ActionDD – what are your goals?

ActionDD, a grassroots organization in Washington State is holding a winter meeting and legislative reception on Tuesday February 7, 2017, in Olympia WA.

I understand the goals of this organization are to keep the RHCs open and I fully agree with that goal.  I know that we need to have a full continuum of care to provide the best and appropriate supports to people in the IDD population.

This population is also one that experiences a great healthcare disparity – no matter where one lives.  Residence in the RHC does not provide the healthcare and oversight that people are led to believe exists in that setting.  Does ActionDD address this issue?

My concerns regarding appropriate healthcare with oversight by healthcare professionals is critical to the management of the RHCs.  Currently there is no oversight of the healthcare by the Department of Health and quality standards for healthcare are lacking.

I understand people are afraid to call attention to issues of concern regarding the care in the RHC and often refer to the oversight as being above and beyond that of oversight in community settings.  People are afraid that any “bad press” for the RHC will encourage those opposed to a full continuum of care to point out these deficiencies.  That may be a risk but there is also a risk to keeping quiet and allowing neglect to occur.

I am guilty of feeling that fear.  My son was a victim of various forms of healthcare neglect while living at Fircrest.  The neglect was systemic and has left him with life long complications.  In my attempts to collaborate and have appropriate care provided, I was ridiculed and harassed by administration for my concerns. My concern for his healthcare was treading on their turn and they had no intention of collaboration.  My speaking out about the healthcare neglect has started to open up dialogue but there is a long way to go.

 

 

Who are the investigators?

Concerns regarding medical and nursing neglect for residents residing in one of our state’s intermediate care facilities has led me to ask many more questions.  Questions that I should have asked long ago before harm and  permanent damage occurred and quality of life diminished.

But on the other hand, the fact that my allegations were dismissed as “unfounded” when I knew that neglect had occurred, prompted me to do my own investigation.

In Washington State we refer to the state operated institutions (both skilled nursing facilities (SNF) and intermediate care facilities for people with intellectual and developmental disabilities) as Residential Habilitation Centers or RHCs.  This presents several problems – the first one being that the SNF and ICF have different federal and state rules and regulations.  When both the SNF and ICF are combined in one campus, residents, community members and legislators fail to understand there are two distinct entities involved with different regulations to abide by.

There is also confusion regarding “long term care facility” and “healthcare facility” and which state agency should provide oversight and licensing.  In Washington State, the ICF is not included in the definition of “long term care facility” but does fit under the definition of “healthcare facility” by the services provided at the ICF.

This issue is particularly troubling when the state ensures that those who reside in the ICF receive all their healthcare needs on campus by state employed medical providers and nurses.

The Federal Regulations are clear with these issues but Washington State is confused.

Here is just one example of an issue that at this point is unsolvable given the system that Washington State has in place for oversight, surveys and investigations.

There are allegations of multiple medication errors over several years – medications documented as being administered but the pharmacy did not dispense enough medication to account for all the documented (by licenses nurses) administrations.  The pharmacy only dispensed 12-46% of the medication the nurses documented.  There was harm done by not administering the prescribed medication.  This was the practice at the ICF for 9 medications over 5 years time – many, many nurses signed off as administering these medications.  If one looked at the medication administration record you would assume that the client received ALL the medication as prescribed –

BUT – there is another story when trying to match the pharmacy records to the nursing administration records.  There is a MAJOR problem with the SYSTEM.

The ICF is licensed by DSHS.  That means that DSHS is the state agency providing oversight and investigations.  When the state investigator goes in to look at these allegations they see the medications were documented as given, meaning that the allegations are unfounded – no medication errors and the nurses provided the care.

There are clear violations of some state nursing standards (State Nurse Practice Act),

  • Willfully or repeatedly failing to make entries, altering entries, destroying entries, making incorrect or illegible entries and/or making false entries in employer or employee records or client records pertaining to the giving of medication, treatments, or other nursing care;
  • Willfully or repeatedly failing to administer medications and/or treatments in accordance with nursing standards

Failing to meet these standards could lead to disciplinary actions but DHSH does not consider these violations because the nurse documented administration and an error was not observed.

