Stuck in the Hospital – Seclusion violations

PeaceHealth St. Joseph Medical Center, Bellingham, Washington

Bed for restraining psychiatric patiens

Our Developmental Disability Services are failing us.  As more and more people are being left at hospitals with no place else to go, one hospital has violated patient rights by using restraints and seclusion and not practicing up to the standard of care.

This needs to be corrected and other hospitals should take note that this harmful treatment can cause physical and emotional harm and deterioration to these individuals.

MEDICARE COMPLAINT INVESTIGATION

The Washington State Department of Health in accordance with Medicare Conditions of Participation set forth in 42 CFR 482 for Hospitals, found St. Joseph Hospital (PeaceHealth in Bellingham, Washington) NOT IN COMPLIANCE with the following conditions:

 

42 CFR 482.13 (e)(4)(i)  – Patient Rights:  Restraint or Seclusion

The use of restraint or seclusion must be in accordance with a written modification to the patient’s plan of care.

  • Failure to create or modify a plan of care for a patient placed in seclusion could lead to physical deterioration and delay in obtaining appropriate treatments

42 CFR 482.13 (e)(9) –  Patient Rights:  Restraint or Seclusion

Restraint must be discontinued at the earliest possible time regardless of the length of time identified on the order

  • Failure to remove a patient from seclusion after staff observed him to be re-directable  or without significant disruptive behavior, can lead to physical and emotional harm to the patient

 

wrist restraint is applied and locked to a wrist

 

42 CFR 482.13 (e)(12) – Patient Rights – Restraint or Seclusion

When restraint or seclusion is used for the management of violent or self-destructive behavior that jeopardizes the immediate physical safety of the patient, a staff member, or others, the patient must be seen face-to-face within 1 hour after the initiation of the intervention – by a 1. Physician or other licensed independent practitioner, or 2, Registered nurse or physician assistant who has been trained in accordance with the requirement specified in paragraph (f) of this section.

  • Failure to perform or document a one-hour post application evaluation on a patient during use of physical restraints or seclusion for violent behavior can lead to possible abuse, assault, and self-injury or poor patient outcome.

solitary confinement.jpeg

42 CFR 482.55(a)(3) – Emergency Services Policies 

The policies and procedures governing medical care provided in the emergency service or department are established by and are a continuing responsibility of the medical staff.

  • Failure to perform a complete initial assessment can lead to obtaining inaccurate patient information resulting in an ineffective plan of care, treatment or services.

STATE COMPLAINT INVESTIGATION

The Washington State Department of Health in accordance with Washington Administrative Code (WAC), Chapter 246-320 Hospital Licensing, conducted this complaint investigation and violations were found pertinent to this complaint.

WAC 246-320-226 (3)(f) Patient Care Services – Restraints/Seclusion

  • The Washington Administrative Code was not met as evidenced by the fact the hospital failed to ensure staff performed and documented on-hour face-to-face evaluation after initiation of restraint or seclusion for patients exhibiting violent behavior, as observed in 3 out of 7 patient records reviewed.
  • Seclusion was used preemptively and failed to remove patient from seclusion after staff observed him to be re-directable or without significant disruptive behavior.  This can lead to physical and emotional harm to the patient.
  • Failure to initiate or modify a plan of care for a patient placed in seclusion could lead to physical deterioration and delay in obtaining appropriate treatments.

WAC 246-320-281 (4) Emergency Services – Standard of Care. 

If providing emergency services, hospitals must use hospital policies and procedures which define standards of care.

Failure to perform a complete initial assessment can lead to obtaining inaccurate patient information resulting in an ineffective plan of care, treatment or services.

