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:

VAPO – does not protect against predators

draft vapo amendmentWashington State RCW 74.34 – The Vulnerable Adult Protection Order does not protect our vulnerable adult population from stalking or harassing predators.

We need to change this and amend RCW 74.34 to included stalking/harassment in the definitions of abuse.

This past year a woman became obsessed with our son, Thomas.  Thomas is a young adult living in Supported Living in our community.  She believed she and a famous musician were Thomas’ biological parents and they planned on taking legal action to “regain” custody of Thomas and move him into their home.  There were several attempts to abduct Thomas from his home.

An emergency temporary protection order was easily obtained (which she immediately violated several times) but when it came time to have the VAPO signed in court, the Judge could not sign it since stalking and harassment are not written into RCW 74.34

We need a legislative sponsor for this amendment – there is a draft bill already written

Cost of Deinstitutionalization

A quick review of the hospital data from the Washington State Hospital Association provided the information below.  Granted this is far from a thorough review of the information but it does provide some insight into the problem that has been addressed by the DD Ombudsman and the recent issue at Mason General Hospital regarding the “dumping” of people with IDD at the hospitals when community care providers are unable to provide the contracted care.

This data is only for numbers of people discharged (therefore does not include people in the Emergency Departments or people that were on “observation”).  It also does not state the reason for admission but does report the service provided.  For my review, I chose the service “Organic disturbances and Intellectual disability”

June 2017 – June 2018

total discharges 967
average cost per discharge $75,332
average number of days for each person 20.3
average cost per day $3,709

Total cost for the year for these 967 people who were discharged was

$72.8 Million Dollars

Wow – think how much better spent that money would be and how much better off these people would be if that money was used wisely for a full continuum of care – meaning the RHCs, local crisis stabilization, respite and supported living

This waste of money is what the “deinstitutionalization” craze has caused.  Since these costs are not paid for from the DSHS or DDA budget, they are not counted in the cost of care for those with IDD – If I am wrong about this, please let me know and show me the sources.

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.

Endorsing a Bully

Disability Rights Washington is presenting their “Breaking Barriers” awards fundraiser this month.  Below is information from the Disability Rights Washington Website which describes this award.

Ex-Commissioner (Seattle Commission for People with Disabilities) Shaun Bickley, was chosen as the recipient for the Advocacy Award.  There are many of us in the disability community who have been victims of Shaun Bickley’s online malicious and cruel attacks, slander and libel.  We are upset about Bickley’s violations of the First Amendment as a Commissioner, falsified data and information Bickley presented to the Commission, the previous Mayor, the previous Director of the  Office of Labor Standards and the Seattle City Council.

In addition to the above allegations (all well documented in public records), Bickley had extreme disregard for the by-laws and code of conduct of the Seattle Commission for People with Disabilities.  In fact, after Mayor Durkan did not re-appoint Bickley to the Commission, Bickley took it upon himself to return to the Commission the next month and have himself voted in as the co-chair with a Commission appointed seat.  Bickley continues to refer to himself as the Co-Chair of the Commission despite not being appointed by the City Council.  This is a violation of the by-laws but evidently, Bickley is not held accountable to those by-laws.

“Bully”  is the least offensive description that many who have encountered Shaun Bickley use to describe his actions towards others.

How has it come to be that a BULLY is being honored as a recipient of this “Breaking Barriers” award?

 2018 DRW Breaking Barriers Awards! 

September 29, 2018

Each year, Disability Rights Washington presents its Breaking Barriers Awards.  These prestigious awards honor a business, an elected official or public servant, and an advocate with a disability for breaking barriers to advance the rights of and improve the lives of people with disabilities in Washington State. Specifically, Disability Rights Washington will present the following awards:

  • Advocacy Award
  • Public Policy Award
  • Business Leader Award

Advocacy Award

Disability Rights Washington presents this award to an advocate with a disability who has made significant contributions in the past year to advance the rights of people with disabilities in Washington State.

Breaking Barriers 2018 - Shaun Bickley

 

Abled/Disabled Division

Many recent issues with regards to advocacy are termed with the labels of “abled” or “disabled”.  This really strikes me as very odd, particularly given that so many have rebuked being “labeled” in the past so readily label others.

“Nothing About Us, Without Us” and “Did you even ask disabled people who would be affected”  are two of the most common statements from disabled self-advocates.

I have also found that one is labeled “abled” with no regard to disability – but it tends to mean a person who does not agree with the “disabled” viewpoint.  From those who self-identify as “disabled”  (which from my observation has no bearing on if the person is disabled or not – I know some people with significant disabilities who would never self-identify as “disabled” because they are who they are) I have witnessed extreme judgements and strong biased opinions written that are based solely on fiction.  No facts or evidence are produced to support those judgements but they are sold to others as the truth.

Also, disabled activists may be very “abled” in comparison to others who are disabled – do these “abled”  disabled activists speak for every disabled person?  In my opinion, they do not and have no interest in learning about the needs and choices of those “more disabled” then they are.  How does one even measure disability when it is so varied from one environment to another?

The disadain, hate speech, extreme judgements of disabled activists against anyone they define as “abled” (again this has no bearing if the “abled” person has a disability or not since it is in the eye of the activist) borders on pathology – delusions and fabrications of actions they believe “abled” people have done – is something that needs to be addressed and called out.

Using the “disabled card” to get away with abusing others is not okay.  It only builds walls and barriers to collaboration. One such disabled activist in Seattle swears at, calls people “sociopaths” and makes up abuse by other disabled advocates if one has a difference of opinion.  People say “he’s disabled” as if that excuses this behavior.

These are just some of the reasons that I just have to laugh at the “Breaking Barriers” award given out by Disability Rights Washington – an annual award given in several categories.  The advocate award is given to someone with a disability for breaking barriers to advance the rights of and to improve the lives of people with disabilities.

Obviously, my definition of justice and ‘breaking barriers” are very different than DRW’s definition.  They chose Shaun Bickley, the co-chair of the Seattle Disability Commission and the Secretary of Self-Advocates in Leadership (SAIL).  I totally agree that this person is very committed to his activist role but I also question his ability to build bridges and work collaboratively with others who may not totally agree with his opinion and deceit.

In addition, the issue of the elimination of special certificates which allowed people with disabilities to be able to be employed at less than the minimum wage has proven to be harmful to those involved – Mr Bickley is receiving this award for his successful campaign to ban these certificates.  This is discrimination against those with disabilities and prevents them from having jobs as learners, apprentices or messengers.