Unfortunately, in this situation, the State Department of Health and the Nursing Care Quality Assurance Commission are unable to do anything since they are not the licensing agency for the ICF and the error is not attributed to one identified nurse. The licensing agency needs to address these violations but DSHS (the licensing agency) does not see these medication errors as violations or errors.

So – how do we as advocates, healthcare providers, parents and legislators ensure that these standards are met?

As stated in the Code of Federal Regulations and the Social Security Act Section 1905 (d)  the “primary purpose of the ICF/IID is to furnish health or rehabilitative services to persons with Intellectual Disability or person with related conditions”.

Given that the ICF is a healthcare facility and its purpose is to furnish health services, we need to have healthcare professionals involved in the oversight, surveys and investigations of the healthcare provided – Washington State is not providing the needed oversight of healthcare to this vulnerable population.

investigations-by-rns

 

 

 

 

“Allegations Unfounded” ?

Medication error rates of 52-89% on several medications is neglect.

Failure to apply splint correctly 85% of the time is neglect.

Neglect occurs when a person, either through his/her action or inaction, deprives a vulnerable adult of the care necessary to maintain the vulnerable adult’s physical or mental health. Examples include not providing basic items such as food, water, clothing, a safe place to live, medicine, or health care.

Signs of neglect. (from Washington State Department of Social and Health Services)

The above examples of error rates are just a few that have occurred to my son while living at a state operated intermediate care facility for those with intellectual and developmental disabilities (ICF/IDD).  These issues and others have been reported to the administration and there have been several investigations done and the conclusions returned have been “allegations unfounded.”  I find these conclusions indefensible given the documents that have been submitted for review.

One such issue that went on for several weeks started when my son developed swelling and pain in his right ankle – the ankle that had very recently recovered from a serious sprain.   The lack of response from the medical and nursing team from the very beginning of this injury being reported to the day I removed the splint was met with frustration. It was a very simple and straightforward issue that could have had a very simple and straightforward response – it turned into something totally different.

It was not until I was totally frustrated that I even mentioned the word “NEGLECT” and that is when the superintendent “self-reported” to Residential Care Services  (RCS) and the first investigation was done.  That investigation took several months to complete and the allegations were deemed unfounded.  During those months I was not allowed to talk with anyone at the facility regarding the care since it “was under investigation.”

This is a link to the email exchanges that I had with the Health Care Coordinator (HCC – RN), the Nurse Manager (RN4), the Habilitation Plan Administrator (HPA) and the ICF/IDD Superintendent.

neglect-with-foot-splint-at-fircrest-june-2015

splint-on-wrong-foot-upside-downsplint-on-left-foot-should-have-been-on-right-foot

 

Since that time, I have requested to have the issues investigated again and have provided more documentation to RCS.  I have felt as if I have been the one being investigated because each conversation that I have had with an investigator has started with what they have heard about me – trying to find issues with what I have reported or how I have acted.

The only thing that they have been able to say is that the photos that I have provided are not “proof” because I could have photo-shopped them.  Their “proof” is the documents and charting of their nurses and staff (which now have been found to be in error when trying to reconcile medications dispensed to medications documented as administered).  They have not and will not consider email correspondence or medical charts from outside medical providers.  They have not enlisted healthcare professionals to review the allegations of medical and nursing neglect until this very last investigation involving almost countless medication errors.  Yet, I am the one who is looked at for wrong doing.

In doing the research for these allegations I have learned that the Department of Health and therefore the Nursing Care Quality Assurance Commission has no ability to investigate since they are not the licensing agency for the healthcare provided at the ICF/IDD.  Since the issues are systemic to the nursing care at the ICF/IDD it is up to the licensing agency to investigate.  Here is a link to the letter I received from the Nursing Care Quality Assurance Commission – Discipline Section, Health Services Consultant.

dshs-needs-to-look-again-at-nursing-neglect

So, it’s back to the drawing board of contacting DSHS and asking for explanations of why the allegations are unfounded.

