Abuse and Neglect in the Hospital

I am beside myself with anger, frustration and helplessness regarding the situation with our friend, Kevin.
Kevin has not been “on hold” in the ER at PeaceHealth St. Joseph Medical Center in Bellingham, Washington since April 24, 2019 (for this episode)

PeaceHealth

Below are messages that I received from Kevin’s mom and legal guardian last night and this afternoon.  Kevin is a 26 year old young adult.  Kevin is autistic and is a vulnerable adult with a legal guardian.

“Cheryl, the hospital let Kevin leave the hospital and he was on scrubs and no shoes running down one of the busiest streets in town. He made it to the respite bed where he was a couple of weeks ago. He ran in the middle of cars for 2 miles. They called me and let me know he was there, the hospital called me after the respite bed told them he was there. He had blood blisters in his feet. Then they had the audacity to tell Tom (respite care administrator) that Kevin checked himself out of the hospital. The police came later and took him.

“The police took him back to the hospital and told the ER manager that Kevin is gravely disabled and should not be let go in streets like this.

I have asked for a DMHP assessment, but they are giving me the run around

He has blisters on his feet and sticks stuck in his skin – the doctor is supposed to see him sometime today.

They just called me and said they will let him leave again. I guess the DMHP assessment was not done because it was done when he first got to the ER.

It’s a never-ending mess.”

I went to the Bellingham police station and they said that when they drop him off at the ER they let the hospital know that he is a danger to himself and others and needs to be in involuntary confinement.  The hospital disagrees.  I hope he does not escape again tonight – it was a miracle that he didn’t get hit by a car yesterday.

This ongoing nightmare has been reported to the DD Ombudsman, Adult Protective Services, the Department of Health and Developmental Disabilities Administration yet no action is taking place and the hospital is continuing to neglect Kevin and put his life at risk.

As a mother, nurse and advocate I am totally appalled and sickened by the lack of attention and concern that these state agencies, which are there to provide protection and care and the hospital which is to provide safe, appropriate healthcare continue with this neglect.

This is more than insane – is anyone listening?  Does anyone have any solutions?

Kevin’s mother has requested over and over again to allow Kevin to return to Fircrest Residential Habilitation Center (one of our States’ Intermediate Care Facilities) but DDA has continued to refuse saying there are no beds.  If this is an entitlement and there is “no refusal” how can DDA say there are no beds?

Is the only choice to let the hospital and state agencies continue to neglect their duties until Kevin runs into the street and gets killed by a car?  Then what?

Susannah Frame – King 5 Investigator – Please read this and help!

 

Is this “Community Inclusion?”

Seven months of trauma/crisis care and the crisis continues.

Kevin on a rid

Kevin is 26 years old and autistic.  He had been living in a supported living group home for 4 years after living at Fircrest for several years.  He started to have some behaviour issues develop in August 2018.  His psychiatrist attempted to adjust his medications but there were no positive results.  It was discovered that Kevin had elevated ammonia levels due to medication and this is what instigated the behaviour changes.

These behavior changes caused Kevin to assault his caregivers and a housemate.  The police were called, Kevin was handcuffed and taken to the hospital ER several times in the first 3 months of these changes. In November 2018, Kevin was hospitalized for 5 days due to self-injurious behaviors.  He then returned to his group home.

Two month later, on January 7, 2019, Kevin became anxious, hit a caregiver and a housemate – police were called and again Kevin was handcuffed and taken to the Secure Emergency Care Unit (SECU) .  Kevin was in a room with 4 other patients in the SECU – a unit that is critically important for the healthcare of our community but not the place to hospitalize an anxious person with autism. Kevin was very, very upset, cried and wanted to go home.  The group home stated that he was not allowed to return.

Kevin’s family took him to their family home but within 2 days Kevin became more and more upset because he wanted to go to HIS HOME.  His parents were unable to calm Kevin down and they were forced to call 911 for assistance.  Kevin again went back to the SECU for a night before he was transferred to a medical unit where he stayed from January 10, 2019 through February 20, 2019 when Kevin’s family was so devastated by the trauma he was experienced by being restrained chemically and physically in the hospital they attempted to take him home.

