@RealChangeNews – help us understand

 

Please, Councilmember Upthegrove, explain to us all how someone who will only be working 8 hours or less a week will enable them to make enough money to have the “independence everyone wants”

Please review the JLARC report and evaluate the changes that have already occurred before blasting ahead with more changes which will eliminate jobs and opportunities for many in this vulnerable population community.

October was National Disability Employment Awareness Month (#NDEAM).  With this, let us not forget about Person-Centered Planning and Individual Choice.

Evelyn Perez, Assistant Secretary for Developmental Disabilities Administration (DDA)  in Washington State, has started off every presentation I have seen her in the past couple of years with “We are Person-Centered and provide individual choices”  Maybe she does not understand the policies of some of the supports and services in DDA – particularly that of EMPLOYMENT FIRST in Washington State.

We believe people have choices and Washington state denies people their rights in regards to employment and community supports under DDA.  In March 2012, Washington State Legislature passed restrictive legislation with regards to employment.

Employment needs to be the first choice for adults of working age.  If after 9 months they are not satisfied and had an unsuccessful job search, only then may they request a transition to the community access program.  These are two mutually exclusive support services regardless of how few hours a person may utilize.  There is only one service option at a time.

“Please remember that Employment First does not say that people with disabilities have to work at a community job.  They can still work at a facility based program or workshop, or not work at all if that is what they really want to do.”  RTC on Community Living video “What is Employment First?

WAC 388-828-9335

How does DDA determine your employment service level?

DDA determines your employment service level using the following table:

If your

employment

support level in WAC 388-828-9205 is:

And your

employment

status in WAC 388-828-9330 is:

Then your employment service level is: And your employment service hours per month are:
None Working A 0
Working at sub-minimum wage or in job development B 0
Low Working C 4
Working at sub-minimum wage or in job development D 7
Medium Working E 7
Working at sub-minimum wage or in job development F 9
High Working G 11
Working at sub-minimum wage or in job development H 12

 

 

 

Polk and White Haven – PA Hearings

How did we come to this decision and we didn’t ask the residents or the families – and they are first”  Senator Brooks

Find out more information regarding the importance of listening to the residents, their families, guardians, care givers, community members and legislators.  There are many quality testimonies which provide a variety of different aspect of the importance of these communities.

Public hearing on the Closures of the Polk and White Haven State Centers

PA Senate Helath and Human Services Committee

A Pennsylvania Senate Health and Human Services Committee held a public hearing to address the issues of civil rights violations imposed on individuals and their families who are residents of Polk and White Haven Centers.

Thank you to the members of the Senate Health and Human Services Committee for holding this meeting.  Our voices are being heard and we appreciate the understanding and questioning for accountability and transparency from the Department regarding the process they took in their decision to evict people from their homes.

“Real life matters”  Senator Brooks

Teresa Miller, Secretary, Department of Human Services

“We’re not going to rush this process, we’re going to do it right”

I suppose this could be evidenced by how they handled the problems from Blossom:

Tragic abandonment of residents in Blossom

“This is beyond tragic. This man did not have to die, ” said Kathy Sykes, former director of intellectual disability services in Philadelphia. “This is a colossal failure of responsibility to provide basic care and supervision, a colossal systemic failure to manage a transition, a breach of trust for those who were promised their sons and daughters would be cared for, let alone have an everyday life.”

Sherry Landis, CEO, The Arc of PA testified in favor of closure of two of the 4 state Intermediate Care Facilities (ICFs).  If people’s lives were not at stake, some of her comments and inconsistent attempts to answer questions could be comical.

When questioned how the non-profit that advocates for civil rights for folks can endorse saying all centers should be closed and hence taking away the civil rights of individuals and families who’ve made a decision that this is the best option for them, Ms. Landis answered that it has always been the mission of the Arc of PA to ensure the families and the individuals are included in the community.

“It has nothing to do with being a non-profit but it has everything to do with the people that are families and members of who we represent.  This is their desire, it’s not my desire Senator, it’s their desire ”

“They can’t be isolated if they are in a neighborhood”

Sherry Landis, CEO, The Arc of PA

Clearly, The Arc of PA does not represent the residents of Polk and White Haven Centers since it is not their desire to move – this is an action that is being imposed on them and violates their civil rights.

