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.

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!

 

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:

Recovered Wages for Caregivers

The Seattle Office of Labor Standards recovers more than $120,000 in minimum wage violations for Seattle home care providers

Below is the press release from Seattle Office of Labor Standards.  I do think the headline is misleading – it is not Seattle home care providers but only the caregivers who were employed by Aacres, WA, LLC – a for-profit supported living agency.  

you work for peanuts.jpeg

There has been a history of violations with this company – many coming from not paying their employees appropriately and understaffing with a high staff turnover rate and lack of nurse delegation services.

Aacres,, WA LLC had at least $40,200.00 in civil fines for several violations of care between June 11, 2018 and October 17, 2018.  Many of these violations repeat violations cited in previous investigations in the past year.

 

Seattle – (January 25, 2019) – The Seattle Office of Labor Standards (“OLS”) announces a $120,050 settlement with Aacres WA, LLC, a company that provides supportive living services to people with developmental disabilities. The OLS investigation found that Aacres failed to pay the correct minimum wage for 377 employees who worked or attended trainings in Seattle throughout 2017.

Alexander Njuguna is one of the workers benefiting from the settlement. “I am excited that we will get the money that is owed to us. There are so many workers over the years who complained about the injustice we faced. Being compensated will be good for all of us and reminds us that if someone does you wrong, and the law is in your favor, there can be justice. I would like to emphasize that all employees have rights and an employee should not be afraid to raise concerns in fear of retaliation by the employer.”

SEIU 775 represents more than 45,000 long-term and home healthcare workers in Washington State and Montana. “Thousands of SEIU 775 caregivers working in Seattle care for individuals with developmental disabilities in home care and supported living. Our Union works closely with employers and advocates to ensure that caregivers are treated with dignity and respect. Yet, in some cases, caregivers like other workers, aren’t treated fairly and aren’t paid what they are owed,” said Sterling Harders, SEIU 775 President. “OLS’ work to hold Aacres accountable and their fight to ensure no employer gets away with wage theft has a positive impact not just on our city’s workers, but on the level of care received by people with disabilities.”

Aacres recently announced that it was closing its King County operations after the Washington State Department of Social and Health Services cited them for serious deficiencies in care standards. A sister company, SL Start & Associates, was also shut down for violations of care standards. Aacres is a subsidiary of Spokane-based Embassy Management which is owned by a nationwide company, U.S. Community Behavioral, and New York-based private equity firm, Bregal Partners.

Please visit the OLS website for more information on Seattle’s Minimum Wage Ordinance and other labor standards.

Below is an excerpt regarding the recent (April 2018) de-certification and closure of SL Start Supported Living Services:

SL Start and Aacres are both owned by the same company—Spokane-based Embassy Management. According to business filings in Washington and Delaware and news reports, Embassy Management is a subsidiary of U.S. Community Behavioral, which in turn is owned by Bregal Partners, a New York private equity firm.

Don Clintsman, the deputy assistant secretary of the Developmental Disabilities Administration, said he understood the concern about moving clients to a sister organization, but said the two entities are different.

“The expertise that Embassy has shown and that Aacres has shown in running a supported living program give us confidence the SL Start residents will get the right service,” Clintsman said.

Excuse me – what EXPERTISE did Aacres have in running a supported living program?

Were the violations that had been accumulating mean anything to DDA?

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.

Hospitals are not Community Living

The DD Ombudsman’s Office published the report “Stuck in the Hospital”

This report discusses the crisis situation that we have gotten ourselves into by not listening to the families, caregivers and people involved.   It has been known for some time that people are boarding in the emergency rooms and hospitals because there are no safe community options for them.

With the mindset and policy that refuses to acknowledge that the Intermediate Care Facility has a place in the continuum of care and admission to these potentially life saving communities is prohibited by the administration, we have developed a situation that is much worse.

Has DDA and the legislature willingly been closing their eyes to this situation?  The fact that there has been no tracking of this by DDA or by the hospitals is neglectful when trying to understand the needs of the population.

The trauma and cost that is wasted is horrendous.  Reading these stories makes me very angry and very sad.  I cannot imagine the trauma that these people have endured while “living” in the emergency room or hospital.

As a parent of a disabled child who also experienced some of this (but nowhere near the extent described in the report) I remember times of crisis when there was no place to go.

Extreme mania and psychosis caused medical complications which necessitated a medical hospitalization.   My son was loud, did not sleep, was hallucinating and would not stay in one place.  He paced the hospital halls with family or caregivers (not enough nurses to provide his care).  At one point, we were told that we needed to keep him in his room since he was scaring the other patients.  Clearly, they did not understand that confining him to his room would only agitate him more and cause more noise and activity that would be even more disruptive.

The inpatient psychiatric unit was not much better – while they were able to manage his mania/psychosis, they were not prepared to manage medical issues or understand his intellectual/developmental disability.

The option that was suggested by the discharge team from the psych unit was “call the police” for the next crisis – meaning that my son, at age 14, would be taken to jail.

Jails and hospitals should not even be a consideration for this population in crisis.

The only place that would have been appropriate to provide both the comprehensive care needed to stabilize my son was the ICF/IID – unfortunately, he was denied admission for at least one year after a request was made and consequently had several lengthy hospitalization before this was finally approved.

Thank you to the DD Ombuds for addressing this crisis situation and developing a plan for correction.  Now that it is acknowledged, a solution can be addressed.