The home visit started out well but within a couple of days, Kevin became more and more anxious, wanting to go back to HIS HOME.

“The owners of the group home came yesterday and I think he was thinking he was going to his group home yesterday or today and that took him to the breaking point. No big changes, he just doesn’t want to be here anymore. He asked for his favorite caregiver all the time.

We just don’t know what else to do. It is such a sad situation. The group home owners told us they don’t want Kevin back until he gets his medications and behaviors fixed by the Fircrest team. DDA people are telling us there are no beds. Kevin is trapped in this mess and his father and I don’t know how to help him anymore!! 😢

Kevin again was admitted to the SECU about February 27, 2019 where he remains today.

The plan that DDA has come up with now is to find a place to have a respite bed and Kevin will be able to stay there from March 11 – March 28, while DDA helps the group home look for a house.  If Kevin does not have any behavior issues during this time he will be able to go to the new house if it is ready – if not, well – let’s not go there and let’s assume DDA will be able to provide the community supports that Kevin needs.
Kevin mowing the lawn

Please put pressure on our legislators to fund community supports – years of cuts in addition to understaffing and underpaying caregivers in addition to greatly underestimating the necessary funding for services and supports has led our state (and others) on a rapid downward spiral.

It’s time to pull ourselves out of this mess, understand the choices and needs of those we support and be realistic with funds and services.

 

Kevin – 34 days trapped, restrained, drugged and traumatized in a hospital

Why is traumatizing an autistic man allowed to happen?

How is Kevin going to heal from this abuse?

drug addiction

Kevin’s 33rd day in a hospital room. (Now it’s 34 days as of Feb 13, 2019)

The last 4 days Kevin has become increasingly desperate. The nursing staff at the Medical Care Unit where he is are such a great group of professionals. They have tried to keep him occupied, even taking him on wheel chair rides around the floor, but each day that passes he grows more restless. Kevin is a 5 year old (6’2” tall) that wants to go back to his safe/familiar room, surrounded by his things. He also wants to go for hikes, to the store, the movie theater, and the library. Now he is hitting himself in the stomach and legs with such force that his legs and abdomen are completely covered with purple and black bruises. This is the only way that he can deal with this overwhelming stress. He is limping because he hurt his left leg during the self-injuring actions that now are happening continuously throughout the day. Yesterday he became increasingly anxious with each passing hour, pleading for his “Bellingham house”. He began to scream, hit his room door and window and security was called. Kevin hit his RN and one of the security guard during the incident when they attempted to keep him safe in his room. Throughout the day he was heavily medicated with no success. At night, he managed to escape from his room and run downstairs to the hospital lobby and then outside where he was wrestled by security until Bellingham police arrived.
After he was guided back to his room by the police he was finally medicated with an IM injection of B52 (Benadryl/Haldol/Lorazepam). He has been asleep since then, in a way I feel this is better for him to stop his mental anguish and physical self-inflicted pain.

This situation is a disgrace, my child deserves better from our system. He will severely injure hospital staff or will be gravely injured by medication administration and/or being restrained.

Please contact legislator:
Sharon Showmake at 360 7867854
Luann Van Werner at 360 7867980
Doug Erickson at 360 7867682

Plead for my son to be able to go to a respite bed where he can have physical activity outside of his room, He is unable to comprehend what or why this is happening to him. He needs a less restrictive environment where he can feel free and safe.
please feel free to share!

Marcia Alspaugh

The Ableds (or Allistics/Allists)

The Ableds (or Allistics/Allists) – anyone who is not autistic.  The Ableds are named as the root of most of the problems that autistic people face in society.  The Ableds are said to go out of their way to make life harder for autistic people.  The Ableds do not understand autistic people.  The Ableds are evil and are only self-serving.  The Ableds are for eugenics.  The Ableds. . . . .