All residents are at risk of harm until these and other issues are acknowledged and corrected.

 

Whistleblowing

Someone needs to speak up and I’ll keep speaking up until some of these serious issues of healthcare inequity are actually looked at and corrected

A recent blog posting entitled “The Journey of a Whistleblower: The Challenges, the Pains and the Price ” identifies some of the issues when one is faced with some ethical decisions.

While my son was a resident at a state operated intermediate care facility, I brought issues of concern to the administration and the medical director.  When no action was taken, I approached the Human Rights Committee of the facility.  They did not think that the issues of healthcare neglect and injury were a concern of theirs.  I then went to the advocacy group for the residents of the facility.  The president told me that their goal was only to keep the facility open – they had no say in assessing or measuring standards of care.

Obviously the healthcare and quality of life for the residents was not on the radar of any of these groups.

So, I keep trying to get people, organizations, legislators and agencies to see the serious concerns with medical and nursing care at some of these facilities.

If your loved one was dependent on the care provided in a healthcare facility, would it be important to know that all the prescribed medications and treatments were administered?  Or would it be okay for the nurses to only administer sometimes but document that all prescribed administrations were completed?

Would medication compliance rates of 11-46% be acceptable to you?  These rates are certainly not acceptable to me.

But it’s not just the low compliance rates I’m concerned about – it’s the years of falsified records across the board on a variety of medications by many nurses that is a huge concern.  Who is to know if the medications are really administered with so little oversight?

Who monitors medication administration – apparently no one and this is a major problem that needs immediate attention.

There is immediate jeopardy to all residents of the facility until the medication administration problems are examined and corrected. It is shameful on the part of our state agencies that these practices have been and still are accepted practice.

As a nurse myself, I know this practice is unethical and illegal to falsify these documents.  I question the level of integrity of the nurses working at this facility who routinely engage in this illegal activity.

This time has come to go outside the state organizations and inform others.  It is not just about keeping a facility open, it is about providing safe, quality care.  Care that is not happening at this time.

 

Thrown Off Balance

The past couple of years have seen a shift in my understanding of the quality of care that is provided for individuals with intellectual disabilities.  What I had been told and what I had believed were not the reality of the situation and it has been a soul-searching experience to confront the issues and to take action.

We started experiencing problems in the year 2011 regarding issues of medical and nursing care that was substandard and downright neglectful.  I started working my way up the “chain of command” within the intermediate care facility which was just an exercise in frustration that I would learn would only get worse as the years progressed.  I didn’t want to make trouble and I didn’t want to have a big investigation done.  I just wanted the appropriate medical/nursing care to be provided for my son and others.

After I exhausted all avenues I knew for healthcare I then approached the Human Rights Committee and outline the Resident’s rights and how they had been violated.  Again,my concerns were discarded.  I approached the advocacy group for the facility and my concerns were not a priority.  Their priority was to keep the facility open and any issues that caused concern for care were ignored for fear it would give the “opposition” more fuel for closure.

While I am very concerned about the loss of access to campus based communities and intermediate care facilities, I do not want to compromise on appropriate healthcare that at least meets the minimum standard of care.  The care my son was receiving fell far below the minimum and I’m assuming that the healthcare of others was also compromised.

Jumping forward 5 years, the problems became more profound and pervasive.  It was at this point that the facility actually “self-reported” to the State Investigative Unit since I had claimed there was neglect on the part of the healthcare team and had become so frustrating trying to work with the “team” – as guardian I was excluded from most meetings and not considered part of the team or someone who needed to be consulted or listened to.   Neglect was the key word which was taken seriously.  Unfortunately, the actions taken were again just another exercise in frustration.