5:35.0 – 10:41 Dr. James Latronica

10:53 – 16:08  Celia Feinsten, Exec. Director, Temple Institute on Disabilities

16:20 – 19:50  Sherry Landis, CEO, The Arc of PA

19:59 – 29:14Carl Solano, Attorney, and Former Guardian

29:42 – 37:11 Gregory Smith, MS, President of White Haven Center Board of Trustees, Consultant and Behavioral and Health Care Services

40:10 – 43:37 Rep. James comments and question to doctor regarding healthcare outcomes and the response.

43:50  – 46:32  Senator Hutchinson questioning Sherry Landis, CEO, The Arc of PA

47:05 – 53:11  Senator Street asking question – Mr. Solano answered regarding previous situations with trying to find community homes. Senator Brooks asks follow up to Celia Feinsten and Sherry Landis

53:21 – 55:41  Rep Gerald Mullery questions trauma transfer – Dr. Latronica gives excellent answer

55:50 – 1:05:54 Rep Toohil has questions for panel regarding isolation in private settings –  Sherry Landis gives her response “to be isolated when living in neighborhood is difficult”

When questioned about the under trained staff and high turnover rate – a high rate which would mean the staff are not trained and experienced, Ms. Landis responded:

“under trained staff member?” I can’t answer for the providers – we’re not a provider but I can honestly say a provider is going to do an extremely good job and make sure their staff is trained if they are going to put the lives of their people in their hands? “

Senator Brooks wraps up with concerns regarding mortality rate and cherry picking data.

1:06.50  – 1:17.30 John Hirschauer, Fellow, National Review

1:17.40 – 1:26.30    Susan Jennings – Keeping Individuals with Intellectual Disabilities Safe (KIIDS)

1:26.45 – 1:27.19  Irene McCabe Says “Thank You” – sister of Polk resident

1:27.23  – 1:43.45    Hugh Dwyer, Exec Director, Voice of Reason (VOR)

  • 1:35.35 – 1:37.35- Appendix J for Federal Regulations and Group Homes are left up to the state.

1:43.38 – 1:47.50  Rep James has a question regarding Olmstead Act – answers provided by Hugo Dwyer, Susan Jennings and John Hirschauer

1:48.52 – 1:52.12  Bill Bailey, Psychological Support Specialist – Polk State Center

1:52.13 – 1:55.45  Maria Ferrey, Qualified Intellectual Disability Professional (QIDP),  Residential Services Supervisor, White Haven State Center

1:55.55  – 1:59.34  Darrin Spann, Assistant Director, AFSCME Council 13

1:59.42 – 2:01.38  Bill Hill, President AFSCME 2334 White Haven State Center,  impassioned speech about professional skills and community

2:01.50  – 2:04.36 Tammy Luce, Residential Service Aide, Polk State Center, President of AFSCME 1050

2:07.30  – 2:16.55 Randy Seitz, President/CEO Penn-Northwest Developmental Corporation – economic impact in the community if Polk Center closed

2:18.00 – 2:35.17 Teresa Miller, Secretary, Department of Human Services and Kristin Aherns, Deputy Secretary, Office of Developmental Programs

2:35.18 – 2:43.40 –  Senator John Yudichak  – questions Secretary Miller regarding community and closure, the department is taking the choice away from residents

2:46.46 – 2:53.27    Senator Lisa Baker questions the decision making process

2:53.35 – 2:56.55  Rep. R. Lee James – questions Teresa Miller, Secretary on resident choices

2:57.04  – 3:05.53   Rep.  Gerald Mullery – Criticism of decision is well deserved- report is due on November 1 to the Governor but the Secretary knows nothing about it or that data is even being collected.

3:05.54 -3:11.02  Senator Hutchinson questions Teresa Miller

I’m even more dismayed now about how this decision was made than I was when I walked in here.  Who made the decision? Senator Hutchinson

In closing,  do you think that it’s an accurate portrayal to talk about the declining populations at the state centers when admissions have virtually closed down?

Hit the Pause Button

“Never Events”

Dangerous situation on city roads

As previously reported, PeaceHealth St. Joseph Medical Center in Bellingham, Washington was found to be out of compliance regarding the use of restraints, seclusion, isolation, patient care and emergency services in an investigation by the Washington State Department of Health.