Personally, I’m really tired of reading about “The Ableds” and reading about all they are doing to impinge on the lives of autistic people.

I’m not sure if autistic people have even thought about how the so-called “ableds” have actually been there providing support so that autistic people (and all the other disabled people – specifically those with intellectual and developmental disabilities) are not isolated in their homes – oops – that is an ableist statement.   How can one do anything that isn’t ableist in the eyes of these neurodiversity activists?  And though “the abled” may not be autistic, they may have other disabilities that affect their ability to engage in meaningful activities of their own.

Many of “the abled” devote their lives to supporting those with disabilities so that the disabled have opportunities they would not have without that support.

Many disabled people, if not most, live in collaboration with their “abled” caregivers and support people.  Some disabled people may be totally unaware that their support person has another life besides being there for support. because that “abled” person is devoting their life to support the disabled person.

What I find extremely discordant is that it seems that many of the people who identify as neurodiverse also identify as non-binary and prefer pronouns of they/them.   For being so unyielding about their non-binary identity they are also very dogmatic about calling anyone who is not autistic “Abled”.  There is no non-binary when it comes to Abled vs Disabled in their minds.

 

 

Fantasy of Inclusion

Take a moment to read this blog posting “Three Strikes… and He’s Out?

Wow – this is reality for many of our family and community members – this is why we become isolated.  Inclusion for us is a fantasy.

A recent comment made to me by a King County District Court Judge regarding taking my son to a self-advocacy meeting and a Seattle Commission for People with Disabilities meeting ;

“I think you took your son  there just to bother him”   (referring to the Autistic Activist who told me that guardians are all self-serving and every person is able to speak for themselves)

Thank you, Judge, for your understanding –  I do not take my son places to bother others – is that how you view INCLUSION, Judge?

Yes, I’m sure my son’s behavior does bother people and he is not able to be appropriate in many settings of inclusion.  Waiting in line, being patient, being quiet, sitting down, keeping hands to himself, are all very difficult things which take constant support to try to have a resemblance of “appropriate” behaviour.   It takes alot of energy to provide this constant support – one of the reasons that caregivers become isolated when ensuring people with disabilities are included.  We don’t want to bother others and it’s not fun for us to try to manage our son’s behaviors in places that are difficult for him – it’s always a balancing act with a needed escape route.

So, if you see us out in our community – we are not there to bother  or frighten you – we are there to try to give our son some meaningful experiences in life.

 

The last of the Institutions – Part 5

Unfortunately, once again, Susannah Frame has mislead people in this “investigation” series on King 5 in Seattle.  There is much to clarify in this recent segment which aired December 8, 2015.

Myth 1

“Only a handful of states operate more institutions for people with developmental disabilities than Washington. And in Washington, more people live in these segregated settings than most of the rest of the country”

Fact of the matter:ICF ID Table 2013

The above table is only the STATE Operated ICF/ID’s

26 states have fewer State operated ICF/ID s for a total of 25 facilities which are home to 11, 294 people (Average per facility – 451 people)

24 state have more State operated ICF/IDs  for a total of  828 facilities which are home to 42,553 people (Average per facility – 51 people) –

Hardly what I would call a handful of state (or facilities for that matter!)

 ICF ID Chart by state 2013

Myth 2

“Since the 1970s when the deinstitutionalization trend started, 16 states have closed all of their institutions that once housed the developmentally disabled, including Oregon, Alaska, and Hawaii. And 21 states, including Idaho, have fewer than 100 residents total living in these types of public facilities”

Nursing Facility and over 16 residents 2013

CMS cost reported by states 2013

The above table is taken from the CMS-64 report.  Again, Susannah Frame is incorrect with her “facts”.  There are only 8 states that have not reported funds for a STATE OPERATED ICF/ID.

It is interesting to note of those states with no costs for a state operated ICF/ID,  6 of those reports costs for private ICF/IDs.  Some of these are quite pricey to the states that have them.

