Too little too late: text only


A call to end tolerance of abuse and neglect 

Disability Rights Washington & Columbia Legal Services

November 1, 2012


EXECUTIVE SUMMARY   

BACKGROUND  
Who is Disability Rights Washington? 
Who is Columbia Legal Services?  
What is the purpose and scope of this report? 
What is Supported Living? 
Why are state abuse and neglect investigations important? 

WASHINGTON’S FAILURES TO PROTECT SUPPORTED LIVING CLIENTS  
What problems did DRW and CLS’s monitoring expose? 
What did the nationally recognized experts find? 

RECOMMENDATION NO. 1     
Mandate Prompt Investigations of Abuse and Neglect 

RECOMMENDATION NO. 2  
Allocate Sufficient Investigators to Ensure Timely and Thorough Investigations 

RECOMMENDATION NO. 3    
Make Supported Living Provider Requirements Specific 

RECOMMENDATION NO. 4     
Enhance State Regulatory Authority to Enforce Provider Certification Requirements 

RECOMMENDATION NO. 5  
Establish an Interdisciplinary Committee to Comprehensively Review Client Deaths 

APPENDIX A:  Curriculum Vitae of Dr. Nancy K. Ray, Ed.D and Dr. Sue Gant, Ph.D
APPENDIX B:  Dr. Nancy K. Ray, Ed.D Expert Reports
APPENDIX C Dr. Sue Gant, Ph.D Expert Report

_________________________________________________________________________________

EXECUTIVE SUMMARY


Overview

Individuals with developmental disabilities face unacceptable risks of repeated physical harm, psychological trauma, sexual assault and even death because the Department of Social and Health Services (DSHS) does not adequately investigate and effectively respond to abuse and neglect allegations in Washington’s Medicaid-funded Supported Living program. 

This report documents the observations of Disability Rights Washington, Columbia Legal Services, and two nationally-recognized abuse and neglect response experts.  As detailed in this report: 

  • DSHS rarely responds with timely investigations and often entirely fails to investigate when Supported Living clients are reportedly assaulted, sexually assaulted, or otherwise denied the dignity and care they need and deserve.
  • DSHS seldom holds abusive or neglectful Supported Living employees accountable or prevents them from having future contact with vulnerable adults.  
  • DSHS does not critically review or investigate most unexpected client deaths to determine whether abuse or neglect may have been a contributing factor.

Recommendations

Washington must stop ignoring the safety of the vulnerable citizens participating in the state’s Supporting Living program.  This report explains why Washington should commit to the following reforms: 

  1. Mandate prompt investigations of abuse and neglect.
  2. Allocate sufficient investigators to ensure timely and thorough investigations. 
  3. Make Supported Living provider requirements more specific.
  4. Enhance state regulatory authority to enforce provider certification requirements.
  5. Establish an interdisciplinary committee of clinicians, state officials, and stakeholders to review unexpected, suspicious, or potentially preventable client deaths.

BACKGROUND

Who is Disability Rights Washington? 

Disability Rights Washington (DRW) is a private non-profit organization that serves as the designated Protection and Advocacy agency for Washington State.(1)  Under federal law (2), every state receiving certain federal funds is required to designate an organization to serve as the Protection and Advocacy System and Washington State has designated DRW.   As a protection and advocacy agency, DRW investigates reports of abuse and neglect of individuals with disabilities, including those with developmental disabilities, and conducts advocacy to ensure that their human and legal rights are protected.  

Who is Columbia Legal Services?

Columbia Legal Services (CLS) is a nonprofit law firm that protects and defends the legal and human rights of low-income people. CLS has partnered with DRW to represent thousands of persons with intellectual disabilities to assert their rights, including the right to live safely in the community. 

What is the purpose and scope of this report?

In furtherance of DRW’s mission to “advance the dignity, equality, and self-determination of people with disabilities,” and CLS’s mission to seek justice for low-income clients through systemic change, both organizations issue this report in order to address the ongoing tolerance of abuse and neglect in DSHS’s Division of Developmental Disabilities (DDD) Supported Living program.  The primary goal for both organizations is to secure a safe community living option that effectively maintains the health and welfare of the participants who choose Supported Living services instead of institutional care. 

