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 issues 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.

 

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.

Evaluate the damage first

In King County, Washington State and across the nation service and employment options for people with significant disabilities are being taken away.  Washington State decided to begin the phase out of pre-vocational services and transition participants into employment or community inclusion services in 2015.  The process was completed by January 2019 in King County.

Gold Guy Kicked Out

Important Definition to understand and remember when reading any data regarding “EMPLOYMENT” in Washington State when connected to people with Intellectual and Developmental Disabilities;

EMPLOYMENT –  gross wages are anything greater than ZERO during the previous 3 month time period.

 

We ask that the JLARC report be addressed and an evaluation of the damage done be completed prior to any more transitions and forced choices be made for this population.

Despite it being an objective of Developmental Disability Administration that DDA services provide quality of life benefits for clients, such as choice, relationships, integration in the community, and competence, there is no tool to measure this and so, unfortunately, we are unaware if the person’s choice was honored or if the changes have affected their quality of life.

This is what has happened in King County –  there were 143 people in pre-vocational services prior to denial of services.  These people were employed and working an average of 14.6 hours a week – some of this time was paid and some was not paid since other activities also took place on site.

AS of May 2019, here is the breakdown of what these 143 people are doing and what services they are provided:

37  – people do not have any services or open contracts – this could be for a variety of reasons – at any rate, they are not receiving employment or community inclusion supports

62 people are authorized for employment support – only 24 of these people are actually employed though

Employment rate of 39% – working an average of 6 hours a week 

44 people are authorized for community inclusion

Community Inclusion – 4 hours a week of community activities

Due to the forced choice and transition, people in this population went from an employment rate of  99%  to about 17% employment.  This is how Employment First works in Washington State.

2015 – 143 people employed in PVS  with 99% employment rate

2019 –   of those 143 people in 2015 only 24 are “Employed”  – this is an employment rate of 17%

  • Authorized does not mean the person is actually receiving any services or supports. It just means that they are authorized to receive those services/supports if they are available.

 

  • Employment First in WA means that one MUST utilize employment services for at least 9 months prior to Community Access services – these cannot be provided concurrently. There is a special waiver for a select few who may not need to “participate” in employment services for 9 months prior to Community Access services but this is very rare.

 

  •  For Individual Employment, support hours up to 26/month are paid at $73.00/hour, above 26/month are paid at $30/hour and the total fee is adjusted up to a maximum payment of $2,700/month – this cap will be increasing though.

Information provided by King County Developmental Disabilities Administration and State Data