Washington State Institutions

Washington State has an “interesting” concept in place with regards to the campus based communities for people with intellectual and developmental disabilities.  The term used in Washington State is Residential Habilitation Center (RHC).

What makes this term very confusing is that the RHC could be a Specialized Skilled Nursing Facility (SNF), an Intermediate Care Facility for People with Intellectual and Developmental Disabilities (ICF/IDD) or both.

What makes the term RHC even more difficult is the fact that there are different rules and regulations for the SNF and the ICF/IDD so when one talks about the RHC which type of facility is one referring to?  Most people do not realize that when referring to the RHC they are actually referring to two different types of institutions.

what-is-an-rhc-2017

Nursing care is an area of concern for those who live in the ICF/IDD.  Even though the ICF/IDD is defined as a healthcare facility under the Social Security Act, Washington State does not define it that way.  The ICF/IDD also does not fit under the definition of “Long Term Care Facility” by Washington State Law but many consider it a long term care facility.  This ambiguity about what the ICF/IDD leaves the residents floundering in limbo without appropriate oversight for the care that is to be provided to the residents.

This issue is clearly seen when looking at who does the surveys and investigations in each type of facility.  The SNF has all registered nurses on these teams while the ICF/IDD rarely has a healthcare professional on the team.  Even if allegations are written concerning medical, nursing or other healthcare related problems, there is no healthcare professional on the investigation team to assess the situation.  This is a problem.

rhc-investigations-2016

There are several solutions that can be examined for this error.  The first solution would be to transfer oversight of the healthcare from the Department of Social and Health Services to the Department of Health.  Another solution would be to include registered nurses or other healthcare professionals to do the investigations and surveys.  At the minimum the healthcare professionals should be consulted for any allegation that pertains to healthcare.

 

Healthcare at the Intermediate Care Facility

Who oversees the healthcare at the intermediate care facility for those with intellectual disabilities (ICF/ID)?  If you have a loved one who lives in an ICF/ID it may be worth looking into this to ensure that the healthcare actually does at least meet the minimum standard of care.

This was not the case in the ICF/ID that my son lived in.  I first started noticing problems the first year he lived there and I tried to work with the team and work within the system to improve the care, provide education and collaboration.  As system after system broke down and my son’s health grew worse I was making more and more trips to his home to provide the care and treatments that were supposed to have been provided by the nurses and team at the ICF/ID.

I knew the medications were not being applied but since the nurses were charting as given that was proof that the medications were being applied as prescribed. The fact that my son was not responding indicated that more potent medications were needed in addition to other medical treatments to control his inflammation.  These other treatments are not without risk and actually do increase his risk of cancer but we needed to get the inflammation under control and his immune system stabilized.

I was visiting at least 4 times a week and would apply his topical medications when I visited – knowing that he would at least be getting them when I was there.  They were actually supposed to be applied twice a day  and were charted as being applied twice a day but that is not what was happening.

After we moved our son to supported living and his care staff  applied the prescribed medications as ordered his inflammation quickly was controlled.  In about one month’s time the inflammation that had been extremely problematic for 3 1/2 years was now in total control.  His lab work was essentially normal after 3 1/2 years of having hematological problems. The medications actually did work – they were just not being administered as prescribed.

Now that I have the actual pharmacy and nursing records to review, I have found 9 medications that were falsely documented as being given for 1-3 years.  As a nurse I am totally appalled at the lack of quality and integrity that was accepted and not even questioned and do not understand how these dramatic errors can go unnoticed and uncorrected.

Below are charts of 5 of the medications showing the dates of administration, the amounts the pharmacy (at the ICF/ID) dispensed and the amounts that were charted as given. The compliance rates are unbelievable!  Who would accept these rates as meeting any type of standard of care? Why is this acceptable at the ICF/ID?

medication-1medication-2medication-3medication-4medication-5

It’s not just nursing that was the problem.  There was to be a 90-day medication review or reconciliation.  The purpose of this is to check each medication and ensure it is still needed and is indicated and the correct dose is prescribed.  Obviously the medication reviews were not done (but were signed off as being done)  since 3 of these medications were only needed for a short time (1 month or less) but remained in my son’s active  medication profile for up to 3 years dispensed and signed off as administered.   Who really knows what was given and what was just charted on as given.

How is one supposed to know if a medication is working or not when there is this type of record keeping?

There are so many problems that can be identified just with these medication errors.  This is at a state operated facility and so far the state investigation has stated that the allegations are unfounded based on the fact that the nurses charted the medications as given as ordered.