#waleg #disabilities @DdOmbuds  @SFrameK5

St. Joseph Hospital Medicare and State Complaint Investigation regarding Patient Restraint, Seclusion, Emergency Services 2019

A Hospital is not a Home

Disability Rights Washington and Shawn Murinko have filed suit against the Department of Social and Health Services and the Health Care Authority as an effort to prevent other developmentally disabled Washingtonians from getting stuck in hospitals for months or years at a time, instead of receiving supportive services in the community.
There is one very critical piece of information missing from this article and the suit (unless it is buried in something that I have not been able to see) and that is the option of utilizing the state-operated Residential Habilitation Centers (RHCs) as an intermediate care facility for those who do not need the acute medical care provided in the hospital.
DDA denies admission, even short term, crisis respite, to many who request this service.  DRW and other paid advocacy agencies deny the choices of those who desire these types of pedestrian-friendly communities – often referring to them as institutions and unaware of the true communities and choices provided to the residents who call the RHCs their homes.
In recent years there has been more of a push to look at the RHCs as temporary (intermediate) homes for those who need extra supports than can be provided in a community home (SOLA, Supported Living, group home or family home) but DDA continues to refuse to honor person-centered planning for those who choose the RHC.
This refusal to allow people who request admission to the RHC is even more puzzling given the extreme crisis we have in our community homes.   In the past couple of years, at least 2 contracted supported living agencies lost their contracts (SL Start and Aacres Spokane) due to negligence and death of at least 2 residents.  These agencies provided “support” services to over 200 people.
Another recent situation concerned Kevin Alspaugh.   Kevin is 27 years old and is autistic.  He had lived at Fircrest (an RHC in Shoreline) for several years about 4 years ago.  He stabilized and returned to his home community in Bellingham and did great in a group home for the past 4 years.  Kevin then had some issues related to medication changes and became extremely agitated and his group home dropped him off at St. Joseph’s Hospital in Bellingham and refused to provide care any longer.  Keven basically lived in the SECU (Secure Emergency Care Unit) for months in isolation because DDA would not honor his family’s multiple requests to have him return to Fircrest for stabilization.
At one point, the hospital let Kevin leave, barefoot and in scrubs, and did not notify his family (mother is guardian).  Kevin ran over 2 miles at rush hour and across extremely busy arterials and found his way back to his group home.  When he arrived there, the manager called Kevin’s mother to notify her.  Kevin had bloody blisters on his feet and was lucky that he did not get hit by a car.  The police came and returned him to the hospital and the hospital requested that he be taken to jail – they did not want to care for him.  They told Kevin’s mother (guardian) that he has discharged himself.
Currently,  Miriam Hamilton (age 19) is living in the ER in Spokane and has been there since Memorial day with no end in sight.  Her group home refuses to take her back.  There is another 16 year old at Seattle Children’s who is living in the ER/Psych unit off and on for months unable to be discharged home  – every attempt at discharge in the past several months has ended in an ambulance ride back to Children’s within a few minutes to hours.   There is an 18-year-old young man “living” at Harrison Hospital in Bremerton.
I’m sure there are many others too.  Hopefully, DDA is at least tracking those in the hospitals now but the fact that we have space and trained providers at state facilities that could appropriately care for these individuals without restraining or isolating them is unconscionable.
It’s more than shameful that DRW and other paid advocacy agencies are not addressing this issue – they seem to be more concerned about their political issues and denying the choices of people than actually trying to create solutions.
I would be more than glad to have a conversation with you or provide you with more information on this very complex situation and also provide information on viable options and choices that could provide stability for these individuals.
We can do much better.

Kevin is trapped!

Many have been following the issues of those with IDD who have been dropped off and abandoned by their group homes into the hospitals.  This is not a new issue but one that has finally been acknowledged as happening.  We need a solution  – NOW

Recently, Keven, our 26 year old friend has been “on hold” in the Emergency room at St. Joseph’s Hospital in Bellingham, WA.  I sent an online complaint to the Washington DD Ombudsman and maybe the more complaints they receive, the better the chance at a positive solution – not only for Kevin but for others.

Here is the information that I submitted on my complaint – feel free to submit your own complaint regarding the issues that are happening. DD Ombuds complaint submitted May 6 2019

Today, Kevin’s mom informed me of the following information she received:

Kevin’s situation…

This afternoon after visiting Kevin at St. Joseph Hospital, I was told that if he attempts to leave the unit (SECU).

.. they will let him leave the hospital and 911 will be called.

When is this nightmare going end??

