How to create a crisis – deny services

Way back in 2011 and 2012 when Washington State was “researching” issues related to caring for our DD population, there was a DD Task Force which met several times.  The goal was to discuss the future of DD Care in our state with emphasis on the consolidation and closure of the close the Intermediate Care Centers.

Several of the predictions I had and tried to communicate to other DD Advocates and legislators have come to fruition.  Please listen to the families who are the real experts and survivors.  Advocacy Agencies such as The Arc, Disability Rights Washington and other similar agencies which receive public funds to provide advocacy must abide by their  policies – policies which may not be in the best interest of those actually involved.

  •  SL Start and client neglect/abuse – I reported issues in August 2012 to the legislature.  Senator Adam Kline only provided ridicule and sarcasm in his response to me –

“But I suspect this won’t happen.  I could be wrong, but I suspect that this story’s real value to the RHC advocates is in its expected political effect.  It portrays the RHC families—even the residents—as pawns in a game in which the malevolent community advocates are the operators.  SL Start is the villain in this instance, maybe the Arc the next time, maybe the Governor.  And you are “silenced” by these conspirators.  The victims are rendered mute, while only the conspirators may speak.  The conspirators “manipulate some of our community members.”   Oh, please!”

Obviously, this Senator believes this situation is fabricated to make an issue.  I wish it was but it’s not. This Senator goes on to berate me for being an advocate for safe and appropriate care and categorizes me into the “pro RHC” side.  When will he and others realize that it’s not about sides – it’s about safe and appropriate care for each individual.

April 2018 Headline – Apparently I had some real information that needed some attention.  If only people had taken the time to listen, trauma could have been alleviated.

Washington Shuts Down Care Provider For Disabled Adults, Now Families Face Tough Decisions

Below is an excerpt from the blog post dated September 8, 2012.  I address the issue that DDA did not even consider the issue of DD clients using the hospital and ER as crisis care.

That comes from a different budget so it’s not a factor to DDA.  Well it should be because it greatly affects the PEOPLE involved in addition to adding overall cost to our state’s budget.

While the concept of the crisis team is good, why not use the facilities and services we already have in place to run this program out of? We have the space and expertise to do this already and it seems ridiculous to start a whole new program for something that we have which already works very well.

I believe this was also part of Julianne’s testimony and she is 100% correct in her assessments of the situation.

As a parent who has survived crisis after crisis, I can also tell you that you should look to the hospital emergency room data on how many people are taken there for crisis. I believe you will find a lot more information regarding where folks with developmental disabilities go when they have a crisis. I also know this is the case from working with other families and hearing their stories. Talk to the ER nurses at Seattle Children’s and ask them how many families bring their kids with DD (particularly autism) there for crisis intervention. Talk to the Inpatient Psychiatric Unit doctors, nurses, and staff and Seattle Children’s. I believe you will find staggering numbers. You will see a much different picture than one you may hear from DDD. DDD is not aware of many of these crisis admissions to the hospitals because they are not notified.

What about connecting the crisis care team with the local hospitals and emergency medical response systems? What about connecting with the Crisis Line? I know that not only in our family’s case but in many, many others, these are the systems which we accessed in times of crisis. These are the places in which we will be able to realize the extent of the crisis situation with people with DD.

Please read the report the DD Ombuds   published and consider the tasks outlined to address this critical problem.

Provide appropriate funding to community residential providers and support the ICF to provide appropriate care for DD clients in crisis.

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.

 

 

 

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?

 

 

 

 

 

Preserve and build Respite and Crisis Stabilization

Time is running out – we need a YES Vote on SB 5243

 

save respite part 4 Please read and understand why a YES vote is critical to our families who need support. This bill helps to maintain and build respite and crisis stabilization services – how can an advocate be against this bill?

According to the Action Alert sent out by The Arc – Washington State they oppose this effort to preserve respite and crisis stabilization.  This bill is only aimed at preserving and building – not shutting down and limiting the few choices that our families have for respite and crisis stabilization.

It is time to question the motives of The Arc – Washington State and ask why they want to tear apart services.  Tearing down will only hurt those we are trying to help.

Please call the toll-free hotline at 1-800-562-6000 and ask your Senator to vote YES on SB 5243 – it is for the sake of our families!

Read the bill here and decide for yourself what is in the best interest of our families and community members in need of services.