One critical issue that this investigation missed was the issue of elopement of a vulnerable adult who ran out of the hospital, barefoot and in scrubs, and was later found over 2 miles away.  This event is called a “Never Event” by the Patient Safety Network of the US Department of Health and Human Services.

Patient protection events
Discharge or release of a patient/resident of any age, who is unable to make decisions, to other than an authorized person
Patient death or serious disability associated with patient elopement (disappearance)
Patient suicide, attempted suicide, or self-harm resulting in serious disability, while being cared for in a health care facility

It is clear from the medical record, investigation, reports from local police and family/guardian that the hospital was well aware that this patient was a vulnerable adult under a guardianship yet when this person left the hospital and the hospital staff was well aware that he ran out of the exit while being escorted to the restroom,  the hospital did not notify anyone.  Does this hospital have a policy regarding missing patients such as a special code called?  That is the standard of care and apparently this hospital does not practice up to the standard of care.

I have contacted the DOH team which did this investigation asking questions why this critical event was missed and not addressed in the investigation.  I am still awaiting a response.

I am so thankful that the outcome was not what we see in the photo below – but given the circumstances, this was a real possibility by the “Never Event”

Body of a young child covered by a sheet“.

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

Employment Supports – who pays?

We are all in agreement that people deserve to earn a fair wage – that is not in question.

Forget Me Not

Forget-me-not when making decisions about ME

 

When we are working with a population of people with significant intellectual/developmental disabilities who may often have additional mental/medical/physical/behavior disabilities we are talking about a very complex situation.  Our goals are to encourage as much independence and integration as possible and we realize that this most often includes personal supports to be in place.

For services and supports that are to be driven by person-centered planning and thinking with personal choice, most often this population has no choice or the choices are made by those who have no idea what the collateral damage of their decisions will be on those they are making the choices for.  Choices which are said to “improve the quality of life” – without asking and working with those actually involved – how are these so-called choices proven to improve the quality of life of those affected?

One very recent issue is the closure of pre-vocational training jobs and facilities.  Many people worked at these sites by CHOICE but that has been taken away because everyone deserves minimum wage.  That’s fine – but in order to do the work to earn minimum wage, many of these people need paid supports in order to find and keep a job.

The issue is not only what the employer will pay the employee but who will pay for the support needed so the employee is able to work?  We need to address this issue.

Currently the wage to a job vendor (in King County, Washington) is $73.00/hour whether an individual is receiving supports to find a job, or receiving job coaching to maintain a job.  The counties authorize a certain number of hours for each person within employment services.  There is a cap of $3,600 payment to a vendor per month (approximately 50 hours of employment for the employee who makes about minimum wage if they are actually employed.)

When the choice of pre-vocational training jobs was eliminated, most have been left with scraps.

King County PVS clients 2019

Pre-Vocational Training – clients spent an average of 58.4 hours a month on-site – time that was both work/therapy/socialization.  Clients worked an average of 43.9 hours a month of that 58.4 hour average. .  This means that all people in the pre-vocational services had an average weekly engagement of 14-15 hours.

Fast Forward to the collateral damage of the current situation due to their choice taken away –

Community Inclusion – 45 people – average of 9 hours a month (decrease of 49 hours of engagement)

Employment Services – Total 62 people –

  • 23 people are actually “employed” working an average of 8.75 hours a week (decrease of 49 hours of engagement a month)
  • Employment rate of 37% (depends on how this is figured – could be 25%,  37% or 58% – I believe the correct percentage is 37% based off of how many are in the employment service and how many actually have a job)
  • 39 people have no employment – ZERO hours of engagement

King County Previous PVS clients

 

The Take Away –

  • who is paying for the authorized funds for support?  How much and for what supports and services?  For those with NO employment are the vendors still being paid for supports?
  • We went from a high employment and engagement rate for this population to an extremely low employment and engagement rate.  What was the cost?  Not just in dollars but in meaningful life experiences.
  • Do these people feel more integrated and engaged and feel their life has more meaning than before this choice was taken away?

It behooves us to look at this and understand the collateral damage.

We believe in choice and wise use of the meager resources we have in methods that will best serve the most people.

Encourage your legislators to address the JLARC report and issues regarding person-centered planning and choice, quality of life for both the individual and their supports -we do not live and work in isolation.

 

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??