 

 

Kevin has been stuck in the hospital for 31 days – and counting

Kevin has been in St. Joseph Hospital for 31 days

My son Kevin is a 26 year old man with severe autism and he is developmentally delayed (around 5 years old developmentally). Kevin has been in a Bellingham group home for the last four years (Access Living). Before that, he was a resident at Fircrest RHC in Shoreline for five years. For the last six months Kevin has been having behavioral problems. His psychiatrist attempted to adjust his medications with no positive results. Now we know the behavioral problems were the result of increased ammonia levels due to a couple of his medications. For months he has been frustrated, sleeping all day and awake all night. Kevin has a history of poor self-regulating skills and can lose control and throw a tantrum when under stress. He is 6′ 2″ and during these instances he can harm those around him. My son has assaulted his caregivers and his roommates several times in the last six months. Each time the police were called and he was handcuffed and sent to the ER at St. Joseph Hospital. Once the crisis is over, promptly he feels bad and goes back to being a kind, loving child.

In November he was at the hospital for five days due to self-harming behaviors and hitting one of the caregivers. Again in January 7th he became anxious and hit a caregiver and a wheelchair bound roommate. Police were called and Kevin was taken to the ER. He was transferred to SECU in a room with another four patients. This unit is an extension of the ER, where patients with violent behaviors are placed on hold. Definitely not a good place for an autistic individual due to the loud screaming and the aggressive behaviors of patients around. When I went to the hospital he was crying, very scared, and asking to go home. I took him home with me and when I called his group home the next day, they let me know that he was not allowed to come back to his house. (Access Living wants to work with us and is attempting to rent a new house where Kevin can have his own space).

Kevin was with his father and I for two days as we were attempting to take care of him in our home until a new living situation was arranged. Sadly, he became agitated the third night because he wanted to go to his home in Bellingham. After he threw chairs and pushed his father and I, sadly we were not able to help him settle down. We were forced to call 911 at he was taken to the hospital again. He was in SECU that night and the next day he was transferred to a medical care unit. He has been there since the 10th.

We have been trying to get help from DDA but they have no answers. I contacted the admissions office at Fircrest on January the 11th and was informed that there was a great chance of them to accept Kevin on one of their respite beds since he was a Fircrest resident in the past. I informed Kevin’s care manager, but he let me know that it was out of his hands and the paperwork needed to be reviewed first by a DDA committee in Everett. It took from January 10th until February 4th for the file to be sent to Fircrest to apply for a respite bed. I called the person in charge of Kevin’s case in the Everett DDA office on 2/5 and he let me know that there are no respite beds available “anywhere” for my son at this time. We are desperate at this point, as the hospital is not the best place for an individual like Kevin.

St. Joseph Hospital staff have been great with my son (I work on the same floor as a floor RN), but Kevin will be better served in a place where he can go outside for walks and have more freedom to ambulate. He is in his hospital room 24/7 and this is harmful to his mental/emotional stability. The only good news is a new psychiatrist who is an expert on autism took Kevin’s case and she has changed his medications due to toxicity found in his blood work. We have already seen remarkable positive changes in his behaviors but the last four days he has started to do self-harm due to the stress of being confined for such a long time.

We feel helpless and discouraged since we are not able to help our child. Putting Kevin through this experience is wrong! More has to be done to help DD patients and their families during crisis situations like this. Please feel free to share our story, Kevin deserves better from the system.
Marcie Alspaugh

Addendum:  Video from June 2014 with footage of Kevin while he lived at Fircrest – Kevin is seen at 1:12 and 1:26 in this short video:

Clarity!

 

I am making a proposal that Washington State should establish a “High Cost Review Committee” with representatives from Developmental Disabilities Administration,  Aging and Long Term Care Administration, Behavioral Health, and other representatives from various professional disciplines, community advocacy groups and families, that are critical to the care of this population.

Listening to the discussion that took place at the Joint Legislative Executive Committee on Aging and Disability (November 30, 2017) I was struck by the different approach to fiscal discussions for long term care settings compared to residential settings for people with intellectual and developmental disabilities.

I was impressed with the information shared.  The presenters were clear in the assessment of needs and costs and that those individuals with higher support needs have a higher cost of care.  They take this information into account when making decisions for aging clients and also those with dementia.  The presentation for Adult Family Homes indicated there are 17 different acuity levels for residents with correpsonding reimbursement rates.

One Senator asked for Clarity – clear ideas of the finances needed to try to meet the service need.  Without a clear idea of the cost they are unable to understand what is needed.