It was at this point that I actually started to ask questions about what state agency actually licensees and oversees the healthcare clinic.  I learned it wasn’t actually a “clinic” but only space that each professional was allowed to use for paperwork.  There was no medical director and there was no healthcare oversight.   This revelation was a huge problem with access to appropriate healthcare for the residents.

In my audit of my son’s charts I have discovered so many medical and nursing errors in addition to errors in policies and protocols that it is shocking.  For instance in the case of 90-day medication reviews there were over 8 medications that were charted as given once or twice a day by the nurse for a period of 1-3 years. They were not given – this was false documentation.   These medications were indicated at one time but at a 90 day medication review they should have been looked at and the questions asked if they were still indicated and if not, they should have been discontinued.  Instead the nurses just kept signing off they were given  – some had never even actually been given at all.  As a nurse I find this totally unimaginable.

This is not only a problem with nursing documentation but also with pharmacy reviews and the “team” 90 day medical review.  These reviews had been signed off as being done and in some cases a medical doctor wrote “med review – no changes” when there had been significant changes in just the couple of weeks prior to the review.  If I had been notified of these reviews or a 90 day medication reconciliation form sent to me, I could have very easily have seen what problems were there.  Being left out of the team and not allowed to perform my legal duty as guardian caused many problems.

At this time, until these issues are objectively reviewed by an independent investigator and the problems actually addressed and not swept under the carpet, I cannot support these types of intermediate care facilities.  The Federal Regulations need to be followed and the appropriate care provided.  I know in the case of my son this was not happening – I hope it’s not the case for everyone.

 

Who Watches the Watchman?

When allegations are reported and investigated – what happens if the investigators are actually part of the group the allegations are against?  Who provides an independent review of the allegations if the investigative agency can not be objective and actually do a real investigation?

These are questions I have regarding allegations of medical/nursing neglect and abuse  in the treatment of my son at the state operated intermediate care facility where he lived for 5 years.  The agency which does the investigation is the agency which runs the facility.  Unfortunately, even though the allegations are all medical and nursing care issues, the investigator did not have one healthcare provider review the allegations, documents or look into the fact that policies are outdated or do not meet the minimum standard of care.

But these “experts” have decided that the allegations are unfounded based on interviews with agency staff (non-healthcare) and administration.

We hear that the ICF/ID provides “comprehensive care” including healthcare and that there is oversight to ensure the care is being provided. Maybe in doing random surveys and looking at random samples, it may appear that the care is being provided.  Also in those surveys they do not look at the quality of healthcare or if the healthcare meets the community standard of care.  They seem to check that the providers have current licenses to practice their profession.  I think that we all know that having a license is not the same as providing quality care.

In my attempts to have an objective investigation I have contacted several other agencies in the state, including the Department of Health, and have gotten nowhere.  They all point to the Department of Social and Health Services as the agency providing oversight of the care.  Even though the ICF/ID is a medical facility by federal definition, our state defines it as a long term care facility yet the Long Term Care Ombudsman does not consider it a long term care facility and is of no help.

Clearly there are issues of neglect and abuse – any sane person could look at the records and documents and make that conclusion – for some reason though the Department of Social and Health Services and their investigative team has chosen to continue this neglect by failing to see the obvious and make corrections.

The issues fall into various categories of medical malpractice, medical neglect, restraints without consents, multiple injuries including fractures, false documentation of over 8 medications for over 2 years, failure to communicate with guardian regarding psychotropic medication changes, failure to provide prescribed medical treatments and transport to medical treatment center for prescribed treatments, applying splint to wrong foot, applying splint over shoe rather than inside shoe and failure to protect from client-to-client abuse are just a few of the allegations.  Maybe some of the issues actually fall into criminal categories.

Certainly in my mind the lack of ability of the investigators and the DSHS administration to do an objective and fact finding investigation is criminal.

Does one need to file a lawsuit to get anything done about this?