This report makes a series of policy recommendations for strengthening the response to abuse and neglect allegations involving Supported Living DDD clients.   Although the focus of this report is on Supported Living, the same concerns discussed in this report may be present for DSHS oversight of other kinds of community and institutional providers and applicable to law enforcement or other agencies charged with responding to abuse and neglect.  This report is not intended to be a substitute for any examinations or recommendations by any clients, advocates, task forces, or committees reviewing the incident response and oversight systems for any setting where people with disabilities are at risk of abuse or neglect. (3)

Finally, the purpose of this report is not to suggest or in any way support the idea that people with developmental disabilities ought to be institutionalized for their safety.  DRW and CLS have not recently conducted a systemic investigation into the adequacy of the response to abuse and neglect in institutions, and this report provides no basis for comparison between community and institutional services.  

What is Supported Living?

About three thousand adult individuals with developmental disabilities who could choose to live in state-run institutions have chosen to live in their own homes with the help of in-home support staff.  The people who assist them are employees of state-certified “Supported Living” provider agencies, most of which contract with DDD. (4)  DDD uses state and federal funding, primarily under the federal Medicaid program, to pay for Supported Living services. 

Supported Living clients depend on their state-certified providers to hire, train, and supervise the staff they need to assist them with everyday tasks, help them maintain safe and healthy lifestyles, and provide them with habilitation services to gain independent living skills. All Supported Living clients have a qualifying developmental disability, but many also have physical disabilities as well as co-occurring mental health conditions.  While some Supported Living clients need only a few weekly service hours, others need care and supervision twenty-four hours a day.  Many Supported Living clients have complex medical or behavioral support plans, and rely on their Supported Living providers to implement these plans to keep them safe and healthy.  

Without improvements to abuse and neglect responses, Supported Living clients will continue to be at risk. Below are three recent cases demonstrating why improvements are critically needed.
  1. On July 4, 2012, a Seattle news station reported the police found a young Supported Living client wandering near a busy intersection partially clothed, eating grass.  When the police identified the man and went to his residence, they found his Supported Living care provider passed out drunk in a dirty home littered with garbage, broken glass and an overflowing clogged toilet. (5)  Although the man’s care plan called for constant supervision, this was the third time in less than three years the man had been permitted by his caregivers to leave home without supervision and without their knowledge. The young man’s father had also noticed his son losing weight and coming to weekly family dinners with bruises and cuts the provider could not explain. Although the father speaks little English, he tried to advocate on his son’s behalf, but his complaints and concerns received little attention from the DDD case manager or Supported Living provider.  

    Without adequate state oversight of the Supported Living provider’s services, his father fears the injuries will continue to occur, or that his son will again leave his home unaccompanied.  His father lies awake at night worrying about his son wandering the streets alone, explaining in a translated statement to DRW, “I could not help but imagine what could happen to my son since he has such little ability to keep himself safe in traffic or with strangers.” 

  2. Two brothers moved out of a large institution and into their own independent homes, where they took advantage of their new and varied experiences in the community. They started doing things like taking bus rides and socializing with local shopkeepers.  Due to serious medication errors by a Supported Living Provider, one brother was hospitalized after acquiring significant brain damage and was forced to return to the institution.  The second brother remained in the community, but was hospitalized last year due to a serious medication error by the same Supported Living provider. Although this error was reported to DSHS, the state failed to investigate whether any individual employees were responsible.  Instead, DSHS investigated to determine whether the provider’s practices were compliant with Supported Living requirements.  The provider’s records documented at least six medication errors for this client occurring in the three months prior to the error that resulted in his hospitalization, yet DSHS issued no citation for failing to ensure proper implementation of his medication plans.  With no required plan of correction to address medication administration practices, the provider continued to make medication errors. Over the course of the next year, the client’s records showed seven more medication errors. 

    The third brother of the two DDD clients serves as their legal guardian.  In his statement to DRW, he explained “I fear that without proper oversight by the state, [the provider] will continue to make these same types of medication errors and that one day [my brother] will end up like [his other brother], institutionalized and completely dependent on others.”

  3. In April 2012, a Supported Living client reported to his job coach that one of his Supported Living staff had sexually assaulted him that morning. Although the allegations were reported to the state within hours, a week went by before any state investigation began. No one took the client to have an immediate medical evaluation conducted the day he reported the assault. The provider also downplayed the extent of his allegations when informing the client’s family, stating the client had alleged being “pinched” by a staff person the provider was unable to identify.  