The state agency that oversees this facility is the Department of Social and Health Services.  Unfortunately, complaints to the Medical Quality Assurance, Nursing Quality Assurance, Department  of Health, Pharmacy Quality Assurance are unable to provide any guidance since they do not oversee any of the services at the ICF/ID.  It is up to DSHS and they do not see any problems.

Residential Care Services has opened up another investigation to review these issues and other allegations healthcare abuse and neglect.  My hope is that this time they will be able to see the problems and work on a plan for correction so that the residents do indeed have healthcare that at least meets the minimum community standard of care.  Currently that is not happening.

 

 

 

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?

 

 

Closing the Gap – Healthcare Disparity

We often hear about the oversight of care that is provided in the state-run Intermediate Care Facilities.  While this may be true for some aspects of care it is not true in regards to the medical/nursing care that my son has received.  I am writing this so that others may learn and be aware and know to ask about the oversight at their own facilities.

The situation I will refer to is only in regards to my son and the residential habilitation center in which he lives.  I am recounting my story so that others may be aware and begin to ask questions to ensure that the medical/nursing care has some oversight by those who are knowledgeable in the community standards of practice for medical and nursing care.

Over the past several years my son has had a variety of health problems.  I tried to communicate with the healthcare providers at his center but my observations were ignored and I was ridiculed by some of the providers. Other providers refused to listen to my concerns – instead stating “staff has not reported that.”  In several cases I ended up taking my son to the local ER to get a diagnosis and treatment since I was not making headway with the healthcare professionals who were supposed to be his primary care providers.  At the ER my suspicions were validated and found to be correct but by that time my son had suffered more than he should have.  He has also developed some life-long complications from some things that were not diagnosed and treated appropriately by these so-called primary care providers even though I had given them the information and had requested the specific tests to be done.  My requests were denied.

As a Registered Nurse myself, I really had difficulty with this.  Trying  to collaborate but not be overbearing or controlling and not putting my son at more risk was a tricky situation.  One nurse manager also told me  “you need to separate being a nurse and a mom.” Also, I could not understand why the community standards of practice were not followed.  Assuming that the “Primary Care Clinic” on site and the infirmary were licensed and had oversight by the Department of Health was the first mistake.

While the Department of Health oversees the healthcare in other state institutions, community healthcare centers, home health care agencies and hospitals, they do not oversee the Intermediate Care Facilities.  In our state, this is delegated to the Department of Social and Health Services.  I learned about this after an investigation which clearly showed neglect and inappropriate medical and nursing care was returned “allegations unfounded”

I was not only dumbfounded but angry.  The investigator had even included a copy of the Nursing Protocol for one issue and the nurse had clearly not followed  it  yet that fact was not even addressed – it didn’t seem to matter.

A couple of months later my son developed sudden significant pain and swelling in one of his feet.  This would now be the 4th foot injury in 10 months that he has had.  Given the localized swelling and tenderness I suspected a break and requested an xray.

Assessment by RN 1 – “no pain or bruising,   normal swelling present” will go away after he has had his foot up for the night – communicated that I did not agree and would like xray if still swollen in the morning.  Report called to MD – no orders

 

swelling day 1

 

Assessment by RN 2 – No swelling, not warm to touch, no pain upon palpitation, no distress walking, no signs of fracture, nothing at all.  She notified MD and he agreed with her assessment that no action would be taken unless nursing sees something to indicate client had a fracture.

MD did not assess client himself but took this assessment of the RN as fact even though he was aware that I had requested and was still requesting an xray.

I requested at least for an Ace wrap or his splint to be applied.  I was refused this by nursing because the assessment was that he did not need it.

swelling day 2

 

Assessment by RN 3 – stated that swelling appeared decreased and client said “no” when RN asked him if he wanted the splint on – taken as refusal and RN did not attempt to apply splint.

Assessment by RN 4 – small amount of edema and bruising – notified MD and stated that mom would like to have an xray done.  MD refused saying that he does not order xrays just because a mother wishes it to be done. RN returned to repeat assessment.  There was now more swelling and tenderness – told MD that mom would take client to the ER if he did not order an xray.  He then agreed to order the xray

Swelling and bruising day 3

Result – Fracture of 5th metatarsal and placed in cast-boot.

Again an investigation was done by the State Investigative Unit under Department of Social and Health Services.  Photos and a video were sent to all involved and also reviewed by the investigator.  It was clear to me that this situation had not been handled appropriately but again, I was dumbfounded to receive the results of “allegations unfounded.”  There was one citation though regarding the failure of RN 1 to write a note on a form regarding her first phone call to the MD.  The plan of correction by the nurse manager was that this form was obsolete and not used any more so was removed from the nursing protocol.

