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.

 

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.

 

Thank you, Alpha Supported Living

This past year has seen great changes for my son and this past Thanksgiving, I realized how much growth my son has made since last Thanksgiving.

Last year, our son, age 21, had lived at the Intermediate Care Facility for people with Intellectual Disabilities (ICF/ID) for 5 years.  The ICF/ID was only 10 minutes from our family home and part of the community in which our son was born and raised.  We had frequent contact, outings and visits both at our home and his.  Unfortunately the team at the ICF/ID was unable to manage my son’s healthcare and daily support needs but we didn’t think we had another option.

I remember not only the great sense of relief I had when I took him back home after our Thanksgiving Dinner last year but also grief and sadness about his increased agitation and manic behavior which was so disruptive.  I questioned if we would be able to have him visit for future family holiday celebrations. He had been experiencing increasing mania and the physicians at the ICF/ID refused to follow the recommendations of our son’s psychiatrist regarding medications to control his mania.  I remember expressing my great concern regarding his increasing mania  to the psychiatrist during our meeting last December and feeling powerless in getting the needed medications prescribed and administered.

This Thanksgiving, our son was a totally different person.  He was at our family home for at least 4 hours and stayed focused and helpful.  His participation in meal prep and tasks was amazing.  He even sat at the table and ate a nice sized meal.  When it was time for me to take him back to his house, I realized that he had set a record for length of time at our house and that I was not totally exhausted and spent from trying to manage his mania, other disruptive behaviors and physical care.

I attribute these great changes to the move he made last spring from the ICF/ID to a supported living arrangement in a home with 2 housemates.  This was made possible by the Roads to Community Living Grant and Alpha Supported Living Agency in being able to provide these great services.  My son has greatly benefited in so many ways and in such a short time.

Within two months of moving and having his care provided by Alpha Supported Living, our son’s health issues were treated appropriately, medications and treatments administered as prescribed and other long standing health issues were addressed and managed.  It was great to see these changes and work with this team to create solutions that worked.   But the improvement and stabilization of my son’s health issues are just the beginning of the changes we have noticed.

Our son is learning new skills and is supported to increase his ability to make choices and take responsibility for various aspects of his daily life tasks.  He is now able to wash his hands, sit at the table and eat a whole meal, clean up his dishes, go grocery shopping for his own groceries, and is very compliant with taking his medications and other responsibilities such as ensuring his iPad is plugged in at night and putting his glasses on his dresser before going to bed. He is able to follow verbal prompts better and stay on task a few seconds longer.  He is becoming more self-directed in being able to communicate his needs and desires.

We are beyond proud of the accomplishments he has made this past year with the support from Alpha Supported Living.  Seeing first hand what a difference this care makes it is imperative for our states to support the wages of the caregivers.  We need continuity of care – both as the recipient of the care and as the caregiver – to continue to provide this care.

Some supported care agencies are experiencing staff turnover rates of 50-70%.  This is not only very disruptive to the clients but increases the overall cost of care when one looks at the cost of recruiting and training a revolving door of caregivers.  Once trained and placed in a job many direct care staff leave due to the intensity of the job and low pay. The state sets the pay rates and it is just not enough to cover costs of the direct care staff.

Supported living is in crisis.  Funding for direct care staff has been ignored for years while costs have continued to increase.  The level of intensity of staff support is increasing and we need to provide the appropriate staff.  This level of care is critical to many in our community to enable them to have a meaningful life experience.

A meaningful life is more than just having support staff in your home though.  It is being able to go out and be in the community.  Many agencies do not have funds to provide transportation or staff for outings, activities and medical appointments.  Many agencies are not able to hire a Registered Nurse to oversee healthcare or have a dedicated Healthcare Coordinator to manage the variety of healthcare needs. Again, the intensity of these needs are increasing.  We need to have providers trained in the particular needs of the population with intellectual and developmental disabilities. These aspects of care should not be “extras” but should be part of the service. But,  unless an agency is able to fund raise for these critical necessities  to a meaningful life, the clients will go without.