    When the client’s niece learned he had actually reported being sexually assaulted by a named staff person, she went to check on him.  She told DRW she found he was “truly terrified.” She explained, “My family and I do as much as we can to protect [my uncle] from harm, but we have to rely on a system to swiftly and aggressively respond when something as serious as sexual assault is reported.”  

WASHINGTON’S FAILURES TO PROTECT SUPPORTED LIVING CLIENTS

What problems did DRW and CLS’s monitoring expose?

For several years, DRW and CLS have been concerned about the abuse and neglect response system for people with disabilities. (6)  Since 2010, after the death of a Supported Living client captured front page headlines in the Tacoma News Tribune, (7)  DRW and CLS have been intensively monitoring Washington’s response to allegations of abuse and neglect by Supported Living providers. With pro bono assistance from the law firm of Perkins Coie LLP, DRW and CLS reviewed a random sample of Supported Living incident reports, case management notes, investigation files, and provider records. DRW and CLS also reviewed investigation and complaint data produced by DSHS. DRW and CLS also visited and interviewed dozens of Supported Living clients living in various communities across Washington State, as well as many family members and Supported Living providers.  

Based on its monitoring, DRW and CLS reached the following conclusions: 

  • Nearly half of the abuse and neglect allegations in the records sample were never investigated by DSHS. 
  • When an investigation was actually conducted, DSHS often took weeks or months to begin reviewing serious allegations of abuse or neglect.  
  • DDD Case managers rarely made contact with clients after serious health and safety incidents were reported to evaluate their clients’ safety or verify implementation of the provider’s protection plans.
  • DSHS rarely made findings of abuse or neglect against individual employees, even with eyewitness statements documented in the state’s own investigation files.  In one case, employees reported witnessing their co-worker stomp on a client’s genitals while calling the client profane names, but DSHS did not sanction the employee or the Supported Living provider.  
  • Supported Living providers often had to make decisions about hiring, firing or retaining employees accused of abuse or neglect without the benefit of a state investigation, and were often uncertain about what DSHS expected them to do in order to protect their clients from abuse and neglect.
  • Many Supported Living clients who were dissatisfied with the quality of their services, as well as their guardians and family members, were surprised to learn there may be other options for obtaining Supported Living services from other providers.  Some believed their case managers had indicated to them they could not change providers.

What did the nationally recognized experts find? 

In 2012, DRW and CLS hired two nationally-recognized experts in abuse and neglect of people with disabilities to evaluate Washington’s responses to alleged abuse and neglect in its Supported Living program.  

Both experts, Sue A. Gant, Ph.D and Nancy K. Ray, Ed.D, have worked in other states to improve systems for protecting clients from abuse and neglect and improving community-based services. (8)  Dr. Gant specializes in program development and evaluation of services for persons with developmental disabilities. Dr. Ray specializes in the provision of monitoring services, including the design of quality assurance systems and conducting studies regarding government oversight and fiscal accountability standards of health care programs for the elderly and persons with disabilities.  

These experts issued detailed reports with their findings and supporting data, the publicly disclosable portions of which are attached with client names and confidential information omitted. (9)  Based on their independent reviews of the state’s investigation records from the June through August 2011 and Mortality Review records from June through December 2011, Drs. Ray and Gant made the following findings:

  • When DSHS conducted investigations into allegations of abuse and neglect, it rarely made any attempt to determine whether the alleged individual perpetrator committed the reported misconduct. 
  • A chronic backlog of abuse and neglect complaints overdue for investigations was critically compromising client safety and integrity of investigations.
  • Investigation and mortality review files consistently lacked adequate documentation of key evidence, such as witness interviews, medical and provider record reviews, and client observations. 
  • State records documented ongoing unresolved health and safety issues, injuries of unknown origins, and unaddressed employee errors in providing necessary care.
  • Several unexpected and suspicious client deaths were never formally investigated for potential abuse or neglect.
  • Cursory reviews by the state of potentially preventable client deaths failed to identify necessary improvements to service quality and client safety.
  • Inadequate investigation protocols and mortality review policies were cultivating inconsistency and delayed responses to serious incidents. 

RECOMMENDATION NO. 1 

MANDATE PROMPT INVESTIGATIONS OF ABUSE AND NEGLECT

Recommendation:

DSHS should be required to adhere to appropriate deadlines for initiating and completing investigations of abuse or neglect.  

