Too Little, Too Late

In continuing to  address the issues of reported healthcare neglect  in the intermediate care facility for those with intellectual disabilities and how investigations are handled within the Department of Social and Health Services, I have had very similar observations of a flawed system that is reported by experts in the report Too Little Too Late:  A Call to End Tolerance of Abuse and Neglect.

too-little-too-late-title

The above report does not address complaints and investigations of allegations from those living in the institutions but the observations reported by the expert consultants are concerns that I have expressed regarding lack of accountability in the system which is supposedly there to protect our most vulnerable.  I realize it is not my imagination but reality that the system is broken.

“My review of the Washington DSHS Quality Assurance system, specifically mortality review, found a flawed system that does not “meet and maintain high quality standards” and is not an effective safeguard to protect health and welfare. Within the 6 months studied-June 1- December 31, 2012- there was a number of preventable waiver participant deaths. In addition to the concerns I have about these avoidable deaths, the poor quality of care for other participants, whose death although expected, causes me great concern about the quality of health care coordination and provider ability to meet the health and welfare needs of Washington waiver participants.”

Sue A. Gant, Ph.D. Date:  August 6, 2012

 

“Another unusual feature of the RCS investigation summaries is that they often did not reference findings pertinent to the allegations of abuse, neglect, mistreatment, and exploitation referenced in the initial complaint(s). In other cases, investigation summaries would reference these allegations and findings regarding their merit, but then conclude that the no provider practice deficiency was identified.”

“Many of the problems could be traced back to the tardiness of the investigations, but others (as also noted in my initial report) reflected the investigators’ failure to address significant issues, including allegations of abuse and neglect. In addition, as noted in my initial report, these investigations continued to manifest a trend of very “conservative” determinations of no citations for “failed provider practice,” even in instances when investigation documents explicitly referenced failed practices.

In addition, DSHS’ routine “planned ignoring” of allegations of employee abuse and neglect in its investigations is wholly non-compliant with basic expectations of the Centers for Medicare and Medicaid, as well as its own Quality Management Strategy”

Nancy K. Ray, Ed.D. President NKR & Associates, Inc

As a nurse who has worked in a Joint Commission Accredited Healthcare Institution  for over 30 years, I understand the purpose of nursing policies and protocols.  They are not just a useless exercise – they are there for a reason – TO ENSURE PATIENT SAFETY – and they accomplish this through various routes.

he prerequisite training credentials of their investigators, are not addressed at all by DSHS’ policies. Other procedures prescribed by the policies are routinely not complied with, either because resources to ensure their implementation are not available or supervisory oversight by DSHS is so lax that noncompliance by investigators and their supervisors has become commonplace.

When an investigation is returned “Allegations unfounded” together with the nursing policy that was clearly violated in many areas, questions of integrity, accountability, knowledge of the subject matter, and many other questions arise.  There is certainly not “closure” to the problem as the agency sweeps it under the carpet with the rest of the ignored problems they wish away.

Resident health and safety is at risk and will continue to be so until some of these problems are addressed and a plan of correction put in place and evaluated for success.

Abuse and Neglect Response Improvement Report – October 2013

subcommittee-response

 

There is a solution to the problems that I am referring to.  Ensure The Department of Health has oversight and licenses the healthcare clinics housed on the campuses of the residential habilitation centers.  DOH is the state agency which specializes in healthcare and should be the agency which provides oversight of healthcare – not the Department of Social and Health Services.

 

6 comments on “Too Little, Too Late

  1. ddexchanges says:

    Thanks Cheryl for caring as much as you do.

    Before commenting on your subject, even though in the middle of your post, you said it clearly, I want to be sure other readers are not confused, that they understand that the deaths reported in the review and the reviewer’s comments about her findings were about the non-RHC system and DSHS’s clients who lived in the community-at-large. For the benefit of readers who may not know, that is what a waiver, in this context is; the person waives his or her right to be cared for in an RHC and accepts an alternative form of payment which allows the person to live in one of the many other residential venues available.