I question why this approach is not used when making fiscal decisions for residential care within the Developmental Disabilities Administration.  The data regarding acuity of care and costs is available to use but is not shared with those making budget decisions.  Without an understanding of the number of residents in each level of acuity (Levels 1-6), the legislators are not able to make an informed decision.

Last year I was accused by one state Senator  (Senator K.) of fabricating costs attributed to my son who lives in supported living when I shared those costs with another Senator (Senator C.).  All I did was forward the DDA documents I receive to Senator C- if there was fabrication it was not on my part.  Senator K stated that the data was irrelevant to the situation (cost of care of high support resident – seems very relevant to me)

Senator K wrote:  “Unfortunately the numbers you are using are misleading and imply that community care services are more expensive than RHC care.  Since the state pays for both, we have significant experience in many different clients and settings, the various elements of costs.  We have used averages for our proposals because that is the most accurate way to account for a group of clients and settings.  On average, community care is much less costly than RHC care.”

Using the AVERAGE cost of care is one reason that there is a crisis.  It obviosly does not work to use this average for the budget purpose of the cost of care for residents with high support needs.  Doing so will cause extreme underfunding of appropriate and mandated services.  Doing so is neglect.  My response to Senator K is linked here.

New Hampshire understands this fact about cost of care.  They realized that in order to provide effective community based services to all individuals with IDD- including those with significant medical, behavioral and psychiatric needs, they needed a collective of responsible parties – policy makers, agea agencies, service providers, families and communities to play a role.  The NH High cost Review Committee was formed in efforts to sustain and improve services for New Hampshire’s most vulnerable citizens.  This report from the High Cost Review Committee has critical information on providing appropriate and cost-effective services for this population.

The Human Services Research Institute (HSRI) compiled information regarding the percent of the waiver budget for states was used by the 5% most expensive residents.  This report was done in 2009 and they had hoped to update.  I inquired into an updated version and unfortunately one has not been produced.

In addition to asking for an updated report of the 5% most expensive service users, I shared my concern about using “average” cost of care with the polcy analyst.

” My concerns are that the “average” cost of all people with IDD is used when looking at what it would cost to move people out of the ICF into a community home. Typically, the people in the ICF are those with higher support needs (hence higher cost) in the community and if one uses the average cost for community they will greatly underestimate the actual cost and the funding will not be available to safely care for the population. ”

This is the reply that I received from the HSRI Policy Analyst –

Your concern about the average cost of serving people is a valid one, as an average often masks outliers that can be important to consider.

 

HSRI 5 percent

 

 

Senator K and others in the legislature who believe the “average” cost of care is the number to use when trying to clarify budget needs – please ask for more accurate data from DSHS and DDA regarding at least the average cost of care for each assessed level of service.  That information would be much more useful in forcasting cost and services than the overall average.

 

 

 

 

Spinning (a tale)

Drop Spindle

I am a hand spinner and greatly enjoy the various fibers in my hands, spinning onto a drop spindle to make yarn.  From the spindle, the yarn is wound onto a device from which a skein is made.  The yarn becomes a bit stretched on the device and when removed, the yarn shrinks to its final length.  The skeins are labeled by their yardage and so this natural shrinkage needs to be taken into consideration.   The spinner needs to know how much the yarn will shrink in order to accurately label the yardage so that the knitter knows how much to purchase in order to make and finish the project.

There are some agencies, advocates, and legislators who spin a story regarding the support, care needs, costs of care, residential setting choice and person-centered planning for many in our community who live with intellectual and developmental disabilities.

The problem we face is a matter of underestimating costs rather than overestimating.  Much of the problem is that the legislators use “averages” of the whole for budget forecast rather than “averages” for a specific population.

Last year I provided legislators with the costs of care for my son who resides in supported living.  He had been a resident of the intermediate care facility  (ICF) and only moved to supported living due to issues of medical/nursing care that could not be met at the ICF.  Last year, his cost in the community was higher than the cost of care in the ICF.  This year his costs will be higher still due to needing more 1:1 support and the fact that he lives in Seattle and the agency (not state funds) must pay the caregivers the Seattle minimum wage ($15.00/hour) rather than the contracted state reimbursement (wages start at roughly $11-12.00/hour)

One of our seasoned State Senators wrote ” Obviously some clients need more support than others.  Unfortunately, the numbers you are using are misleading and imply that community care services are more expensive than RHC care.  Since the state pays for both, we have significant experience with many different client and settings, and the various elements of costs.  We have used averages for our proposals because that is the most accurate way to account for a group of clients and settings.  On average, community care is much less costly than RHC care.