Rationale

A client who has been reportedly sexually assaulted, assaulted, or dangerously neglected should not have to wait weeks for DSHS to start an investigation to determine whether there is sufficient evidence to substantiate the event or whether the Supported Living provider failed to comply with DSHS rules. For the many reasons Dr. Ray outlined in her report, it is crucial for investigations to begin promptly: 

"Why it is poor practice to delay initiation of investigations

  • Victims who have disabilities may forget what happened or be unable to recount what happened consistently.
  • Physical evidence may be lost.
  • The scene of the incident may no longer be intact.
  • Any injuries to the victim may have healed and no longer be visible.
  • Witnesses may also forget or “go missing.”
  • Alleged perpetrators may not be around any longer.
  • Alleged perpetrators have time to re-construct their “stories” of what occurred.
  • Victims feel abandoned by long delays in investigating.
  • Delays in investigating discourage reporters from filing reports."

To avoid these problems, some states require investigations of major incidents to begin within twenty-four to forty-eight hours. (10)    

By contrast, the earliest that DSHS’s policies require an investigation to begin is two working days after DSHS receives the complaint, even if the incident involves a life-threatening situation. For life-threatening incidents occurring on Fridays or holidays, an investigation prioritized for two working days could start up to four or five days after the incident was reported and still satisfy DSHS policies.

For investigations of a Supported Living provider’s alleged noncompliance with state rules, DSHS usually assigns starting deadlines of ten or twenty working days excluding weekends and holidays. These deadlines translate into two or four weeks to start the investigation. Washington, unlike most states, has a bifurcated abuse and neglect investigation system that assigns a second investigation to determine whether to find a specific individual Supported Living employee committed the alleged act of abuse or neglect. DSHS’s deadlines for starting investigations into allegations of abuse and neglect against individual Supported Living employees are even more delayed, ranging from ten to sixty days.   

In Dr. Ray’s experience, most states require all abuse and neglect investigations to be completed within 30 days. Washington only has policies on how quickly Supported Living provider and Supported Living employee investigations must be started and no requirements about how quickly investigations must be completed. Dr. Ray found that almost all DSHS investigations into allegations of Supported Living employee abuse or neglect were not completed within 30 days and a significant number were not completed within 90 days.  

DSHS must adhere to deadlines that require it start Supported Living abuse and neglect investigations more quickly and finish them more quickly. Otherwise, Supported Living clients will continue to be victimized not only by individual perpetrators and negligent providers, but by the current ineffective abuse and neglect response system.

RECOMMENDATION NO. 2 


ALLOCATE SUFFICIENT INVESTIGATORS TO ENSURE TIMELY AND THOROUGH INVESTIGATIONS

Recommendation

DSHS must have more investigators in order to timely investigate the current and growing volume of Supported Living abuse and neglect complaints.    

Rationale

Public awareness of the importance of reporting abuse and neglect has grown in recent years. The number of complaints DSHS has received about Supported Living providers has almost doubled since 2008. (11)  The number of complaints assigned for investigation of alleged abuse and neglect committed by individual Supported Living employees has nearly tripled. (12)  

In its budget-request documents, DSHS admits that Supported Living clients will be at “increased risk of harm” if the state does not allocate additional investigatory resources. As DSHS explains, the shortage of investigators is keeping DSHS from being “able to meet the increasing workload demand” and is increasing the risk that perpetrators will “continue to work in long-term care settings and [will be] less likely to be investigated.”  (13)

DSHS’s Supported Living provider noncompliance investigation Complaint Logs show a backlog of uninvestigated complaints about noncompliant provider practices.  According to these logs, investigations of alleged noncompliance by Supported Living providers frequently do not begin by the state-assigned deadlines.  As of August 2012, there were 214 complaints due for an investigation to start, but over half of these had not yet been initiated.  Most of the overdue complaints were more than 90 days past their initiation deadlines. 

As discussed above in Recommendation No. 1, DSHS should be required to start investigations more quickly. If DSHS cannot begin investigations within its current lax start dates, it cannot be expected to keep up with the growing numbers of complaints. As time goes on, more and more investigations will be compromised as additional time fades memories, erodes witness credibility, and evidence is lost or destroyed.  

In addition, Complaint Logs show that during the past two years DSHS closed a total of 2,950 complaints about substandard Supported Living provider practices.  DSHS closed over a thousand of these backlogged complaints without conducting any investigation at all, despite the fact that DSHS staff determined that the complaints involved allegations that Supported Living clients’ health and safety were at risk.  