In my son’s situation, the transportation and healthcare are paramount to the success he is experiencing. .  My son has a job at Lowe’s working 2 hours each weekday morning  (supported employment provided by PROVAIL). and needs transportation to and from work .  He also has medical treatments at least 3 times a week for which he needs transportation and support at the treatment in addition to other medical appointments about once a week.  Without a dedicated vehicle for each home supported by Alpha Supported Living these necessary trips would be impossible.

It is only through fund raising that Alpha Supported Living is able to provide these life necessities to ensure not only the basics are provided but other opportunities to have a meaningful life – art classes, walking clubs, cooking groups, community outings are just a sampling of the other “extras” that help to provide quality experiences to one’s life.

Living in a home with supported living as opposed to in a state operated ICF/ID, is a collaborative effort.  We, as parents, guardians, residents, community members and staff, can make a real difference.  We can adapt to changes better and address issues directly when they arise.  There is more control over one’s life.  We can actually DO something to help make one’s live more meaningful – something that we generally cannot do for those who live in a state operated ICF/ID.

Below are some suggestions for what you can DO to help make someone’s life better:

  1.  Communicate this great need to our legislators – we need to meet minimum wage requirements and keep pace with the cost of living increases that we all experience.

2. Make a donation to a supported living agency to help provide for supports other than direct care staff wages.

Below is an example of how your donation helps to improve the quality of life of clients supported by Alpha Supported Living Services:

alpha-support-is-critical

(for clarification on the RN – this amount  has to do with the amount needed to bridge the gap between what Alpha is funded and what they provide. The professional services rates they receive from DDA provide for a part-time RN. The amount listed gets them to a full-time RN for 6 months)

If you would like to donate to Alpha Supported Living Services you can reach them at

Alpha Supported Living Services

MAIN OFFICE
16030 Juanita-Woodinville Way NE
Bothell, WA 98011

t 206 284 9130 | f 425 420 1133

 

Please join me in making a monthly donation to Alpha Supported Living Services – it WILL make a difference in someone’s life!

 

 

 

 

 

 

 

DD Ombudsman

Hopefully soon, Washington State will have a Developmental Disabilities Ombudsman.

This past year legislation was passed (thank you  Senator O’Ban,  the legislative champion for SB 6564, providing protections for the most vulnerable people from abuse and neglect) which will provide funds to develop The Office of Developmental Disabilities Ombudsman.

dd-ombudsman

There has been a great need for this type of oversight for all people with developmental disabilities but especially for those who live in an intermediate care facility (ICF).  While the Long-Term Care Ombudsman can help in situations for those who live in a skilled nursing facility, group home, assisted living or other long-term care facility, the Long-Term Care Ombudsman is not available to assist the residents in the ICF.

These residents have been without an adjudicator if concerns regarding their care  or other issue are not addressed appropriately.  This is especially true for those residents in a state operated ICF.  Without an independent authority to help mediate differences between the person and the state, these residents may not have had an objective investigation of their concerns.

Allegations of neglect and harm have been ignored or swept under the carpet by the state agency when conducting investigations of state facilities.  The DD Ombudsman will help prevent some of this injustice to our most vulnerable citizens.

I contacted the Department of Commerce last week to inquire into the development of the Office of the DD Ombudsman given that the bill was passed last legislative session.

Below is the response that I received from a spokesperson for the Disability Workgroup:

“A stakeholder meeting was held September 29th and written comments were accepted through October 15th.

I am currently drafting the solicitation to be released later in November. Evaluations of the bid responses will be in January 2017 and an announcement of the winning proposal probably in February 2017.

That organization will need to create the office, hire staff, train volunteers, etc. I anticipate them starting their ombuds duties sometime in the summer of 2017.

I hope this helps. Thanks for asking.”