(1)(a) The Yakima Valley School shall continue to operate as a residential habilitation

The Yakima Valley School must operate crisis stabilization beds and respite service beds as the capacity of the school allows and as the needs of the community require, subject to the availability of amounts appropriated for this specific purpose.
(b) As of the effective date of this section, no new long-term admissions are permitted.
(2) The department, within available funds:
(a) Shall establish state-operated living alternatives, within funds specifically provided in the omnibus appropriations act, to provide community residential services to residential habilitation center residents transitioning to the community under chapter 30, Laws of 2011 1st sp. sess. who prefer a state-operated living alternative. The department shall offer residential habilitation center employees opportunities to work in state-operated living alternatives as they are established;
(b) May use existing supported living program capacity in the community for former residential habilitation center residents who prefer and choose a supported living program;
(c) Shall establish up to eight state-staffed crisis stabilization beds and up to eight state-staffed respite beds based upon funding provided in the omnibus appropriations act and the geographic areas with the greatest need for those services;
(d) Shall establish regional or mobile specialty services evenly distributed throughout the state, such as dental care, physical therapy, occupational therapy, and specialized nursing care, which can be made available to former residents of residential habilitation centers and, within available funds, other individuals with developmental disabilities residing in the community; and
(e) Shall continue to provide respite services in residential habilitation centers and continue to develop respite care in the community.”

This is how 2SSB 5243 currently reads. Please read and understand why a YES vote is critical to our families who need support. This bill helps to maintain and build respite and crisis stabilization services – how can an advocate be against this bill?
(1)(a) The Yakima Valley School shall continue to operate as a residential habilitation

The Yakima Valley School must operate crisis stabilization beds and respite service beds as the capacity of the school allows and as the needs of the community require, subject to the availability of amounts appropriated for this specific purpose.
(b) As of the effective date of this section, no new long-term admissions are permitted.
(2) The department, within available funds:
(a) Shall establish state-operated living alternatives, within funds specifically provided in the omnibus appropriations act, to provide community residential services to residential habilitation center residents transitioning to the community under chapter 30, Laws of 2011 1st sp. sess. who prefer a state-operated living alternative. The department shall offer residential habilitation center employees opportunities to work in state-operated living alternatives as they are established;
(b) May use existing supported living program capacity in the community for former residential habilitation center residents who prefer and choose a supported living program;
(c) Shall establish up to eight state-staffed crisis stabilization beds and up to eight state-staffed respite beds based upon funding provided in the omnibus appropriations act and the geographic areas with the greatest need for those services;
(d) Shall establish regional or mobile specialty services evenly distributed throughout the state, such as dental care, physical therapy, occupational therapy, and specialized nursing care, which can be made available to former residents of residential habilitation centers and, within available funds, other individuals with developmental disabilities residing in the community; and
(e) Shall continue to provide respite services in residential habilitation centers and continue to develop respite care in the community.”

This is how 2SSB 5243 currently reads. Please read and understand why a YES vote is critical to our families who need support. This bill helps to maintain and build respite and crisis stabilization services – how can an advocate be against this bill?
(1)(a) The Yakima Valley School shall continue to operate as a residential habilitation

The Yakima Valley School must operate crisis stabilization beds and respite service beds as the capacity of the school allows and as the needs of the community require, subject to the availability of amounts appropriated for this specific purpose.
(b) As of the effective date of this section, no new long-term admissions are permitted.
(2) The department, within available funds:
(a) Shall establish state-operated living alternatives, within funds specifically provided in the omnibus appropriations act, to provide community residential services to residential habilitation center residents transitioning to the community under chapter 30, Laws of 2011 1st sp. sess. who prefer a state-operated living alternative. The department shall offer residential habilitation center employees opportunities to work in state-operated living alternatives as they are established;
(b) May use existing supported living program capacity in the community for former residential habilitation center residents who prefer and choose a supported living program;
(c) Shall establish up to eight state-staffed crisis stabilization beds and up to eight state-staffed respite beds based upon funding provided in the omnibus appropriations act and the geographic areas with the greatest need for those services;
(d) Shall establish regional or mobile specialty services evenly distributed throughout the state, such as dental care, physical therapy, occupational therapy, and specialized nursing care, which can be made available to former residents of residential habilitation centers and, within available funds, other individuals with developmental disabilities residing in the community; and
(e) Shall continue to provide respite services in residential habilitation centers and continue to develop respite care in the community.”

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.

 

 

Catch 22 – The Arc “issue”

I recently came across an article written by Irene Tanzman on LinkedIn entitled “Advocacy Organization Catch 22” published June 22, 2015.  I would encourage reading this and in addition taking a look at some of the other insightful articles that she has published.  I felt a breath of fresh air when I first read this yesterday.

There are many concerns regarding “The Arc Issue” as I will call it.  In addition to the facts that Ms. Tanzman has addressed it is important to realize that in order for a chapter to call itself “The Arc” that chapter needs to be aligned with the agenda and policies of the national organization.   Every local and state Arc sign an affiliation agreement with Arc US that the chapter will support the policies of Arc US.  if for some reason a chapter does not support a particular position they are to remain silent and not comment.   So, regardless of what is happening in your region or state, your local Arc can only speak on policies that are dictated from the national organization.

The national policy of The Arc US (taken many years ago in the late 70’s and early 80’s) is that “community” is best and ALL people can be served in the “community.”  There are many problems with this policy:

  1. It is outdated
  2. It is not in alignment with the 1999 US Supreme Court Decision Olmstead v. L.C.
  3. It is not person-centered
  4. It does not indicate why they think this is best, or how it will be achieved.

What are some of the solutions?