Finally, Dr. Ray found that the state hardly ever conducts these investigations of individuals alleged to have abused or neglected a Supported Living client within any timeframe that would allow for an adequately reliable investigation. These investigations of Supported Living employee misconduct are necessary to ensure that employees who commit abuse and neglect are prohibited from working with Supported Living clients. However, Dr. Ray found that nine to twelve months after abuse or neglect was alleged, there was still no documentation of any review of employee misconduct being initiated for eighty-five percent of incidents. In a handful of cases, she found there had been an administrative record review, but no formal investigation.

These failures to initiate timely investigations of Supported Living providers or their employees demonstrate there are insufficient resources currently devoted to abuse and neglect investigations. For client safety, it is imperative that the state devote additional resources to conduct prompt and thorough abuse and neglect investigations.

RECOMMENDATION NO. 3

MAKE SUPPORTED LIVING PROVIDER REQUIREMENTS SPECIFIC 

Recommendation

The rules that specify a Supported Living provider’s responsibility to prevent abuse and neglect must be more specific and contain objective criteria for evaluating provider compliance. 

Rationale 

The certification requirements for Supported Living providers codified in Washington Administrative Code (WAC) 388-101 specify very little about what providers must include in their policies for responding to allegations of abuse or neglect, besides requiring employees to report the incident to the state. 

Washington Administrative Code 388-101-4170

(1) The service provider must develop, train on and implement written policies and procedures for:

(a) Immediately reporting mandated reporting incidents to:

(i) The department and law enforcement; 

(ii) Appropriate persons within the service provider's agency as designated by the service provider; and 

(iii) The alleged victim's legal representative.

(b) Protecting clients;

(c) Preserving evidence when necessary; and 

(d) Initiating an outside review or investigation.

(2) The service provider must not have or implement any policies or procedures that interfere with a mandated reporter's obligation to report. 

DSHS provides no specifics for providers regarding what they must actually do to meet the regulation’s requirement that they “protect clients,” “preserve evidence,” or “initiate an outside review or investigation.” The lack of specificity results in inconsistent practices and enforcement.  For example, while some Supported Living providers have policies that almost always require suspension of any employee suspected of abuse or neglect in order to protect clients, other providers have no written criteria to assess whether to suspend the employee. Some Supported Living providers conduct their own internal investigations into employee misconduct, while other providers have policies explicitly forbidding any self-investigation or internal review so as to avoid tainting official state or law enforcement investigations. DSHS has not adopted any rules requiring or forbidding internal investigations, nor has it adopted any rules that tell providers how internal investigations should be conducted. 

The Supported Living rules also do not specify the extent of Supported Living Providers’ responsibility to prevent abuse and neglect. The rules for Adult Family Homes and Supported Living providers recognize clients have the right to be free from abuse, neglect, abandonment, and exploitation. (14)   However, while Adult Family Home providers are required to “ensure” this right for each resident and “ensure that staff do not abandon, abuse, neglect, seclude, exploit or financially exploit any resident,” (15)   Supported Living rules only require that Supported Living providers “promote and protect” this right and contain no requirements for a Supported Living provider to ensure employees do not commit abuse or neglect. (16)  Protecting and promoting client rights is not the same thing as ensuring client rights.  And, while DSHS’s Adult Family Home and Assisted Living rules make providers liable for allowing misconduct by their employees, Supported Living rules do not. There is no reason why DSHS should treat Supported Living clients as second class citizens in this way. 

Finally, the Supported Living rules do not prohibit a Supported Living provider from hiring or retaining someone found to have abused or neglected a vulnerable adult. (17)  Adult Family Homes, Assisted Living Facilities, and Nursing Homes are all prohibited from doing so. (18)  Supported Living providers may employ individuals found by DSHS to have abused or neglected a vulnerable adult so long as the employee does not work unsupervised with Supported Living clients.  Nothing in the Supported Living certification regulations define who must supervise the employee, or what level of supervision is required. 

DSHS should be required to adopt rules that protect Supported Living clients to the same extent that DSHS rules protect clients in other settings.

RECOMMENDATION NO. 4


ENHANCE STATE REGULATORY AUTHORITY TO ENFORCE PROVIDER CERTIFICATION REQUIREMENTS

Recommendation

DSHS must have the same authority to enforce Supported Living rules as it does to enforce its rules for other long term care settings. 