Interesting that only 12 states do not have a large State operated Facility and only 7 states have less than 100 people in these state operated ICF/IDs and Nursing Facilities.

More to come about the private facilities in each state and the funding for both the ICF/IDs and the Home and Community Based Waivers (HCBS).

I believe Ms. Frame and King 5 have some additional investigative work to do.  This is a very sloppy example of research which they are promoting.

Myth 3

According to Mr. Bagenstos, supposedly a “top Department of Justice attorney in the Civil Rights Division” Washington state “remains kind of stubbornly, an outlier”

Look at the tables above and see for yourself.  By the definition that I understand, Washington is CERTAINLY NOT an “outlier.” 

That’s all for today – more myths to be examined from this episode withing the next few days.

Data Retrieved from the following resources:

Medicaid Expenditures for Long-Term. (n.d.). Retrieved from http://www.medicaid.gov/medicaid-chip-program-information/by-topics/long-term-services-and-supports/downloads/ltss-expenditures-fy2013.pdf

(2013). Residential Services for Persons with Intellectual or Developmental Disabilities: Status and Trends through Fiscal Year 2011 (2013). National Association of State Directors of Developmental Disabilities Services (NASDDDS), Human Services Research Institute (HSRI), Association of Professional Developmental Disabilities Administrators (APPDA). University of Minnesota.

United States Census Bureau – Population Estimates – National Totals 2014. (2014). Retrieved from https://www.census.gov/popest/data/national/totals/2014/index.html

Univesity of Colorado Department of Psychiatry. (2015). The State of the States in Developmental Disabilities. Retrieved from http://www.stateofthestates.org/index.php/intellectualdevelopmental-disabilities/state-profiles

 

The Olmstead Decisions is Misinterpreted

 

 

Please support respite and crisis care

Clients & Families can’t wait another year for help. Most of us have been in the position of having to wait for services….let’s try to cut the wait time for others.

Now is the time to write the members of the House Committee on Early Learning & Human Services.  They are having an executive session on Thursday March 26, 2015.

It is very important that the YVS  (E2SSB 5243)bill be sent moved on. If it does not pass out of committee (Executive Session) it is delayed another year.

This bill will help reverse some of the damage and lost respite care from 2011 when the legislature decided to close Frances Haddon Morgan Center.

Bill information:  http://app.leg.wa.gov/billinfo/summary.aspx?year=2015&bill=5243

Please send comments of support for the bill E2SSB 5243 to the following House Committee Members:

PLEASE~If you have not as yet contacted Early Learning & Human Services Committee in the House regarding E2SSB 5243, please do so now.

You can call their office, or the Legislative Hotline at 800.562.6000 or email them.

Ruth Kagi, Chair                                                          ruth.kagi@leg.wa.gov                         District 32        (360) 786-7910

Brady Walkinshaw, Vice Chair                                    brady.walkinshaw@leg.wa.gov            District 43        (360) 786-7826

Maureen Walsh, Ranking Minority Member                maureen.walsh@leg.wa.gov               District 16        (360) 786-7836

Elizabeth Scott, Asst Ranking Minority Member         elizabeth.scott@leg.wa.gov                District 39        (360) 786-7816

Tom Dent,                                                                   tom.dent@leg.wa.gov                         District 13        (360) 786-7932

Brad Hawkins,                                                             brad.hawkins@leg.wa.gov                  District 12        (360) 786-7832

Christine Kilduff,                                                          christine.kilduff@leg.wa.gov               District 28        (360) 786-7958

Bob McCaslin,                                                             bob.mccaslin@leg.wa.gov                  District 4          (360) 786-7820

Lillian Ortiz-Self,                                                          lillian.ortiz-self@leg.wa.gov                 District 21        (360) 786-7972

David Sawyer,                                                             david.sawyer@leg.wa.gov                  District 29        (360) 786-7906

Tana Senn,                                                                 tana.senn@leg.wa.gov                       District 41        (360) 786-7894