    For many years, I have been beating the drum about oversight in the system of IDD residence and IDD residential care in the community-at-large. “TOO LITTLE TOO LATE,’ the report you have cited and quoted is about a review of the WA State Quality Assurance System for Waiver clients. It brings into sharp relief only part of the problem. The part that is still missing is that there is no oversight for the community-at-large that incentivizes safe and appropriate care. It talks about inadequate response to complaints, but by the time a complaint is lodged, all too often harm has already been done. It needs to be prevented, not just investigated.

    Even though they don’t cover nursing in the intermediate care (ICF) part of the RHCs, the audits to which the ICFs are subject do incentivize a much higher quality of care, at least according to people I know who are employed in both venues.

    I agree that oversight of nursing and medical practices in the intermediate care facilities needs to be in place. No doubt, implementation of outside auditing similar to that imposed on in the RHC Nursing Facility would be helpful.

    In reading and re-reading your post, what has occurred to me is that families and guardians are the key to achieving the best possible care in the community-at-large as well as in the RHCs. While i am thrilled to hear of your son’s community-at-large success, I also welcome in the knowledge that you are 10-star proactive, a Mom who is a Presence in his life and that you inspire his caregivers and their management to rise to your high expectations. I also know from 28 years of experience as my sister’s very proactive guardian that I have inspired her caregivers and their RHC managers to rise to my expectations.

    Certainly, all the people with IDD living in RHCs and in the community-at-large need and deserve the quality of life and protection afforded by appropriate oversight that demands accountability. They also need and deserve families and guardians willing to be visible presences in their lives, watching over them, noticing and intervening when they need a different kind of support than what they are receiving. They need and deserve family members and/or guardians who stay involved, who don’t simply trust that their caregivers will see their needs clearly and respond appropriately. It was a hard lesson for me, but I finally have realized that such automatic clarity is an unreasonable expectation. We have to be involved in order for our loved one’s care to be optimal. When we excuse ourselves from that responsibility, essentially, we abandon them to care that has the potential not to match their needs, no matter where they live or how well-meaning their caregivers are.

    When you, as your son’s very involved and proactive parent, were unable to achieve the level of care you knew he deserved, you chose to move him to a carefully vetted residence where he now receives the care you know he deserves.

    At the times when I have disagreed with care my sister has received, I have considered moving her but have always found it possible to get her needs met through determined effort, perseverance and negotiation.

    Parents and guardians who have little involvement in their loved ones’ lives need to know that they have power and their presence and involvement can literally make the difference between safe, appropriate care and unsafe or inappropriate treatment.

    Yes, the safeguards you advocate are important. But realistically, and most immediately, until all so called safeguards are in place, we as families and guardians must be willing to be the eyes, ears and negotiating voice for our loved ones, no matter where they live.

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  2. Thank you, Saskia for your comments. Yes, we have to be involved but even when we are involved and work to collaborate to optimize care, we need to be considered part of the team.

    This is a continuum of care and many of the clients who live in the community at large either lived in the RHC , had respite in the RHC or were denied admission to the RHC. They are the same as the clients who live in the RHC. The issues of concern in the report, although not addressed to the RHC, are also part of the systemic problem of investigations and “planned ignoring” problems.

    My concern is specifically aimed at healthcare in this situation and the lack of understanding of nursing standards. This is also a clear problem identified in the investigative process of the mortality reviews. This is a problem that is systemic – no matter where one chooses to live.

    The fact that I, and many others, had been misled about the oversight in the ICF/IID regarding healthcare, has, in my opinion, let to many problems because there has been no review of the standards of care. Those who utilize the RHC believe there is adequate oversight – because they are told there is but are not aware of what the oversight misses.

    When the ICF/IID is surveyed – they just check off that Registered Nurses are employed – they do not check their license to ensure the RN has an active license or check to ensure the nurses are trained in the specific population served. How many of the surveyors are knowledgeable about the State Nurse Practice Act as written as Guidance in the CMS State Operations Manual and look through the Nursing Standards of Care to ensure they have been reviewed and updated to reflect current quality and standards of practice?

    When a complaint is issued, the investigators are to look at Appendix Q in the State Operation Manual to determine if neglect, abuse or neglect has occurred – in the past, in the present or risks for the future. This guide contains lists with specific triggers associated with harm. Both potential and actual harm need to be considered. Below are also some considerations listed.