Rationale

Adult Family Homes, Assisted Living Facilities, and Nursing Homes:

  • Pay a licensing fee that helps pay for the cost of DSHS staff who inspect and investigate them
  • Can be fined by DSHS for violating DSHS rules
  • Can have admissions halted by DSHS.

None of the above apply to Supported Living providers. All DSHS can do, short of revoking a Supported Living provider’s certification when the provider is found to have violated DSHS rules, is place the provider on “provisional certification.”  (19) Even Supported Living providers placed on provisional certification pay no additional re-certification fees or fines, despite the fact that it takes additional state resources to monitor their compliance.

Supported Living providers who violate DSHS rules usually face no significant consequences, because DSHS has no intermediate sanctions to leverage against the provider. DSHS has only the “death penalty” available to it, i.e., it can only revoke the provider’s certification. Several Supported Living providers serve hundreds of clients. Revocation of any provider’s certification would risk client displacement and loss of necessary community services, which makes these large providers, in a sense, too big to fail. Remedial measures short of full decertification must be provided. 

Other Supported Living providers serve clients who need specialized behavioral support or who are medically fragile.  DSHS would be hard-pressed to find these clients other providers. Without intermediate sanctions, DSHS has no real tools for addressing provider noncompliance. 

DSHS needs to have a range of flexible Supported Living enforcement options, just as it does with Nursing Homes, Adult Family Homes, and Assisted Living Facilities. To the extent that legislative action is necessary to permit DSHS these options, the Legislature should act in the 2013 session to provide that authority.  

RECOMMENDATION NO. 5

ESTABLISH AN INTERDISCIPLINARY COMMITTEE OF STATE OFFICIALS, CLINICIANS, AND STAKEHOLDERS TO COMPREHESIVELY REVIEW UNEXPECTED, SUSPICIOUS, OR POTENTIALLY PREVENTABLE CLIENT DEATHS

Recommendation

Washington needs a transparent and accountable mortality review process that completes thorough and accurate reviews of all unexpected and suspicious Supported Living client deaths.

Rationale

A meaningful review of Supported Living client deaths affirms the value of all human life and the principle that every individual deserves the care and treatment they need to survive – regardless of whether or not they have physical or intellectual disabilities. (20) 

Although Washington has a formal mortality review process, Dr. Gant found that Washington’s implementation of that process is so cursory and irregular that it is ineffective as a safeguard for protecting client welfare. She found that Washington subjectively selects which client deaths to review, and is not implementing a process for reviewing a consistently comprehensive set of information. For instance, over half of the mortality review files reviewed failed to even include the client’s death certificate.

Autopsies are rarely conducted to determine the cause of the unexpected deaths of Supported Living clients that the Mortality Review Committee examines. The few times when the Mortality Review Committee indicated an autopsy was conducted for client deaths occurring during the time period Dr. Gant reviewed -- between June and December of 2011 -- the Mortality Review Committee did not obtain a copy of the autopsy report or demonstrate that anyone on the Committee had reviewed the autopsy results.

However, in several client deaths the Committee reviewed, the Committee made no explicit allegations of specific Supported Living employee misconduct or provider noncompliance with DSHS rules, but the circumstances of the clients’ deaths were suspicious and raised serious questions about whether abuse or neglect had been a contributing factor (i.e. questions regarding timely access to healthcare from medical professionals, level of client’s supervision and staff attentiveness, staff reactions to finding clients nonresponsive, and validity of Do Not Resuscitate orders). However, most of these deaths reviewed by the state’s Mortality Review Committee were not investigated to rule out abuse or neglect.While the Mortality Review Committee made no referral for an abuse or neglect investigation in many cases, there was at least one death, in July 2011, where DSHS did not start an investigation into the client’s death until March 2012. In that case, DSHS substantiated a specific allegation of neglect against a Supported Living employee, but did not do so until late June 2012 -- nearly a year after the client’s death. While DSHS found the employee neglected the client by failing to immediately call 911 or perform CPR in accordance with her training, the Supported Living provider was not sanctioned or required to take any remedial action. 