There was not one word about the lack of quality of care  – it does not seem to matter.  

I had a meeting with the administrators and two of the MDs ( not the one that was involved in this particular situation) and asked about professional peer review for the issues that I have raised over the years.  That idea had never crossed their minds and they were all unfamiliar with the concept.

I am now trying to get the word out there, writing to our legislators, the Department of Health, Residential Care Services in the Department of Social and Health Services to remedy this complete gap in care for our most vulnerable.  These residents do not have the oversight and wrap around health and social care that we have been led to believe.

Yes, I am angry – angry at myself for trying to collaborate and work together for so many years and not realizing the healthcare team does not have oversight to ensure their standards are up to date and are adhered to

Angry that my son has suffered and now has life-long complications from the refusal of this “healthcare team” to listen to what I was telling them about my son

But mostly angry at the facility and the agency for failing to provide the quality and standard of care that they have been entrusted to provide.

I have no answers now.  The Department of Health is not able to investigate since they do not license the facility.  I was told to write complaints for each individual practitioner.  This has been done and is in process.

I filed a complaint with the Residential Care Services to look at the Federal Regulations regarding quality of care, utilization review and standards of practice.  They seemed to be a little confused on what I was referring to.

I will keep pressing this issue – my son will be taken care of.  He now has a full team of healthcare providers in the community but my concern is for those who do not have advocates and have to rely on the healthcare that is sub-standard.

If this was your child’s foot what would you do?

 

 

 

 

 

We need to provide choices – not restrictions

Please view the video which highlights the need for choices and options in our efforts to provide services and appropriate care and homes for those who live with intellectual and developmental disabilities.  This is one example of many that need to be options allowed and promoted.

 

 

Arc of Washington State – Question their data and resources

The Arc Washington State recently sent out an alert “Crisis Stabilization Needed in Local Communities.”  While this is indeed needed, the information provided by The Arc Washington is not only incorrect with facts but much is actually fiction.

As a respected advocacy agency which many legislators and community members look to for guidance publishing alerts such as this actually hurt the people The Arc is supposed to be supporting.  Where is the integrity and transparency in their reports?

The Arc states that “On average, only 1-3 beds a month are currently used for any respite.”  The Data obtained from the Department of Social and Health Services Executive Management Information System (EMIS)  dates June 2010 through June 2014 clearly show that the Arc is very incorrect.  Below is a graph of the data obtained from the EMIS.  The average has actually been 32 respite clients per month at Yakima Valley School.

Community Respite in RHCs

The Arc states “The cost for placement in Yakima Valley Nursing Facility is $587 A DAY, much more than a community setting.”  Again, data obtained from the EMIS and from the Office of Chief of Policy and Programs, DSHS Quality Programs and Stakeholders Office Chief, and the Crisis Services Program Manager,   the cost of community crisis respite is $1,166 dollars A DAY as opposed to the average $441 at Yakima Valley School of which only $216.00 is the cost to our state when the Federal Medical Assistance Program (FMAP) is taken into account. (EMIS 2012-2014)

Respite at YVSWhen provided with the actual data, one can see that we need to pass E2SSB 5243 rather than reject it.

This bill does not address anything having to do with respite that people receive in their homes and communities and will not take anything away from them.  It will only provide much needed services and help prevent crisis and family breakdown.

Yes, we all want respite in our communities but it is not happening for various reasons.  Respite can be used for a variety of community outings and opportunities but out-of-home respite is also needed.  I can tell you that if my son had been allowed to have any out-of-home respite at all while living at home on a waiver, it may have saved our family and may have prevented him from being moved into the RHC.  I believe that out-of-home respite is an essential component of the whole respite program and will add to the sustainability of community programs.

Resources:

Data received from the Department of Social and Health Services, Executive Management Information System  June 2010 – June 2014, with correspondence from Mark Eliason, DSHS Office Chief of Policy and Programs; Janet Adams, DSHS Quality Programs and Stakeholders Office Chief; Carol Kirk, DSHS RHC Program Manager; Monica Reeves, Monica Reeves, Crisis Services Program Manager.

DDA Policy regarding ICF/ID Admissions –http://www.dshs.wa.gov/pdf/adsa/ddd/policies/policy3.04.pdf

Report to the Legislature – December 5, 2011  http://www.dshs.wa.gov/pdf/adsa/ddd/Fiscal%20Status%20Report%20Consolidation%20of%20RHCs.pdf