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:

Critical Access Hospital used as “residence” – Abuse by DDA

This practice is finally being addressed.  Most recently, the case of using a bed in a Critical Access Hospital  as a “residence” for a man with a developmental disabilities. The man, a client of Washington State Developmental Disabilities Administration (DDA) developed some behavior issues.  A crisis evaluator responded and law enforcement transported the man to the local hospital for a medical evaluation.  The man was cleared medically to be released but the licensed home refused to take him back.

That means that without a safe and appropriate place to be released to, the hospital cannot release the man even though he is not in need of medical support services.

Read the Blog “Stuck in the Hospital – Mason’s Story”

My name is John Short and I am an Emergency Medicine Physician at Mason General Hospital in Shelton, Washington. The following is my first-hand account of an ongoing injustice perpetrated by the WA state government against a disabled person:

Since DSHS/DDA has failed to find housing for Mason, we are now in a position of providing it for him. These state agencies are well aware of the laws and are using them to force hospitals to become part of the housing “crisis plan”. Where does that leave hospitals such as ours that don’t have large facilities that can absorb the needs of such clients? “Housing” is not a reimbursable diagnosis and so it is very likely that MGH will receive no funds to cover Mason’s stay. Anyone who has received a hospital bill knows how much this means. This is not to mention the 24/7 security that has been hired by MGH which would not be covered even if there was a medical condition that we were treating.

I am fully aware of the views of Disability Rights Washington and Advocacy Agencies such as The Arc which push for deinstitutionalization – consolidation and closure of RHCs.  With policies such as those we end up with trans-institutionalization such as what is happening at Mason General Hospital in Shelton, WA.

This practice is abuse by DSHS/DDA – not only of Mason but of everyone in our state.  It is wasting time, money and resources while DSHS/DDA does nothing and forces others to do their job and a much higher cost – both money and human cost.

According to the reports, Mason had been in foster care and “aged out.”  It’s not as if the issues suddenly appeared – there should have been a transition plan in place and the new group home should have been well-staffed and knowledgeable on Mason’s care and support.  DDA clearly did not do their job before Mason ended up at the hospital.  He had only been at the new home 2 days before he was carted off by the Crisis Response and law enforcement to the hospital.

 

KOMO News report

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.

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.

Senate Health Committee Hears Bill which looks to close ICF/IDD

Today SB 5594 was had public comments in the Senate Health Committee (Washington State)

There are actually some wonderful new ideas expressed in this bill (Federally Qualified Comprehensive Community Healthcare Clinic!!) but plans  to consolidate  from a combined campus of a skilled nursing facility and an intermediate care facility to just a skilled nursing facility is troubling.  This is  not explicitly written in the language but it is clear this is the goal.

The bill states a building at Fircrest must be remodeled and updated to serve as a skilled nursing facility.  Other steps must be taken to consolidate other buildings and ensure residents are provided the opportunity to stay at Fircrest or move into the community.

Given that Fircrest will only have a skilled nursing facility, what will happen to the residents who are not eligible for those services but choose to stay at Fircrest in an ICF/ID?  The bill does not address this population that currently resides at Fircrest.

“Former Fircrest School residents who fail to succeed in the community may, after repeated failures, remain in the community or may choose to move to another residential habilitation center; however, former Fircrest School residents may not return to Fircrest School.”

The other HUGE issue is that the community is far from ready to be able to accommodate the needs of the number of residents who may choose to live off campus.  Already there is a long waiting list for housing, staff and other services.

The critical issue that needs to be addressed before any changes can be made is that of supported living wages and supports.  These wages and supports need to be appropriately funded to provide the services.  This is the system that will provide stability, success and sustainability to community residential settings and is the issue that needs to be addressed as a first step to any issues of consolidation of the intermediate care facility.

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.

 

ActionDD – what are your goals?

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

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

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

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

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

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