    • The entity either created a situation or allowed a situation to continue which
    resulted in serious harm or a potential for serious harm, injury, impairment or
    death to individuals.
    • The entity had an opportunity to implement corrective or preventive measures.

    There needs to be healthcare professionals involved in the investigative process of healthcare concerns – regardless of disability or residential choice.

    https://www.cms.gov/Regulations-and-Guidance/Guidance/Manuals/downloads/som107ap_q_immedjeopardy.pdf

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  3. ddexchanges says:

    Yes. Of course, I completely understand you are addressing healthcare. You wrote, “There needs to be healthcare professionals involved in the investigative process of healthcare concerns – regardless of disability or residential choice.” I TOTALLY AGREE.

    But, if over time, one has read all of what you have written, if one does not read it with very detailed attention, one could form the impression that the RHC healthcare system is terrible in a general way. It isn’t. In fact, although I agree that better oversight, especially from a healthcare agency is needed, with a few exceptions, my RHC heaathcare experience has been that it has been appropriate and in most cases it can be accessed with expediency. This is better than my experience with non-RHC nursing homes and usually better than the system in the community-at-large where one has to depend on an assessment from an offsite nurse manager before the resident is taken to a clinic or emergency department.

    The reason I have taken the time to respond is that I see it as important that the whole RHC system not be so awfulized that people whose family members could actually benefit from RHC residence are afraid to allow them the experience. As I wrote, the degree of involvement by parents and guardians can make a huge impact on care. Families need to be visible and to work with caregivers, their managers and professional service providers to assure everyone is on the same page. Usually, this is not only possible but productive. Occasionally, it is difficult when not everyone is looking at something from the same perspective. Those times are frustrating. Just when I am most frustrated is when I most need to be diplomatic and persevering.

    Having talked with other, very dissatisified parents of residents in the community-at-large, what I have come to believe is that neither system is perfect, but at least in the RHC, there are usually enough levels of redress to eventually arrive at a satisfactory resolution to any problem and most often, only one level is needed. Families of community-at-large residents, whom I know, have found when they have encountered problems, that redress was not possible after the first level, unless you count having to move to another situation as redress.

    I know that your experience has been quite the opposite, Cheryl, but I believe your unfortunate experience was not the norm. Still, I totally agree that the system needs to be changed so that the errors you found and the missed diagnosis you encountered don’t occur, and that if investigation is needed, it is done by a medical or nursing professional or at at least a team that includes them. As you know, our organization has sent a letter requesting review of standards and policies with updates, as appropriate, relative to improvements we regard as needed.

    Once again, thanks for the forum.

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  4. “As you know, our organization has sent a letter requesting review of standards and policies with updates, as appropriate, relative to improvements we regard as needed.”

    I’m curious to any response you have received and if there have been improvements made. From what I have heard there has only been a refusal to talk or refusal to acknowledge a problem – neither of which are acceptable for the health and safety of residents.

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    • ddexchanges says:

      Our letter arrived during your battle. Apparently, it was seen as contentious because of that.
      It wasn’t at all contentious and we have explained that it is important to all families that the questions we asked be addressed. To my knowledge, the questions are being addressed. Also, to my knowledge we have received no denials of problems. Since we preferred to have our questions answered in writing, that is what we requested. Not having requested verbal discussion, there has been no refusal to talk.

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  5. It is really a shame that when concerns are raised about health and safety, rather than being told “thank you, how can we fix the problem” it becomes a “battle” and “contentious”. With that reaction to issues of concern, how can people collaborate and work through problems?

    This was a link of the Friends of Fircrest Facebook page and it was very helpful – it is from the Institute for Healthcare Improvement. I found the discussion very interesting and it was helpful to address the cultural issues of safety in healthcare and how to change things – basically to say thank you to the person who points out a problem and to have standards of care – without standards there is no consistency and providers may not know what is expected. One reason that accreditation is important in healthcare – to have standards of practice in place.

    http://www.ihi.org/resources/Pages/AudioandVideo/WIHI-Speak-Up-For-Safety.aspx

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