbery, aggravated assault and rape or sexual assault.

Those with cognitive disabilities had the highest rate of victimization and about half of violent crime victims with disabilities had multiple conditions, the Bureau of Justice Statistics said.

http://www.bjs.gov/content/pub/pdf/capd0912st.pdf

Tennessee

When people with intellectual disabilities leave facilities, results can fall short (“Broken Trust” series)

The Tennessean, February 10, 2014 

An audit by the state comptroller last fall, and a federal court monitor’s report tracking former residents of three of the state’s institutions, found that troubling problems trail many of the state’s formerly institutionalized residents. While the state saves millions of dollars each year by serving people outside institutions, officials at private agencies concede that a lack of adequate state funding has at times hampered their efforts to help people achieve the best quality of life. Identified problems include 257 reported allegations of abuse, neglect and exploitation; isolation; delays in doctor-recommended treatments in some cases and “numerous instances” of inadequate dental care; and a dramatic increase in deaths after people leave institutions (deaths among people with intellectual disabilities transferred from institutions nearly doubled between 2009 and 2013, from 19 to 34); incarceration; and missing former residents.

Georgia

Georgia Department of Behavioral Health & Developmental Disabilities, February 2014 Annual Quality Management Report for January 2013 – December 2013

Outcomes due to Settlement implementation, which requires the downsizing and closure of facilities for people with intellectual and developmental disabilities and mental illness, are troubling. According to the Georgia Department of Behavioral Health & Developmental Disabilities’ "Annual Quality Management Report," January 2013 - December 2013, there have been 1,200 hospitalizations of individuals (mental health and developmental disabilities) residing in community residential programs; 344 individuals requiring treatment beyond first aid; 318 incidents requiring law enforcement services; 305 individuals who were expectantly absent from a community residential or day program; and 210 alleged physical abuse of an individual. A total of 82 unexpected deaths of individuals with mental illness and developmental disabilities were reviewed during 2013.

National

Reader’s Digest, February 2014 (reprinted from Mother Jones, May/June 2013) Schizophrenic. Killer. My Cousin.

It's insanity to kill your father with a kitchen knife. It's also insanity to close hospitals, fire therapists, and leave families to face mental illness on their own. "You can call the police," the deputy director of Sonoma County's National Alliance on Mental Illness (NAMI), David France, said when I asked him what options are available to a parent whose adult child appears to be having a mental breakdown. "The police can activate resources," like an emergency psych bed in a regular hospital, or transport and admission to a psychiatric hospital in a county that, unlike Sonoma, has one. But only if the police decide your child is a danger to himself or others can they arrest him with the right to hold him for three days—what in California is called a 5150, after the relevant section of state law. Otherwise you can be turned away for lack of space even if your loved one is willing to be admitted, or be left no good options if they're not. Ninety-two percent of the patients in California's state psych hospitals got there via the criminal-justice system. Timeline: Deinstitutionalization And Its Consequences: How deinstitutionalization moved thousands of mentally ill people out of hospitals - and into jails and prisons. Map: Which States Have Cut Treatment For the Mentally Ill the Most?

http://www.motherjones.com/politics/2013/04/timeline-mental-health-america

http://www.motherjones.com/politics/2013/04/map-states-cut-treatment-for-mentally-ill

California

Police: Embezzlement from disabled went on for years

The Press Democrat, February 22, 2014

For at least seven years, embezzlement suspect Larry Gene Sark forged signatures onto the backs of thousands of checks made out to developmentally disabled clients of the North Bay Regional Center, a case management agency which arrange for community-based services for people with developmental disabilities. He then deposited them (totaling more than $400,000) into his personal bank account, according to a Santa Rosa police investigation. The money was taken from 51 Sonoma County residents.

California

Parent Hospital Association / Sonoma Developmental Center, More Information Needed on Level of Abuse and Neglect at Community Homes    February 20, 2014

Concern is growing among family members and advocates that the safety of those developmentally disabled folks still resident in California's state-run developmental centers is threatened -- not because of conditions at the centers but by the prospect losing the centers' protections when residents are moved into the community.

http://blog.parenthospitalassociation.org/2014/02/more-information-needed-on-level-of.html

California

L.A. Suit Accuses Unlicensed Care Facilities of Abuse

Los Angeles Times, February 18, 2014

Los Angeles City Atty. Mike Feuer has filed a lawsuit against the two unlicensed assisted-care facilities and their owners, a pastor and his wife, for allegedly abusing their physically and mentally disabled residents by forcing them to live in "deplorable, overcrowded and substandard living conditions" and taking the residents' government benefits." Among the allegations are: Swarms of flies filled the living areas. Broken furniture was scattered, bedroom doors were missing and plaster was falling off the walls, according to court documents.

Some residents slept in bunk beds crowded into small rooms with 1-inch pads instead of mattresses. One resident lived in a "storage room" and others in an attic.

http://www.latimes.com/local/la-me-care-abuse-20140219-story.html