One of the most glaring deficiencies in Washington’s Mortality Review process is the repeated failure to answer essential questions regarding the individual’s care and cause of death.  For example, in cases where Aspiration Pneumonia was identified as a contributing factor for the individual’s death, there was no or very little analysis of the aspiration incident that caused the pneumonia and whether providers needed to improve their precautionary measures to prevent pneumonia-prone clients from choking.  There were a number of other individuals who died completely unexpectedly in the care of their Supported Living provider, but the mortality review process made little attempt to identify the causes of their unanticipated deaths. For the death of one individual who had no serious or terminal conditions, the Mortality Review Committee listed the primary cause as “other,” which it further described as “Down Syndrome” and “Hyperlipidemia.” Down Syndrome is not a recognized cause of death and hyperlipidemia, which is essentially high cholesterol, is a condition that ordinarily, by itself, is not fatal. DSHS simply failed to analyze why a Supported Living client with high cholesterol, a condition that millions of Americans have and are treated for, died unexpectedly. 

As recommended by the Government Accountability Office (GAO) and the federal Centers for Medicare and Medicaid Services (CMS), many states implement a multi-disciplinary mortality review process to identify ways to improve client safety and service quality.  In Minnesota, for example, state law mandates that a multi-disciplinary committee of clinicians and stakeholders conduct a medical review of client deaths. (21)  Washington’s Mortality Review Committee for Supported Living client deaths is comprised solely of DSHS’s DDD employees with no participation by outside clinicians or stakeholders.

Washington’s current Mortality Review policies and process must be reformed. DSHS should be required to establish an interdisciplinary Mortality Review committee that includes outside stakeholders and clinicians. 

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(1)  RCW 71A.10.080 

(2) Developmental Disabilities Assistance and Bill of Rights (“DD”) Act, 42 U.S.C. § 15041, et seq.  

(3) There are at least two work groups currently examining abuse and neglect of vulnerable adults in Washington: the Adult Family Home Quality Assurance Panel and the Abuse/Neglect of Adults Who Are Vulnerable Study Group. 

(4) While most Supported Living provider agencies are contractors, a small minority of Supported Living clients receive services from the State Operated Living Alternative (SOLA) program.  SOLAs are operated by DDD but are certified and subject to the same regulations as the privately owned and operated Supported Living provider agencies. The SOLA program in King County was recently discussed in local news report, “Repeat Violations Threaten Shutdown of 13 state-run group homes." 

(5) "Answers sought after autistic man wanders away from drunk caretaker (KOMO News, July 4, 2012; last retrieved October 15, 2012).

(6) See DRW, “Improving Washington’s Response to Abuse and Neglect” (2008).

(7) "Justice for his brother David” The News Tribune (October 24, 2010)  and “Family Unhappy with Group Home’s Handling of Daughter” The News Tribune (October 24, 2010)  reporting heat related death and near- death allegedly due to a Supported Living provider’s neglect during a record-breaking heat wave.

(8) See Experts' Curriculum Vitae attached in Appendix A.    

(9) See appendices B and C

(10) See “Final Report of Survey of Eight States’ Adult Protection System” by Maria Greene, Senior Consultant for National Association of States United for Aging and Disabilities, p. 17.

(11) See Department of Social and Health Services 2012 Reduction Options and Supplemental Budget Request, p. 333; Department of Social and Health Services 2013-2015 Biennial Budget Long Term Care, p. 137.

(12) Department of Social and Health Services 2013-2015 Biennial Budget Long Term Care, p. 143. (References from footnote 10). 

(13) 2012 Reduction Options and Supplemental Budget Request, p. 335; 2013-2015 Biennial Budget Long Term Care, p. 145. (References from footnote 10). 

(14) WAC 388-101-3320; WAC 388-76-10670.

(15) WAC 388-76-10680; See also WAC 388-78A-2660 (requiring that assisted living facilities “not allow any staff person to abuse or neglect any resident”); WAC 388-97-0640 (requiring nursing facilities “not allow staff to engage in” abuse or neglect). 

(16) WAC 388-101-3320.

(17) WAC 388-101-3250(8): Supported Living providers must prevent unsupervised access, but are permitted to hire persons with disqualifying convictions, pending criminal charges, or a substantiated finding of abuse or neglect.

(18) Adult Family Homes: WAC 388-76-10180; Nursing Homes: WAC 388-97-1820; Assisted Living Facilities: WAC 388-78A-24641 (filed October 18, 2012; effective date 31 days after filing).

(19) See WAC 388-101-4190

(20) The nationwide disregard for the value of people with disabilities from too many healthcare professionals has been documented recently by DRW and National Disability Rights Network in “Devaluing People with Disabilities: Medical Procedures that Violate Civil Rights."

(21) See MINN. STAT. 245.97 (2008)