As follow up, this senator then wrote “The cost of community care is lower than the cost of RHC care.  That is known by our budget writers because we pay the bills.  Individuals have variances, but the OVERALL cost is lower.  We have had hundreds of RHC clients transition to community care so we have real experience and real data on this.  By providing your personal experience to Senator you have convinced her that it applies to the overall cost of care, and that is not accurate or factual.  I hope you will help me correct the record. “

I did follow up with a response as to why the costs I reported were very important to take into consideration since my son was representative of the type of resident in the ICF that may desire to move to a community home with supported living.  I wrote ” The issue of providing data for my son is extremely relevant to this issue, it is factual and accurate.  I provided the exact documents that were provided to me by DDA so if for some reason they are inaccurate, that is an issue that needs to be addressed with DDA.  I would be more than glad to provide you with the same information.”   I did not hear back from her.

With the upcoming legislative season just around the corner, this annual issue will again come to the surface.  We need not only affordable housing but trained caregivers for these people with higher support needs.  We need to look at the cost of care for this specific population – not the OVERALL AVERAGE as the senator above thinks is more accurate.  I totally disagree with her assessment and understanding of the care needed and cost to provide this care.

New Hampshire has developed a High-Cost Review Committee which looked specifically at those with higher support needs, their Support Intensity Scale score and the costs of care.  Below is a graph documenting some of the costs attributed to people in different residential settings in New Hampshire.

NH HCBS costs June 2015

The graphs below were generated by the data provided by Washington State Developmental Disabilities Administration 2017 Caseload information.

WA State HCBS costs per setting August 2017Budget from actual costs not average

If our legislators continue to use the OVERALL AVERAGE cost as the measure for cost of care, we will continue dive into deeper crisis.

In order to best serve our community members and start to crawl out this hole, we need to fund appropriately.  That means that we need to look at the different types of support needs and numbers of people in those categories.  This information is readily available through the Developmental Disabilities Administration – one just needs to ask for the right information and use it.

Developmental Disabilities Administration 2017 Caseload Information

dshs.wa.gov/…/Final 2017 DDA Statewide Caseload Information Handout_10-13-2017.pdf

Developmental Disabilities Administration 2017 Caseload and Cost Report

 

Budget downsizes (closes) Fircrest

Write to your Washington State Legislators and the leaders of both chambers:
Senator Sharon Nelson, Senator Mark Schoesler, Representative Dan Kristiansen and Speaker Frank Chopp – remind them of the need for a continuum of care and remove these sections from the budget.

 

Dear Speaker Chopp,

I am a constituent and am writing to you with some concerns regarding ESSB 5048 – particularly Section 205 – Part 1 (K), Part 2 (C) and Section 206 Part 18.   I am also a registered nurse specializing in the care of adults with intellectual and developmental disabilities and a parent of a young man who recently transitioned from Fircrest to supported living in the community.

These sections state that appropriated funds will be  “provided solely for transitioning clients from Fircrest school residential habilitation center into community settings.” The clients from both the nursing facility and the intermediate care facility would be forced to move and it appears that this is a step towards closing Fircrest.

There are many concerns raised regarding attempts to close or downsize Fircrest through a budget proviso.  It is written in law (Olmstead v L.C. 1999)  and supported by CMS regulations that a person has a choice to live in an intermediate care facility.  In addressing the issue of changing care from an institutional placement to a community placement, there is a three part test to determine if community placement is appropriate:

  1. The State’s treatment professionals have determined that community placement is appropriate
  2. The transfer is not opposed by the affected individual and/or guardian
  3. The placement can be reasonable accommodated by the resources available to the State

If the above points are satisfied, then it is appropriate to have people move but I know that they are not met for the majority of the residents who live at Fircrest or other RHCs in our state.

It is important to address the crisis we have with community care before taking steps which would only increase the risk of harm to some of our most vulnerable citizens.

It is critical to keep our RHC communities open to best serve the diverse population of people with intellectual and developmental disabilities.